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Changes In The Sense And Perception Of Self In Individuals With Aphasia

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Title:
Changes In The Sense And Perception Of Self In Individuals With Aphasia
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English
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Nakano, Erline Vieira
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University of South Florida
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Tampa, Fla
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Aphasia
Qualitative methods
Ethnography
Dissertations, Academic -- Aural Rehabilitation -- Masters -- USF
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bibliography   ( marcgt )
theses   ( marcgt )
non-fiction   ( marcgt )

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Abstract:
ABSTRACT: Little is known about the perceived changes in identity and sense of self in individuals with aphasia. Seminal research using qualitative methods and personal narratives has been conducted in England regarding the experience of living with aphasia (see for instance Parr, Byng, Gilpin & Ireland, 1999; Parr, Duchan & Pound, 2003; Byng, Pound & Hewitt, 2004), but the use of such methodologies is still emergent in the United States. In addition, despite the great achievements of the disabilities movement in countries such as the U.S. and the U.K., individuals with aphasia have remained largely at the margins due to the very nature of their impairment (Pound & Hewitt, 2004). How can one reflect upon and adjust to the changes brought about by a disability when one is devoid of words?According to Brumfitt (1993), individuals with aphasia, especially during the acute stages of recovery, have the tendency to idealize their "prior self." However are these identities transformed in ^relation to the acquired disability as individuals enter the chronic stages? If so, are these changes perceived in the same manner by survivors and caregivers? The purpose of the present study was to investigate these perceptual changes in identity using a qualitative ethnographic methodology. Seven individuals with aphasia and five caregivers participated in in-depth ethnographic interviews addressing perceived changes in sense of self after the onset of aphasia. Interview analysis resulted in ethnographic narratives in which participants and caregivers reflected on their perceptions of change and adaptation to disability. Common themes included the discovery of new identities, the gradual compromise between rehabilitation and adaptation, divergent perceptions of change, and the role of support groups during the rehabilitation process. The study was concluded with reflections from the investigator and the participants on how the results from this research could be used in our clinica l practice.
Thesis:
Thesis (M.A.)--University of South Florida, 2005.
Bibliography:
Includes bibliographical references.
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by Erline Vieira Nakano.
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Title from PDF of title page.
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Document formatted into pages; contains 459 pages.

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aleph - 001911251
oclc - 173683330
usfldc doi - E14-SFE0001190
usfldc handle - e14.1190
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Changes in the Perception and Sense of Self of Individuals With Aphasia: An Ethnographic Study by Erline Vieira Nakano A thesis submitted in partial fulfillment of the requirements for the degree of Master of Science Department of Communicati on Sciences and Disorders University of South Florida Co-Major Professor: Jacqueline Hinckley, Ph.D. Co-Major Professor: Tempii Champion, Ph.D. Cheryl Paul, M.S. Date of Approval: July 25, 2005 Keywords: aphasia, qualitative methods, ethnography Copyright, Erline Nakano

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Dedication To all the participants in the study and their families – may golf clubs, gems, guitars, weights, watercolors, books, asanas, and conversations at the kitchen table be always present and celebrated! To my husband, Luis (Gato) Nakano, for the constant love, patience, support, laughter, and our conversations about life, th e universe, and everything. I love you and I could not have made it without you!! To my family and my in-laws for the l ove, the art, and the science, and the wonderful food and caring! To Lisa Geiszler and Chri s Jennings for their support and friendship and for sharing with us so many special moments in the lonely mountains of Virginia. Thank you for giving Luis and me a sense of belonging when we so desperately needed it! To you Lisa, in particular: thank you for being such an inspiration for myself and other foreigners in Charlottesville and for infusing us with a sense of community, acceptance, and nurturing. Thank you for providing us with a sp ace where we could yearn for our pasts and look forward to our future s! Teacha Lisa! Tachu Lama! And finally, to you always Dad – The Xingu is everywhere. Papaya cheers!

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Acknowledgments I would like to thank Vicki Gray, La rry and Susan Smith, Bob and Diane Lombard, Edie Dungan and Cathy Harper, To m and Erica Boyle, Curt, Christie, and Courtney Mathes, and Barbara Newborn for thei r patience, their insight, their trust, and their invaluable insight. None of this woul d have been possible if it weren’t for you! My dearest thanks to Mr. and Mrs. Johnson for allowing me to reproduce their portfolio in this project and for teachi ng me so much about therapy and life! Thank you to my husband, Luis, for the emo tional and technologi cal support, the broad shoulders and the patient ears!! Conseguimos, Seu Gato! Thank you to Robin Danzak for our coffee/tea time at Borders, for the delicious Indian soup, and for your constant and s upportive friendship. Thank you for your insight! Thank you to Dr. Cynthia Ochipa at the James A. Haley VA in Tampa, Florida, for allowing me to work on personal portfo lios with some of our clients during my traineeship. Thank you to all the members of the Connect Centre in London for their generosity and insightful comments on a phasia therapy and life with aphasia. Thank you to the American Speech and Hearing Association (ASHA) for the SPARC scholarship which enabled me to visit the Connect Centre. Thank you to Dr. Champion and Miz Paul for their support and comments. Thank you to Dr. Jacqueline Hinckley, for believing in this project.

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Life teaches us who we are Salman Rushdie

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i Table of Contents List of Figures................................................................................................................ ....vi ABSTRACT....................................................................................................................... ix Chapter 1. Introduction.................................................................................................1 The Stroke..................................................................................................................... ..1 Vicki.......................................................................................................................... ..2 Larry and Susan..........................................................................................................3 Bob and Diane.............................................................................................................4 Edie and Cathy............................................................................................................6 Tom and Erika.............................................................................................................8 Curt and Christie.........................................................................................................9 Barbara......................................................................................................................11 Literature Review..........................................................................................................12 The Self, Memory, and Stories.....................................................................................13 Bridging the Chasm......................................................................................................18 Language Rehabilitation...........................................................................................22 What Is It Like Inside?..............................................................................................25 Chapter 2. From Science to Ar t (Or Somewhere In Between)...................................28 Qualitative Methods......................................................................................................28 Qualitative Methods and Aphasiology......................................................................31 Challenges in Qualitative Research..............................................................................32 Recanting Authority..................................................................................................32 Learning by Doing....................................................................................................33 Describing Before Theorizing...................................................................................33 Laminating and Triangulating...................................................................................34 Chapter 3. The Search for Stories...............................................................................37 Who Are The Survivors?..............................................................................................37 Exclusion Criteria.....................................................................................................38 How Was Data Collected?........................................................................................38 How Was The Information Analyzed?.....................................................................40 Why Stories?.............................................................................................................41 How Were The Stories Sequenced?..........................................................................42

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ii Chapter 4. God’s Little Joke.......................................................................................44 Testing Behavior...........................................................................................................48 Therapy Marathon.........................................................................................................48 I Love You and I Hate You...........................................................................................52 Dear Ms. Gray,..............................................................................................................54 Social......................................................................................................................... ....60 What Do You Wanna Know About Me?......................................................................61 Growing Up..................................................................................................................63 A fate worse than death.................................................................................................65 Who am I?.....................................................................................................................7 1 March 18 2005..............................................................................................................75 Chapter 5. Diamonds are a Girl’s Best Friend...........................................................77 Through the Looking Glass..........................................................................................77 New Driver on the Rainy Road.....................................................................................79 Transition..................................................................................................................... .80 The Mother of all Gems................................................................................................82 From Bridges to Business and Counter Intelligence Core............................................86 Match Made in Heaven and Two Angels to Go with It................................................89 The Making of a Jeweler...............................................................................................91 From Santa Claus to th e Budweiser Bubble.................................................................94 From ABCs to Journaling.............................................................................................96 20/20.......................................................................................................................... .100 Blessings and the Telephone.......................................................................................101 Golfing and the Four Musketeers...............................................................................104 Progress, Limitations, and a Little Grammar..............................................................106 Miracle Cure?..............................................................................................................109 Who Am I?..................................................................................................................111 The Twinkle In The Eye Of The Jeweler....................................................................112 Chapter 6. While My Guitar Gently Weeps.............................................................116 Hello Goodbye............................................................................................................116 All Together Now.......................................................................................................120 Tell Me What You See...............................................................................................122 No Reply.....................................................................................................................12 7 And I Love Her...........................................................................................................132 Helter Skelter..............................................................................................................133 Here, There, And Everywhere....................................................................................136 Eight Days A Week....................................................................................................138 A Beginning................................................................................................................142 Do You Want To Know A Secret?.............................................................................150 Don’t Ever Change.................................................................................................151 Crying Waiting Hoping...........................................................................................153 The Long and Winding Road..................................................................................154 Lonesome Tears in My Eyes.......................................................................................156

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iii She’s Leaving Home...............................................................................................157 While My Guitar Gently Weeps.................................................................................160 Ask Me Why...............................................................................................................167 Get Back vs. All Things Must Pass........................................................................167 I’m Looking Through You......................................................................................174 Free as a Bird – Drive My Car................................................................................177 We Can Work It Out...............................................................................................178 What Goes On In My Life..........................................................................................179 Chapter 7. Light Bulb!..............................................................................................182 “Poor me… Poor me!” Baloney! Baloney!................................................................184 Gruas y Cucarachas.....................................................................................................188 To the best nurse, with love........................................................................................189 Cupid’s Broken Arrow................................................................................................193 Moving Saga...............................................................................................................194 My Angel....................................................................................................................198 Can’t talk!...................................................................................................................2 00 One hand, one hand… What to do?............................................................................204 Seasoned Sailor...........................................................................................................205 Feel Changes?.............................................................................................................209 Chapter 8. The Rebirth of a Salesman......................................................................217 Young Diagnosticians in the Field..............................................................................217 First Client Assignments.............................................................................................219 Girlfriend and Boyfriend First....................................................................................220 Speaking Out! Convention..........................................................................................222 The Man She Fell in Love with..................................................................................226 Hospital Experience....................................................................................................229 Rehab.......................................................................................................................... 230 Home Sweet Home.....................................................................................................234 Falling Through the Insurance Cracks........................................................................236 Contacting the Source.................................................................................................238 From “Yes” and “No” to Community Outreach.........................................................240 Discovering Acupuncture… and Wine.......................................................................244 Faith – The Family Heirloom.....................................................................................246 Equal Rights................................................................................................................247 Old Friends, New Friends...........................................................................................249 A True Floridian Ventures Out...................................................................................250 The Birth of a Salesman..............................................................................................252 Becoming a Father......................................................................................................254 From Sales to Golfing.................................................................................................258 Has Tom changed?......................................................................................................261 Chapter 9. Survivor..................................................................................................263 The Lonesome Cane...................................................................................................263

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iv Barking Announcement..............................................................................................266 Roots.......................................................................................................................... .266 Father and Mother.......................................................................................................267 Curt’s Siblings........................................................................................................269 Curt and Christie.....................................................................................................270 Music, Band, and Love...............................................................................................270 The Sweetest Clarinet.............................................................................................270 Saxophone...............................................................................................................272 Hawaii to Granite to Florida.......................................................................................274 Pass me the Beer and Play me the Blues....................................................................278 Genetics?.....................................................................................................................2 83 The Art of Parenting...................................................................................................284 Perpetual Learner........................................................................................................287 Anthropology..........................................................................................................288 Exercise Physiology................................................................................................289 Counseling..............................................................................................................292 Stroke Inside and Out..................................................................................................294 The Couch-Potato Syndrome......................................................................................302 Butting Heads..............................................................................................................303 Father and Children.....................................................................................................305 Zach is Zach............................................................................................................305 Nursing in the veins................................................................................................308 Late Blooming and the Social Butterfly.....................................................................312 No Cane......................................................................................................................31 3 The Four Musketeers and the “Sissy Game”..............................................................314 Old Friends..................................................................................................................31 6 On the Road Again......................................................................................................317 Speaking Out!.............................................................................................................318 Motivational Speaker..............................................................................................318 Personality...................................................................................................................3 19 It Happened – Get Over It!.........................................................................................323 Soul Mates..................................................................................................................324 Chapter 10. Dharma....................................................................................................327 Foreshadowing............................................................................................................327 Discovering Newborn.................................................................................................330 Speaking Out!.............................................................................................................331 Going to the Gardens..................................................................................................333 I found the journey, and the journey found me...........................................................334 Intuition...................................................................................................................... .338 A foreigner in a strange land.......................................................................................339 Relationships...............................................................................................................341 Professional life and Dharma......................................................................................343 Overcoming hurdles in the present.............................................................................346 Language and Self.......................................................................................................347

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v Grateful for aphasia?...................................................................................................349 Chapter 11. In Exile in One’s Own Land...................................................................351 Moving On..................................................................................................................351 Same But Different.....................................................................................................351 Vicki and Larry.......................................................................................................353 Bob and Edie...........................................................................................................355 Tom.........................................................................................................................358 Curt and Barbara.....................................................................................................359 Moving Out of Exile...................................................................................................360 Chapter 12. Where do we go from here?....................................................................363 Conclusion..................................................................................................................363 References..................................................................................................................... ..367 Websites....................................................................................................................... ...374 Appendix: Mr. Johnson’s Li fe History Portfolio............................................................375 My Childhood.............................................................................................................376 Grandma Fritz’s doll...............................................................................................376 Paul, the mechanic..................................................................................................376 The Youngest Eagle Scout......................................................................................376 The Navy.....................................................................................................................38 3 R.O.T.C...................................................................................................................383 The Square Knot Admiral.......................................................................................383 & Boot Camp..........................................................................................................383 WWII......................................................................................................................383 Brothers in Guam....................................................................................................383 After the War..............................................................................................................405 University of Florida...............................................................................................405 Fraternity Delta Chi................................................................................................405 Falling in Love........................................................................................................405 Munchkins...............................................................................................................405 Archery & Championship...........................................................................................417 Hunting Expeditions (Minnesota, 1992).....................................................................420 Adventures in Dog Sledding – El y, Minnesota – February, 2002..............................431 My Stroke – November, 2004.....................................................................................448

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vi List of Figures Figure 1. Schematic of the empirical ego (based on James, 1910, p.46).......................15 Figure 2. Vicki’s calendar for April 2001 when she had the “Big Ben.”.......................46 Figure 3. Vicki’s calendar, one mont h after her stroke (May, 2001).............................47 Figure 4. Vicki’s calendar, two months after her stroke (June, 2001)...........................54 Figure 5. Vicki’s calendar three mont hs after her stroke (July, 2001)...........................61 Figure 6. Vicki’s calendar four months after her stroke (August, 2001).......................71 Figure 7. Vicki’s calendar five months after her stroke (September, 2001)..................75 Figure 8. Vicki’s calendar six months after her stroke (October, 2001)........................76 Figure 9. Bob at the Speaking Out! convention, 2004.................................................121 Figure 10. Bob in his element........................................................................................163 Figure 11. Dialogue of left and right hands over the cords............................................164 Figure 12. Soulful strumming........................................................................................164 Figure 13. A glimpse into the past.................................................................................165 Figure 14. Twin guitars..................................................................................................165 Figure 15. The Master a nd his Instrument.....................................................................166 Figure 16. Edie with newly born Cat hy in her arms, and her husband..........................197 Figure 17. Edie wearing her nurse unifo rm and carrying Cathy, a few months later, together with her husband....................................................................198 Figure 18. Edie painting in her apartment......................................................................207 Figure 19. A glimpse at Edie’s palette...........................................................................208 Figure 20. The artist at work..........................................................................................208

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vii Figure 21. Edie’s “The Four Seasons.”..........................................................................211 Figure 22. Cathy and Edie in front of the Glamorous shop picture and Edie’s nursing award................................................................................................214 Figure 23. Mother and daughter posing in our improvised Glamorous shop.................215 Figure 24. Improvisation number one............................................................................216 Figure 25. Improvisation number two............................................................................216 Figure 26. Erika and Tom in Las Vegas on their wedding day......................................218 Figure 27. Erika and Tom at the Speaking Out! convention, 2004................................223 Figure 28. Erika and Tom after delivering their speech.................................................225 Figure 29. Tom and Ryan a few y ears before Tom’s stroke..........................................255 Figure 30. Erika and Tom during Christmas in 2004.....................................................262 Figure 31. Curt draws his family tree.............................................................................267 Figure 32. Curt and Christie at sixteen...........................................................................272 Figure 33. Curt receiving the first prize trophy from his mentor, Halsey Miller, in Roxana, Illinois, 1979 after squatting 755 lbs..............................................291 Figure 34. Curt (in blue pants) spotting hi s brother Greg as he squats 500 lbs in St. Louis, Missouri, 1978..............................................................................292 Figure 35. Curt deadlifting 650 lb s in Alton, Illinois in 1995........................................292 Figure 36. Grandma Thelma holding Shawn and Grandpa Dutch with one of the family pets.....................................................................................................300 Figure 37. Curt and Zach in Panama Cit y, Florida, when Zach was about four years old........................................................................................................306 Figure 38. Curt and Zach at Di sneyworld in Orlando, Florida......................................307 Figure 39. Herb Silverman and Curt at the Speaking Out! opening reception, 2004...............................................................................................................319 Figure 40. The Mathes family in Siesta Key, Florida. (Standing, left to right) Courtney, Zach, and Shawn. (Sitting, left to right) Curt, with Charley on his lap, and Christie..................................................................................326

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viii Figure 41. Barbara Newborn at the Speaking Out! convention in 2004........................332

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ix Changes In The Perception Of Self In Individuals With Aphasia. Erline Vieira Nakano ABSTRACT Little is known about the perceived changes in identity and sense of self in individuals with aphasia. Seminal resear ch using qualitative methods and personal narratives has been conducted in England rega rding the experience of living with aphasia (see for instance Parr, Byng, Gilpin & Irela nd, 1999; Parr, Duchan & Pound, 2003; Byng, Pound & Hewitt, 2004), but the use of such met hodologies is still emergent in the United States. In addition, despite the great achieve ments of the disabilities movement in countries such as the U.S. a nd the U.K., individuals with a phasia have remained largely at the margins due to the very nature of their impairment (Pound & Hewitt, 2004). How can one reflect upon and adjust to the change s brought about by a disability when one is devoid of words? According to Brumfitt (1993), individuals with aphasia, especially during the acute stages of recovery, have the tendency to idealize their “prior self.” However are these identities transformed in relation to th e acquired disability as individuals enter the chronic stages? If so, are these changes pe rceived in the same manner by survivors and caregivers? The purpose of the present study was to i nvestigate these perceptual changes in identity using a qualitative ethnographic me thodology. Seven individuals with aphasia

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x and five caregivers participated in in-depth ethnographic interviews addressing perceived changes in sense of self afte r the onset of aphasia. Inte rview analysis resulted in ethnographic narratives in which participan ts and caregivers reflected on their perceptions of change and adaptation to disability. Common themes included the discovery of new identities, the gradua l compromise between rehabilitation and adaptation, divergent percepti ons of change, and the role of support groups during the rehabilitation process. The study was conclude d with reflections from the investigator and the participants on how the results from th is research could be used in our clinical practice.

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1 Chapter 1. Introduction “The moment of a stroke, even a relatively minor one, and its immediate aftermath, are an experience in chaos. Nothing at all makes sense. Nothing except perhaps this over whelming disorientation will be remembered by the victim. The st roke usually happens suddenly. It is a catastrophe. (…) An explosion quite literally is occurring in her brain, or rather, a series of explosi ons: the victim’s mind, her sense of time and place, her sense of self, all are being shattered if not annihilated.” Arthur Kopit The Stroke “How long has it been since your stroke?” “Nine years, going ten.” “Almost six years.” “I guess… About five years.” “Three years and two months.” “Hmm… long time…” “A long time ago.” “Thirty years.”

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2 “Can you tell me how it happened?” Vicki Tampa, Florida, April 4th, 2001. I was home with my dog, in the morning. I think it was in the morn ing… You know when you have an ice cream headache and you have that rush running through you? Well… It was like that. Only that I just got the rush. I never felt the headache. I went for aspirin, and I thought, “No, I don’t really have a headache.” I felt really weird, I didn ’t feel better. I don’t really know what time it was. I took a shower … I took my dog… I was taking my dog out, and all of a sudden I lost vision in my right eye… I think I threw up… My leg, weak… I went to my remote, I couldn’t figure out my remote! I had a message in my vo ice mail, and I couldn’t retrieve… I couldn’t remember how to do it. I looked at my dog and said, “Miles, we’ve got to get out of here.” It never occurred to me that I wa s having a stroke, or call 911 or anything… I took my dog out to find a friend in the neighborhood, and I said, “Something has happened to me, and I need your help,” and she stood up and she said, “Well, we’ve known you for three years and we always thought that you needed help!” But then she looked up at me, she looked at her husband an d she said, “Take Miles home (my dog) and we’ve got to ge t Vicki to the hospital.” She is a nurse, so she

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3 knew that I was either in the throes of the st roke, or it had just happened… But because we didn’t have the exact time that they can have that… that I could have that shot, then I didn’t get it. I was in the hospital for a week, and they did all the tests… At first they said it was high blood pr essure… My blood pressure the day I had the stroke was 117/77. And it was… I never had high blood pressure... So they tested, you kn ow… And all my friends, because they thought I was going to die, be cause it was so severe… And hmm… They finally went down my throat to check my heart, and I have a … From birth, I have a blocked septum in my heart, which is one valve is rigid, and the other side looks like a slack jump rope, and that’s what started the clots… So I’ve had two… I’ve had two strokes… The first one was in 2000, and I lost my tast e buds and my smeller… It has never come back. And then in 2001 I ha d… I call it the “Big Bang”… It was… It was a Big Bang… Larry and Susan I drove him. I didn’t know he was havi ng a stroke… We got as far as the fire station. Larry said “fire” and I said “station,” and the resc ue squad took him to the hospital. But I didn’t know... I remember telling him, “La rry, I think you’ve had a stroke…” but he would say “No, no, no… Hospital!” And we went from there. ***

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4 “How it happened?” she asks. “Well, he told me to turn on the light and the words wouldn’t come out of his mout h! Right here! In the hallway…” “No… Dear, no…” Larry corrects her, gently. “In the back hallway?” she asks in doubt. “In… Garage!” he says. “That’s right,” Susan concedes. “He sai d, ‘Turn on the light!’, and then… The words wouldn’t come! I thought… ‘He’s had had a stroke… he’s had a st roke!’ Little did I know…” Taking a breath, Susan continues, “Your tongue got thick…” “Oh, yes!! I…” Larry starts and pauses. “We were going to go to a movie and… And… And we didn’t go…” “Well… Now… What… TI…” Larry asks, searchingly. “You had a TIA,” Susan agrees and nods “Then in the hospital you had the stroke.” “Stroke, two days… two days… Friday... night… Saturday” Larry mentions, trying to get his ch ronology straight. “They were gonna release you on Sunday and you had a stroke.” Susan says. “So Sunday morning… Sunday morning… the stroke has occurred…” Larry confirms. “And me, aware? No… Asleep…” Bob and Diane “Remember?” Diane asks, looking at Bob.

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5 “Yeah…” he says, with a deep, longing sigh. “You were traveling… you came home…” she reminisces. “No… No… The… Friday… The plane” he corrects. “And… not a stroke, but…” “You had a what… Remember?” she intervenes… “A kidney…” “Ey… Stone!” he completes. “You came home, went to bed…” she retraces his steps. “Right… And the next day… Really ea rly… The bed… Yeah, the stroke. The body… The arm… Not heavy, but… I don’t know… ” he looks at her, searchingly. “Numb?” she asks “Numb! Yes, yes! And could not talk.” *** We were on our way… This was our daughter’s… This was a, you know, a real horror story, but it’s in the past now. [She’s silent for a moment. Reorga nizing her thoughts, she continues,] We were actually on our way to ou r daughter’s college graduation. We were supposed to get a plane that day to go to Ph iladelphia. Actually, to a college reunion of Bob’s in Boston, we were going there and then to Philadelphia. I was downstairs, turning the coffee on, because we had a two-story house, and I heard this thump, and there was something about this thump that wasn’t lik e… You know, like dropping a cup… So I flew upstairs, and Bob was beside the be d, and I thought he was joking around. [She looks at him and smiles.]

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6 I thought he was playing around and joki ng around. I said, “Bob, come on, you know, let’s not… You know, we’ve got a lot to do, we’ve gotta, get up…” But I couldn’t arouse him at all. I called 911, and… They… I knew it wasn’t heart, you know, I knew it wasn’t heart, because it’s not what happens in a heart attack and all… I knew… When we went out there… Because of the kidney stone in his record they thought that it was a bad reaction from the drug that they had given him the night before. I could tell by the questions… Of course, because of his age (h e had just turned 51) they thought it was probably an aneurism, so they did the CT. There was no evidence. So they ruled out aneurism. They admitted him for observati on because they saw absolutely nothing. So… at that point, I heard somebody mention st roke, and they asked me about a neurologist… By that night, the neurologist managed to be there, and… Then they took an MRI. The next night the neurolog ist told me that… It had been a massive, horrible stroke, and… He would never do anything… Edie and Cathy March… hmm… Numbers… numbers… 19…95? 1995. In the morning… I have my… Kitchen…Plugging the coffee… And then something… Something… SHUMMMM! Bum!! Yeah… Bum… And… Husband is right there… Maybe ‘frigerator, or something. “What’s t he mat…?” Ohhhh!!! His word, he say… He was… Because… “You have a stroke!” No wonder… I can’t… I remember the kitchen and then… Suddenly… Funny… Things… And no more… No more… Five days coma… ICU… I remember nothing.

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7 *** Well, what is weird is… It happened Ma rch 14, which was a Tuesday, and I was in nursing school. Dad called me, and then I sai d, “Ok, I’ll meet you at the hospital.” We got there, and… [sigh]… It was clear what had happened, that sh e had a stroke, and in nursing school I had heard about th e TPA, but it wasn’t yet approved, and… She went to a hospital in Bradenton which is a smaller community hospital. They weren’t giving it there… I asked the doctor about TPA and she said, well, it ends up causing hemorrhages and we don’t give it, and… I… At the time… T hat was it… They were not giving it, and… Mom… In the… In the ER… It was… Pretty clear to me that Mom knew what had happened. She doesn’t recall this, because th e brain was swollen and all, but it was pretty clear to me she knew what wa s happening because she would pick up her bad hand. *** The doctors say my husband, they say “Your wife is very sick… Be careful because maybe have a… Your wife is…. Dead…” Oh god! “Or… Is a coma… and vegetable, vegetable!!” He said “AH HHHH!!” Panicked!! Yes, I think, my husband… They say later, perhaps, but I don’t remember nothing! Slowly, five days, and then night time in the hospi tal, and there in night time… Dark… “Hospital? What’s the matter with me ? What’s the matter with me? What happened here, what’s wrong?” And … then… “My… My… Arm…? Hand? Oh!!!” Then suddenly! It pops in! “I have a stro ke! Oh boy!!!” I couldn’t… Anger, anger, anger!!! Is very… Nobody else here! Oh my golly! It’s… The brain and… Slowly,

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8 slowly, slowly… “Oh my god!! I can’t talk I can’t! I… I don’t feel anything… talking but, it’s flat… Not flat… Oh boy…” Tom and Erika Well, I had… I was on the golf course at the time… University of South Florida. And… I had a headache… And then… Eyes are bo… bothering me… So I… Keep rubbing eyes… So… I… Lay down… You know? No problem, hmm… Bug bite, or something like that, a fr iend… You know… Three… Three hours… Golf course… Yeah… Well, basically… Five, five hours… *** What happened to him…? He had a dissected carotid artery, so a piece of the artery just broke away… Just a piece… Like, this is the artery, and a piece here broke away and clamped it shut… You know… That’s why at the c onference, when they were talking about the two types of strokes, no, it’s not true bec ause he didn’t have a bleeding and he didn’t have a blood clot… Right now it’s still 100% blo cked… What happened is the blood made new pathways to go around, but the damage was done… So… Had he gotten… In fact, he got to the hospital five in the evening; they didn’t start him on heparin until midnight… So, I mean, it was hour s and hours gone by… It was, at that time it was twelve hours, but… I don’t think that… I don’t think it would have… If he had gone to the hospital immediately, I don’t thin k anything else would have been different… No… No… Because it was a different type of st roke. They… Say it is either hereditary or a freak thing… ***

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9 Looking at Erika, Tom comments, “Nu… Number… Te… Ten minutes… Know… I didn’t… No, no… But… numbers… cell phone…” “You couldn’t remember?” she asks. “Yeah… Couldn’t remember!” Tom says, nodding. “Your speech was on and off that night…” Erika recollects, “Then the next day… by the end of the next day, it was… Nothing. It was gradual… Then your boss, you were with your boss on the golf course, so he calle d me… He said, ‘Tom got stung by a bee or something, he’s having a reaction, I’ll take hi m to the hospital.’ So I thought, ‘Oh, OK, no big deal…’ I get there and you come wheeling in the chai r and I said, ‘No… Something is wrong…’ You don’t re member that, do you?” she asks. “No… I do… Some… Some… Some… Time s… Flashbacks… But…” sighs, “You know… Nothing…” Curt and Christie “You were at school” Christie starts. “Oh, yeah… Yeah… University of South Florida, eat ing a Subway sandwich.” Curt smiles, good-humored as always. “All of a sudden, walked inside, two step, I’m almost buckled on my knees!” “Because…” she inquires. “Of course, I ate the Subway sandwich” he adds the important detail, and laughs good-heartedly.

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10 “But you had a headache” she says, focusing him, as she has probably done their entire lives. “Oh, yeah!” he nods and acknowledges. “It just hit you real… Bad!” she exclaims. “Almost buckled my knees…” he recollec ts. “I walked inside, two steps, and buckled my knee… I still ate the Subway sandwich, of course… But it hurt… And… dizzy… I didn’t know nothing.” He stops and thinks for a while, organi zing his thoughts. “I know the symptoms… I think ‘I’m having a stroke.’ ‘You’re not havi ng a stroke’ the doctor, the nurse said…” “They took him back to the clinic there… He had to walk to the clinic, they wouldn’t take him” Christie in terjects, in quiet indignation. “Oh, half a mile!” Curt adds. “So he walked over there, and they didn’t know what was wrong… But they didn’t think it was anything serious… I don’t know why they finally sent you to the hospital?” “Carrollwood hospital… I hate that hospital! It’s a sma ll hospital!” he exclaims. “They were almost full, or real busy at th e time… So anyway, they sent him there, and yeah, it was real small… He stayed in an emergency room for about… Oh… Until about one o’clock in the morning, I guess, and he got there about four… So… They didn’t do anything… They were going to take h im up to the floor and start a heparin drip on him, and by the time he got there the whole left side was paralyzed…” “I didn’t know anything, you know? It’s weird.” He recollects.

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11 “He couldn’t say anything.” She says, looki ng at him, quietly. “It was hard to say what he was understanding and what he wasn ’t. I don’t think he was understanding much of anything at that time.” “I was a messed up puppy!” They both laugh. “My two words, ‘Curt’ and ‘Christie.’ Nothing. I know what the peopl e, but… In and out, you know?” He stops, looks at his body and says “My arm is… Li mped, I don’t know what the problem is…” After a brief moment, he concludes “I made a pact with God! ‘Don’t take my life just yet…’” Barbara “John went into the bathroom when we got back to the apartment and I went to the foot of the bed to step out of my sandals As I bent down to pull off the left one, it happened. It happened so fast: suddenly I was sp iraling down, head first, to the bottom of a well, spinning in perp etual, uncontrolled motion. This di zziness was far worse than the spells that had occurred that morning. It was deep inside my head, as though my brain had gone on a roller-coaster and hadn’t bothered to tell the rest of my body. The odd thing is, I never lost consciousness, and I wa sn’t frightened. It didn’t hurt. There was no pain – no sense of trickling or bursting – ju st an overwhelming swir ling, sharp drop. As my mind disengaged from my body, it separated the connection between thought and action. Everything now happene d in slow motion. My body cr umpled. My head hit the wooden floor with a loud thump, and I collapsed on top of it. I could feel the cold, hard planks of the floor. Then there was complete silence. I tried to ge t up but nothing moved. Something was very wrong. A heaviness, like a man’s hand, weighed down on my

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12 consciousness, leaving nothing but my will. My will alone tried to pull its companion body back to its rightful place. It tugged at the limp mass and gave a noiseless command to get up. I tried. It strained to push the iner t mass on the floor. But there was no mind to assist, no muscle to aid, no words to inst ruct. Communications were severed. My mind and body could no longer perform its commands. Th e connection ceased to exist. I didn’t know until much later that I had lost th e ability to speak.” (Newborn, 1997, p.11). Literature Review The voices present in these narratives belong to seven stroke survivors and their families. All of the survivors have aphasia, an acquired neurogenic disorder which affects language expression (i.e. speaking and writin g) and comprehension (i.e. listening and reading). In the United States, approximatel y one million individuals are currently living with aphasia (NAA, 1999) and 100,000 new cas es are documented each year (Damasio, 1992). Despite these astounding numbers, publ ic awareness of aphasia is still considerably low. In a face-to-face survey c onducted with 978 participants in the United States, England, and Australia, 133 individuals (13.6%) had heard of aphasia, and only 53 (5.4%) had basic knowledge about the diso rder (Simmons-Mackie et al, 2002). Several factors contribute to the poor visibility of aphasia in the general population. As opposed to other stroke sequel ae such as hemiparesis or hemiplegia, aphasia is not readily visible to th e naked eye. As discussed by Alf in Talking About Aphasia (Parr, Byng, Gilpin & Ireland, 1999), “You can see a person in a wheelchair… he or she got no legs. Then you say: ‘Oh yes. That person is disabl ed.’ But you cannot see that I am

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13 aphasic. They cannot see it, so how w ill they know? Have I got to have a noticeboard up and say: ‘I am aphasic’?” (p. 118) The presentation of aphasia is further complicated by its unpredictability (i.e. language performance may increase or decreas e depending on one’s level of stress and fatigue) and high degree of individual variabi lity (i.e. no two individuals with aphasia are exactly alike). Several individua ls with aphasia are themselves unclear about the nature of their disorder, and may e xperience a full range of conf licting emotions (e.g. anxiety, anger, frustration, shame) when attempting to explain their difficulties to strangers (Parr, Byng, Gilpin & Ireland, 1999). Of far-reaching and devastating consequence, however, is the stigma associated with the disorder. Wh en confronted with sentences missing words or missing content, most people shy away in embarrassment, fearing either lack of intelligence or impaired sanity (Sarno, 2004; Parr, Byng, Gilpin, & Ireland, 1999). In an extreme case, Ireland (1990) discusses how sh e was committed to a mental institution after being misdiagnosed as mentally ill following her stroke and aphasia. Since in most cases aphasia is “a partner for life,” how do indi viduals adjust to their new realities? How is their sense and perception of self redefined after such a significant life disruption? How do these change s impact their recovery and reintegration into society? The Self, Memory, and Stories You have to begin to lose your memo ry, if only in bits and pieces, to realize that memory is what makes our lives. Life without memory is no

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14 life at all… Our memory is our cohe rence, our reason, our feeling, even our action. Without it, we are nothing.” Luis Bunuel Questions regarding the nature and comple xity of the self have permeated not only the entire history of psychology, but al so several other di sciplines including philosophy, anthropology, sociology, religion, the arts, and recently the neurosciences (LeDoux, 2002). Bruner (1990) refers to the “tortured history” of the self as a progressive paradigmatic shift from “essentialism,” in wh ich the self was conceived as a preexisting substance in need of discovery, to a “conceptu al self,” constructed in cultural and social interaction and constantly reformulated as a re sult of the dialogue between the “I” and the “other.” Somewhere between extreme essentialism and total social constructionism lies the theory of self proposed by William James (1910). In James’ view, the self is composed of two distinct but complementing aspects: the empirical ego (Me) and the pure ego (I). As an “aggregate of things objectively known” (p. 48), the empirical ego (see Fig. 1) encompasses all of one’s material, social, and spiritual constituents, as well as all favorable and unfavorable feel ings and actions aroused by them (i.e. self-preservation, self-seeking, and self-estimation.) The pure ego (I), on the ot her hand, is the element of the self which confers individuals with a sense of continuity and id entity over time. Differently than the feeling of transience inherent in the “Me,” the “I” provides individuals with the sense that the “Me” from the past and the “Me” from toda y are essentially the same, despite their constant growth and mutations.

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15 How can permanence and constant change coexist, however? According to James, this seemingly complex paradox is solved thr ough the seamless fabric of our memories. Figure 1. Schematic of the empirical ego (based on James, 1910, p.46) “[T]he Me of now and the Me of then are continuous : the alterations [a]re gradual and never affected the whole of me at once. …The identity which we recognize … can only be the relative identity of a slow shifting in which there is always some common ingredient retained. The commonest The material me Body Clothes Immediate family Home Wealth and Work The social me Recognition by peers Social roles Fame and honor The spiritual me States of consciousness Psychic faculties Outermost Innermost Give rise to actions and feelings Bodily self-seeking Bodily appetites Instincts Improvement of body and property. Social self-seeking Desire to be noticed, admired Ambition Pursuit of social status Spiritual self-seeking Aspirations of moral or religious nature Material selfestimation Vanity vs. modesty Pride of wealth vs. fear of poverty Social selfestimation Social, familial pride vs. snobbery Humility vs. shame Spiritual selfestimation Feeling of mental superiority vs. feeling of inferiority Purity vs. guilt

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16 element of all, the most uniform is the possession of some common memories. However different the ma n may be from the youth, both look back on the same childhood and call it their own.” (p. 48). The significance of memory in the construction of identity is reiterated almost a century later by LeDoux (2002) who states th at “learning, and its synaptic result, memory, play major roles in gluing a cohere nt personality togeth er as one goes through life. Without learning and memory processes, personality would be merely an empty, impoverished expression of our genetic constitution” (p. 9). Concepts such as the “Me” and the “I” as suggested by James may be, in some ways, compared to what Kirmayer (2002) terms the “transactional” and the “adamantine” aspects of the self, which are culturally created and constrai ned. Thus, within the context of the Euro-American culture, individuals are expected to have a core (“adamantine”) self, which lends coherence and continuity to the fluid and ever changing aspects of the “transactional” self. In discussing how individuals actively construct the self through the act of narration, Bruner (2002) suggest s that narratives of self-m aking are a dialectical and cultural construct, character ized by the desire to bala nce autonomy and social commitment. In order to achieve such a task “we constantly construc t and reconstruct our selves to meet the needs of the situations we encounter, and we do so with the guidance of our memories of the past and our hopes and fears for the future.” (Bruner, 2002, p. 64). As attested in documents such as “medical histories, legal testimonies, psychological portraits, texts of pure fict ion, news stories, autobiographies, conversations” (Young & Kay, 2001), the act of na rration is pervasive in every aspect of

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17 our daily lives. However, when regardi ng our own experiences, we may not readily perceive them as part of a narrative stru cture, given that we ourselves are embedded within the fabric of our stories (Young & Ka y, 2001). According to Bruner as quoted by Young and Kay (2001), narrative is the inst rument by which the mind constructs, organizes, and gives meaning to reality. “Narrative organizes not just memory, but the whole of human experience – not just life stories of the past, but all of one’s life as it unfolds. Bruner describes narrative as an instrument of mind that constructs our notion of reality, and asserts that the experien ce of life takes on meaning when we interact with it as an ongoing story, as our story.” (p. 75) The interrelationship between narrative and memory in the active creation of one’s self has recently attracted the attention of researchers in the area of neurosciences. In the article “The Neurology of Narrativ e,” Young and Kay (2001) discuss how the concept of self may become disrupted in in dividuals with “dysnarrativia,” a state of “narrative impairment” caused by focal brain damage. As evidenced in cases of global amnesia, in which one is unable to form new memories due to bilateral amygdalohippocampal lesions, the self may become “frozen in time, aging somatically but not psychologically [as] interests, obsessions, narr ative self-interpretati ons and dispositions [remain] stable over decades” (p. 76). Sack s (1985) describes a poignant example of dysnarrativia in the story of Jimmie G., th e Lost Mariner who suffered from a memory impairment due to Korsakov’s syndrome. As Sa cks recounts in his notes, Jimmie was a “man without a past (or future ), stuck in a constantly cha nging, meaningless moment” (p.

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18 29), resembling in some ways a successive collection of James’ “Me’s” without the organizing presence of a governing “I.” In cases not as drastic as Jimmie G.’s, what happens to the self when it is faced with significant life disruption? How does it heal after being shattered by illness? Bridging the Chasm Stroke rehabilitation seesaws between hope and hopelessness. Becker and Kauffman Although initially loca ted within the realm of the body, life disruption following illness (in general) and stroke (in particular ) is pervasive and systemic. As aspects of existence previously taken for granted are swep t from under one’s feet in the blink of an eye, chaos and confusion ensue, accompanied by feelings of uncertainty about the future and longing for life as previously know n (Becker and Kauffman, 1995). In a study investigating how a woman redefined her bi ography after suffering a stroke, Kauffman (1988) contended that following life-threatenin g illness, survivors need “to ‘repair’ and ‘heal’ the self by revising and re-creating the biography so that it makes sense in light of the current changed circumstances” (p. 217). In the seven narratives presented earlier in this chapter, stroke survivors and their family members relive the precise moment of their strokes in vivid detail, years after the fact, as they attemp t to weave their memories of disruption and chaos into the fabric of their biographical time (Corbin & Strauss, 1987). As stated by LaPointe (1999), following the initial shock a nd confusion which accompanies the moment of a stroke,

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19 “People begin to try to make sens e of everything. They mull and ponder and ask questions about the details of how they behaved during the acute phase. They go over the events in thei r minds and examine in excruciating detail the events leading up to the illn ess to try to discover the ‘real’ cause. They ask ‘Why me?’ and finally after ruminating, they begin to accept the fact that their lives may be inexorably altered.” (p. 270) In studying life disruptions of various kinds (i.e. infe rtility, midlife disruption, stroke, and old age) across groups of vari ed ethnic backgrounds, socioeconomic status, ages, and gender, Becker (1999) observed a pattern of recovery emerge in several narratives, characterized by a mo ment of disruption, a transitional period or “limbo” in which individuals lingered between two worlds, and a process of biographical reorganization, in which lives we re reinterpreted in light of recent experiences. Given the pervasiveness of this pattern across such diverse narratives, Becker (1999) suggested that, within the context of American culture, biogr aphical disruptions were seen as a violation in the thread of continuity and predictabil ity expected to permeate one’s life. Thus, in most participants’ narratives, frequent attempts were made to bridge the past, present and expected future into a new semblance of normalcy and continuity. In The Wounded Storyteller Arthur Frank (1995) discusses a similar pattern of recovery in the form of narra tives of chaos, restitution, and quest. In chaos narratives, individuals’ stories ar e fraught with confusion, despair, and loss of c ontrol, as the body is suddenly arrested by illness and life is thrown in disarray (Becker’s “disruption”). In restitution narratives, stories shift focus to the plight for a cure and the restoration of life and health. Restitution narratives, in some wa ys, are similar to Becker’s “limbo,” in

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20 which individuals are suspended in between two worlds (i.e. past and present, health and adaptation to illness, chaos and order). Finally, in quest narratives (Becker’s “reorganization”) the plot suddenly changes a nd develops into a sear ch for adaptation and acceptance of disability and difference. In discussing the concept of illness trajectories as defined by Wiener and Dodd (1993), Becker and Kauffman (1995) state that an illness trajecto ry encompasses the physical development of a disease, its treatment and management, and its impact on the patient and his/her social network. In addition, illness trajectories may be interpreted through three different perspectives, includin g: 1) the illness as seen by the medical establishment in the form of a prognosis ; 2) the illness as experienced by the patient; and 3) the “ personal narrative ” of the illness, constructed by patients and their families as they decide how much of the medical prognosis to incorporate into their own stories. In most cases, the degree to which the medical and the personal aspects of illness are fused into a personal narrative is highly depende nt on the level of observed or perceived improvement gained from medical interven tion (Becker and Kauffman, 1995; Corbin and Strauss, 1987). In the case of stroke, one aspect of the il lness trajectory which is usually shared by different survivors is the “mechanics” of treatment and rehabilitation. Following the initial hospitalization in acute care, most stroke survivors are prescribed a period of rehabilitation (including physical, occupati onal, and speech therapies) which may start within the context of acute care itself and tr ansfer into inpatient rehabilitation programs, outpatient therapy, home health, nursing homes, or assisted living facilities (Becker and Kauffman, 1995). In considering whether a given patient is a good rehabilitation

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21 candidate, medical specialists usually consider the following factors: 1) the patient’s health status prio r to the onset of stroke, 2) the patient’s current cognitive abilities, 3) the level of severity of the st roke, 4) the patient’s level of tolerance for intensive rehabilitation, and 5) the patient’s age (Becker and Kauffman, 1995; Kauffman and Becker, 1986). The role played by rehabilitation in one’s recovery usually goes beyond its more readily observed medical benefits, as it is du ring rehabilitation that survivors are given the first opportunity to re-estab lish a sense of order, routine, and predictability to their lives. As pointed out by Becker and Kauffman (1995) in their study of illness trajectories following stroke, “Rehabilitation lent structure and meani ng to [patients’] daily lives. It was important to do. It provided a series of tangible goals. They gained a sense of productivity from their efforts in rehabilitation, which diminished, to some extent, their feelings of being useless. … Rehabilitation gave shape to the trajectory.” (pp. 176-7) Although the primary goal of rehabilitation in the United States is to reduce disability and help individua ls attain a level of functional indepe ndence upon discharge (Sarno, 2004, Becker, 1994), rehabilitation is sti ll seen by most patients and families as a source of cure and restitution to the self as previously known (Becker and Kauffman, 1995). In addition, when participating in rehabi litation programs, patients are expected to demonstrate high levels of motivation and desire to recover, which ar e two of the greatest predictors of success in rehabilitation, as perceived by healthcare providers (Becker and Kauffman, 1995). Thus, certain e xpectations and responsibilitie s are implicitly placed on

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22 the patients’ shoulders, such as complian ce with rehabilitation, a positive outlook on therapy, and acceptance of the therapist’s ro le as the expert (Pound et al, 2002; Alexander, 1990). Within that context, limited space is gi ven for the expression of feelings of grief, anger, or loss experienced by both patients and their families as a result of disability (Becker, 1994; Pound, 2004). “… The expression of distress is no t culturally sanctioned in the United States. In the United St ates, there is an under lying ideology, born of puritan beginnings, that values communication through mental rather than bodily activity, that values thinking more highly than feeling. Bodily and emotional expression is suppressed. Indeed, the lack of acknowledgment of embodied distress heightens the di fficulty people have in giving voice to bodily disruptions; embodied distre ss may be difficult to access through language and may remain muted and unarticulated.” (Becker, 1999, p. 11). When considering individuals with a phasia the challenge is compounded: How can one attempt to communicate his or her inner turmoil when communication itself is one of the sources of distress? Language Rehabilitation Neurology is largely a veterinary bu siness – it deals almost exclusively with what can be measured and test ed; hardly at all with the inner experience, the inner structure, the subjectivity, of the subject.… It excludes mental states, consciousness, because they are “subjective” and “private,” and cannot be verified or va lidated in the conventional way. No

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23 “persona” terms are allowed in neurology … We do not have any “neurology of identity.” Oliver Sacks Within the current system of medi cal rehabilitation, speech and language pathologists are the prof essionals most directly involved in the assessment, treatment, and rehabilitation of individuals with neurogenic language disorders. Du ring the nineteenth century, however, the few individuals with ap hasia who survived stroke or brain injury were “re-educated” primarily by neurologist s (Howard & Hartfield, 1987). It was only after the advent of the two World Wars th at rehabilitation programs started to be developed throughout the United States and Eur ope (especially in Germany, the U.K. and Russia) to accommodate the needs of w ounded soldiers who had sustained gunshot wounds and other brain injuri es (Hinckley, 2002; Howard & Hatfield, 1987). As pointed out by Sarno (2004), “Aphasia rehabilitation is indebted to the field of rehabilitation medicine for its philosophical foundation and its contemporary adoption of a functional perspective for assessment, treatment goals, and outcomes.” (p. 21) Delivery of speech and language rehabilita tion services in the United States is currently constrained by th e policies and procedures of managed care. The Social Security Act Amendments of 1983, in particul ar, had profound effects for the fields of speech pathology and audiology. With the crea tion of the prospective payment system (PPS) and reimbursement based on diagnosis -related groups (DRG), hospitals were encouraged to increase service efficiency. In practical terms, however, PPS translated

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24 into shorter hospital stays a nd “late or reduced inpatient referrals, fewer inpatient sessions, downsizing of staff, or reluctance to contract new services” (White, 2001, p. 216). Traveling the never-ending maze of insurance coverage is a heroic task in itself. Overall, evaluation of language disorders is more readily reimbursed than treatment and inpatient therapy more so than outpatient. Ps ychosocial aspects of disability, including “depression, self-esteem, stigma, relati onships, role changes, impact on carers, psychological effects, disability, identity, functi onality and lifestyle ch anges” (Parr, 2001, p. 266) being perceived as “maintenance” aspects rather than objective deficits, are rarely addressed directly in therapy and are not covered by insurance (Sarno, 2004). In a system built to work as a well-oiled machine, where patient care is meant to be delivered as economically and efficiently as possible, little space is reserved to the personal experience of illnes s (Frank, 1995). As mentioned by Sacks in th e quote above, healthcare professionals (not on ly neurologists!) are trained to document and treat mostly the aspects of a patient’s illness which can be analyzed objectively. In fact, within the realm of speech pathology, addressing a pati ent’s personal narrative may be seen by several therapists as something “essentially wrong,” which steals time away from real therapy (Holland & Beeson, 1993, p. 582). In considering her experience as a sp eech and language therapist, Pound (2004) reflects “Initially, as a ther apist, I felt … my job was to help patients understand their condition, improve their speech and language as much as neurological damage allowed, and somehow support them to ‘come to

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25 terms’ with their changed lives (whi ch of course I could only glimpse from my therapy rooms in the hosp ital or rehabilitation unit). Looking back, I cringe at some of my cl umsy attempts to speed realistic adjustments to limitations on the part of patients and families. I also, retrospectively, question d ecisions about the timing and allocation of time to different parts of the rehabilitation process. How little option I gave clients in how they divided their pr ecious therapy time, and how unclear I was in setting out the different components of therapy. For example, it was not difficult for me to listen to language errors and tales of determination. But to listen to the repeated stories of chaos and confusion and to develop therapeutic interventions appropriate to learning to live with difference – these offered therapeutic challenges of a quite different dimension.” (p. 36) Although not common in the U. S., identity and narrative based therapies are being developed and implemented in countries su ch as the United Kingdom (see Pound et al, 2002). Despite the stark differences in health care systems between the UK and the US, one cannot help but wonder: Is there a place for personal narratives and id entity-based therapy in the context of aphasi a rehabilitation in the U.S.? What Is It Like Inside? Arthur, when am I going to be me agai n? This is not what I had in mind for ‘me.’ After some more rehab will I be me again? Arthur Kopit’s father as mentioned by LaPointe in

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26 Adaptation, Accomodation, Aristos, 1999 In his preface to Wings Arthur Kopit (1978) comments, “In the spring of 1976 … my father suffered a major stroke which rendered him incapable of speech … [I]t was impossible to know how much he comprehended … As best as I could, I tried to understand what he was going through. It seemed to me that, regardless of how reduced his senses were, the isolation he was bei ng forced to endure had to verge on the intolerable; clearly, he had not lost all comprehension – the look of terror in his eyes was unmistakable. Yet, not only did he tolerate this state; every now and then, if only watche d carefully enough, something escaped from this shell that wa s his body and his prison … something which I felt possessed a kind of glow or flicker, rather like a lamp way off in the dark, something only barely perceptible. I took these faint flashes to be him signaling … [I]t seemed to me (indeed, seemed irrefutable) that in some ineffably essential way, reduced as he was, he was still the same person he had been. This thought was both hearteni ng and frightful. To what extent was he aware of what had befallen him? What was it like inside ?” (p. viii) In an attempt to understand hi s father’s inner struggle af ter his stroke, Kopit wrote Wings a play portraying the story of a female p ilot who suffers a stroke and aphasia. As a source of inspiration for his main protagonist Kopit interviewed and interacted with two women with aphasia he met at Burke Rehabil itation Center in NY, where his father had been transferred after his str oke. By investigating his fath er’s world through analogy, the playwright metaphorically translated the e xperience of aphasia as a pendular movement

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27 from the “inner self” to the “outer self,” in a progression which emerged from fragments and chaos to a new order and sense of cohesion (Kopit, 1978). In discussing the topic of self in stroke and aphasia, Brumfitt (1993) contends that following a stroke, most survivors may idealiz e their “prior selves” while mourning for their losses, thus creating the need for the development of a new and transformed identity. During this process, the acknowledgement of the i ndividual’s prior self is of great significance, as it allo ws survivors the oppor tunity to reconnect their present and past selves, thus reinstating a sense of biographical continuity. Herrmann, JohannsenHorbach, & Wallesch (1993), however, point out that in several cases, the act of acknowledging the past may be misinterpreted as an attempt to cure a nd restitute the self as previously known, thus further compounding the problem of adaptation to living with disability. Most of what is currently known regardi ng the experience of living with aphasia is based on personal accounts of survivors. Ho wever, as pointed out by Sarno (2004) “indepth studies using the methodologies of the social sciences designed to identify and assess the nature of personal suffering in aphasia have been limited.” (p. 22). What the reader will find in the followi ng pages is an attempt to re-construct the transformations and reformulations of self as experienced by the seven individuals whose lives were suddenly arrested by a stroke and aphasia. Inte rwoven within the fabric of their narratives are the voices of their family members as they rediscover their loved ones as well as themselves in the new roles they assume. In order to re-construct the biographies of the seven participan ts, a qualitative methodology was used.

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28 Chapter 2. From Science to Art (Or Somewhere In Between) Qualitative Methods Although relatively new to the field of speech and language pathology and aphasiology in particular (Damico & Si mmons-Mackie, 2003; Parr, 2001; Parr, Byng, Gilpin & Ireland, 1999), quali tative research has a long a nd well-established history within the human sciences. Traditionally grounded within sociology and anthropology (Parr, 2001; Denzin & Lincol n, 2000; Damico et al, 1999), th e primary goal of qualitative research is to “seek answers to questions that stress how social actions and social experiences are created and sustai ned” (Damico et al, 1999, p. 651). In its primordial days, qualitative res earch was conducted by investigators (i.e. ethnographers) who traveled to foreign and ex otic lands to do fieldwork and artifact analysis, in hopes of understa nding the reality of the “other” thr ough naturalistic and “objective” observation (Lindloff & Tayl or, 2002; Denzin & Lincoln, 2000; Ellis & Ellingson, 2000; Wolcott, 1999). During th e past century, however, qualitative methodologies have undergone significant theo retical reformulations, giving rise to a historical continuum which extends from the realism of the positivis tic sciences to the multiple layered meanings of literature and the arts (Ellis & Ellingson, 2000). Considering that all research is essentially interpretive in nature, an investigative approach (or, in this case, the researcher’s point of entry along the qualitative continuum) is influenced by one’s ontological (“What is the nature of realit y?), epistemological

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29 (“What is the relationship between the inquirer and the known?”), and methodological (“How do we know the world, or gain knowledge of it?”) beliefs, which, taken together, constitute a “paradigm, or an interpretive framework.” (Denzin & Lincoln, 2000, p. 19). Thus, depending on the researcher’s positi on along the qualitative continuum, social phenomena may be approached as: 1) an obj ective reality, existing independently, which may be investigated linearly and documente d objectively; 2) the result of socially constructed human interactions, of which the investigator is part; 3) the interpretation of lived experience through the eyes of the re searcher himself/herself (Ellis & Ellingson, 2000). Various strategies (e.g. case study, ethnography, participant observation, grounded theory, life history, c linical research) and methods of data collection and analysis (e.g. in-depth interviewing, obser vation, artifact and document analysis, focus groups, textual analysis) may be employed in conjunction or isol ation by qualitative researchers (Denzin & Lincoln, 2000). As insightfully summarized by Damico et al (1999), “Qualitative research does not fa vour one single methodology over any other. The choice of data collection procedures and preferred methods of analyses depend upon the social phenomena under investigation, the questions that are asked and the contexts within which the phenomena exists. … As such, whenever this res earch paradigm is utilized, it produces a bricolage – a kind of pieced-together but carefully constructed set of practices and strategies that provide solutions to a problem in a concrete situation.” (p. 652)

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30 Selection of strategies a nd methods of data collection and analysis is largely dependent upon the investigator’s view of social phenomena. As explained by Ellis & Ellingson (2000), while naturalistic research may be more likely to use research tools traditionally linked to quantitative research (i.e. hypothesis testing, randomization, deductive reasoning), interpretiv e research may draw from methodologies rooted in the social sciences and the arts, including biographical methods, pa rticipant observation, ethnography, autoethnography, in teractive interviewing, a nd narrative analysis. Standing somewhere in between both extremes one may find what Ellis & Ellingson (2000) call the “middle-ground research ers” who combine aspe cts of “scientific rigor” with “artistic imagin ation” (p. 2289). Middle-ground researchers may resort to methods of data collection such as semistru ctured interviews, pa rticipant observation, fieldwork, textual analysis, or focus groups. Sampling of participan ts may be done in a “snowball” fashion (Ellis & Ellingson, 2000, p. 2290, referencing Reinharz), in which participants themselves iden tify other potential pa rticipants. Middle-ground methods of analysis traditionally include sorting and cl assifying, various kinds of coding (e.g. open, axial, or selective coding ), as well as memo writing (Ellis & Ellingson, 2000, p. 2290). Currently, various disciplines make us e of qualitative methodologies, including education, business, medicine, nursing, comm unications, and social work (Ellis & Ellingson, 2000; Denzin & Lincoln, 2000). Howe ver, it has been only recently that the field of speech and language pathology has started to use qualitative methodologies in the study of language disorders (Simmons-Mackie, Damico, 2003).

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31 Qualitative Methods and Aphasiology Historically, researchers in aphasiology have employe d experimental or quasiexperimental designs in the study of neurogenic disorders to obtain accurate and verifiable data and establish scientific cr edibility (Parr, 2001; Damico et al, 1999). During the 1980’s, however, following Holland’s seminal work on pragmatics and language functions (Holland, 1982; Holland, 1980), several resear chers started to identify the need for more qualitatively based methodologi es in order to gather more “authentic, functional and naturalistic data on ap hasia” (Damico et al, 1999, p. 652). Over the past two decades, investigators in the United States, England, Australia, and Canada have started to use qualitativ e methods (i.e. conversation analysis, case studies, participant observation, and interviewi ng) to investigate th e complexities of communication in real life contexts (see for instance Cu nningham & Ward, 2003; Lindsay & Wilkinson, 1999; Simmons-Mackie, Damico & Damico; 1999; SimmonsMackie & Kagan, 1999; Simmons-Mackie & Damico, 1997; Simmons-Mackie & Damico, 1996; ). Researchers in England in part icular have studied various aspects of life with aphasia using qualitative methodologies (Parr, 2004; Parr, Duchan,& Pound, 2003; Parr, Byng, Gilpin & Ireland, 1999; Parr, 1994). Still, w ithin the broader research community, qualitative methods continue to be regarded as unscientific, or merely descriptive. According to Denzin and Lincoln (2000), “The experimental (positivist) sciences (…) are often seen as the crowning achievement of Western civilization, a nd in their practices it is assumed that ‘truth’ can transcend opinion and personal bias. (…) Qualitative research is seen as an assault on this tradition” (p. 8)

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32 In shifting parameters from quantitative to qualitative approaches, researchers are confronted with numerous practi cal, theoretical, and logistical challenges. Some of these are discussed in the following section. Challenges in Qualitative Research Recanting Authority “What am I looking for? Sometimes I get a nervous pang in my stomach when I think to myself that fieldw ork is so undirected (…) I must admit that I would feel better if I knew where I was going… (…) I feel like I am floating now.” Graduate Student Quote from Kleinman, Copp & Henderson (1997) As expressed by the student quote above, qualitative research requires investigators to approach soci al phenomena with no (or very few) pre-conceived notions (i.e. a priori knowledge, or hypotheses), thus relinquis hing their posts as all-knowing authorities. Doffing their roles as detached observers, investig ators are invited to immerse themselves in social phenomena and take a learning (rather than testing) stance by asking “What is going on here?” (Damico et al, 1999, p. 653). While this perspective may seem exciting on the one hand, it is anxiety and fear generating on the other, as researchers gradually realize they have much less control over their “variables” from this standpoint. As expressed by Kleinman, Copp & Henderson (1997) qualitative research requires one to “lose control to gain control.”

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33 Learning by Doing Since qualitative research is not based substantially on a priori knowledge, it requires a lot of time and investment on the part of the researcher in experiential learning tasks (i.e. fieldwork). In or der to conduct fieldwork and b ecome a participant observer, researchers need to gain access to a given so cial group and take part in their “daily activities, rituals, interactions, and events” so as to learn “the explicit and tacit aspects of their life routines and th eir culture” (DeWalt & DeWalt, 2002, p.1). As a consequence, the process of qualitativ e research usually involves a “ki nd of on-the-job training in the field or through an apprenticeship system” (Damico et al, 1999, p. 658). Currently, in the area of communication disorders, the paucity of mentors with a strong background in the use of such methodologies makes the process of apprenticeship particularly challenging. Describing Before Theorizing While immersed in participant observa tion, qualitative resear chers develop rich, detailed, and contextualized fieldnotes (i.e. thick descriptions) which are taken during (or immediately after) fieldwork. As expresse d by Kleinman, Copp & Henderson (1997), at the beginning of a qualitative project “everythi ng is data.” (p. 473). As the investigators revisit their fieldnotes, transcribe the voices of their participants, and attempt to code their data in a variety of ways, patterns begi n to emerge. Thus, it is during the process of writing and reflecting about what was obser ved and lived through experience that theories about social phenomena start to take shape, thus guiding futu re directions of the investigation (Richardson, 2000; Kleinma n, Copp & Henderson, 1997). As explained by Damico & Simmons-Mackie (2003),

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34 “… rather than establishing a research hypothesis, designing an experimental study to test this hypot hesis, and then moving directly to collecting data and applying various statistical analyses, the ethnographic investigator collects and analyzes da ta with the intention of identifying phenomena of interest; then this researcher continues to collect and analyze data to progressively narrow the investigation a nd hone in on the phenomena of interest. As a result, a particular phenomenon of interest emerges and then is focused upon fo r greater investigation” (p. 137). Laminating and Triangulating “Validity is subjective rather than objective: the plausibility of the conclusions is what counts. And plausi bility, to twist a clich, lies in the ear of the beholder.” Lee Cronbach Since qualitative and quantitative met hods are based on widely different conceptual paradigms, establishment of relia bility and validity in both realms differs substantially. Take, for instance, the case of experimental and quasi-experimental designs. Within this research methodol ogy, a hypothesis is tested based on predetermined dependent and inde pendent variables which are controlled for variance and experimenter bias. Randomized sampling and matched controls are used in order to ensure that participants c onstitute an unbiased and repr esentative sample of the population under study (Ellis and Ellingson, 2000). Within this framework, results are valid and reliable as long as they are replicable (Damico et al, 1999).

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35 In qualitative researc h, however, “extraneous variable s” are incorporated rather than controlled, as the primary goal of soci al inquiry is to try to understand how the patterns and the exceptions fit together w ithin the context of human interactions. Qualitative research does not require a large number of participants (even though nothing precludes it from working with several part icipants), but it demands keen observation, description, and documentation of how individu al participants inte ract, behave, and see the world within the context of their daily lives. Thus, as discussed by Damico et al (1999), “there is a trade off between the power of detailed and unique description (which may later result in a deeper understanding of the phenomena) and the convenience of grouping data” (p. 659). In qualitative methods, issues of reliab ility and validity are usually addressed by means of verification techniques such as data triangulation and lamination. Data triangulation can be defined as the use of “different da ta collection and analysis procedures across occurrences and locations so that the researcher can compare and contrast the different data obt ained across the different events over different occasions” (Damico & Simmons-Mackie, 2003, p. 137). Simila rly, during the proc ess of lamination, “The researcher analyzes the collected data and forms tentative conclusions. Once this is done, the c onclusions are verified through a different type of cross-comparison process; the researcher may ask the participants in the et hnography what they believe was happening when certain … behaviors were observed. In this way, the researcher adds another layer of interpretation to the data so that the actual results or

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36 findings can be cross-referenced ” (Damico & Simmons-Mackie, 2003, p. 137) Thus, during the process of lamination, re searchers attempt to bridge the gaps between their perceptions and that of their participants “so that findings reflect the meaning of the people whose lives were examined.” (Ellis and Ellington, 2000, p. 2290) If approached from the perspective of life histories, personal narratives, and especially autoethnography, issues pertaining to validity may ta ke yet another twist. As expressed by the narrator in Bochner & Ellis’ (2000) autoethnography piece, “To me validity means that our work seeks verisimilitude; it evokes in readers a feeling that the experience described is lifelike, believable, and possible. You might also judge va lidity by whether it helps readers communicate with others different from themselves, or offers a way to improve the lives of participants and readers even your own.” (Ellis & Bochner, 2000, p. 751)

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37 Chapter 3. The Search for Stories Who Are The Survivors? When the theme of “the self in aphasia” star ted to take shape as a research project, the names of four stroke survivors immediat ely came to mind. They were Bob Lombard, Curt Mathes, Larry Smith, and Tom Boyle, or “The Four Musketeers” as they have entitled themselves. I first had the opportunity to interact w ith the Four Musketeers as a graduate clinician during my third semester in gradua te school. I was inspired by the strong and solid bond of camaraderie and support that they share, as well as their healthy competitiveness in therapy and golf. The more I thought about them, the more I wondered about how they had learned to adjust to life with a disability. My curiosity just intensified during th e Speaking Out! Convention in Tampa, Florida in June of 2004, when The Four Musketeers made a powerful and moving presentation about living with aphasia and the benefits of group therapy. Their presentations were a turning point for me as a student and future clinician, and a moment of affirmation in my decision to carry out a research project using a methodology (and a topic!) that raised some eyebrows. It was also during the Speaking Out! C onvention that I had the opportunity to meet two of the other participants: Barbar a Newborn (who was delivering a presentation about her book Return to Ithaca and her experience as a yoga instructor for individuals

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38 with disabilities) and Vicki Gray, a survivor who had previously attended sessions at USF but had been discharged before I started in clinic. I had first seen Vicki in a video recording presented to us by our clinical supervisor, Miz Cheryl Paul (note that the “z” is not a typo, but rather a personal signature). In that video, Vick i described in vivid detail what her experience of aphasia was like, ma king a strong and permanent impression in my mind. When I happened to run into he r in one of the restrooms during the Convention, I could not help but as k her to participate in the study. Finally, I was introduced to Edie Dunga n, the beautiful impressionist artist, through other participants in the group. Alt hough she was also present at the Speaking Out! Convention, we did not meet until abou t two months later, when I attended a meeting of the Sarasota Me morial Hospital Support Group. Exclusion Criteria In order to participate in the study, survivor s needed to be at least twelve months post-onset in order to avoid the period asso ciated with reactive depression (Whrborg, 1991). How Was Data Collected? In order to investigate how the seven part icipants perceived changes in their sense of self after aphasia, a qua litative ethnographic methodolo gy was used. Data collection was done primarily within the context of in -depth interviews, which were audio and video recorded and transcribed verbatim. Other methods of data collection included participant observation, ar tifactual analysis, and i nvestigator diaries.

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39 According to Parr (2001), one of the advant ages of using in-depth interviews is that they have the potential to “allow systema tic exploration of the ‘insider’ perspective, the subjective and changing aspects of illness, from the point of view and in terms of the people who have it.” (p. 270). In this study, interviews includ ed not only the participants with aphasia, but also their family memb ers (when available). Four spouses (Diane Lombard, Christi Mathes, Susan Smith, and Erika Boyle) and two daughters (Courtney Mathes and Cathy Harper) participated in th e study. Interviews were conducted mostly at the participants’ homes and varied in numbe r from two to five meetings, depending on participants’ availability. Topics addressed during inte rviews included: 1) The participant’s life story prior to the onset of st roke; 2) The story of their stroke; 3) Their life story post-onset of aphasia. Questions we re open-ended in nature and used primarily as suggested topics of discussion rather th an fixed guidelines. Examples of questions included: 1) Tell me about your life story unt il the onset of your stroke; 2) How would you describe yourself prior to the onset of your stroke: what did you consider to be some of your most distinguishing ch aracteristics? 3) Tell me the story of your stroke: How did it happen? Where were you? What was your hospital e xperience like? How did you view therapy? 4) How did your stroke affect your social dynamics? What were the social implications of your stroke? The same questions were addressed by survivors as well as family members. Participant observation was conducted duri ng aphasia group meetings at the USF speech clinic as well as the Sarasota Memorial hospital monthly meetings. The description of interactions and observations made during the Speaking Out! Convention were also included in several narratives.

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40 During interviews, participants commente d on the value and meaning of various esteemed items such as personal journals, ca lendars, photographs, paintings, and objects (i.e. guitars, micrometers, etc.). The particip ant’s comments about such items (as well as copies of some of the artifacts) were incorporated within the fabric of their narratives as much as possible. Finally, throughout the process of the data collection, the investig ator kept a diary with fieldnotes, reflections, and observations ab out the interactions w ith each participant. Notes were taken primarily after each interview, and were incorporated within narratives as appropriate. How Was The Information Analyzed? The process of analysis and data colle ction occurred concomitantly in most instances. Following each interview, recordings were transcribed verbatim and analyzed for patterns. As the investigator identifie d possible leading themes based on comments made by the participants and their family members, questions were written down and addressed during subsequent interviews. In most cases, leading themes were later transformed into sections or s ubsections of their stories. The final product of this study consists of seven individual ethnographic and biographical accounts of the lives of the partic ipants and their family members. Rather than being told in one single authoritative voi ce, the seven narratives include not only the voices from all of the partic ipants, but also the voices fr om their own texts (e.g. books and journals in Barbara Newborn and Larry ’s case, and a speech and language therapy report in Vicki’s). Traditional “language errors ” were never corrected in transcription or

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41 in quotes extracted from partic ipants’ journals and presentations. Rather, as expressed by Parr, Duchan, and Pound (2003), they were seen as “poetic licence and legitimate expression” (p. 5). As a result, rather than bein g homogeneous in shape, the narratives resemble a quilt, in which different voices, perspectives, and points of views are included. During the process of “writing up” each ethnographic piece, participants were actively involved in deciding what should and should not be included in their narratives. They were also given the option to use their real names or a fictitious name in the final narrative, for the sake of confidentiality (all but one participant decided to use their real names). Why Stories? As discussed in the previous chapter, th e process of “making sense” of the illness experience involves the telling of one’s story. As expressed by Ellis and Bochner (2000), “Personal narrative, the pr oject of telling a life, is a response to the human problem of authorship, the desire to make sense and preserve coherence over the course of our lives. Our pe rsonal identities seem largely contingent on how well we bridge the remembered past with the anticipated future … The narrative chal lenge that we face as narrators is the desire for continuity, to make se nse of our lives as a whole.” (p. 746) Within the area of the neurosciences, A. R. Luria was perhaps the first scientist ever to delve into the personal experience of individuals with neurogenic disorders. With the creation of a new genre termed “rom antic science” (Luria, 1968), Luria opened a

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42 space within the scientific literature for the personal experience of the “deaf, the blind, the stroke victim, the amputee,” thus allowing us to “understand them as human beings, coping or failing to cope with the human cond ition rather than simply having ‘a medical problem.” (Bruner, 1987). Following in the st eps of this tradition are writers such as Oliver Sacks, who was deeply influenced by Luria’s desire to understand the lives of those affected by neurologic c onditions from “the inside.” Thus, borrowing from Sack’s preface to An Anthropologist on Mars (1995) the seven narratives that follow are presented as “s even narratives of nature – and the human spirit – as these have collided in unexpected ways. (…) they are ‘cases’ in the traditional medical sense – but equally they are unique individuals, each of whom inhabits (and in a sense has created) a world of his own” (p. xviii). How Were The Stories Sequenced? Bearing in mind the narrative types illustrated by Fra nk (1995), the seven stories that follow were organized in a continuum from tale s of restitution to tales of quest and transformation. Thus, in chapters one and two, Vicki and Larry describe their efforts to return to the status quo and resume their prio r level of function afte r the onset of their strokes. Chapters three and f our illustrate the journeys of Bob and Edie and the profound transformations they experienced within the fa bric of their family lives and their very selves, as they grappled with the conseque nces of their strokes. In addition, Bob and Edie’s stories investigate how perceptions of survivors and family members may be widely opposed, and how that may affect the way in which the self is reformulated. Chapter five illustrates Tom’s story and how he discovered new facets of himself as

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43 confronted by his disability a nd love. Finally, chapters six an d seven portray the stories of Curt and Barbara Newborn, as they look into the past, make their peace and move along with the journeys of their lives.

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44 Chapter 4. God’s Little Joke Ladies room of the Hyatt hotel during the Speaking out! Convention, 2004. With my hands dripping and looking for paper towels, I see Vicki coming into the restroom. Without a second thought, I run to her. “Excuse me, you don’t know me, but I know you!” “I’m sorry?” she startles, between puzzled and worried. “I’m a student at USF in the Communica tion Disorders Depart ment,” I explain, “and I saw you on a videotape in one of our cl asses! You were in one of the aphasia groups.” “Oh, yeah! With Cheryl Paul!” she laughs, as the pieces of th e puzzle slowly fit together. “I watched you talk about living with apha sia, and I never forgot it. You really made an impression on me!” In between the hu stle and bustle of the conference, I quickly explain that I was starting my thesis project and would love to interview her. Helpful as always, Vicki smiles and agrees to see me “Call me anytime, hon! Here’s my phone number” She left-handedly writes it, quickly and neatly. “Thanks! I sure will!” *** Sometime later in July. Without knowing exactly what to say, I dial Vicki’s number and wait for the tone.

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45 “Hello, Vicki?” “Who’s this?” she asks, in an attemp t to match the voice with the face. “This is Lini from USF. We met at Speaking Out!…” “Oh! Hi hon! This is my cell phone. Call me at home. Here’s the number.” I find her quick and straightforward talk amusing and endearing. Even though we barely know each other, I feel comfortable around her. We talk briefly over the phone and agree to meet at the Pa nera for a cup of coffee. *** Looking over every booth and every table, my eyes search for Vicki, but I can’t find her. “Could she be late?” I wonder, my eyes traveling search ingly to the pastry section. “Maybe I’ll have a muffin and a cup of coffee in the mean time.” I let my eyes and nose guide me towards the register and pl ace my order. As I start walking toward a table, muffin, coffee and all, Vicki finds me “Hey! So that’s where you are!” She had spotted me from her table, where she had been sitting the whole time with a friend. The table was slightly hidden behind a plant, where my eyes and my height didn’t allow me to see. We look for a separate table for the interview. As I set my gadgets she asks: “Is this your cell phone?” “No, this is my recorder! Would you mind if I taped our conversation?” “No, not at all!” she replies. Without furt her notice, she goes st raight to the heart of the matter: “I never thought it was going to get me down; I was too pissed off!” I smile again. Why beat around the bush wh en we can get straight to the punch line?

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46 Figure 2. Vicki’s calendar for April 2001 when she had the “Big Bang.” *** Vicki Gray, a 56-year-old female, was seen on -/-/200at the Communication Disorders Clinic for a communication eval uation. Ms. Gray reported she has suffered two strokes. The first stroke was mild and never diagnosed until she had her second stroke. She recognized a loss of smell and tast e, but doctors consistently attributed her symptoms to sinus problems or allergies. On -/-/200-, Ms. Gray suffered a second stroke diagnosed as a left posterior parietal cerebral vascular accident (CVA). *** Sitting across the table, Vicki’s two tiny, pitch black eyes look inquisitively at me through her delicate spectacles. I notice she ha s a large cast on her arm. She explains:

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47 “It happened on Sunday night, and I don’ t know how I did it. On Monday afternoon, I hiked myself up to my regular doctor and said, ‘I want you to look at my arm’. The nurse said, ‘Oh my god!’ I saw the doctor and I said, ‘Can you lance it?’ If they lance it… because of the Coumadin leve ls they won’t because they were afraid I would bleed to death…” A friend of hers comes by, and she excuses herself to say hello. As she turns her back, I notice the large bruise, on her elbow. I imagine it mu st be painful, and shiver at the image of a bleeding deat h. Vicki, however, talks abou t her arm, her life, and her stroke matter-of-factly. “I woul dn’t want to stroke out again, so I take my Coumadin, and I go get my blood levels checked. I go every 10 days, sometimes I have to go every 14 days, sometimes I get to go once a month. I ta ke my pills like I’m gonna have another stroke. And I don’t want one.” Matter-of fact down-to-earth, and strong as a bull. Figure 3. Vicki’s calendar, one month after her stroke (May, 2001).

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48 Testing Behavior Ms. Gray arrived early to the evaluati on, and entered the testing room with no sign of apprehension. She was friendly with the examiners and responded to the testing situation with a sense of humor. She coope rated with all tasks presented by the clinicians; however, Ms. Gray appeared to be experiencing stress during the evaluation. Her posture was sometimes inadequate for prop er breath support. [I have asthma!] She demonstrated significant attention to detail (e.g. interrupting in conversation, brushing her hair during the evaluation). Ms. Gray re ported “I don’t know what I would do if I didn’t go to speech therapy”. This sugge sted anxiety about changing her routine and transitioning out of therapy. All of the task s completed by Ms. Gray went smoothly and quickly. She often questioned the examine rs about her performance on tasks, asking questions such as “So, did I flunk?” Overall, Ms. Gray attempted all tasks, and generally did not appear to be frustrated by th em. Adequate samples of her speech, language, voice, and fluency were obtaine d for a reliable assessment. *** “When did you realize what had happened to you?” “I don’t know… At the hospital, I guess… I didn’t know I was having a stroke! I was 54! Come on! I have 1500 books in my hous e and I had a stroke! It was God’s little joke on Vicki!” Therapy Marathon I worked on it. Day and night.

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49 Probably 12, 15 hours a day. Because I couldn’t do anything. I went to speech therapy every morning. I couldn’t do anything exce pt work on speech, so that’s what I did. I would take naps, and I’d go back… and my speech therapist in the hospital gave me Xeroxed copies, and I worked on it. Day and night. I saved, I saved it all! This is all the stuff I saved, from speech therapy. I started out with these thin gs. I couldn’t say, I couldn’t write my name… I couldn’t do anything. And these are all…. from the beginning. As I got better… I got… bigger words. Every day! She gave me all these things, and I would say them all day long! And as I got better and better I could put these away! This is my… these were my… thes e were my Post-it notes! All over the house! My friend came an d she was here for a week, and she wrote everything down, so they we re all over the house! There’s a refrigerator, a light switch, and cl eaning products, and sponges… we had post-it notes, she put post-it no tes all over, so I could get these words out… and I couldn’t say these things… and then when I got better, I finished the post-it no tes. I did it from 5/31/2001 to 8/16/2001, and then I didn ’t use them anymore! I couldn’t say ABC, I couldn’t say 1-10! I couldn’t… It was unbelievable!

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50 I couldn’t… I couldn’t say, I coul dn’t write my address… I could screw up the zip code. Camera, camera, camera, camera… write, write, write, repeat. I couldn’t say… look… my addre ss! In the beginning... I always screwed those up [zip code]. Over, and over, and over… And I still do, I’ll reverse… I had to learn how to write my name, and my address, and then when I got to “Tampa, Florida” I would always screw up … Here is more, and more… oh, and my telephone, my SSN… because I would screw that up too! I had to learn how to write my name, and my address… Several ti mes! I couldn’t get it, because always 336… 33…467… something lik e that… that… here it was… 33447… 33744… 37474… whatever… I couldn’t say the word “stroke” … I couldn’t say… that I had a stroke! And I had to learn how to say “stroke”! Because I would say “what happened to me.” It was a “strake.” Strake? And then it was “stoke.” I couldn’t… And I said… writ e it down, so I can get that out when I tell somebody that I had a stroke! I couldn’t do my months… I couldn ’t do the days of the week… I couldn’t say happy birthday…

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51 Two months with my speech ther apist… I went everyday, for 2 months… and then he came to… she came to my house for 2 months, and then… for 2 more months it wa s 3x a week, and then… and then I went into speech therapy at the clinic. Phone, phone, phone, phone… I worked on it till I could get it… till I could write it! Phone, appa rently, was really hard for me! Lots of repetition! Spoon, lamp, book… everyday stuff! Everyday stuff that I couldn’t do… amazing, huh? *** I take a sip of coffee and try to convi nce myself that the strong-willed and talkative woman, sitting across the table from me, was once devoid of words. “I was by myself,” she continues. “I di dn’t have a spouse who could speak for me, I had to get better! My life was go back to Cali fornia, because the ne urologist said that, you know, I was never going to say another word ” I wondered why she dreaded the transition to California so intensely. She replies, as if reading my mind. “My lot in life was go back to California and have my daughter speak for me.” She has a daughter? I’m surprised! Was she ev er married? Questions rattle through my brain. Vicki continues. “That was a fate worst than death. She didn’t need me, a burden, and… because I’m so … de… independent… I had… I couldn’t… I had to do it, I had to do it. Otherwise, I would just… slit my wrists…” I tried to picture Vicki’s daughter, her age, what she was like, what mother and daughter were like together. I wondere d how old she was. Maybe Vicki was a

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52 grandmother? I could not tell. She did not volunteer much more information about her family on the first interview. I didn’t ask. My mind drifts to the images she evokes, always so poignant, so strong. Would she really kill herself if she could no longer speak?... if she became dependent on someone else? I wonder… Are doctors awar e of what may go through the mind of a patient with aphasia when they deliver thei r cold and shattering prognoses at bedside? Maybe in medical school residents learn to be detached and distant to manage the possible shock and sadness of lo sing a patient they cared for. For so many survivors, as for Vicki, the initial prognosis seems like an indelible scar, which resurfaces every time the stroke experience is re lived through narrative. Some survivors exhibit the scar proudly, others with resentment, but seldom with indifference. Vicki mentions that despite her discour aging initial prognosis, there was one speech therapist who did not give up on her. “H er only regret was she never recorded me, as I got better, you know? From the beginning to the end!” I Love You and I Hate You I would see Sharon, my speech therapist. There were times when… There was one time when I was just… I was so frustrated that I grabbed her little cheeks and I said “You’re such a bitch”, and she said, “Nobody has ever told me that I’m that in my whole life!” It was so hard! And it was so frustrating… The only things I could say were the words… curse words!

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53 Oh, God, I hated this so much! An d I loved it so much… I was so conflicted, because it was ughhhh!! I hated it! But I loved her, you know? Sharon, my speech therapist. Sh e helped me with my… balance checking account, because somebody would have to help me do that for 2 months… now I do my checkboo k… I never use a pen… anymore. It was overwhelming. My other clinicians? I love them! I loved them!! I wanted to glean… I… I just wanted to take… and… and get everything back you know!! I loved them! One of them, the first one was the… It was the black chick… What was her name? I loved her!! And she loved me! I asked her, every… I made her… Xerox everything… I wanted everything… The other… the… the… the… second on e was… a little blonde who was so… shy… that she had no idea… how to relate to me… But then we became friends, and she sent me all the… th e stuff in the internet with… with… the crossword puzzles, and math, and all that kind of stuff… and I loved her… and then the last semester there were two of them… and hmm… and they just ….cranked… ganged up on me! And it was great!! And Cheryl Paul would, you know, she sits in that little room [observation room], and if I would say something, she would respond! I always knew that she was there.

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54 I was… so… so bent on… getting better that… there was… there was no stopping me… you know? And… and at some point, you know, there… I had to stop because… they couldn’t help me anymore… I was done, you know? But I would have co ntinued doing it, as long as it took, to get my speech back… Figure 4. Vicki’s calendar, two months after her stroke (June, 2001). Dear Ms. Gray, It was a pleasure meeting with you on ?/?/200?. Your primary concerns included whether to continue communication therapy and maintaining your communication skills. In order to assess your abilities, several test[s] and measures were administered. A summary of our findings and reco mmendations is reported below.

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55 A battery of tests was administered to determine your strengths and areas of concern. (…) An evaluation of your oral stru ctures and functions reve aled that they were appropriate for speech production. An inform al assessment of your voice revealed hoarseness and inadequate breath support, re lated to posture and vocal behaviors. Pragmatic language usage during the evaluation revealed frequent interruptions and occasional difficulty with word choice during conversational speech. When presented with functional mathematical problems, your strengths included calculating tips and percentage-off sales. Your critical thinking skills were also assessed. Results indicated that your critical skills were appropriate fo r daily living. A ssessment of your receptive, and expressive language skills revealed streng ths in following simple directions and everyday commands. You demonstrated adequate reading skills by correctly identifying a medication and how often it should be take n. Overall, you appeared to use language effectively for everyday livi ng situations. Still, you expressed some anxiety regarding transitioning out of therapy. *** “I got riffed” “Riffed? What’s that?” “Reduction in force.” She laughs, with so me sarcasm. “I was kicked out. I was riffed from my job after thirty-four years. And I got riffed from speech therapy.” I look at her somewhat confused, not rea lly knowing how to interpret her. She continues, “I would like you to see my final evaluati on, because it pissed me off so bad… It was very clinical, you know? ‘She brushed her hair all the time…’ Oh my God! Who

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56 cares how many times I brush my hair? It was…” She sighs. “I never showed it to anybody, because it upset me so much…” “What do you mean when you say ‘so clinic al’? What was so upsetting about it?” I ask, feeling defensive and worrying that so mehow, in my diagnostics practicum, I may have offended my clients or their families, and not even known! “It was so black and white,” she explai ns, “like I was a case study. There was no… room… How much you… you… you’ve cha nged, and how much you’ve improved! It was so clinical that I read it and I put it away … I never… I showed it to my friend, the one who took me to the hospital. I showed it to my speech therapist, Sharon, and she said… She said that would piss her off t oo… She said, ‘Don’t worry about it because you know who you are.’ But it was one of those th ings that… It just… It takes your breath away, that it was so cut and dry. I didn’t want a pat on th e back… but… I worked for 3 semesters, and 4 months…T hat’s how I felt about it…” She pauses for a brief moment and then adds, “When you read it, you might not feel the same way I felt about it. But I thought… It was to the point that … I didn’t want to help anybody for a couple of months. I was just pissed off. How can this be so clinical that you don’t have any room for… To make… to tell somebody that…” I notice she was really indi gnant. “I’d like to… I want you to read it… because it’s one of those things that if you’re going to go into speech therapy you have to give the people who are improving on a daily basis, th e, the, the… motivation to …. to get better I don’t know how many people go through that. Th ey get so much better that… they get dismissed. ” ***

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57 Vicki’s reactions to the report caught me o ff guard. I was surprised to notice I felt defensive. I had just finished the clinical practicum she was descri bing (DX II: diagnostic evaluations), and I started lis ting in my head all the reas ons why our reports were so clinical: insurance companies, accountabilit y, reimbursement, treatment coverage. I had always been taught that reports had to be objective. That was the space for facts, not emotions. After listening to Vicki, however, all my excuses paled. Several months later that I came across a b eautiful defense of Vicki’s cause in an article by Simmons-Mackie (1998). While discu ssing the issue of “plateau” and discharge in speech therapy, Simmons-Mackie comments “Issues related to adjustment to aphasia, social participation and psychosocial well-being have been relega ted to a grey area on the fringe of aphasia management; an area in wh ich counseling and education were considered the treatments of choice. Perhaps the term ‘psychosocial’ has provided an excuse for neglec ting responsibility.” (p. 233). Neglecting responsibility. As I read thos e words, the full meaning of Vicki’s comments hit me straight in the face, as an awakening punch. Who are we treating, as professionals? Or rather, what are we treating? In our current impairment-based model of rehabilitation, we have long lost sight of the “person the disease has,” as quoted from Sacks (1995), and have focused on the impa irment that consumes them instead. Reminding us that communica tion is a “social and emo tional endeavor,” SimmonsMackie continues, “Perhaps discharge is viewed with distaste by some clients because we have not overtly addressed a major aspect of their communication. We

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58 assume that, if information exchange im proves, then social interaction will improve. This constitutes a narrow vi ew of the interactive process of communication, which requires opport unities, discourse management strategies, confidence, collaboration and face-saving expertise in addition to raw linguistic skill.” (p. 234) The problem, however, seems to have d eeper roots. The philosophy underlying traditional therapy approaches assumes an as ymmetrical relationship between client and clinician (Hinckley, in press). Clinicians s timulate, clients respond, clinicians provide feedback. From our all-knowing positions, our professional authority is reinforced. We know what clients need and c lients comply. The situation is ironic, however, in most settings, as several clinicians are much younger than most clients. Accepting the possibility they might know their needs better than we do requires a leap of faith, a willingness to approach therapy as a road to discovery not only for the client but for the clinicians themselves, as competencies and strengths of individual clients unfold. As mentioned by Hinckley (unpublished), taking su ch a leap of faith requires a paradigm shift, in which clients become the experts. Are we ready, however, to take that leap? *** As I returned home from my last interview with Vicki, a deep feeling of disappointment in myself invaded me. With a sigh, I listened back to my recording and went over the high points of the interview in my head. There were so many doors Vicki directed me to, but did not let me open ju st yet. I wondered about her growing up, her family, and the topics of the 1500 books she said she has in her house. I waited until I had

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59 my first transcription done and contacted her again, hoping for a second interview. This time, we met at her house. *** The directions lead me to a quiet neighborhood and a house close to the pool. A petite but charming tree was at the entrance, with wind chimes and bird feeders. I knock at the door and Vicki greets me. “C’mon in, hon. Where do you wanna talk? Kitchen OK?” Falon, Vicki’s dog (a large and loving bl ack poodle) was protective at first. After a couple of sniffs, we became good pals. I leav e my camera, tripod, and recorder on the kitchen table, and my curious eyes start to wander. I notice the art on her walls, the glass sculptures, and the several bookshelv es, replete with thick books. “You like Mir!” I comment, looking at the dining room walls. “Yes, I do!” She responds. “And Kandi nsky… And I love glass…” she adds, noticing my looking at th e glass sculptures. I smile and say “I can tell! They’re beautiful!” She shows me one of the paintings in the living room, “And this is ah… original… I can’t remember the… but it’s all… it’s… nursery r ooms… nursery, nursery rhymes…” I look at it closely. It’s an intricat e painting, in black and white. It reminds me of primitivist paintings and tales of folklore. “I tried to figure out all of the stories” She continues. “This is the… this is li ke Diane in Wonderland…This is the… There was an old woman, who lived in a shoe … this here is the children… this is the three pigs… and this is Jonah and the whale.” Turning to the other paintings on the wall, Vicki continues,

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60 “This is Kandinsky. And this is also Kandinsky.” She l ooks at a curi ous painting in blue overtones. “This is called ‘The village’ and if you look close enough you will see 8 faces and bodies. There is a whole villag e up the stairs… and there is a body here… and there is a body over here…” I look at the bodies who suddenly transfor m themselves into buildings and ask “Were you always interested in art?” “Yeah… well, my… second cousin was… Jackson Pollock… the painter… and my brother is a literature professor.” As we settle ourselves in the kitchen, Vicki allows me to approach and open some old family doors. Social Ms. Gray stated that she enjoys spendi ng time with her friend s and that she likes to stay busy. She stated that she has a multitude of friends who are very helpful in supporting her through her stroke by taking tu rns reminding her to take medications. She reported that she used to en joy reading, but she “gets bored too easily” now. Ms. Gray explained that a typical day for her includes getting up, taki ng the dog out four times a day, working on vocabulary and math, watchi ng T.V., and going to dinner or another social event with friends and/or family.

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61 Figure 5. Vicki’s calendar three months after her stroke (July, 2001). What Do You Wanna Know About Me? Originally? California. Southern California. Upland… it’s about 35 miles… east of Los Angeles, and th en I ended up in Thousand Oaks, which is about 35 miles north of Los Angeles, between hmm… Los Angeles and Santa Barbara, and th en… I came to Tampa in… 96… I lived in California for 50 years and then I moved to Tampa. So I’ve been here 8 years. But I moved… I have… I moved 11 times. Total 11 times. I’m a Jewish Mexican. My mother was Mexican. My father was a Jew, so… I’m a Jewish Mexican. They met at Berkeley, they were going

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62 to school. They knew each other fo r 4 weeks before they got married, and they were married for 52 years. Well, it was in the… It was in the 40’s, you know, or in the 30’s, I do n’t know when it was, because I was born in 46. My father was a nursery man. My father was a farmer. Probably my father was… my father was a bo tanist… A botanist. He had a lot of money and then lost a lot. He lost everything… with bad investments. They never tried it again. My mother went back to work when she was 70… 56 years old. She was a… librari an. I think she went to school to be a… an English teacher. I don’t know anything about my Mom and Dad. That was the generation that kept everything… se cret. They kept all their secrets… My mother never told me all her th ings that bothered her with her husband, or… they… they… they just di dn’t share… So we really didn’t know our parents very… well, but… yo u know, I know that I was loved, that I was… I was the apple of thei r eye. We’re all dysfunctional. It’s just a matter of degree… Brothers. I have two brothers. I’ m the little girl, little sister. I have a brother who’s a professor of literature, and he was dyslexic, and he couldn’t read or spell. And he went through… not speech therapy, but a tutor. And my othe r brother must be 62 now, but we really don’t talk. When my mother passed away he was horrible to me,

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63 and I… I just, I haven’t talked to him. I haven’t seen him since 1992, and I’ve only talked to him half a dozen times in 15 years. He doesn’t know that I even had a stroke… ever called… As far as I’m concerned, he’s a sociopath. He never… he do esn’t have any regard for anybody else. He’s… he’s… only interested in … his… life… and … he’ll take your life with you… with emotion if he ha d to… I just, I don’t need it, I don’t need it in my life… I don’t need, I do n’t need it in my life… I don’t need to be hurt again. Growing Up Everybody in the house was… literate. Artists… we had artists… I told you that… Jackson Pollack is my cousin. That’s how I grew up. It probably molded me. Everybody is real literary! I grew up with nothing bu t books. My parents had artists for friends. There’s a picture of my mother that one of her, an artist friend, charcoaled her… her face… and that’s the only picture I have of my mother. Everybody that I grew up with, my mom and dad’s friends, they were people that … It was the… during the time of… Communism. My

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64 uncle went underground because he is a communist, he was a communist. It’s an amazing story… It… shapes you as you grow up to be the kind of person that you are, and the things that you believe in. I never wavered from the kind of person that I am… I never wavered… My father was Jewish, and my mother was a Catholic until her mother died when she wa s 14. But we grew up with everybody in the family is Jewish, and everybody, a ll the friends were Jewish, so we… we… celebrated Hanukah and Christmas, and because there was no… really… religious... up… upbringing… I don’t go to church… I am more Jewish than I am Christian. I’m Jewish, everybody was Jewish. In the 40’s and the 50’s it was whatever it is still is, but, hidden. People … they’re such hypocrites and people are so mean, and there’s so much hatred in the world… We were… we were sheltered from that. I had never heard the n-word. It’s not a word that I use… it’s such a horrible word that I’ll stop anybody from using it because it’s so…. latent with hate… I take everybody as they… as th ey are… I don’t say anything about the Indians, I don’t say anyt hing about the blacks, I don’t say anything about Jews, because I am… and Jackson Pollock was my dad’s cousin, second cousin.

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65 *** I wonder if I should ask her. The amorphous image of her daughter lingers in my memory. I see pictures of children in her ki tchen. Could they be her grandchildren? “Yes, they’re my grandchildren.” She answer s, after I realize that I have actually asked her what I thought was just my own internal dialogue. “Can I ask you more about your daughter?” I attempt. She looks at me for a while. “S ure hon. What do you wanna know?” “I don’t know… tell me about her.” *** A fate worse than death She’s thirty eight years old, and she has two kids. She does everything right, and I do everything wrong I guess… But we’re OK… It’s just bizarre… She’s a stay-at-home mom… Whatever she has to do to get through life Is fine You have to let go Cut those apron strings at some point

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66 And let them go on To be whatever they’re going to be… You have to do that Otherwise They cling… and I’m not a clingy person! So you just have to let them go. That’s, that’s… the grand-scheme of things in life: Just letting people go. I have two grandchildren. They’re wonderful! But I don’t get to see them. They’re in California. I talk to my daughter 3x a week But I haven’t seen… My little grandson is going to be 2, and I’ve only seen him twice. My granddaughter is 4 and I’ve seen her 5 times in my life. It’s hard to get there… My daughter is… I love her to death, but… She’s a control freak! She controls everything! She controls drinks of milk that I give to them.

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67 It’s hard… My parents weren’t like that… My daughter got to do Everything! She went to the beach eve ry week, and she got to… Enjoy… She enjoyed herself. And now it is… She controls… everything… with her kids… Controls every… It’s very hard… it ’s hard for me. She’s very religious, and I’m not… and was not… To me…well… now she’s very religious Everything is about Jesus. The kids are going to Christian schools… Sometimes you can be a zealot She is a real zealot with religion. And I’m not… And it bothers her That I’m not

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68 I don’t follow the Lord’s path. When you’re dead, you’re dead! You’re done! They don’t talk to you anymore! You’re done!! Whether you’re 15 years old If you’re 7 months old, or if you’re 55 years old! You’re dead!!! Something is going to get you… Whether it’s this elbow Or it’s your heart Or it’s your lower back Or it’s a shoulder Something is going to get you As you get older you just You just know that these things are going to happen But it isn’t because I got a direct line to Jesus Christ… I just want it fast…

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69 I don’t want to have another stroke I would like to lie, die in my sleep But that’s what everybody wants! Let me be who I am! Don’t try to… You can’t… But they’re… What they… They’re supposed to spread the word…. They’re supposed to tell everybody about Jesus Christ Don’t do it to me! I’m your mother! Let me be whoever I am You do whatever you have to do to get through your life And there’s nothing I can do about it Except deal with it. Whatever way I can deal with it…

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70 Just be who you are! But let me be who I am! *** “Do you ever feel afraid?” “Sometimes.” She stops and thinks for a while. “If I get a real bad headache, I always think that I’m going to get another… that I’m going to stroke out again… and then I just start talking more. Because… Oh God! That I would lose that… I mean… What a loss! It was such a loss… for so long… And… you just… take it… Completely different path… When something like that happens to you, because you can’t equate it… Nobody knows what you went thr ough. It’s like a death. It is a death. It’s a death and a re… a rebirth. And it just makes you a stronger person. A better person.” “Is it like a scar, that won’t go away?” She pauses. “I don’t think it is a scar. I th ink it as just another… Something I had to deal with. You know?” I nod. “When you say it was life changing… Do you feel you’re the same person you were before?” “I think… If somebody pulls in to you while you’re driving, I just let them in. It’s one of those things… If you want in that ba d, get in… If you have a red light, run it… you know? I’ll always stop… Because people are in such a hurry, always… They’re so impatient, and they honk their horns, and they bitch at pe ople. Why? You don’t even have a clue what’s gonna happen to you tomorrow! You know? And for me, I had

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71 another tomorrow. I had a tomorrow. A lot of people didn’t thi nk I was gonna have a tomorrow. I didn’t know that… that it was so… life thre atening for me.” *** Based on the results of testing, the diagnostic team recommended that you continue therapy to address pragmatic l anguage and vocal behaviors. Additionally we recommended that you consider counseling op tions including vocati onal rehabilitation or other community re-entry assistance. *** Figure 6. Vicki’s calendar four months after her stroke (August, 2001). Who am I? I’m Vicki!

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72 I’m the same person I’ve always been! I’ve never changed! I’ve never changed my philosophy, the way I react to people. It was just another journey You get curves in the road That was a curve in the road, you know? I always thought I was a pr etty good person anyway And I think I still am. Why I read? Because I want to know EVERYTHING. I want to know A LOT about EVERYTHING. I have 1500 books in my ho use and I couldn’t read! It was God’s little joke on Vicki! I started reading again. Two weeks ago. I started back with the mysteries I love. But I didn’t read for 3 years Because I was so pissed off. When I stroked out And I knew I couldn’t read I still went to Barnes and Noble

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73 And bought books. I always have new books It makes me who I am. I can study people. I know exactly what kind of person they are Maybe 6 months later They turn out exactly how I told they were gonna turn out. I don’t give advice. I wouldn’t say what you need to… What you’re supposed to… People don’t wanna hear that! And who am I to…! Judgment! If they asked me, I say “This is what I would do… If it was me.” I have too much stuff that I want to read now. And write! Write a book with my brother Or be a motivational speaker

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74 You just have to give back! It might just be my journey, you know? But I had fun! I had a good run! When I die Don’t grieve. Have a party On my behalf. I really like my life! *** “What do you think of yourself, how do you see yourself!” “How do I see myself? I don’t know… I think I’m pretty cool!” “What makes you tick?” “What makes me tick? I don’t know what makes me tick. I just know I’m still ticking!” She laughs, with pleasure.

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75 Figure 7. Vicki’s calendar five months after her stroke (September, 2001) March 18 2005. I knock on Vicki’s door and Fallon immediat ely announces my arrival. Vicki and I do some small talk, and she mentions she could not read the tr anscriptions of the conversations from our previous meetings. “I just hated all the ‘h mms’ and ‘ahs’… I was pissed off… So I didn’t even finish reading it. It just brought a ll the aphasia back. I thought I was over it.” Upset with myself fo r not being sensitive enough to edit the hesitations beforehand, I apologize to Vicki. Sh e asks me not to record this meeting, and silently I promise myself never to do the same careless mistake again. I tell her I had finished writing her story, based on our interviews, and she agrees to have me read it to her. I was pleased a nd exhilarated when I not iced that, throughout

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76 the reading, she nodded in agreem ent, and at times, finished my sentences! “It’s good that I always tell my story the sa me way, isn’t it?” She comments, laughing “at least that way people know I’m not lying!” When the readin g was over, Vicki exclaimed “You have to show this story to my speech therapist! Sh e’ll get a kick out of it!” She goes to her kitchen and writes down her therapist’s phone number. I feel happy and relieved she forgave me, and I can see that sh e had liked the final narrative. I pack up my things and we go outside. Fa llon is excited, playing catch with her ball. “Can I hug you?” I ask Vicki. She looks at me and smiles, “Sure hon! Come here!” As Fallon returns with a battered tennis ball in between her jaws, I pet her and say goodbye to Vicki. Figure 8. Vicki’s calendar six months after her stroke (October, 2001)

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77 Chapter 5. Diamonds are a Girl’s Best Friend Through the Looking Glass First semester of graduate school, summer 2003. Amid the usual hustle and bustle of client s and clinicians in the speech clinic, I thumb through the old schedule bi nder in search for an adul t treatment session to observe. I scribble down a few room numbers and check my watch from the corner of my eye. The timing is tight, but with some luck I will be able to find an empty seat in one of the observation booths. I try the first doorknob and ta ke a peek inside: empty. Relieved, I enter the small room, put on a set of earphones, and open the mini-blinds into the session. Through the one-way mirror, I see a grey-h aired gentleman working intently on a spelling task with a young clinician. His voice is paused and deliberate, marked by a soft but steady cadence. From time to time, I no tice his semblance wrinkle in frustration as the quickness of his mind stumbles on the de liberateness of his speech. However, the lines in his forehead are usually relieved by his sharp and refined sense of humor, which opens the gate to a broad and truthful smile. A few minutes later, the door squeaks softly as the clini cal supervisor comes into the booth to take her notes. I pass her a set of earphones, and we both watch the remainder of the session quietly. As it draws to an end, I break the silence and ask her about the history of the client. She smiles and replies,

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78 “Larry? He is our jeweler. He just passed his gemology recertification exam a few days ago. It was a great achieve ment, we were all ecstatic!” I take one more glance through the looking glass. I feel the desire to enter the room and congratulate Larry for his achieve ment, but I stop myself. The one-way mirror had allowed me a glimpse into a world to which I did not yet belong, and all the information I had learned was to remain confidential. For all intent and purpose, I had never been there. The following year I would frequently run into Larry in the elevators and hallways of the department, and I would wo nder how he was doing. It was not until I became a student clinician, however, that we were formally introduced. We never worked together in individual ther apy, but I would always see hi m during groups. As he was quite advanced, he frequently worked as a mentor, guiding other participants who needed more assistance. At the end of the spring semester of 2004, as we were finish ing our reports and completing our assignments, Larry found out he was graduating from therapy. The formal announcement was made on our last group sessio n, and everyone demanded a speech. It was a very emotional moment for all of us I tried my hardest not to cry, as I had promised myself I would be professional while saying my goodbyes. I saved face with some grace with all other memb ers of the group, but my mask fell as I hugged Larry and his wife Susan, tears rolling down my cheek s. What was it, in the eyes of this experienced jeweler that disarmed my carefully constructed shield? *** Summer, 2004 – end of the firs t year of graduate school.

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79 I dial Larry and Susan’s number and cr oss my fingers tightly, hoping catch them at home. After a few beeps, I hear Larry’s vo ice on the other end of the receiver, and we exchange our warm hellos. As we catch up on our recent news, I tell Larry I had started working on my thesis project and ask him if he would be interested in participating. “Sure!” he obliges. I thank him profusely and I can hear him chuckling softly. “You have directions?” he asks me afte r we schedule our first appointment. “Don’t worry! I can probably figur e it out.” I reply self-confidently. “You sure?” Larry double checks, knowing I had not been driving for very long. “Yeah,” I reply. “I’ll be fine. Ca n I call you if I get lost?” I ask. “Sure!” New Driver on the Rainy Road July 20th, 2004. Sure enough, on the date of our scheduled interv iew, Tampa was greeted by profuse and torrential summer storms. As the wipers dance frenetically on the windshield, I stretch my neck and search faith fully for the yellow line on the pavement to ensure I would not pay an unexpected visit to the lane on my right. I find the correct exit off the interstate and drive around in circles before realizing that my good internet directions were not that good after all. Swallowing my pride, I reach for the cell phone. “Hello?” Larry answers. “Hi… It’s me… You were right, I guess I’ll need directions…” Larry laughs warmly and guides me to the correct route. A fe w minutes later, I arrive safely at their door.

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80 Transition 5/6/02 – MONDAY THE DIAMOND HAS FOUR FACTORS OF QUALITY; CUTTING, CLARITY, COLOR, AND CARAT WEIGHT. CUTTING IS THE ONLY FACTOR THAT IS MAN CONTROLLED. NATURE DOES THE REST. Larry’s Journal Entry. Larry and Susan welcome me warmly to their home. As I place my recorder on the coffee table and take the informed consents out of my bag, I notice the traditional and harmonious decoration, which is nicely complemented by the soothing background music. Pictures of family members are carefu lly arranged on the walls and on a side table across the hall. We all sit comfortably in the spacious living room and briefly catch up on news from school and the clinic. I ask Larry how he has been keeping up after his graduation from speech therapy. He laughs and says, “Well… hmm… busy and not busy… Because… hmmm Susan … 3 or 4 times a week…” “I work about 3 days a week, every morning…” Susan explains. “So I have… I guess I… fortunate… I… seeing the news or, Fox channel… News worthy… Clean up the house, vacuum…” Larry continues and smiles gallantly. “You’re a lucky lady! Don’t we all wish for such a devoted husband!” I say. With a smile, Susan adds, “Well, there’s also your therapy homework!”

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81 “Yes, therapy!” Larry nods. “Two or thre e days at school. Now, graduation, changing the pattern. But I have homewo rk to do, repeated homework, so… I have hmm… interspersed therapies, news, golf… and… sports… Saturday, Sunday… I… stay busy… and exercise… periodically… treadmill garage… and golf… So it’s boring and… unboring…” he concludes. “Actually,” Susan mentions, “Larry re ally wants to get a job. We’ve been working with the Easter Seals, and I think something is going to happen very soon! We have an appointment this afternoon…” La rry looks at her lo vingly and nods in agreement. “Really! That’s very exc iting news!” I exclaim. “Yes!” Susan continues. “They’ve been very positive, you know? He’s going to see what happens. It’s been a long process be cause of the doctors, and you have to have forms filled out, it goes on and on… but I thi nk we’ve gone through that part now. We’re at another level.” Larry listens quietly, acknowledging. After a while he intervenes, “Hmmm job interview, I guess… Job Etcet era… Job Etcetera… Job Etcetera is sponsored by the state and federal government to get jobs for physically disabled… And I, three or four months, Job Etcetera, and … hmm… the … agency is now Easter Seals. So, I have two… one appointment and two appointments now… set.” “Tell her about the interv iew you had!” Susan says. “Well… I interviewed the… occupational therapists interviewed me to… hmm… because I hmm… was up and about… and knowledgeable, you know?... Five years of college, ten professional degrees, and active… So she said… I would like to… attempt

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82 to… attempt to get you to… hmm… PT tech… here… because… hmm… an office… but… then… last week… the hmm… the job is unlisted because budget… So… but hmm the… advisors… indicated volunteer and then… budget… comes … two months… so, I don’t know, it’s… But… courier … bank courier is number on e… or chauffer… chauffer disabled people… but… poor inco mes…Volunteer, yes, but…” Noticing the hesitation in Larry’s voi ce I comment, “Volunteering is very rewarding, but after a while I think y ou start to long for something else.” “I guess it reaches a saturation point…” Susan nods. Larry sighs and adds, “But anyway… Is invigorating because… I definitely job search…” The Mother of all Gems 5/8/02 – WED. CLARITY MEANS A DIAMOND.S INTERNAL OR EXTE^RNAL BLEMISHES. ONE OUT OF FIVE THOUSAND DIAMONDS ARE FLAWLESS.THE REMAINDER OF THEM HAVE FLAWS. COLORLESS IS THE TOP RANGE ON THE DIAMOND SCALE. ONE OUT OF TEN THOUSAND DIAMONDS POSSESS THE COLORLESS QUALITY. THE REMAINDER OF THE DIAMON’D S ARE VERY SLIGHTLY YELLOW TO TRAINED EYES, TO YELLOWIS H TINT TO UNTRAINED EYES Larry’s Journal Entry. I was… born West Virginia… My father died when I was five years old.

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83 Pneumonia and flu… flu and pneumonia… Thirty-six my father died… Before … hmm… penicillin. My mother… inherited jewelry store… I guess my father owned it 29 to 36, and I was born December 1930. I have a sister, Peggy, four years older than I am. I looked more like dad, and Peggy more like mom. Tell her what your mother did before all of this happened… Mother was school teacher… Hmm hmm… She was a school teacher who became a jeweler… She was a woman’s lib before the word ever existed! Well… But… Mother’s mother passed away when she was nine, and four of them, four of them … four siblings… hmm… Mother and sister youngest, and two brothers. So she was the female of the house. Nine years old!! So my mother is… hmm… hmm…

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84 guess… hard work all her life… and the third one died at the age of 13 because appendicitis… and hmm… she was… always handling family, so difficult all her life. Then father died… hmm… I guess nine years of marriage and then widow… I was five… Peggy was nine… Peggy was the same age your mother was when she lost her mother… They were both nine… I had never thought about it until you just said that… Yeah… So… so… I was a… a…. hmm… chaperone, and, hmm… caregiver, so… my mother is all I have ever had… She never remarried. She had many opportunities, but she never… She said, ‘I love…’ She loved Larry’s dad… ‘…Larry’ His name was Larry

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85 See, first five years, or six years, I was Sonny… Sonny… and I guess my father died in March, and then she called me Larry… *** 5/10/02 FRIDAY THE CARAT WEIGHT IS ONE-FIFT H OF A GRAM. THE WEIGHT OF THE GRADED DIAMOND IS STATED IN CARAT AND HUNDREDTHS OF A CARAT. THE CUTTER IS COMPLETELY IS CHARGE OF CUTTING THE DIAMOND. THERE ARE GUIDELINES FOR CUTTERS TO FOLLOW. A PORTION OF THE CUTTING IS SACRIFICED FOR SIZE; THEREFORE, SIZE AND B EAUTY ARE OFTEN LOST. CUTTING IS THE MOST NEGLECTED OF THE 4 C’S BY MANY JEWELERS. Larry’s journal entry. During our aphasia group mee tings at USF, we frequen tly had the opportunity to go on outings. As I liste ned to Larry’s family history, memories from group started to emerge. Trying to organize my thought s into a coherent question I ask, “Larry, remember when we went to that pottery place with the aphasia group?” I ask. “Yes!” he replies. “I noticed that you decided to paint different styles of gems on your tile. You even brought your stamps, remember?” He laughs “Yes! Yes!”

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86 “How did that passion start? How di d you discover the world of jewelry?” Larry smiles, thinks for a moment and then answers, “I guess I remember hmm… Daddy… hmm… was… sick bed and then… I remembered… eight or nine years old, hmm … watch making, wa tch making… I had a watchmaker employee of my mother’s and I used to sit down, or stand up and watch… hmm… him work… So I said, ‘No way was I goi ng to ruin my eyes…’ I said, ‘I don’t want to be a watchmaker.’ Daddy is a… hmm… elder in watch company… he was schooled… hmm in the 30… 30’s… no… 20’s! Sc hooled as engraver and watchmaker, so… I said, ‘No way I was going to be able to… repair watches…’ So I guess I gemologist…” From Bridges to Business and Counter Intelligence Core In the beginning, I wanted mechanical engineering… build bridges… But I… recanted junior year in high school and I started to… University of Cincinnati, Ohio accepted me… in the college of business administration… I have hmm… feelings about leaving Mamma alone at the store. You did a… co-op… Tell her… co-op… Co-op… hmm… first year… then…

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87 hmm… ten months schooling… then ten months… business… no… 10 months… no, no, no… One semester…? No… Hmm… ten weeks of… employment and three… hmm three… two… hmm… ten… hmm… ten... and… weeks of school, and… for four years, and I was employed by my mother… So I have college job experience! Twenty-one weeks of school and hmm… Thirty months of hmm… work. There are very few schools in the US that offer that kind of program, but the University of Cinci nnati is one of them. It’s called the co-op program. You get a balance between school and work experience. Hmm hmm And after that…? After that?

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88 After that…Tell her about what you did in the Army. I’m very proud of you for that… Hmm… I was privileged to become an ROTC graduate… No vember 30, no, November 15, I… hmm… 1953… I was… commissioned in the Army. So the fighting was all over, but I was a Korean War Veteran. But I fought the battle from Nashville…. [laughs] But hmm… anyway. I…bashful… hmm… 35 years… hmm… No, thirty years… No, twenty-five years… Bashful… Hmm… Friend of mine’s shadow… [laughs], but later I… was in the CIC, the Counter Intelligence Core… So I had to… Blossom out. Two years after qualifying for CIC, I… Field agent, fourteen months. Army with civilian clothes. Everybody thought I was an FBI agent! But I was investigating top secret clearance for hmm… anybody who had a top secret clearance…

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89 hmm… in the Washington area. So I was the Super Duper Pooper Scooper [Laughs]. Then I was… was engaged to a girl, and I married… two years later. Match Made in Heaven and Two Angels to Go with It 5/5/02 – SUNDAY DIAMOND’S ARE A GIRLS BEST FIREND FRIEND IN 1840, THE DUKE OF BURGANY, AUSTRIA, PRESENTED HIS LOVER A DIAMOND RING. BECAUE OF THIS, THE ENGAGEME NT RING BECAME SYMBOLIC. Larry’s Journal Entry With my full attention devoted to the story, and trying to anticipate the next turn of the plot, I ask, “So that’s when Susan entered your life?” “No, actually I’m Larry’s second wife” Susan replies. “Really?” I ask, surprised. “Hmm hmm…” Larry answers. “First wife, Liz. Married seven years. We had two girls, Amanda and Sarah. But when Liz have second baby… hmm… hmm… hemorrhage… didn’t stop… and hmm… three hours later she died… she never saw… baby. I, thirty-two… Liz thirty… I widowed.”

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90 “You had to grow up fast, huh?” Susan says and smiles. “Fast, yes!” Larry chuckles and softly holds Susan’s hands. After a pause he continues, “Anyway, I suddenly became a man and hous ekeeper. Imagine myself supporting a baby, big responsibility! I… cared for them at home… In hospital… hmm… hmm… hmm… the baby was in the hosp ital a week, th en I have a… I… re cruited a… you know, caregiver… so… hmm… My sister… was a nurse… and she would… fortunately the… hospital and… the… caregiver, and… and… the… was… all three blocks from the nurse… oh, no… Anyway… she was… able to pick up the caregiver… then I… would have six o’clock arrival and hmm… the n… hmm… caregiver… fixes dinner and then… the girls and I go… hmm… give her a ride home.” Amazed by how they harmoniously weave their sentences together, I ask, “So… How did Susan enter the story?” They laugh and Larry answers, “Blind date!” “No kidding?” “Hmm hmm…” Larry confirms, “I… was widowed, two and a half years… and hmm… my best buddy… hmm… golfing… and hmm… two days of golf. And hmm… friends… anyway, he said, 19th hole… you know…” he chuckles and continues, “Friend said, ‘Larry, hmmm… Johnny’ s girlfriend… has… has… a… girlfriend… and … I would like to… hmm… hm m… bring her… so you have a date…’ and so… hmm… I guess… six weeks occurred… and hmm… the hmm… Labor Day

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91 weekend, I had a date two… for two days. Saturday night… and Sunday night… and… and Monday. And… we fell in love! “Right away?” I ask. “Right away!” Susan confirms. “It was love at first sight! And two little children to go with it!” With a proud maternal smile, Susan adds, “They were… two… and… four… When we got married they were two and a ha lf and five and a half. They are beautiful children! Just beautiful!! I’m so proud of them!” The Making of a Jeweler 5/13/02 MONDAY IN 1934, ROBERT M. SHIPLEY ORGANIZED THE AMERICAN GEM SOCIETY, KNOWN AS THE A.G.S. THE A.G.S. IS THE JEWELERS’ ETHICAL PROFESSIONAL SOCIETY, SO AS TO ELIMINATE ANY MISREPRESENTATION CAUSED BY IGNORANCE OF THE TRUE NATURE AND VALUE OF MERCHA NDISE OFFERED FOR SALE. THE DEVELOPMENT OF DESERVED TRUS T AND CONFIDENCE IN THE RETAIL JEWELER BY THE GENERAL PUBLIC IS AN A.G.S. STORE. Larry’s journal entry. I have hmm… Fourteen months Nashville, Tennessee corresponding with Liz… So I… started to… to… corresponding with… hmm…

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92 diamonds, and… gemstones. With the… Gemological Institute of America – GIA. So I… am proud of that. Then… Liz had died two and a half years I… Set out to begin a certified… Thesis… and I became… hmm… Certified gemologist in… Three years… With Susan… Then I, advanced degree at… hmm… well… 1963… hmm… I became a certified gem appraiser. 1983… they didn’t have the title until 82… so it was 83. Yeah… So I had three degrees… and certified… hmm… so I… and after, in 63, we bought our… store two. Hmm hmm… No… in 68… 68? Hmm hmm… We weren’t married in 63… Oh! Right… And hmm… So you bought store two in 68, store 3 in 82.

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93 And close them all… And then we closed all three. *** Several months later, when I return to Larry and Susan’s home to show them the first draft of the chapter, Susan describes the complex process of becoming a Certified Gem Appraiser in greater detail. “First, you graduate from the Gemologica l Institute of America or GIA” Susan explains. “After that, you become a Regi stered Jeweler and finally a Certified Gemologist, both through the American Ge m Society, or AGS. In Larry’s case, he graduated from the GIA and became a Regist ered Jeweler through the AGS when he was in the Army. Then, after Liz died, he became a Certified Gemologist. Years later, in 1983, the American Gem Society created a nother title level cal led the Certified Gemologist Appraiser, which is used for courtroom purposes. There are only about three hundred Certified Gemologist Appraisers in the United States and Canada, and Larry is one of them. The complication of that title is you can only use it if you are affiliated with a business that holds the AGS title. So nowadays, when Larry does an appraisal, he signs it the Gemological Instit ute of America. He has to go back in his level because he’s not currently affiliated with any stores. However, if he were to be in a courtroom, he would be there as a Certified Gemologist A ppraiser. It is really complicated!” Thinking back to the beginning of the chap ter, I wonder which one of his several certifications Larry was renewi ng at the time. As if readi ng my mind, Susan continues, “What you described in the beginning of the chapter was how Larry renewed his Certified Gemologist Appraiser Ce rtification. He has to take that exam every year. It is a

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94 really complex exam, and you need to have a lot of schooling behind you to answer even the first question. And Larry did it, aphasia and all!” From Santa Claus to the Budweiser Bubble “Larry, you must have so many interest ing stories of proposals and engagement rings from when you had your stores…” I comment. He nods. “Can you tell me a couple?” “Sure… I guess I sold an engagement ring to St. Claus once!” He smiles. “Really?” “Yes. He was a college age student but hmm… hmm… hmm… Santa Claus is outside the… counter line and I sold him an engagement ring!” “Was he dressed like Sa nta Claus?” I confirm. “Oh, yes, yes, yes!!” “At the store?” “Yes, yes! Santa Claus and beard…Yes, and so… Engagement ring. And then I… I… oh…. Hmm… the… couple gay people… si xties, seventies. Hmm… gay people, wedding rings… And then I hmm… professo r in… two professors hmm… 60’s… no, 70’s… hmm… white female, black, black… hmm… “Male?” I ask. “Hmm hmm…” Larry confirms. With a mischievous look on her face, Susan suggest, “Tell her about the Budweiser…”

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95 Larry chortles as they exchange knowing glances. “Ok… The mall store, the hmm… wher e hmm… two stores… College kid… working… the mall hmm… the hmm... robot… was… is… moving up and down the hall…” “It was supposed to be Halloween…” Susa n explains “So the ki d was dressed as a robot” “Oh!” I laugh, as I get the missing link. “So… robot…” Larry continues, “Hmmm …. Entered my store! And I was… hmm… hmm cameras… service desk… and I… was hmm… hmm… and I had a beer belly! So, he said… hmm… Robot, pointing…” “The robot? Pointing to your belly!” I ask. “Belly, yeah! He said ‘You have a Budweiser bubble!’ ” We all explode into roaring laughter. Af ter we catch our breath again, Susan comments, “He lost weight after that! Never gained an ounce back!” *** And then after we closed the three stores what did you do? Became a jeweler consultant for first the … Gordon Brothers in Boston, and seven years… Six years, seven years, I was… Six years… And I be…

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96 hmm… Boston… Was quitting jewelry business and then I affiliated with KWHS consultant. KWHS incorporated, then… Eight years, seven to eight years… And hmm, fourteen years anyway, working consultant. Then what happened? Then… I have… with the stroke, thirtythree months ago. From ABCs to Journaling “Do you remember anything from your stay at the hospital?” I ask Larry “Yes,” he replies. “Asleep… woke up… mouth… didn’t function!” “Hmm hmm…” Susan agrees. “I remember I was on my way to get you. All you could say was ‘I don’t know,’ ‘yes’ and ‘no.’” “Hmm hmm…” Larry recollects, “Gla sses… in… photograph… glasses… I… would… see… photograph… glasses… fork… in therapies… hmm… hmm… tape… re… Recorder… Cup… Relearn everything…” “Everything…” says Susan, picking up the remainder of the se ntence, “We had to start with ABC… the… 1, 2, 3, 4, 5… we ha d to start from the very beginning… how to write it, how to print it…”

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97 “Everything!” continues Larry “Yea h… So anyway… I hmm… progressly… progressly… reading really, of course… but not totally. And hmm… So, I… hmm… hmm … hmm… well… study… grammar… the hmm… phonetically… and… hmm… spelling is… hmm… is… proving, impr oving… so… hmm… so I guess… hmm… spelling wise and hmm… or… communicatio n… hmm… 75% of normal… so… slowly is… Proving…” *** As my first visit draws to an end, we tr ansition to the kitchen table, where Larry shows me his collection of notebooks and fold ers from his two years of speech therapy. I marvel at the neatness of his notes a nd at the volume of his materials. “They made him work!!” Susan exclaims as she carries a number of folders. “Which is good, I mean, that’s what it’s all about! I went with him to therapy every time because they said he did better when I was there! So I stayed with him through every session, three times a week. I browse through the notes and accompany the progression, organized chronologically, from monosylla bic words, to compound words, phrases, sentences, and paragraphs. One green notebook, however, catch es my eye. It was Larry’s journal. As I browse through it, I find this entry, “10/25/02: From the tenth floor to the third fl oor of the Sarsota Memorial Hospital Dr. S’s domain! He would start his r outine with a daily conversation to each of his patients, “What month is it? “What date is it?, and “how do

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98 you feel today?” Every ten days thei r was an evaluation. Then the nurses and the therapists would sit down stare at you. Fortunately, the stroke did not leave me impaired permanently. The weaking of the right side of th e body has responded. Matt, Danae, and Lucy, as well as others, helped me to commit to self improvement. Speaking was a matter of concern, one or two words were all I could say. Joyce, Sophia, and a student from USF, Lori. Speech therapy at least 14 times a week, for 45 minutes each sessi on. In 22 days I could indentify an object with titles, and sentences. How good it was to get home after 28 da ys and sleep in my own bed? A week later, Leslie Smith came in to my life. She started were the 10 foor left off and had me 3 day a week, 45 minutes a day. Leslie had me about six weeks when see requested I have a notebook for a record. April 24, 2002 was the first entr y and last entry was October 25, 2002. Thanks to Leslie, who motivated me toward self-betterment and perfection.” Noticing my interest, Larry explains, “My journal. I would like to… give it to you… read… I… treasure that!!” Honored with his trust, I ask him, “Are you sure? Can I bo rrow it until the next time I come back?” “Sure.” Larry replies. “Hmm… that ’s… eternal… you know? And… hmm… see these… you have… knowledge of therapy…”

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99 “He is so proud of his notebooks, because he’s worked so hard !!” Susan adds. “I promise I will take care of it!” I reply, gently s liding the notebook into my book bag. I thank them greatly and as I gather all my materials, ready to leave, Larry stands up and says, “Wait a minute… wait a minute.” Not sure exactly what he meant, I look at him between confused and worried. Had I taken more materials than I should? “He doesn’t want you to leave in this rain” Susan comments, disentangling the question mark on my face. I try to reassure Larry that I would be fi ne on the road, but his grey hair and firm smile offer me a gentle and protective resist ance. He only allows me to leave their home after the storm was assuaged. I hug them bot h warmly, and wish Larry good luck on his interview. Only then I notice Larry had a large umbrella in hand. Gentlemanly, Larry opens his large golf umbrella and escorts me to my car. Thanking him and Susan once more, I drive back home, dry and safe. *** Fall semester, 2004. Due to fast pace of the semester, I am not able to see Larry and Susan again for several months. Later in November, as things started to calm down, we schedule our second interview. Speaking with Susan on the phone, I notice her voice is tense and concerned. She mentions briefly that Larry had undergone su rgery for cataracts, and I cross my fingers and toes, hoping everything went well.

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100 20/20 Thankful for a bright sunny day, I find La rry’s and Susan’s hous e easily this time. As we greet each other at the door, I notice something different about Larry “See me with glasses before?” He asks, noticing my frown. “Yes! That’s what’s different!” I exclaim. Looking a little closer I notice that the left lens was missing. “Hmm hmm… not missing” Larry clarifies. “He’s had his cataracts removed!” says Susan “Wow! And now you have 20/20 vision on that eye?” I ask. “Hmm hmm!” Larry exclaims with a large smile. “20/20!” Larry and Susan lead me to the living room As we find our seats, Susan explains what had happened, “We’ve been through an awful lot with hi s eyes for the past 30 some weeks… When they removed his cataract they found a film on his eye, under the cataract…” “No… no…” Larry interjects. “A scar…” Susan corrects, “So we had to go to the retinologist…. We had to wait 11 weeks, and go every week, and have his eye tested, and his vision came back, and then… we had to go to the retinologist because… hmm… he had a stroke in his eye, but we didn’t know that… so when he ha d his initial stroke… is when they think he may have had the stroke in his eye, but they c ouldn’t tell because of th e cataract. So the eye can go either way with the vision, but his vi sion, the doctor this morning was really encouraging, his vision is just doing great, so…” “20/20!!” Larry exclaims happily.

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101 “Hmm hmm!!!” Susan sighs, relieved. “This is one of the first times he’s ever worn glasses in 35 years!” she exclaims. “By the way, did we ever mention how Larry got fitted with his contacts?” “No…” I answer. “Oh, let me tell her that one, honey! It needs to go in her paper!” *** Ok, this is his eye doctor from West Virginia, who flew down here to fit him with contacts… it’s a long story, but… he came down here to help Larry with his contacts after the stroke. That was emotional… and one of the doctors in Bradenton that the ophthalmologist told us to go to, let us use hi s office… We used the office for four hours to work on his contact lenses! He’s always worn a hard lens, bifocal, with the bifocal correction lens there, and nobody in Sarasot a will touch it. So his doctor up North came down here and said, we’re gonna do this! And they did it! I mean… That’s how blessed we’ve been… with people and with friends The ophthalmologist couldn’t believe the doctor from the North came down here to fix him with contacts, in an office in Bradenton!! Blessings and the Telephone “We have heard so many heartbreaking stor ies about disrupted friendships after a stroke, especially during our aphasia group meetings...” Susan comments. “Most friends leave because they don’t know how to handle the situation. That has not happened to us…” I notice Larry’s eyes, surrounding Susan in a warm and loving gaze.

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102 “Why do you think that is?” I ask Susan “You know… I’m not sure… Maybe it’s becau se Larry is older, and his friends knew how to handle it because they’ve seen more of life. I don’t know… But since his stroke, in the 30 months, we’ve not missed a party, we’ve not missed a dinner, we’ve not missed any function. Our friends who are here and our friends who are away, far away, have remained very supportiv e. They call and check on him, and so many have come to see us! We, Larry and I have really been bl essed with that aspect of it. We have constantly had this support system around us, young and old… So that’s been very healthy, wouldn’t you say? “Yes,” says Larry “See,” Susan continues, “In the very begi nning he had twenty-eight men who left something on an answering machine asking, ‘W hat could they do?’ So our daughters and I organized the names, and instead of sa ying ‘Well, you can’t do anything…’ we had each of them call Larry! We had it set up so that everybody called him at different times, for about 30 seconds because he really could not speak. They called him in the hospital to tell a joke… They’d say ‘You’re OK, we’re thinking about you,’ and hang up. They programmed by when to call. So it made them feel like they were doing something to help him, even though he couldn’t, he c ould hear them but he couldn’t respond to them…” Larry exclaims, visibly moved, “See… I, I, I … don’t… appreciative of the fact… I didn’t know what you do!” “I know you didn’t know…” Susan acknowledges and reaches for Larry’s hand. “But see, I told Leslie, our speech therapist, to tell other people that, because… the phone

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103 kept ringing! There were so many, so many pe ople called in the night, they told him a joke, and the neighbors brought him a Playboy magazine…” Larry explodes in roaring laughter, and Susan and I join in. “So, you know…” Susan continues, “That kept him on the phone from the beginning, so that the phone was not an inti midation as we moved on in time. One friend in South Carolina called every night, a nd one friend in Denver called every morning… “Bill is our best man” Larry adds. “He’s the friend from South Carolina” says Susan “And then, suddenly, mother’s day, he’s had a stroke. So… now… our turn to play… We call him.” Larry completes. “Yes, every other night now we call him ” nods Susan “Does he have aphasia as well?” I ask. “Hm hmm…” replies Susan, “He has Wernicke’s aphasia.” “But hmm… he… he is… constant babble!” smiles Larry *** That’s a blessing… it’s ju st a blessing… one of the nurses for the ophthalmologist said, hmm, “He has an angel on his should er. He’s got angels all around him!” So, we’ve got a lot of blessings, and a lot of frie nds that have helped us get through this. Without the friends, I do n’t know what we’d do… I really don’t… A lot of things have happened that have been wonderful through the process of this nightmare… and it is sort of a nightmare, it’s a blur, when you’re going through it, you know? I look at the calendar and it is sort of a blur, of… doctor’s appointments, and, and… going here and doing this, but it is OK, we’ve gotten through it…

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104 *** Several months later, while reading Boazm an’s account of her life inside aphasia (Boazman, 1999), I cannot help but admire Susa n’s insight into the turmoil experienced by most individuals with aphasia when confr onted with the task of using the telephone. As Boazrman describes it, “Before I pick up the recei ver, I try to anticipate the conversation. Then I write it all down, making contingency plans in case the conversation does not run according to my expectations The tone of voice of the person on the other end of the telephone affects my response as well. If the person replies in a friendly and relaxed manner, then I feel relaxed as well. In turn my speech is more fluent. If, on the other hand, the response is offhand and brusque, this affects my speech adversely. I begin to have wordfinding difficulties and my mind goes blank. The more irritated the peson on the other end of the telephone become s, the more I begin to fantasize about how he or she perceives me.” (p. 16) As I reminisce about my own experience as a foreigner and speaker of English as a second language, I empathize deeply with Boazman’s story. To this day, whenever confronted with the task of placing an important phone call (especially to strangers), I still go through the nerve-wrecking task of planning and anticipating questions and answers in an attempt to calm my ow n fears of failure to communicate. Golfing and the Four Musketeers 7-06-02, Saturday

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105 The battle of golf at Village Green. I met Curt at the Village Green Golf Course at 3:45 pm on July 5. The one armed swinger against the ^two handed slinger .Two hours later the contest was over, much to the satisfact ion of both golfers. I know the help I was giving Curt was unprofessional, but he eagerly learned. I enjoyed being able to swing the club at a target. Curt did not keep score, but in my head I kept my score. Curt and I have scheduled golf next week. We had fun! Larry’s journal entry “We have made new friends, too, after the stroke,” says Susan “Yeah! Tom, Curt, Bob, and Larry The Fo ur Musketeers!” Larry agrees and laughs. “Is is wonderful because… we have… so much in common!” “Yeah, that’s true!” Susan replies, “T hey check each other ou t all the time!! ‘My leg, my arm’…” Larry laughs in amusement and continues, “Well… hmm… competition is fine… The physical and…golf… See, I have hmm… I have… limitations… and I… so… anyway… happy… when Curt could meet me…” “Yeah, they scored the same on the last golf match…” “Is… is… fun!” Larry “You were one of the Musketeers that star ted teaching golf to the others, weren’t you?” I ask Larry

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106 “Yeah!” Larry replies. “He has always loved to golf” Susan adds. “I was a golfer at fifteen years old…” Larry reminisces. “I… I was privileged to become the… friends… My friend, eleven m onths younger than I… His father to me, hmm hmm hmm father image… My friend… I… well… I guess he was behind me in school, but the hmm… the hmm… so, I was al ways buddying up with him, and then his father… father image became Mr. Garrison. So I hmm…the… After stroke, small course yes. No more large course. Doctor’s orders.” Progress, Limitations, and a Little Grammar Mulling over the comment about the transiti on from the large to the smaller golf courses, I ask, “Larry, with the compromises you have had to make after the stroke, do you feel you continue to have personal freedom?” Larry pauses for a moment, as if orga nizing his thoughts, and then replies, “Well, sure, hmm… I… have… 90% hmm right hand… 80% right hand… See…” he says, gesturing with his right ha nd, “The function is 90% And… I… dragging the feet the right side… So… freedom, ye s, because Tom and Bob, and Curt, is… paralyzed.” “Are paralyzed…” Susan intervenes. “Are paralyzed… thank you…” Larry says, with an amused grin, “She’s the educator…”

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107 “Well, Leslie said if you don’t learn it ri ght the first time he’ll say it wrong the second time…” Susan justifies it. “She is constantly reminding me… She is gramma… grammatically correct!” Larry jokes and smiles. “Well, I’m supposed to constantly remi nd you” Susan explains. “Leslie told me that, a long time ago. See,” she says, turn ing to me “When Leslie gave him speech therapy at the hospital I sat in every session… She tried… not having me be there, but it didn’t work as well, because he wanted me to know what to do, so… I sat in on every session that he had for the seven months, and now I’m really glad that I did, because I learned… Leslie would say, ‘Now Susan remember this, remember that…,’ so it helped me a lot to in trying to teach him! Poor Leslie, put up with us for seven months!” I smile, feeling mixed feelings about the therapist’s advice. I reminisce back to the years when I used to teach English as a second language in my home country. One day in particular stands out in my memor y. Noticing the unsatisfied look in one of my students’ face, I approached him and asked for his honest opinion about the course. The response was straightforward: “I don’t li ke it. I don’t know what I am doing wrong and what I am doing right.” From that day on, I started giving him pr ompt and constant feedback on the grammaticality of his mist akes. He was very content after that. Why do I feel so different about aphasia therapy, however? Coul d it be because I am a foreign clinician? Or could it be be cause I am usually younger than most of my clients? What right do I have to correct their gr ammar? Maybe a lot of it depends on how therapy is seen: what is the conceptual framework that underlies it? How much, in aphasia therapy, is restitution to an old self, to things as they were, and how much of it is

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108 compensation, transition, learning new and idio syncratic ways of doing the same things differently? Should one strategy be valued as more or as a better standard than the other? “Anyway” continues Larry and my attenti on drifts back to our conversation, “I feel fortunate that I… overcame… 50%… 20 months ago I… have… no right… left hand… so… oh… it’s funny” he smirks, “But… 2 months no… 2 months from… stroke… I was able to right hand… asshole!” he says, indica ting how he cleaned himself in the restroom. “Yes!! Tw o months ago, is… left hand only… is awful!!” The living room is filled with laughter. Larry continues, “So… I guess therapy… occupational therapy… two months of the… occupational therapy… was able to… hmm… fulfill hmm… three months… anyway… Strengthening myself… so I feel fortunate … It’s hmm… where I am… so… I’m proud of that…” *** Yeah… We have personal freedom, except… right now we cannot travel, and that’s been really hard bec ause his Coumadin count is co nstantly… off kilter… and… hmm… His blood, his blood… He’s on Coumadin, blood thinner, and it’s constantly off… anything that he eats that is green… becaus e of the vitamin K… for some reason… his… his Coumadin is always off track, so we don’ t, we can’t go anywher e… we have to stay very close to home base, because we go prac tically every week, you know, for a blood check… Well, now it’s two weeks… but… so that would be our biggest restriction… Not being able to travel… because we, we’re marketing consultants and we traveled everywhere! So that’s… I would say that’s one of the major things, but I’m so thankful we live in Sarasota where it’s lovely… And people come here, so it’s re ally not that bad! So

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109 we feel very blessed that we live in such a beautiful place, and… the… hmm… we’ve had so much company… hmm… but that’s been wo nderful, that’s been a very positive thing. Miracle Cure? With questions about restitution and adaptation rolling in my mind, I ask, “Larry, what frustrates you the most at this point? Is it when the words don’t come as quickly?” “Yes!” he replies. “and Aricept… is hmm… rewarding because I… anyway… is rewarding half way… but it is hmm… I guess hm… it’s… mentally alert, but… still searching words… searching words…” “So you feel that the Aricept is really helping you in some aspects?” I inquire. “Hmm…” Larry answers, “Dr. Huds on, hmm hmm… Dr. Hudson is… USF… Dr. Hudson, neurologist… says the nerv e endings will be… able to… hmm… regenerate… So… sometimes… it’s perfect… and sometimes… isn’t perfect… But, anyway… I… Dr. Petrovsky hmm… and Dr. Hudson… is… life savers!” “Now you’re on Sinamet also…” Susan adds. “Yes, Sinamet… three times a day… is going… good because… is… Aricept and Sinamet… I… so… slowly… yeah… but hmm… I have… much recall…” “Sinamet is a medication used for Pa rkinson’s…” Susan explains, “And hmm… it’s really helping him! He thought 30% improvement… th e doctor thought, 30% since he’s been on it! And he’s been on it sin ce you were here… I mean… I think we started that since hmm… you were here the last time…”

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110 “Yes…” Larry agrees, “but the… dopami ne… effect dopamine effect is… sin… is assimilating dopamine…” “He feels like it is healing the brain…” Susan says. “Yes! Dr. Hudson…” Larry confirms. “He’s unbelievable…” Susan continues, “And all the nurses have told us he’s the most dedicated doctor that… they’ve ever worked with… so… I…. you know, I praise these doctors because…” “Hmm… Curt… Tom… and hmm… Is on…” “The other Musketeers?” I ask. “Yes!” Larry nods. “Curt and Tom on… anyway… hmm… something I was allergic to…” “Oh, they’re on bromokryptine…” Susan clarifies. “Bromokryptine!” Larry confirms. “Larry was violently allergic to brom okryptine…” Susan explains, “So, see, we had to wait a long time before he st arted… But the other men are all on bromokryptine…Curt is on seven a day, I think…” “No, five a day…” corrects Larry “Five a day?” “Five milligrams…” Larry confirms. “Curt thinks it’s a miracle!” Susan me ntions. “He told Dr. Hudson he improved 85%... Dr. Hudson said, I don’t thi nk it works that way, Curt!”

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111 Who Am I? I… think… myself… is… human beings, and… Rotary, I… belong to Rotary… And I… hmm… guess I feel… embarrassed… because… shameful, no… so, embarrassed because I… readily cannot talk… but… hmm… but… is … good because… I was… was supposed to… every… lifestyle… and so I… I changed… but I embarrassed because I didn’t… words slow… Yes…. But see the hmm… but hmm… dysarthria… Is slow… and so… I… pronounce slow… slowly… Twentynine months ago, I speechless… and I… I… I… guess I would… will able to become useful and hmm… fulfilling, and… earn waging again, so… I definitely have a purpose in life, but whatever it is, is going to be good! The doctors say to me, always say, always ask me, well, how has Larry changed since the stroke, and since… but he really hasn’t changed… there is nothing about him… and I’m so thankful for that because… he’s not changed since the stroke, and… this is not what I hear in the aphasia group from the other women… or men… or whomever, you know, is in the co-survivor group… hmm… I don’t hear that at all… I hear other things… but… every doctor wants to know, first question, how have you changed since you’ve had the stroke? And… there is really no… no change!!

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112 The Twinkle In The Eye Of The Jeweler Larry excuses himself for a restroom break, and Susan and I continue talking in the living room. Celebrating his achievements, Susan confides, “I’m really proud of him! I think he has just… He has fought this, every day, just like Curt, just like all of them! But he has re ally… He has talked to the industry. That is very difficult. He’s had to order things for people, not simple thi ngs. It’s one thing to order a diamond for a customer, but it’s another thing for a customer to say, ‘I want this complicated piece…’ and… he’s had to go fr om point A to point B and it’s taken… Sometimes two, three days, but we’ve done it, you know? I’m really pr oud of what he’s sold, of what he’s done. Larry is very respec ted in the industry, and these men take time out of a business day to call him, to make sure he’s OK. That has been extremely emotional. I’m so proud of him! Someone called him yesterday, they lost their diamond, and they want to make sure that what they get to replace it is what they had, you know… I mean, and that’s it… go the a ppraisals, get the work… it’s been a challenge, but it’s been wonderful !! You know? Because… He’s… back in his world. He’s the happiest back in his world of the jewelry, that’s when he’s the happiest! As Larry returns, Susan asks him, “There’s a story that I want you to tell her, that she doesn’t know…” “All right! Sure…” he replies. “I want you to tell her the story of Melissa and Daniel and the earrings, and what you had to do…” Susan explains. Taking his seat back again, Larry tells us the story,

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113 “Four months ago…. Well… a year ago… I had knowledge of somebody who was going to buy a… hmm… an earring, two pi erced ears, from a friend of mine, so… and hmm… he unsuccessful approach that he had with a… fellow jeweler. So said, ‘You have knowledge of… hmm… diamonds…’ I said ‘Yes’… so… two months later I forgot about it… Then later, friend said, ‘I… was su rprised when wife saw the advertising, and we went and we bought… we bought a mistake…’ “They couldn’t return them because it was on sale and they signed a contract. Remember?” Susan interjects. “Hmm hmm…” Larry continues, “So… You have… jewelry has to have a pleasant look… so I said… 800 hundred dollars 900 dollars is what… I would… cost… cost… hmm… is… all right… but I said, double, double, hmm… hmm… 900 dollars, the gemologist appraising, apprai sing, were 1800 dollars. So, no way! But I guess they had already been… two times the refusal… and so I said… I will… I was representative of the American Gem Society. So, all four of us appeared, and I said ‘I don’t think that carat 38 is right. I guess hm m… falsely represented fo r caract 38.’ So the hmm… manager hmm… parted the prongs and weighed, carat 32.” “It was a fraud!” Susan says, “So people got their money back.” “But I guess, I guess I had… assumed th e carat 25, but… OK, 32.” Larry laughs. “Yeah!” smiles Susan “Well, but the amazing pa rt was, they were here for a long time and he didn’t write anything down, and I said, ‘Why aren’t you writing anything down?’ See, because the earrings belonged to the people, Larry couldn’t take the diamonds out of the mounting to weigh them, so he guessed, with all his knowledge, he

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114 estimated the carat of the diam ond! The interesting part was, when we left home to go up there, hmm… he packed all his diplomas…” “One…” Larry corrects. “Well, one… two… you had two, in your briefcase…” “Yeah…” confirms Larry “In case he couldn’t speak. I didn’t understa nd it at first and asked ‘Why are you packing your briefcase?’, but… he was smar ter than I was!!” We all laugh. “So… they got their money back! They were thrilled to death!” “Wow!!” I reply, surprised. “How did you know that it was a fraud?” “It’s a strength he’s got” Susan replies. “No, no…” Larry gestures, humbly. “Meas urements… Micrometer: I show you.” Getting up from his chair, Larry invites me to see his den. Smiling, Susan says “He’s taking you to his world!” I enter the mid-sized room with great respect. Larry shows me his scales and micrometer, and I admire the precision and delicacy of the instruments. As I turn around, I see a beautiful pictur e of a ballroom dance on one of the walls. “What a gorgeous picture!” I exclaim. “Who are they, Larry?” Laughing, he replies, “My daughter and myself.” “No! Seriously?” “Hmm hmm!” he nods, confirming. Surprised, I come closer to the photogr aph and look at the details. Suddenly, I realize the similarities in the profile, the smile... That was Larry all right!

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115 As he laughs, my mind wanders back to th e last day of group in the clinic. “So that was the twinkle in the jeweler’s eye” I th ink to myself. I recognize in the picture the eye of the jeweler who has had so many strong and supportive women throughout his life (his mother, his sister, his first wife Liz, his daughters, and most definitely Susan) and has learned to read them, as a man and as a ski llful jeweler, just like the palm of his hand. Coming full circle, I tu rn to Larry and say, “Thanks for everything, Larry!” Giving me a big hug, he replies, “Sure! Anytime.”

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116 Chapter 6. While My Guitar Gently Weeps Hello Goodbye Group therapy session at USF, spring of 2003. Standing at one end of the narrow and crow ded computer room on the fourth floor of the Communication Disorders building, a student clinician f licks the light switch twice in an attempt to gather the attention of the chatty and liv ely members of the aphasia group for the next activity. As thei r voices gradually fade into a faint and bubbly murmur, she explains, “Last session we agreed on what foods to bring to our picnic at Lettuce Lake Park. Today we are here in the computer la b to look up some recipes for the folks who could not decide what they wa nted to bring. So pair up, find a computer station, and let’s look up some recipes! We’ll vote on the be st ones at the end of the session.” As the room gets busy and the student cl inicians start circ ulating to provide individual assistance, Miz Paul, the clinical s upervisor, notices that one of the clients had not yet found a partner. Appro aching me as I take my notes in one of the corners, she suggests, “Hey, Linie, why don’t you buddy up with Bob over there? He may need a hand.” “Sure!” I say as I put my pen and paper down. “Will do!” *** “Hi there!” Bob says cheerfully.

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117 “Hi!” I reply. “Is this seat here taken?” “No, not at all!” he says courteously. As we introduce ourselves and exchange our first hellos, my accent dances a discrete samba through my vowels. L ooking at me inquisitively, Bob asks, “Where you from?” “Brazil.” I say smiling, as my heritage shows. “How about you? Are you a Floridian?” “No,” he laughs. “I from Sashashusetz.” Unable to understand him at first, I get a bit closer and ask again, “What was that?” “Sa-sha-shu-setz,” Bob repeats polite ly, giving me one syllable at a time. Feeling slightly embarrasse d for my untrained ears, Bob and I play twenty questions as we narrow down the multitude of possible answers. “Is it in the USA?” I ask. “Yes, yes!” “South?” “No, North,” Bob corrects me. “East coast?” “Hmm hmm…” Thinking about the number of syllables and the geographical location I put two and two together and ask, “Is it Massachusetts?” “Yes!!” he replies. “Sashashusetz!” As we both laugh, Bob turns to me and says,

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118 “Ok now! What…da… what recipe?” “Oh, I don’t know,” I answer “Are you a good cook?” “Yes!! Oh yes,” he responds proudly. “Spaghetti, my specialty!” “Really?” I comment, amused. “Oh yes, yes! Really good spaghetti!” he reassures me. “All right,” I respond. “So how about we find a good pasta recipe for the cookout?” “Ok!” he agrees, and we both start se arching for cooking and gourmet websites. After a few mouse clicks, we find a good spaghetti recipe, but unfortunately it doesn’t win the first place in our group pol e. “Oh well” we both say, “It seems like a good recipe anyway!” At the end of the sessi on, we part our ways in hallway, saying our first goodbyes. *** PCD 3017. Gently opening the door to Dr. Hi nckley’s research lab, I hear an enthusiastic “Eureka” coming from the inside. “ Yes That’s it That’s what I was looking for!” Stretching my neck down the short corridor leading into the room, I see Lori, Dr. Hinckley’s Ph.D. student and clinical fellow, wo rking at the computer. Lori is at least two years ahead of me in the program. I have looke d up to her from the very start, with a mixture of admiration and a hint of competitiv eness, hoping some day to be half as good and knowledgeable as she is. Turning around as she hears my footsteps, she says, “Oh hi Erline, I didn’ t notice you coming in!”

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119 “Hi Lori” I say as I lay my backpack on one of the tables. “What did you find there?” “Oh,” she says, looking back at the scree n, “I found this really cool website for phonetic placements that I think may really help one of my clients. Take a look!” As I come closer, I see a large sketch outlining the cross-section of a head on the left side of the screen and a list of all the phonemes in the English language, organized neatly in categories on the right side. As Lo ri clicks on each of the listed phonemes, the tongue, lips, and jaw in the sketch move to the appropriate articula tory position in the mouth, giving me the funny impression that the computer screen itself is talking through the loudspeakers. “Isn’t this something?” She shows me. “I wa nt to try this with Bob, see if it works for him.” “You’re working with Bob?” I ask her. “Yeah!” she says, surprised. “Do you know him? “I just met him the other day when I wa s observing group!” I tell her. “How’s he doing in therapy?” “Well…” Lori says, “The problem with Bob is that he hasn’t been practicing the things I give him consistently… So… We’ ll see… Hopefully this will help him.” *** As time passes, these snippets of convers ation slip into th e back of my mind, where they remain dormant and undisturbed fo r at least one year. Meanwhile, I see very little of Bob in the ensuing w eeks and months, as he stops pa rticipating in group activities

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120 to take part in a research study conducted by one of the facu lty members. It would not be until much later, in the summer of 2 004, that I would meet Bob once again. All Together Now Opening reception of the Speaking Out! convention, 2004. Walking through professors, presenters, and an inspiring multit ude of stroke survivors, I spot a group of familiar faces from the USF aphasia group and make my way towards them. As I come closer, I see Bob, helping himsel f to a glass of lemonade, clos e to the bright yellow and green balloons from USF. Tapping him on the shoulder, I say, “Hey, Bob! So how was that spaghetti?” Laughing, he replies, “Oh, delicious!!” “How have you been?” I ask him. “Oh, good, good!” he replies, “And you?” “Good as well! Have you decided what sess ions you would like to attend here at the convention?” “Not yet…” he answers. “But I see Larry, Curt, and Tom, of course!” “I know! I will be there al so.” I tell him. “Have a good time at the conference! “You too!” he says, as we part our ways. *** At the time, the fact that Bob decided not to deliver a speech at the convention did not call my attention. “He’s probably more reserved and introvert ed than the other Musketeers,” I think to myse lf, “and that’s why he opted for making the introductions instead of a speech.”

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121 Figure 9. Bob at the Speaking Out! convention, 2004. Sitting at the end of the very first row, I watch the presentations mostly through the lens of a video camera, as I try to captu re every word and every gesture from all the participants in film. The audience is repl ete with family, friends, and other fellow survivors and caregiver s who laugh, cheer, and become emot ional with the presenters as each speech is delivered. As I move the camera lens from the presenters to the audience, I see the pride and enthusiasm blossom in Bob’s face, as he celebrates the great achievement of his fellow Musketee rs in this formal meeting. The end of the session is crowned with a large wave of applause and a warm gathering of families and friends to congrat ulate the presenters. I join them, hug them, and gently slide outside the room, as I try to split myself in two in order to attend other sessions. *** One month later, IRB approval in hand, I dial Bob’s number, without knowing exactly what to expect. From the Four Mu sketeers, Bob was the one I knew the least. “Would he would be interested in participati ng in the project?” I th ink to myself. “How

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122 should I word my invitation?” After a few dial tones, I hear Bob’s voice on the other end of the line. “Hello?” “Hi, Bob?” I reply, snapping back into reality. “Yes?” he confirms. “Hi! This is Linie, from USF, one of the clinicians. Remember me? We saw each other at Speaking Out! not too long ago.” “Oh, yes! Da… I remember! How are you?” he says, after a brief silence. “Pretty good! And yourself?” “Not bad!” he replies. “Bob, I am beginning to work on my thes is project now and I was wondering if you and Diane would be interested in participating.” “Oh yes?” Bob exclaims, between hesitant and curious. “Yes,” I confirm as I briefly explain th e purpose of the project. “So, what do you say?” “All right!” Bob replies. “When da meet?” Tell Me What You See One week later, I find Bob and Diane’ s home in a quiet neighborhood in Venice, surrounded by golf courses, palm trees, and neatly trimmed lawns. Getting my gadgets out of the car, I slowly make my way towa rds their house and hear the soft “ding-dong” of their doorbell, punctuated by the fi rm barking of the family pet. “Hi Bob,” I greet him as he opens the door, “Thank you for seeing me today.”

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123 “Oh, no sweat!” he replies with a smile, “C’mon in!” As I enter, I notice the beautiful Collie standing tall by Bob’s side, looking at me suspiciously as if trying to decide how to react. “What a beautiful dog!” I comment. “Can I pet him?” Bob chuckles and says, “Try… but… he… skittish…!” As I stretch my hand towards its nicely co mbed fur, the Collie looks away politely and starts walking around in rhythmic circ les, as if circumscribing his own personal space. With a knowing smiling, Bob says, “Diane inside, da… I go get her,” and directs me to a quiet sitting area. Diane, Bob’s wife, is a tall and char ming lady, with wavy blond hair and long delicate hands. I first had the chance to meet her at Speaking Out!, as we frequently ran into each other in be tween presentations. “Hello!” she says as she enters th e room. “I hope you had a nice drive!” “Oh yes,” I comment. “No bad traffic, amazingly!” I find myself a seat in the cozy couch by the wall, as Diane and Bob sit opposite me in their armchairs. After working out the details of the informed consent, Diane says, “The only limitation I have as far as meeti ng is in two weeks I go back to work.” “Diane teacher,” Bob explains. “Oh, no problem,” I assure them, “I can work around your schedule!” “All right!” Diane agrees. “What do you teach?” I ask her, not knowing she worked with education.

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124 “Seventh and eighth grade.” “Really?” I reply, surprise d. “How do you like it?” “Oh,” she sighs, “I’m getting on the down si de of that…” Her tone was between tired and humorous. “You know, the kids aren ’t getting any easier! Are we ready to start?” she asks, noticing the questionnaire with the “Psychosocial Wellbeing Index” (Lyon et al, 1997) in my hands. “Sure,” I reply and we move on. *** Do you feel you have a purpose, a direction in life? I think so, yeah. [Deep sigh and si lence.] Well, first… thing… hmm… One at a time. This day, and next day, and next day… hmm… [sigh] but… Good, better, better, better, better!! And hmm… the arm, t oo… [says somewhat sad and disappointed] Not good… the leg, yes! But arm, no… And I… really miss… guitar… Silence… Do you feel you have personal freedom, to do what you want to do? Oh yes, yes… Yes! Because the car, go with anywhere! … Silence… Do you feel that you start activities on your own? I think so! Yeah! Yes! …Silence… How busy do you stay during the day? Hmm…. Well…. Sometimes yes, and sometimes no. Da… depends, you know? …Silence…

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125 How do you currently think of yourself, how do you see yourself? [Silence – sigh – deep sigh] Ye ah, right [laughs] Better, but… not, you know… not… really… guitar, no… [Silence] The arm is da… the mind… you know? And guitar, of course… and hmm… oh… what else? …Silence… Is there something you miss deeply from before? Oh… [sigh]… Work!! The… engineer… Bioenvironment… Bioenvironment… …Silence… I think so… [thinking – long silence] I don’t know… I think … the whole thing… better today. Yeah, really! The… because… the… more out. Y ou know? I hmm… I … hmm… I speak [thinking] I don’t know… but changed, oh yes… yes!! Right? [Bob concludes, turning to Diane] …Silence… *** Looking at Bob and then at me, s lightly puzzled, Diane replies, “I’m taking he’s supposed to be answering…” “Oh, no,” I answer, relieved to find an e xplanation to her s ilence and an outlet from the mechanical format I had unfortunate ly transformed the interview into. “I was amazed you were so quiet!” I comment. “I was purposely not answering…” she explains. “Oh, no, please! You can participate at any time!” I remark. “Even if I have a different view?” “Absolutely,” I confirm.

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126 “Because I have some very different views than he does!” “Oh really?” says Bob, and initially I ca nnot pinpoint if his voice was ironic or indeed surprised. “Yes… I do,” Diane continues. “So, let’s s ee… what was that last one you asked? *** I would say… Bob…he’s much more… empathetic and compassionate towards anybody who has any kind of disability. Be fore, when Bob was in the work world, working 18 to 20 hours a day, he just didn’t have time… he was so busy… it is not that he didn’t care: he was just too busy… But now he’s extremely compassionate towards anybody, and goes out of his way to help anybody… I think he knew what he wanted to say when he said “better now…” But I thin k you couldn’t put it in to words [looking at Bob] So… I would agree w ith you on that question… [Bob nods gently]. I don’t know that I would agree with some of the other ones before, though… When you were talking about your purpos e… I don’t think you have a real clear purpose… Bob is not a goal-setter now, and… it drives me crazy… Because I don’t ever know where he’s going, or what he wants to accomplish, and I… I think that it comes from a fear of failure… so he won’t set a goal, and say what he wants to do, so I don’t think that he has a clear pur pose, and I don’t think that he has enough to do during the day… He isn’t busy enough… he isn’t busy I don’t think that he’s busy enough at all… He wasn’t like that before… Oh no [Not AT ALL! Oh no!] He was busy every… Every single minute… [Every single day]

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127 That’s why there’s been such a… the harde st thing for me is that… he’s such a different person… A very different person… Just the idea that he… he… always had something in front of him that he was… trying to achieve, or do, whether it be at work, or whether it would be at home. Always had th ings going on, you know? At home, whether they were projects around the house, or doi ng things here, and… he doesn’t now. And I always ask him, “What is it you would like to do?” because there isn’ t anything really he can’t do now, that he could… that he did before, I mean, when he puts his mind to it, he can do it. It’s not like he can’t do thing s… including… hobbies and all… But he…It’s like he doesn’t have… The motivation, I guess… He feels frustrated… [Oh, God, yes…] VERY frustrated, all the time… So… I would disagree with that purpose thing. I don’t think he has enough to do, I do n’t think he has a clear purpose… No Reply “You talk about the stroke as a major divisor of waters,” I comment, looking at Diane. “What do you both remember from immediately before and after you had your stroke, Bob?” Looking at each other, trying to decide who would speak first, Bob begins. *** In society’s view of disease, when th e body goes out of control, the patient is treated as if he has lost control. Be ing sick thus carries more than a hint of moral failure; I felt that in being ill I was be ing vaguely irresponsible. Of course, the problem is not that I or any other ill person has ‘lost’

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128 control; the problem is that societ y’s ideal of controlling the body is wrong in the first place.” Arthur W. Frank One day… the… the stroke. Vice president and then slump… [makes a “down hill” gesture with his arm]. The night… the morning, really And the bed… I sit… [silence] the bed… sit… And then… stand. And then… [silence] Fall… the floor… And then… nothing. Nothing… One week, nothing… Wake up, frustration [Laughs…] A LOT. Angry… The whole thing, really bad…

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129 [What were you angry at?] Me… [You? Why? Of all people?] Well, yeah… me… [Did you blame yourself?] I think so… yeah… Not you! ME!! I mean… Because me the stroke has hurt… Me… My brain, not you!! ME! [But you don’t have co ntrol over that!] Well… You know… This morning… The stroke… Night before… I wonder… Not stroke because I don’t know what stroke means… but Some…Thing wrong… The plane the afternoon… And then… stop… the restaurant… Then… going home… and sleep. The next day, the stroke. I don’t know… Stress, you know, the stress…

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130 Always there… So what? I don’t know… I don’t know… I don’t know… But something wrong… I don’t know what… I don’t know… Stroke? No way! I mean… no… not cross my mind Not at all! Not at all! *** When he came in the hospital, the neurologist was, he was hmm… very proud of himself, actually, because he said, “Oh, I just knew when I took a look at him, t hat this was a really bad stroke, I’ve just seen a thousand of them, and I just knew by looking at him that this was…” You know? He was really patti ng himself on the back… [Diane comments, indignant] My brother was there, and what we had done was, our older daughter, Jennifer and her husband, who were living in South Carolina at the time, started up to Philadelphia for Kathlyn’s I don’t know… One week… Blank…

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131 (our younger daughter’s) graduation, so they were in route, and… What we had decided to do… wa s… have Jennifer stay up there for Kathlyn’s graduation, so she’d have somebody there, and my brother flew down to be with me here… in Atlanta… and actually, Bob, you were on the phone with Kathlyn, you were talking then… Because you made that decision… you said, “N o Kathlyn, you stay there, I’m fine…” And… my brother was there when the neurologist came in, and my brother just… Couldn’t believe… be cause he just was… so patting himself on the back and went through this solemn speech about how bad it was, and… that in 30% of the times people don’t… when their brain swells like this they don’t surv ive… rather saying than in 70% of the times people don’t have any problems!! Uhhh!!! [Laughs!] Yeah… And I… I’m sorry because he was fr om Emory, and… the rest of the time we were in Atlanta, we managed after we got out of the original medical center, and we… hooked up with Emory rehab and all, our experience with Emory was just wonde rful, and he was not an asset to Emory at all, this neurologist! At all!! He just was… I don’t know… What everybody said was, was, you know… Right!!! And actually when one of my kids was there, once they got there, they said something… to… you know, th e way they explaine d to them too, what they said… and… it… you know influenced how they explained to Right!!

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132 them, and Jennifer said, w hat about, what is that now what would they have said… I don’t know, they just… t hat whole group of neurologists, just were… ugh!! [laughs] Just really awful!! Yes! [Laughs!] *** Saddened as I listen to Diane’s turmoil as a caregiver during Bob’s first days at the hospital, I think back to my externship e xperiences in hospitals and the different ways of relating that I had observed in patient-phys ician interactions. Some doctors seemed to have a greater sense of empathy than others and were able to approach patients and families successfully, having immediate (or at le ast gradual) access to their trust. Others, however, seemed very uncomfortable in a counseling position, and wrapped themselves around the disturbed anatomy and physiology of their patients, as if attempting to make the unpredictable realm of emo tions dissolve peacefully in to a world of science and logical predictions. Facing Bob and Diane, I wonder about thei r long life together and how their life stories had evolved from when they first met until that fateful morning in Atlanta. And I Love Her “How we met?” Diane asks. “Oh… Gosh!!” Bob exclaims. “Well… the… summer… Cape Cod… Diane waitress…” “… in a resort,” Diane comments. “… and me, the band. -tar.” Bob continues.

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133 “Gui-tar. Two syllables,” Diane says, sounding the word out. “Gui-tar!” Bob obliges. “Band, well, colle ge…Band is all college students! So… I play guitar, and the… different things… the trumpet, the drums… a little bit of everything. We play rock and roll! Rea lly good, you know? Nice… money, too! Really good! And… the… Diane and I… m eet hmm… in the hotel.” “Well, it was the summer,” Diane clarifies, “and we were in college, so we went back to college, but…” “Me Boston, and Diane… from Ohio. We meet middle! I go to Tuf… Tufs…” “Tuf ts ,” Diane assists, exa ggerating the final “ts.” “Yes…” Bob nods, “and you…the… hmm…” “I went to Florida Southern College, down here.” “Yeah,” Bob nods and continues, “T hen dating and… college… and then military.” “The military?” I ask surprised. “Yes, oh yes!” Bob says with pride. “I Air Force.” “Really? I didn’t know that.” I comment, eyes wi de open. “Were you ever in combat?” “Of course…” Bob answers. “I was in Nam…” Helter Skelter I twenty-one... No sweat... I mean... Really good... you know… under circumstances...

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134 But... the people, good! Really nice! Always playing, guitar! Oh, God, yes!! Really, the whole thing... Beautiful people! Beautiful… the hmm… trees, and… t he air… the sea… the sea good! God, beautiful! And water, and sand… oh, God!! But war, and war… you know? Decimated… God… You know? I Air Force… the hmm… the base, the big base… Me, the hmm… en… engineer… Not… the… sho… shooting… But hmm… still, you know? War, the war! Me, hospital, all around base Go into shops, inspect The air, the light, the pollution, and safety Safety things

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135 So not so bad... But not good... War, you know? Scared, of course… And the bombs… I see it! Because… right there! I mean, right THERE! One time, the… bomb spell Into the… hospital… Me inside hospital! Different wing, but yeah… Vietnam, one year Then come back… but, hmm… Two or three people there, my friends… Pilots… killed in combat… Tough… Breaks your heart and soul… But… Get over, move on…

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136 What the hell! I mean… Then after war Me and Diane Many, many letters!! Oh!! Diane… one year… college Me, Vietnam… then my wife So… OK really, you know? Here, There, And Everywhere “How long were you in the military, Bob?” “Two… hmm… two… two… three…” he responds in frustration and finally exclaims, “God damn it! Twenty years.” “That’s a really long time!” I comment. “How did you like it? What was life like in the base?” “Oh!” Bob exclaims with a sigh, “Beautif ul!! The people… th e really good… and hmm… Good memories! And good for you, too,” he says with a sweet voice, turning to Diane, “and two childs! Because … all there, the commerce, the barracks, the medics…” “Yeah,” Diane agrees, “We wouldn’t change that! That was great!” “Really!” Bob confirms. “Tra vel a lot, many, many times!” “Tell her were we lived” Diane suggests.

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137 “Let’s see…” Bob says searching his memory. “S an Antonio, Austin...” “M…” Diane intones as she nods in agreement. “Maine… And England… Three… no, four years in England. Beautiful! But rain everyday!” “Just about!” Diane nods, smiling. “And D.C…. And… hmm… Tampa… No hmm…” “Not Tampa, not then…” Diane comm ents. “We tried, but… never got it!” “But your favorite…” Bob suggests as Dian e looks at him, slightly confused. “You said Maine…Unless you’re being funny…” she continues as the lines in her frown relax. “Yes!” Bob continues. “What’s the name … the town? Really close to this… the… the…” he struggles. “Oh!” Diane exclaims, “You mean Jacksonville?” “No, the, north! A…” “Atlanta?” Diane guesses. “Yes!” Bob sighs, relieved. “Oh, Atlanta!” Diane states, disappo inted. “But that wasn’t in the military … We lived there when you were working as a civi lian… Yeah, we did liv e in Atlanta,” Diane acknowledges, “But that’s where you had your stroke…” “But you, like Atlanta, no?” confirms Bob. “Well…Yeah…” Diane concl udes. “I did. Until then.” ***

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138 Eight Days A Week “Bob, you mentioned you are an engineer…” I comment. “Yes! Bioenvironment…” he confirms. “Did you always know that’s what you wanted to do?” With a chuckle he answers, “Well… One year Tufts… The… the teeth… hmm…” “The teeth?” I muse to myself as it suddenly dawns on me, “A dentist? You wanted to be a dentist?” “Yes!” he nods, laughing, “But then … hmm… No, not right… nah…! So, engineer! But what engineer? Two people in hmm… in fraternity house… hmm… in bioengineering… So I think… ‘Oh, really ? What’s this?’ So, there you go!” *** I would say that Bob is the kind of pers on who defines himself by his jobs… He used to always LOVE every day of his work. He would come home at night, honestly, and never complain about his job. [Oh yes!! Not at all!] He would talk about how much he loved it! I would come home, on the other hand … [Laughs!] With those kids! But him? As stress-filled and competitive as it was in the business world, somehow, he dealt with it, and I… I think that he dealt with it because… He was always so involved in the process that he was doing… Always… Always… Th e goal, you know, the goal was… The goal always was to win, but… He was always so… He was so involved in the process that he was doing… He just loved it, he just loved it And he always did such a good job! Such a good job with it, and was so successful at it, he… He… And I think that it snowballs: you love what you’re doing, so you’re good at it, you’re good at it, so you love it, and it just

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139 kind of all snowballs, so he just, he always loved every minute of what he was doing. He always came home and talked about, even in the air force, he loved every minute of what he was doing. *** Me, before stroke… The work… Business… The first one, the work… Long hours… Many times! And… not the same work! Travel, a lot of travel, too… Oh, a lot! Oh, God, yes! The whole thing! I miss it… My job… I miss it… Not the pay… No, not the pay… Just… The whole thing… I miss it…

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140 The stroke? Of course, really bad… Oh yeah… I miss it! The friends… good friends the hmm… But, you know? Forward! Yes! Forward, fo rward, forward… really! I like the job… and the military and… Bio…. Environmental… yes… I like it! Really good job! And I like the people, the milit ary and the civilian, too! The boss… good… I mean, The… the whole thing is… really good!! So… the whole day… The work And the night, too!! I love job… I think so… Conflict at home? Not me, but the wife yes… [laughs] Because, you know… Me, the work the…

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141 Forty hours a week, no way! A lot… more! Not the military, but the… civilian… yes. Me gone… Traveling… Not be here… In the house… Two, three days… the week… Hard job! And more! The weekend, too! But I liked it… *** As the afternoon turns into evening, we conclude our first interview and make arrangements for a second meeting before classes start in the fall. “I have these two sets of questions,” I e xplain as I gather my materials, ready to leave, “and I was wondering if I could inte rview you separately on our next meeting.” “Sure,” they both reply. “We’ll see you then!” *** As I drive home that night, I revisit the aspects of the interview that I wish could have gone differently.

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142 “Why did I insist on sticking to a questionnaire when I knew that would not be the best approach?” I mumble to myself, disappointed in my own judgment. “Why did I feel safer hanging onto the questions on paper? Why didn’t I just fo llow their lead?” As I shift lanes, I ponder, “Maybe there were no leads… Maybe I was just puzzled by Diane’s silence in the beginning… And Bob’s answers were so short at first that I felt uneasy, almost uncomfo rtable to probe further...” Keeping a squinting eye on the road as the night becomes pitch black, I sigh in resignation, “No wonder so many people shy aw ay from the so-called ‘psychosocial issues…’ It is a messy business.” A Beginning August 2nd, 2004. As I ring Bob and Diane’s doorbell again, I hear the familiar barking from the gorgeous Collie coming from the inside. As Bob welcomes me at the door, I ask him, “So, do you think he’ll let me come an inch closer this time?” “I don’t know,” he says softly, as he wa tches his pet walking around in circles. “Maybe!” I stretch my hand out into the air, taking my chances, but no respose. “It’s a lost cause,” I joke as we get settled for the interview. “Nah, someday,” Bob replies, sitting co mfortably in his armchair. “So, what today?” he inquires, smiling. “Well, since we’re doing the interviews separately today,” I mention, “I was wondering if we could start by talking a bit about you.”

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143 “Me?” he asks, with a puzzled smile. “You” I confirm and suggest. “Your family, your childhood, growing up… You decide” “All right, then,” he nods. “Here we go!” *** Massachusetts… Wintrop… Boston Harbor… The island! I love the island! Not big, but… two or three… small … Boating, of course, because island! Then sail… sail… But not anymore… Years later, England, Beautiful! I love England! Also island. My father and mother… Two generations… Three generations… [Your grandparents?] No, one more… [Great-grandparents?

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144 Right! Right! Right! [European?] Yes! [North of Europe?] No, the south! [The south… Were they Italian?] Yes! Yes! Both sides… [That explains the spaghetti!] [Laughs!] Yes! So… [Did they keep a lot of the traditions?] My friends’ father, yes… But mother and father… Not at all really, no… [Brothers and sisters?] Two brothers and one sister And mother, and father… I’m the oldest. The sister… Massachusetts and Venice… Come back and forth. My brother, one brother… Down here… And the other one… North… [All engineers?] No, no… Me, only one. The family, one engineer. University degree, just me and father…

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145 Me role model, I think… Siblings… Because me, college Brothers and sister no college. I don’t know… Sister… hairdresser… Going to… hair dressing school… The two brothers, not really… the… College, no… One brother, not good [disappointed sigh] Other brother, very nice! He working in old home… Nursing home. Sister now retired… Father hmm… the… law. Lawyer. Many years! Enjoy? Hmmm… I think so, but… I don't know… But I enjoyed… my job! Oh, God, yes! Beautiful!

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146 In school, bands! The trumpet… Start ed with trumpet… Then guitar… And the piano… And the banjo… Guitar… Three, four, five… three… four… five… Six… Yeah! Six years old! Or seven… Knack for music… good ear! My mother, guitar… and… the piano! My brothers not musical… Me and my sister… only… My father, no way! Just me, mom, and sister. Play three together sometimes. I teenager… Parents separate. No problem!

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147 Beautiful! The father is an…. attorney! No sweat! Really! Beautiful! Beautiful! The… divorced… the… the first day… “C’mon over, Bob!” the father and mother, “C’mon over and sit down,” No sweat… No surprise… I knew, of course… I could tell, many years ago… Grew distant… But really good talking! Good friends! Then step dad… The second floor We first floor… The second floor… the stepfather… Neighbors! Two floors, one, two… Not a… Building, just two floors…

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148 [Was he an important person in your life?] Yes, of course! Yes! My father and mo ther and stepfather The father… the engineer, no… But the… in the yard… Always the yard… The bushes… all the same, you know? My father and me… Go and… shrubs, bushes… And not the sister and other brothers, But me, and father, and friends… Go… out… to dinner, you know? Really buddies! [Could you talk to him about anything?] Oh, yes! Father and mother too!! Oh, God, yes!! Because me… My personality… Father, no. The mother, me. My personality, the mother!

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149 Not the father… The dad… is… hmm… engineer, no. The… hmm… the office… Big shots… So, you know, the… the mother… Very close! But with father, too, you know? Father too… But the personality, really… More like mother… Father… The job… the job… But me, the job too… you know? [Laughs…] I know… The mother, once a week, Tuesday… No, Thursday! My mother the…. The pot…

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150 The… in the pot… Yes, the pot! The spaghetti… And… I mean, not a lot… a BIG lot!!! [In the kitchen?] [Like a good Italian family!!] Oh, oh good, oh yeah! And my friends…come, once a week… “C’mon!! C’mon!!!” [So it was a very warm family!] Yes! And the military, same thing… The friends… Yes… Do You Want To Know A Secret? A few minutes later we hear the garage door slowly lifting. “Diane” Bob mentions, “coming home.” As he hears her steps ente ring the house, he sings, “Helloooo!” “Hellooo!” she sings back as she leav es her purse and keys on the kitchen counter. “How is the interview going over there?” “Pretty good!” Bob mentions. “You come?” “Yes,” Diane replies. “Just gi ve me a couple of minutes.” ***

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151 As Bob finishes up his interview, Di ane disappears into the house and gets herself ready. When she retu rns, she motions to Bob, “Ok, it’s my turn now. You’re not supposed to listen to it.” Getting up from his armchair, Bob walks in to the kitchen, where he lingers for a couple of minutes. Diane then takes a seat in her armchair and says, “Okay, I looked over the questions: th ey were easy! Should we start?” “Sure,” I reply, “Whenever you’re ready.” Don’t Ever Change The first one is about personality before stroke… I would describe him as very outgoing, very outgoing, on the go, all the time… Always wanted to be… Around people… Controlling… Certainly “in-charge” pe rson… Whether at work, at home, any place, absolutely… You know, an” in-char ge” person… I would describe him as controlling… [We can hear Bob laughing in the background] Bob!!! This is not funny!! It needs to be private!!! You need to go some place else! [Hey! Cool it!] No!! Hmm… Let’s see… hmm… [thinking] If possible, you know, Bob was very, you know, flexible with, with most… Plans and th ings… hmm… Sometimes not very flexible [says it more in a whisper] but usually flexible with things. [We continue to hear Bob in the kitchen, now washing dishes]

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152 Let’s say that, in a group situation, people decided to do one thing, and it wasn’t what he decided, what he wanted… In thos e cases he wasn’t flexible. I mean, he definitely… if it was a group decision to be ma de, you know, like “where are we going to go out for dinner?” and 2 people suggested some thing, Bob would want it to be what he suggested. In a big group of people… Bob would be the kind of person who would take charge. If you had a group, you know, sitting around, and somebody had to make a decision for something, he would be the kind of person who would stand up and take charge. If you were at an amusement park, in a group, or you were traveling with a group, and everybody was standing there, waiting for somebody else to do it, Bob would make the decision to take charge. So… he wa s a quick decision maker. I say this because Jennifer is so much like him, my oldest daughter. A quick decision maker rather than think things through, rather than think and plan things through. What else… Bob was very outgoing, alwa ys around people… He always had lots of friends over all the time… and he was al ways very loyal to friends. Bottom line, always, always, always, loyal. What he said you know he meant. He was always very upfront with people. True to his word – if he said he was going to do it he did it. Always very, very, very true to his word and in business also. Bob had in the hospital as many competitors visit him as he did people he worked with. That was the one thing that kept coming through, all the time: how honest and fair he was. He always was, even with … with… competitors. A good business person, a m an who really worked for the contracts. He was never sneaky… you know? He was always honest and fair, and full of integrity. Always, always, always…

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153 [And the water keeps running.] Crying Waiting Hoping What do I remember from his first days in the hospital? Probably… a lot of chaos and probably shock because, as a… as a su rvivor you… kind of walk around in disbelief… [Water running…] Everything… it’s like the unbe lievable… thing… happened… I remember the neurologist… coming in… after they saw the MRI, and they gave me all this bad news, and then they starte d doing all these ultrasounds and MRI of the neck and another MRI and ultrasounds of the brain ultrasounds… and… I kept asking myself, “Why are they doing all this stuff?” And they said… They want ed to find out what caused it because they had no earthly idea wh at had happened. But it just didn’t make any sense to me because all I wanted them to do was… Make him… Do something to help him… Make him better… And it just… seemed so ridiculous to me that they were doing these things… Come to find out that there was nothing they could do to make him better… Even in the medical narrative it was page after page and then finally th e last paragraph says that it must have been a dissection b ecause it was not… this, this and this… So I think kind of… Really chaos and shock. During the first days at the hospital I real ly assumed that Bob could get better, as did everybody from his job. As soon as that word was out that he was in the hospital, gobs and gobs of people started showing up… B ob doesn’t remember any of that… But

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154 they all assumed he would be fine, too… B ecause they’re all… his age or younger! Bob was… he had just turned 51, so… some of them were in their 40’s and, you know… “There by the grace of God go I!” They knew about as much about stroke as I… as we did… I think the whole si tuation only dawned on me over a long, long period of time… I would say over a couple of years… I had a long period of… of… anger, and rage…Several years … At first maybe I accepted “Well…this might not be perfect, but… I can handle being able to do this and this, and maybe a littl e bit more…” So I think… I kind of took it in by… little spurts, by steps… hmm… rather than one whole… I think that’s what I did… Bob’s company carried him for a long tim e, you know…Even after what their document says… So… I kept thinking, “Ok, if he has 6 more months we can get this speech thing under control.” So, I kept thinking, “Ok… maybe he’ll be able to work…” I just did not take it in… It was a long time before I did… I think getting that letter… One of the hardest moments for me was getting that letter of involuntary termination… That was a hard letter to get… I don’t know if it was that har d for Bob, but it was a really hard letter for me to get…I guess because I really and truly hadn’t… 1000% accepted… I just had not come to that point yet…That would ha ve been a year and a half after the stroke…. The Long and Winding Road His response to therapy… I think, right from the beginni ng… therapy… was frustrating…

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155 At the very beginning Bob went through the whole emotional thing, with a lot of crying… Not so much anger, at first… but crying… And that was hard because it didn’t seem he was making progress. Then he went through the anger, or the meanness, which was directed towards me… Even though I was warned by nurses in the hospital and the private doctors to expect it… It is still really hard… In therapy the biggest change was… th e lack of motivation, from the very beginning… Everything Bob ever did before he was so motivated to do, whether it was… painting the garage, or… doing anything… And he was just never motivated in therapy. He just never had a goal, even though… I know they have to set goals for insurance, so there were always goals there, but he pe rsonally never had a goal. He never, ever, would set a goal… Therefore… he never… moved… I never thought… Just never moved… The neurologist at first said something about that to me… I asked him the very first day, “Will he be able to work?” And he said… I can’t remember the exact words, but he said it in a very… very bad way to me… something about how high level his job was, and… The way he said it to me made me want to respond, “Well, of course, it’s high level!” But my response was that he was an engineer and he was a go-getter, and he said… he did say that he might not be… quite so… hmm… so… much of a go-getter anymore…He did say that. He didn’t say “woul d not be motivated anymore” but… he did bring that up…

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156 I think Bob could do so much more in therapy if he were willing to work because he’s had, I think, what a lot of the other guy s haven’t had… And the fa ct that I would be willing to work with him eight hours a day… I would be willing to start in the morning and work with him 8 hours a day… and get any of the software that is out there, or… any of the other things… And our kids look for a ll the software in the internet, so… I think that he has resources th at a lot of other people don’t ha ve… And yet, he’s not willing to do the work to do it. I gather it’s part of the damage to the brai n… I think that ever y little part of the brain has a… function, and I th ink that’s… I don’t know… They always say recovery depends on your age and the severity and all of this… but the one thing that has surp rised me, absolutely, positivel y the most, is that Bob has not been more motivated. To me, his biggest deficit is not speech, or reading, or any of that. It’s the lack of motivation… It’s never the kid in school who is the brightest who achieves the most… it’s the kid who is the mo st motivated. I will take a motivated kid at school any day, to the smartest one… So… that’s what I would like to see happe n… Because really and truly, over the years, the amount of work that he has done, re ally, is very little… very little in time… Lonesome Tears in My Eyes Our social interactions… Well, our whole social situation has changed. At first, when we were in Atlanta, ever ybody that Bob knew managed to get to Atlanta to see and visit him. All his friends we re real faithful about calling as well. So we knew the people, they knew us prior to th e stroke, and things were basically the same.

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157 Now, when we moved here, of course, nobody knew us before th e stroke, so it’s meeting all new people… and… That really has been… very difficult… because of Bob’s problem with speech… It’s difficult becaus e people will want to interact, and ask him what he likes to do, typical kind of conversa tion, and since he won’t respond, or, won’t be able to add much to the conversa tion, it is very difficult… I don’t mean people aren’t nice: they are. People are very nice and… they’re more than surface nice, they are genuinely ni ce, but as far as making new, good friends, as far as Bob making new good friends, it’s d ifficult for him… very difficult…to get together and go out and do things during the day which is what he needs to do… He does it, but by himself… I wish to God he had places to go, volunteer work that he could do because he desperately needs to be around people. Xeroxing is not his kind of thing… He really is better, even though his speech is not good, he would do a lot bett er by doing something to be around people. That’s why visiting his friend at the assi sted living place down here was so good… It was good to both of them… So ideally Bob would do just fine doing something like visiting people who had strokes at some place like that. Even going and playing games with them, or playing… if he could… if he could ever get back into playing music. She’s Leaving Home The last question has to do w ith our family dynamics… I think that the stroke has certainly changed all of our family, forever… Nobody will ever look at things the same again… For one, our youngest daughter is becoming a

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158 neurologist…The one whose graduation we we re going to… Now, in all honesty… She started out in biomedical engineering, and everything she ever did in college had to do with the brain… She’s a resident now, she’s a second year resident neurology… Who would never go into somebody and say those ki nds of things, by the way... Now, you know, we don’t know… if Bob had not had the stroke, would she be in neuro? It’s impossible to say… You don’t know… you don’t know… Jennifer is an engineer… she is a true engineer. And she’ s also in business. She’s in with other people in a company… It’s… it’s certainly… It’s changed th e way everybody looks at everything. That summer… is almost like a… silence… it’s almost like a… blackout to me… I know Kathlyn came home from school, the one who graduated from college was there that summer. She came home, and… had a part time job at an engineering firm and really led me through the summer. H onestly, she led me through the summer… I really leaned on her then… And our older daught er was kind of close by because she was about two hours away, in South Carolina. So, you know, it really changed everybody … Before the stroke, Bob had always been the person truly in charge, even when our kids were young adults… and he’s not now. The ki ds are on their own, they really are in charge of their own lives. And… I’ve had to… kind of… step out and also be in charge… So, instead of Bob being in charge of th ings, he’s not… so… family dynamics have completely, and entirely changed. Jennifer is like him in personality. [All of a sudden, Bob voices something from the adjacent room… he had probably been listening to the whole conversation up until now!]

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159 Bob!! [What?] As they got older, of course, they didn’t like to be told what to do, so… Now… if Bob tries to tell them what to do they get angry, and they tell him, “You can’t tell me what to do now…” And Kathlyn too… But Bob still tries to tell them what to do… [Bob starts laughing] Like let’s see, hmm… “Oh, let’s all go to the mall…” “I don’t want to go to the mall, dad…” “No! I decided let’s all go… let’s all go to the mall…” Maybe that’s an overblown thing… But ra ther than him making this decision…He can’t make decisions for everybody anymore… that sort of thing… and he… he… he… When Bob gets frustrated, he will te nd to scream and holler… He thinks the louder he hollers… the better… [The more… AHHHH The better it will be…Of course! Right?] [Bob gradually enters the room] No… it’s not funny…Bob… [Yes…] No, it’s not… [Bob sits by her side and slaps her legs] No, it’s not… when you get frustr ated and then… be careful, Bob! [What?]

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160 While My Guitar Gently Weeps As the interview comes to an end, questi ons start floating in my mind about the dynamics of the separate interviews. “Why di d Bob insist on ‘eaves dropping on’ Diane’s interview?” I pondered. Diane had menti oned that Bob knew exactly what her perspective was on everything, but I still wondered how he fe lt. I was especially moved by his strong response to Diane’s comments a bout his relationship w ith their daughters. Even though I felt intrigued and wanted to ask more questions, I felt unprepared for the task. How can you probe on a sensitive wound without hurting? As the three of us make conversation, wa iting for the right time to leave for the aphasia group meeting in Sarasota (which I w ould attend with them later in the afternoon for the first time), I gather the courage to ask Bob something that had been in my mind for a while. “Bob,” I start, “I was wondering… Would you be interested in giving me guitar lessons?” Shaking his head sadly, Bob re plies in a whisper, “No…” “You’re not going to teach her? You can’t teach her?” Diane intervenes, resolutely. “I know you can’t teach me but that’s a different story… I was a lost cause…” she says smiling. “Yeah! Right! Really!” Bob laughs, shyly. “ Why was I a lost? Tell her why I was a lost cause…” “No… rhythm…” Bob replies.

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161 “No rhythm, there you go!” Diane comments, smiling. “But not everybody is like that Bob… No, not everybody has… has that sense… has that poor sense of music…” Diane says in a joking manner. Feeling pressured as Diane and I gently gang up on him, Bob looks at me and caves in, “All right…” I was ecstatic! I had learned how to play th e guitar several years past when I was a teenager, and I definitely wanted to take it up again after so many years. Inspired by an autoethnographic piece written by my advisor, Dr. Hinckley (Hinckley, unpublished), where she worked with a client who was a piano teacher, I was hoping that by asking Bob to be my guitar teacher he would gradually return to his guitar. “All right! Can I bring my guitar th e next time I come?” I ask. Looking at me between surprise d and amused, Bob replies, “I… I… lots guitars…” “Oh, Bob’s got plenty of gu itars!” Diane interjects. “You have more than one?!” I ask, obviously showing I was never even close to being a really good guitar player. “Oh, are you kidding!” Diane asks laughing. “We have guitars…” “Oh, God, many, many, many! Many, many, many!!” Bob confirms. “My first guitar was from my… my grandma. She was the one that started to play guitar, and she composed her own little songs in the guitar, and all that… and then when I was… maybe 14, she gave me my first guitar” I comment. “Me too!” Bob replies, a bit more enthusiastic. “Really? From your grandma?”

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162 “Yeah,” he nods. “You used to play with your Mom and your sister, right Bob?” I recollect from the previous interview.” “Yeah…” he says, “My mother… no t a guitar, the pi…Pi-a-no…” “Your mom played the piano?” “Yes! And me… the… I the… trumpet… Many years!” Bob says with a deep sigh. “But better the guitar!” he concludes, laughing. “And do you like to sing?” I ask. “Yes… hmm… I have chorus…” Bob mentions. “Bob does sing in a chorus at church!” Di ane explains. Looking at her watch and ensuring we had enough time to drive to Sarasota, Diane suggests, “Bob, why don’t you show her your guitars? We still have about a half hour until we need to leave for group…” “All right.” Bob agrees. As we enter the room, I am amazed by th e number of guitars Bob has lined up in his closet, stored in hard cases. He did indeed have several guitars, and he looked at them all so lovingly, as if each specific guitar had a great story to tell. As he takes his favorite guitar out of the case, I ask him, “Is it tuned up?” “I don’t think so,” he replies and starts tuning it up. It wa s only then that I realized how hard it was for him to use his right arm to stroke the cords while playing. He hugged the guitar with passion and longing, and I could not help but think a bout what a great and inspired guitar player he was before his stroke…

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163 Moved by his struggle and intense frustr ation, I realize we would probably not start having lessons together. I blame myself silently for as king too much and for being so forceful, and I hope with all my h eart that I had not hurt his feelings. Watching the sad beauty of his gestures, I ask him, “Bob, can I take some pictures of you and your guitars?” Smiling, he says, “Sure… go ahead.” Figure 10. Bob in his element.

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164 Figure 11. Dialogue of left and right hands over the cords. Figure 12. Soulful strumming.

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165 Figure 13. A glimpse into the past. Figure 14. Twin guitars.

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166 Figure 15. The Master and his Instrument.

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167 Ask Me Why It is only several months later that I contact Bob again and we schedule our last meeting. As we get settled to start the in terview I notice Diane is not around. “She’s probably still at school” I think to myself. Reading my thoughts, Bob comments, “Diane, you know… school I think… I don’t know, we’ll see.” “No problem,” I reassure him. “In fact, I came today hoping to talk with you, so that’s OK with me!” “All right!” Bob smiles. As I lay my recorder on the table, I ask him, “Bob, I listened to the recordings from the last two interviews and I was wondering… Your perspective on things and Di ane’s perspective are really different.” “Oh yes, oh God yes!” comments Bob. “Why do you think that is?” I ask him. Get Back vs. All Things Must Pass I think… me… change, yes… But… not really the… opposite Some, yes, of course. But Diane… This way the first one and this one [referring to before and after the stroke] 180! Really!

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168 Me… No… No… This many, you know? 90 degrees… Or… or more… But… not… the opposite. The stroke… Of course, not good… but… you know? So what? So what? The another day, you know? Move on, what the hell… So… I do it. Me the stroke… Diane looking the stroke Different… Different… Perspective. Diane three… four… five… Really bad… The first… the second… Not day… Weeks!! I don’t know…

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169 I out! And… Diane, “Ohhhhh!!!” So, you know, different… Different… than me… I don’t enjoy it! But Diane… I think… Me… The rest of the time Slowly slowly slowly I… Getting there… I like life! Way back, yes… and… still! [Diane mentioned that for you it was r eally important to have control of things in your life…] Oh, yeah! Ohhhhh, God, yes… [When you had your stroke, I imag ine it was like losing control] Definitely… Oh, God, yes!!!! The beginning… Hard! Bummm... [makes sound as if collapsing]

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170 Rough… Bad… really bad… Big crash… Oh, God yes!! But… still… now… better… Of course! Not the same… But… different… But still… better… and bette r, and better, and better… Me… Hard But… I cope… Diane… Wow… Really bad! Really bad! I think… Diane… Really… The other way… Me… [shrugs shoulders] So what… you know? Not work, yeah, I know… Big deal…

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171 But… I cope… But Diane…. God! Not cope… Not at all… Nothing! [It must hurt you…] Of course! Of course! Of course! [Do you talk about it?] [Sighs…] Well, yeah… But not… You know? Two or three… not… often… Way back, yes… But not now… Now… Good… you know? But… sssssometimes… one or two years… Way back… wow!! Diane, angry! Oh, God… yes… yes… yes… Because… the… me! Only me the… you know?

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172 Way back… Diane sit home... And me, work. Now… The other way! For Diane, not easy… Not at all! Different… You know? Way back, more… more… REALLY more… More fun… more hmm… wake… More… outwardbound “Oh Hi!! HI!!!! Yeah!!” Yes… yes… oh, God, yes… So, you know… Diane knows that… The other people no… Not at all… But Diane, of course… So, different…

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173 I cope… Not lonely, not really Because of friends, you know? But I think Diane… Knows me, and knows the way back Really a lot of friends! Before, many many! And now… not… not at all… Not at all…! So different… [Do you miss that Bob, from before?] You know, me, no… But Diane yeah! Oh, God, yes, yes, yes! [How did you move on?] I don’t know… I don’t know… But I did… you know? But Diane… No… Not at all…

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174 I’m Looking Through You “Bob,” I comment, as I recollect events fr om the separate interviews, “How have your daughters reacted, in your view, to everyt hing that happened after the stroke? I remember you mentioned that one of th em is really similar to you, right?” “Oh yes, yes…” Bob says with a sigh. “Have you noticed changes in how you relate since your stroke?” *** Daughters… Different… Because now… not me… The wife, the kids, you know? And way back, me. It’s… the hmm… me. And no more… Because… what? The… little girls… and now… [indicates they are grown up now] So… Not me, you know… So what? Talk more Diane… yes! [Because they’re grown up women, or because you

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175 have your aphasia?] Oh, no, the aphasia… [Do you feel that they don’t know how to communicate with you, or… that they’re reluctant to… talk to you?] Oh yeah, of course… But… but I… I know… So what? You know? [Did you ever talk to them about it?] [Silence]… Hmmmmm…. No… no… Because three or four times… here… Not very often… No… not at all… So, you know And me to go there… kids house, too And I enjoy it! But hmm… I mean… I… do it… but hmm… kids, you know… I know… something wrong, you know? I can tell… Yeah! Of course! My girls, what the hell!

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176 You know? I can tell… Me the stroke, of course! So… yeah… The two engineers! [So you were a huge role model for them!] The second, doctor and engineer… And the first one the engineer! You know? Yes!! [Would you feel awkward sitting down with them and talking about it? Bringing up the subject that now things are different that you feel that things are different…] No, not at all… I mean… Somewhat… But… this… different days, you know… So what? Move on!!! You know? Move on… [You’ve really made your peace…] Yeah! I mean… What the hell!! What option, really! “Ohhhhhhh…” Bullshit… you know? *** As I listen to Bob I feel torn between my professional and personal history. When I started my first semester of school in the United States, I went th rough the experience of

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177 losing my father, miles away, in my home country. I felt fortunate enough I had the opportunity to fly in and see him, hours after he had passed. As I stood beside him, hands cold and crossed on his chest, I felt a wave of repentance and pain, a desire, stronger than any emotion I had ever felt to tell him so much… So much that I wished he knew… I loved him more than life itself, and he was the first person I had ever lost. As my life flashed in front of my eyes, from my first bike ride to the mo ment he took me to the altar, the pain just ripped me through my inside s, and tears rolled down my cheeks, uncontrollably. Sitting in Bob’s company that afternoon, I wished he could reach out to his daughters, beyond the surface, beyond the routine. I just wished those two strong and determined engineers would never, ever feel the same pain I had felt two summers past… Free as a Bird – Drive My Car Trying to compose myself again, I ask, “Bob, have you ever felt as if you were caged in?” “Way back, yeah…” he replies. “B ut… the door opened… many years ago… I wanted go out!!” he says with a chuckle. “How did you find the key?” I ask. With a wide and somewhat bittersweet smile, he answers, “The first year or so… cage in the h ouse, in a room, in bed. And then… the… drive… no drive… You know? And rehab… Oh, boy… In the hospital… rehab feel like cage…” he comments with a sigh. “I wanted… out… Really out…” “Did you feel that way becau se of the therapists?”

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178 “Oh, no… Therapists beautiful beautiful!” he explai ns, “But… Same meals… you know? And… the bed… ugh…Oh…. On, and on the bed… you know?” He sighs, “Tough… you know? Big cage, rehab.” “How was it when you got back home?” I inquire. “Well, in beginning, caged in at home as well… downstairs… because… not… upstairs… And slowly… I remember the first one… upstairs…” “You remember the first time you went upstairs?” I confirm. “Yes!! Yes!!” Bob says, “Right! And th e car… really, th e car… good, because… FREEDOM!! FINALLY!!! You know? One month later! The car, hope…” “Really?” I ask him. “Oh yes!” he says, nodding. “Car, hope!” We Can Work It Out Diane and me now? Well… Good and bad, really… Good is… three or four years ago… More speak… talk each other more… And the kids, too, really… Way back, not at all… right after stroke The bad… Because… [Starts laughing, a bit shy]

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179 No sex! Well, some… finally! [Who was it that would avoid it?] [Silence…] Me… I think… Why? I don’t know… I don’t know… Now, yes! Yeah, you know?” Diane… Beautiful, of course!! And I speak… really! [says with great tenderness] And I mean it!! I mean it!! Oh, God, yes!! Oh, God, yes!! Beautiful! Beautiful!! [Sighs…] So… the only bad, I guess so… Now, life… in between, you know? What Goes On In My Life As we come closer to conc luding our interview, I ask, “Bob, what do you see in your future?” *** Now… In my life Once a week, I go to… Old home…

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180 Nursing home And just work… And… I speak… and… One… [Silent… eyes swell up with tears] The… die… A lot older… a lot older me… But still… I… I don’t know why… But I… get attached… Tough… Because the… stroke… I know… what it’s like I think next year I hmm… the wheels Meals Wheels… And golf… Friends… Good friends! “Slow down! Slow down!” Oh, hard!! [says, laughing] But group, rewarding Mrs. Paul Curt, Tom, Larry,

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181 Beautiful! *** Noticing I had completely lost track of time, I jump to my feet and exclaim, “Oh, goodness! I was just so engrossed in our conversation I forgot I have an interview scheduled today with Tom and Erika!” “Call!” Bob suggests, and I reach for my cell phone to warn Tom and Erika I would be a few minutes late.” As I gather my gadgets together, I tu rn to Bob and thank him profusely, once more. “No sweat,” he smiles. Getting ready to leave, I no tice Bob and Diane’s pet walking quietly in circles in the dining room. Taking my chances, I come a ta d closer to him and stretch my hand. For the first time, the beautiful animal comes closer, sniffs my palm and allows me to pet its soft and profuse fur. “Skittish,” Bob comments, “but slowly, slowly…” Ecstatic with the honor, I give Bob a grateful hug and embark on my next journey.

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182 Chapter 7. Light Bulb! Larry and Sue’s home, on a warm and torren tial morning in Sarasota. Waiting for the storm to let out, we sit at their cozy kitchen table, ca sually talking about the next meeting of the Sarasota Memorial Aphasia Group. “There are about eighteen of us in the group,” Sue says “and one of our survivors is an artist. She started painting about 8 y ears ago, not long after she had her stroke.” “She never painted before?” I ask. “No, never. She’s incredible! She does wa tercolors, she does flowers. I’ll show you a picture she painted of the Ringling Mu seum. Hold on!” Sue disappears briefly, and returns with a small watercolor, with bold and soft colors blending harmoniously. It reminds me of Monet’s Cathrdale de Rouen “She did this from a small photograph…” Sue says. “I think it’s incredible!” I look at the painting. It is quiet peaceful, but resolute. The br ush strokes are firm, but not rigid, allowing the colors to dance with ease. I lose myself in the small scene, trying to imagine the hand who painted it, and wonderi ng what allowed that hidden talent to blossom. Noticing my interest, Sue continues. “Edi e lost movement on her right side after her stroke, so she paints with her left ha nd. When Leslie got married, she painted her a beautiful scene of Siesta Ke y, with the sand and the beach… It was unbelievable! We all think that Edie is going to be a very famous artist someday! Wouldn’t she be a wonderful

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183 person to incorporate in your paper?” Sue as ks. “If you come to the next aphasia group, she’s always there with her daughter, Cathy.” *** Venice, August 2nd, 2004. Given my infamous luck with directions, I gladly accept to follow Bob and Diane’s lead to Sara sota Memorial Hospital for the monthly aphasia group meeting. I tailgate them faithfu lly through a succession of bends and turns which I could never retrace from memory. Despite the traffic, it does not take us long to get to the hospital. We park in the garage and look for the el evators. As the three of us walk down the wide hospital halls to the apha sia group room, we run into a tall lady, head held high, walking with a four-point cane and a large artist’s bag, overflowing with paintings. “Hi Edie!” Bob and Diane hug her. “Where’s Cathy?” “Parking car!” says Edie, pointing to the garage. When we finally get to the meeting room therapists and the other members of the group greet us warmly and get caught up on the latest news. Noticing Edie’s bag, they all gather to see her most recent paintings. With eyes wide open, we collectively travel from tropical lush greens and glowing crab claws, to peaceful beach scenes, and meadows of flowers which would make Monet proud! A couple of minutes later we hear foot steps approaching in the hallway. “Hi everybody!” says Cathy as she enters the room. “Today’s Mom’s birthday, so help yourself to cupcakes and something to drink!” With cupcakes in hand and drinks served, everyone finds a seat around the large room Edie and Cathy sit side by side. Two

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184 generations of a quiet an d tempered strength. That night, I leave the room as if walking in clouds: Mother and daughter had both agre ed to participate in the interviews. *** I pull into the parking lot of Ms. Edie’s retirement community and give my name at the front desk. “She’s expecting you” the lady says courteously. “Third floor hallway on your left.” As I ascend to the third floor inside the roomy panoramic elevator, I notice a large painting hanging on one of the walls. It is a montage with four scenes portraying the same street during the different seasons of the year. I wonder silen tly if that is Ms. Edie’s… It does have her style! I find Ms. Edie standing by her doorway. She welcomes me into a quiet apartment, full of light. A large window lies ab ove a drawing table, covered with brushes, watercolors, and papers. I take a seat cl ose to Ms. Edie, and without knowing exactly how, we start talking about her husband. To my amazement, I find out she divorced him not long after her stroke, after bei ng married for fourty-one years. “Poor me… Poor me!” Baloney! Baloney! The doctors say my husband… “You know, your wife is very sick… be careful… because maybe have a… Your wife is…. hmmm… dead… Or… is a coma… and hm… vegetable.” “Vegetable!!? AHHHHH!! My world!!! My world!!!

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185 You did it! You did it!” Ruined! Ruined everything!” Me, confused… I did that? Months, me, depressed… Have happy pills… Wait a minute, Wait a minute! Something goofy here! My brain… Well, have a stroke! Big deal! That’s all! Ok! What to do, what to do? One day (I remember clearly, clearly!) Light bulb!! Big light bulb!

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186 You know what? I have a divorce! Good! Is amazing! He was crazy He was drunk Kitchen Lots of times! Fall down, and hm… Wacking… Hearing… and … Blows… and… “Ohhhh…” with telephone, “Cathy, Cathy! He’s coming! He’s… he was very… drunk, and… have a blood here… I can’t do it…” He’s drunk… Worried… Nervous about husband… He was… in problem! Alcohol… And every day, what to do… what to do…

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187 Cathy, help me! Chris is drunk again! What to do? Two years… Three years… And more… More… And then, Light bulb! *** [Several days later, sitting with Cathy in a quiet room at the retirement home] Things didn’t get really terrible at their house until about 5 years after Mom’s stroke. I thought, “Where should Mom live” ? Because… Dad was just… Crazy!! I mean, drinking to falling down, and Mom would ca ll me screaming bloody murder… “What, what oh…. Cathy!!! Oh!!!” Just crazy!! [Her e yes swell up with tears, but she contains herself. I sit across from her, eyes open wide so my tears will not fall]. And… and Mom … left, you know, at one poi nt, “Come get me, come get me,” as best she could communicate… and… I brought her to my hous e, and… trying to formulate a plan, you know, what’s gonna happen here… and… and she in sisted that he had to go to… rehab… you know… which he… went to eventually, and stayed for 2 weeks and left. Got tired of it and left, “This is stupid, I don’t need this .” And… So… Then we take her… back… and

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188 show up at the house, and there he is on the sofa, with a jug of wine sitting there… So she’s just… [deep sigh] shattered… and… [tea rs swell up in her e yes, and I can barely contain my own] So it was an… ongoing mess… but… it turns out… I didn’t know it as a kid, but… he did just… stupid things… [silence] Gruas y Cucarachas “My history?…” Edie thinks for a while and then continues “Hmm… My hmm… birth… hmm… Chicago, and… then… my Dad have a… after the war, hmm… WWII, and… a had job for liquor store business… li quor hmm… distillery. And all the family go Mexico city, and m…. also grandma coming, all Mexico City, and no Spanish! Everybody, ‘Ok! Venture,’ you know? Venture!’ But I have 10 years in Mexico City!” “So you lived for 10 years in Mexico City?” “Yes!” “How old were you?” “Ocho, ocho!” “You were eight years old? So you speak Spanish?” “Yeah, but, you know… I understand Spanish, but is… vrmmm… the stroke… blup!” “Really? The stroke took most of your Spanish?” “Yeah… was… once in while have the wrong numbers, numbers especially, because what have as child for the… counting… and the money… is strange… maybe have a… the word for strange people… Cu caracha! Grua! Hmm… It’s different… It’s my brain, poopoo, poopoo, and that’s all.”

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189 *** When my mom was a kid, she knew… she was very close with a family, and the husband… Well, he had a totally separate life from his married family. I guess he had a mistress some place, and the guy would never show up. But, when he did come back to the home, with the children and all, the wife would… do his dirty laundry that had accumulated while he was off with the mist resses…I guess mom… saw this girl who was so… traumatized by this… crazy, obviously crazy situation, and I think mom thought, well, let’s… kind of keep things… keep the peace. To the best nurse, with love “And after Mexico City, Ms. Edie? What happened?” “Nursing school in… hmm… Baltimore, J ohn Hopkins. Scholarship. Three years scholarship.” *** My job Years go by… Have a nurse Nursing! Operam nursing. 35 years. Ever different, every day something new! Oh! That’s good! Oh, good!

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190 It was everyday! Different patients, Different doctors, Different hospitals Very comfortable. Very calm Operam room Have a hand cut off, and then… oh… [Re-attach?] Yeah, yeah! I’ll tell you everything you do and… It’s calm… And doctors, good doctors, very good doctors It’s hmm… My sense that calm is very important Calm people Nervous What’s the uh, uh!!! Hmmmm!!!! People

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191 Patient Operation Very scared everything! Everything! I’ll tell you everything here Don’t worry That’s just here… and the… pr essure… [gestures going down] And then 5 minutes And the pressure It’s amazing! [gestures getting stable] Very calm! “Oh, how are you, and… you children?” “How many children?” And then talking, talking… [gestures pressure going down] Is amazing! But my sense… talking one to one… “Oh, I have a… doggy or something?” That’s something good… Then [sound effect of pressure going down]

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192 That’s good… That’s good… *** Edie points to a plaque on her wall. “Oh, is that your award?” I ask her. “Yes, yes!!” “Can I see it?” “Yeah!” Carefully holding it in my hands, I read the inscription “The caring award, chosen by the nursing staff as the RN who practices the art of nursing with exceptional skill and genuine concern for others!” *** I got a B.A. degree in health planning and administration. I worked as a nursing home administrator and… it was horribly frus trating to me… to have inspectors come in… and… find fault with all sorts of… issu es… related to nursing… and not have any… idea what they were talking about, or why that was significant. It was a mess, the whole business part of the healthcare was just… a mess… and… so I went to nursing school… because I was always interested in health, but found that the business side of it was just… Crazy! So that’s… how I think that I got into nursing… But then also… When I was a kid, a few times at least, mom took me to work with her, and she worked in the operating room. In Kentucky, at the trauma hospital, she took me in at

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193 least a couple of times, and I saw fingers bei ng re-attached, and all sorts of things, so… I’m not sure how, exactly… but that’s part of it… Cupid’s Broken Arrow “How old were you when you got married, Ms. Edie?” “Hmm…” She searches for the piece of pa per where we were keeping record of the dates and writes 20 in neat handwriting. “You were 20 years old?” She nods. “My goodness! You were really young! How did the two of you meet?” “And the hmm… high school.” “Were the two of you high school sweethearts?” “No, no, no, no…” She responds emphaticall y, “Hmm… date, eh… Blind date!” “Blind date? Really?! How did it happen?” “Emm… you have the… the… nursing schoo l, and have a… lots of… girls and… hmm… one the girl ‘I want to have a… artist… no…hmm army man…’ ‘oh come on, more men is, three men is… hmm…’ ‘That guy like… dying…no… sigh…’ Date. Blind date. Then… three girls and three girls [ guys]… armies… that’s all. Uhm… after… hm… February… March… and… something…” s earching for the paper once more, Edie writes 5 weeks “This one here… all the way… marriage.” “Oh wow!! Really?”

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194 “Yea!! Yeah!! Yes, my… friends hm… hmm… nursing home [school], ‘No, be careful! No, no!! Oh!! Slowly, slowly!!’ No more… I don’t think so, I don’t think so… Yes!… marriage, good, marriage!” “You wanted to get married right away?” “Yeah! The man is perfect! But the… the… nursing school … the… very… young people… adult people, they say… the… nursing staff they say, ‘Yeah… oh oh… be careful… something happened here, be careful! Maybe your dad, the telephone contact, because what’s the matter? Your your daughter is is ge tting marriage… you understand??’ And they have a… my dad have a… hm… telephone…me…” “Your dad called you?” “Hmm… Mexico city no telephone in house… but my hu… my Dad have a… job… and then have a … ‘Well, I don’t know… I I couldn’t do it… I say is bad or good. I can’t do it! You decide!! You decide!!’ A nd then have a… ha… telephone… hum…” “Telegraph?” “Telegram… hospital, the… John Hopkins, the nursing school… ‘Ok, my husband… my… daughter is all right, all ri ght…’ Because everybody, ‘Wait a minute!! Something goofy!!’ But anyway… that’s good.” “So you fell in love with him at first sight?” “Yeah… 5 weeks! But now… divorce. Prob lem… he wasn’t good… But that’s all right.” Moving Saga The husband… hmm… ah… he

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195 was army… 2 years army. And then go to hmmm NY city. He was a pof… accountant… school… 1 year… NY city. Then my husband said, “You know, I think so professor, good idea… it’s no money, but is good…” I was born in Alabama. We were there for about 2 weeks. Dad… I think maybe he got his Master’s there… So, Alabama, one and a half years… Paper… [Writes June 1961 August 1962]. Here, and then all the way, then August… Cathy… One year a half… [You were there for a year and a half before Cathy was born?] My husband he have a job in the summertime, all the year, to summertime, that’s all… [So he started in June of 61 and he got his Master’s in 62 before Cathy was born? And he got his Master’s at the same time? In one year?] Very close because hmm… Final test,

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196 very important, the… here… [Friday] and here, Cathy [Sunday] My husband have a final exam… [writes Friday] [On a Monday? I ask] No… [On a Friday!] Then test, and the baby is coming! I did that! You have your test, calm down, baby is coming, but… [So you were calming him down with a big belly?] Hot! Hot! Hot! Summer, Alabama! But, calm, calm, calm… Then we moved to… Tennessee, I think… We lived there for… a year… year and a half. I think he taught at Vanderbuilt… Have… now have a… job for Vanderbuilt University, and then… two years maybe have a … more money and... Then we lived in Ohio for a short time... Then moved to Indiana… Then moved to Kentucky. West Virginia we just lived there for a short period, like for the summer, because he had a job starting at U of L … in the fall… And then he was at U of L for a Louisville, KY, the University of Louisville. The children almost… ten, thirteen… fifteen years going to school in Louisville, was good. Then, my husband decided ‘How

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197 long time, teaching… and he got his JUD at U of L. about lawyers, lawyers?’ He was the professor in the night time lawyer, lawyer. Then moved to Illinois, U of I, Champaign-Urbana. Dad was getting his Ph.D. there… and… In Illinois I did my junior and senior year of high school and college, And then… 3 years, 2, 3 years… you know… we go to… Champaign-Urbana University hmmm Illinois and more studying for doctors for... [Ph.D.?] Yes! The accountants… Oh… My God! And while I was in college my parents moved back to Kentucky and then to Florida. My husband had a job… University of Tampa… [writes down 1983] Mom was a nurse, so she could get work anywhere. Me? My job nursing, everything is good! Have a good hmm… money. So, hmm… lived lots of places… Ocho… Ocho states… Figure 16. Edie with newly born Cathy in her arms, and her husband.

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198 Figure 17. Edie wearing her nurse unifo rm and carrying Cathy, a few months later, together with her husband. My Angel “That’s you and Cathy, right?” I ask Ms. Ed ie, pointing to the picture on the wall, above her nursing award. “Yes, yes!” “Is she a model?” Ms. Edie laughs. “No, no, no!!! The… glamorous shop… pi ctures, pictures. [It’s an organization that has set up places, us ually in the mall… And you go in, and you… hmm… You have your hair done, and your makeup done, and you pick through their wardrobe selection.] We laughing, and joki ng around!! Makeup and fancy outfits!! [It’s like… a photo shoot, or something… and hmm… they put you in all… you get to pick out your outfits, and they recommend bac kdrops, and then they recommend poses, and they say, OK, now, turn your head, lift your ch in… It was fun, you know, to get to dress up, and get your hair done, and get your pictures taken. The picture is… It’s since the

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199 stroke, so… hmm… probably, let’s see… it’s been almost 10 years now… so probably 6 years ago… or something like that…].” “You two seem to have lots of fun together!” “Yes! Cathy is… is… I can’t believe it Is… eh… my daughter is… friendship… you can’t believe… good friendship… more… l oving, but is… one to one… is everyday! How are you?’, and… I tell you… Is amazing !! Is good mind, and heart, and… is… My angel because otherwise I can’t, I can’t ta lk!! More doctor’s appointments, and… the… husband… Cathy… husband John, he is an accountant, and where was the money, and… the… bills, and… is everything...” “So they helped you take care of care of everything!” “Everything!! Oh, thank you, thank you!!!” Ms. Edie gestures, thanking Cathy and John. “Amazing!!” “Is she your only child?” “No. My son, two year difference. But… is different… My son is… my husband is saying… ‘No telephone contac t… birthday & Christmas, th at’s all.’ But Cathy…” Ms. Edie sighs and smiles. “Every bit… Child, how do it… help me, how to do it, help me, what to do… help me, help me… help me… Amazing!” “So she helped a lot around th e house, even as a child?” “Yes! My son… good friends, outside, we don’t know! But Cathy, yes, help me for grocery store, ‘I’ll do it!!’ Be… be caref ul, be careful!! ‘I’ll do it, I’ll do it!!’ Is amazing!! Is good!! Is amazing! I don’t know why! You never know?” ***

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200 If I was close to my parents? Oh, close to Mom! Dad was sort of a “non-player.” Too busy doing other things… Apparently he fe lt like he didn’t have any responsibility to do anything at the house. So mom had to cle an the gutters, and mo w the lawn, and strip the wallpaper, and paint the house, and put up wallpaper… [It was my team! We have a good time… Laundry done… mowing lawn… but I was worried that the… mowing the lawn because I was nurse for operate room, the child is very scary because of mowing the lawn is …It’s so mething… I’ll do it myself… yep…] It’s not until later that you look ba ck and think… hmm… he was never there… Stuff that… I didn’t k now about as a kid… A lot of stuff has come out. Since the stroke, I have come to understand that… Motherhood and married life was kind of har d on Mom. I think I… perhaps… was her buddy… because [lowering her voice to a whisper] Dad was a son of a bitch, which is terrible to learn now. I suspect that… because he wa s so terrible to deal with, and because I was always around, I was sort of her helper. He woul dn’t do anything. Painting, or wallpapering… he just wouldn’t have anyt hing to do with any of it. So Mom and I did things like that. So that’s probably part of the picture that she paints. Can’t talk! My voice Talk not very well I have a stroke and very sudden

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201 I couldn’t talk nothing! I understand everything! But… I can’t talk very well… But anyway Big deal… you know… Oh well, Make speech therapy It was worried about The have aphasia… hmm… therapies and… “Your nose…” Where was nose? I don’t know… Nothing… Is bad! In Michigan, speech therapy Very intensive! Summer time, here… 3 weeks. Weeks? No… no… weeks… this one… This one… Two, two… 6 weeks! A lot of work! Ohhh! My brain!!

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202 Oh my god!! Anyway… *** Normally you only get rehab for 6 weeks or something, so we looked for other centers where they work with people longer af ter the stroke, to do home programs … We went to that a couple of times… and each time for a week, six months apart or something… My Dad went with Mom to the University of Michigan Aphasia Program up there… [sighs]… He went with her for the majority of time. The summary version… His summary view was… that… they’re taking advantage of people they’re not really gonna help… and… he resented… I thin k… he… felt maybe I was pushing… to go and… “Try this, and do this,” and… I’m told he had a… confrontation with… somebody there, I don’t know who… and said, “This is a crock, you’re charging people thousands of dollars an d… you don’t have any proof that they get any better! It’s not right to… feed on people’s hopes, and have nothing to show for!” [Cathy stops briefly and continues] I… I don’t see it that way… I think… it was of great value to be in a place where other people are like you… [Almost starts crying… I wish I could r each out somehow, but I don’t know what to do. We both sit in silence.] And… hmm… that… if… even if she di dn’t… even if she wasn’t… Why is this upsetting me!!… [She exclaims, surprised that he r emotions are still so strong]

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203 Even if… she wasn’t speaking in complete sentences… I think she was with a lot of people who were also struggling to commu nicate, and saw lots of different ways to communicate… So, I thought it was good, but then… I thought it was beneficial, but then… I didn’t have to spend… you know, f our weeks, or five weeks, living in a dorm, with Mom… and Mom being… hmm… Let’s se e… Mom was a really good student in high school and college, so it’s very important to her to do well with teachers and tests, and stuff like that… so… it was rea lly frustrating to her… to take the tests… and Dad saw that. *** Mom… Hmm hmm… What was the name of that speech therapist at Blake Hospital? Was it Karen Jones? Yes, yes! How was she different than the others? I remember you really liked her! Yes! Karen... All the… hmmm therapists, walking there… [Indicating rush] but the lady is calm… Okay… slowly… slowly, calm… Don’t worry… my voice… bla voice [harsh] slowly, calm… don’t move… too much talking… Tension… because of what the… she said… it’s all right… calm calm… is a… is very important…

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204 because is… have a… the stroke and suddenly what happened? I can’t talk!! What is… is very important the lady… that’s good… amazing… I thought so… She was… in the midst of all the turmoil that she was calm, and that she had more of a sense of what you were going through, And that you were better able to communicate with her… Yes… Is very important! One hand, one hand… What to do? “How did you discover painting, Ms. Edie?” “No… nothing special… but… One hand… what to do? One hand… Maybe painting because otherwise is… is gone! We’ll see… I don’t know… maybe have a… teacher, or… High school age… We’ll… we’ll see… we’ll see. The… the… first time the teacher is… let’s see… I can’t talk ve ry well, but I want to know… maybe… with hmm… waters…. Try. Anyway… and everydays simple tricks, and what to do… and … colors… and… more and more, and more, more!!! Is… amazing!!” “So you took classes!” “Yes, yes!!!” “In the beginning you took classes?” Ms. Edie shakes her head. “Right now have hmm teacher, Sarasota, too!” “Oh!! So you continue taking classes!”

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205 “Yes!! The… I like so much lady is ve ry gentle… and…is… tips what to do, and… hm … I understand everything, but… maybe have to repeat… the… is … colors, different, or dark, more dark here, and… the other is all right… but we have a good class, good class! Wonderful… the… lots of people understand I have a stroke, and they… oh, it’s all right, I understand! We have a good time! You, you… colors different, colors… we are all… we have good time!” “How long have you been painting since you had your stroke?” Looking for our paper and pencil, Ms. Edie writes down. “This one here... this one... January 1st...” “So it was a new year’s resolution?” “I think... well...” She laughs “The time... the class’s time…” indicating that was when the classes started. “What materials do you like to use? What’s your favorite medium?” “Hmm... Watercolors! Very...” “Soft?” “Soft yes, but… Bold, and colorful! Or... very softly... But... anyway... is fine… but… my… very important… hmm… calm… everybody calm… water… Very calm, no... telephone, no nothing... very calm! Very calm here…” Seasoned Sailor “Sailing?” I repeat surprised, ensuri ng I understood Ms. Edie correctly. “Yes! Yes!! I try anything!” She replies, smiling. ***

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206 My sailing… my sailing… Very small…very small boat… All people is nervous… ‘Ohhh ohh, scary!!’ But I… Because my husband knew, We had a boat, years go by, 10 years Understand the waves, and… winds, and… what to do… Is fun!! Windy! More, more!!! Hmmm… Sprinkling, and… Fast!! The wind is coming!! [gestures with her hand] The keel, all the way, keel! My brain is no worry No problem now! Quiet… quiet… No motor boat… Myself… Myself…

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207 Myself… I’ll do it myself… I don’t know what… I have a… I have a stroke, But painting, sailing… I could do it! But that’s all! *** I watch Ms. Edie silently, as she gradually brings a flower to life with her watercolors. Her left hand is steady and calm, as she gently al lows the flower to bloom on the rugged paper. She seems centered, at peace, completely in her element. I imagine this is what she looks like when she is sailing, or when she was talking, firmly but serenely, to a worried patient in the operating room. Figure 18. Edie painting in her apartment.

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208 Figure 19. A glimpse at Edie’s palette. Figure 20. The artist at work. ***

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209 Feel Changes? Oh well... very different... but same. Hmm hmm... My job, and… my hmm… car… the grocer, I did that and… everything! Everything! Is different… But… That’s fine! You know… I have the stroke… Now my colors… more colorful!!! My… my… colorful… more colorful! [Well… your color perception is sharper.] Yes! Yes! Notices colors, things… We have a driving for doctor’s appointment… “Cathy, Cathy! Look at the flower!” “It’s driving, Mom!“ “But Is good!!! Look!!! Is amazing!!!” Is colorful!!!

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210 Oh my God! Everything is colorful! The sky, wonderful! All, all the… the… flowers… Hmmm clouds, Colorful no, but… Almost very cloudy day, All the cloudy day, And then, almost hmm… Snowing coming… snowing… Sky and… the… danger… I don’t know… Everything… I try anything. My brain is… wonderful colors. *** I suddenly remember the painting on the wa ll of Ms. Edie’s retirement home. Four pictures of the same street, during different seasons of the year. Same… but different.

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211 Figure 21. Edie’s “The Four Seasons.” *** I get the sense that she is… now… [silence]… more likely to… say… how it is… you know, rather than…saying things… that seem right… or that… people would want you to say. It’s not that she is unkind or anything, but… She’s maybe… Well, she’s definitely less willing to put up with crap, from dad… and… and she… and it’s so… [Silence. With a quivering voice, Cathy continues] … helpful to me… that she’s… sort of ma tter of fact about it… because of the two of us, I am more… I guess emotional about it…

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212 Yeah… the mess it’s turned into… and she is more… sort of… matter of fact about it… and… when he sends crazy letters… they seem to affect me more… because they remind me… what a mess things are… and how crazy… but she is… she just says, “He’s crazy!” And she doesn’t… regret… which I don’ t understand, but she doesn’t regret her life with him… I don’t understand how… [almost crying]… well.. It’s hard for me to think… that her life was crappy before… I think it’s cr appy now… it’s hard to know… that it was crappy… for all those years when she was nor mal! But she… [silence]… you know, she can look at old pictures… and she do esn’t… have bad things to say… Dad… I don’t know… I don’t know… When he got so crazy before she left, he was dreading to do… I mean… just crazy stu ff… crazy… and… I have… I suspect… that… [silence]… We talked to th e counselor person… that… why would she stay, and… the counselor said… well… it was her choice… and… she may have had… things… in her… in her past… or… growing up, that… ca used her to make certain choices… and…[silence]… I suspect… that one of the big reasons people are supposed to stay married is because of kids… and so… [silence]… I hate to think that [almost crying] she stayed in that crappy situa tion because of me… [silence]… But… Dad has implied that it wasn’t always terrible… and… I guess… certai n parts were not… terrible… so… hmm… and I guess it’s… good that she is more matter of fact about things, because if she was emotional about all this it would be rea lly difficult… I mean… hmm… [silence]… I didn’t recognize, before… well… I didn’ t think, before, t hat she was… very strong… emotionally… I thought that sh e… and she was… I mean, she was not… probably as strong emotionally … as… she… should have been … if… assuming that the

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213 thing to do would have been to get out of t hat crazy situation… I mean, it would take a strong… it takes a person to get out of that situation, but it also takes a strong person to stay in it… Do you know w hat I mean? Hmm… But my sense, before, was that she was… pretty passive… I would think… I can reme mber thinking that of her… and… maybe… she was like that because she was trying to keep the peace, you know? As a teenager… You’re not aware of it, or, can’t see all the elements… hmm… but now… I appreciate how… hmm… emotionally strong she is… and matter of fact, and… hmm… [silence]… there are lots of times where she’ll say… “Don’t worry about it…, just don’t worry about it!” because I’ll… sometimes I’ll get… hmm… sigh… kind of unfocused on what’s important… because… I want to do things that will help her, but sometimes I have to say, now: what is your priority? Or what… y ou know? To help me… focus on… what’s important to her. I appreciate… I appreciate her ability to focus me on what’s important… and on… hmm… and how willing she is to… do new th ings, or handle things, or… like her art class is starting again tomorrow… the semester starts… and hmm… hmm… she… arranged… that… her art classmates would ta ke her… to get signed up for the class, because it’s something that I had always had to do, and fit into my schedule, and… ideally you get there… at th e crack of dawn to sign up, and like… I could never make it… and… so this last time… I’m not part of the class, so I don’t know how it came to that exactly, but it ended up that she went there and signed herself up with some people in the class! So that was nice for me because then I didn’t have to figure ou t how I am going to get there, and what time, and how am I going to work out my schedule.

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214 Actually that’s one of the things that I learned at the aphas ia conference in Tampa, was… Speaking Out!, yes, was… The be st speech therapy is to have to communicate to get things you want done! It’s not sitting an d saying the red truck went up the hill… it’s… hey, sign me up, here’s my credit card, where do I sign, I want that class… you know, all this stuff… so hmm… and so I appreciate that she’s willing to do all that… *** Sitting in the quiet apartm ent with mother and daughter together, I ask if I can photograph them close to their Glamour Shot picture. I notice Cathy gets close to her Mom and whispers something to her, quietly. I then realize she was te lling Ms. Edie that her hair was sort of bunchy in the back, lik e it may tend to be when you go to bed with wet hair and your hair is shor t. Ms. Edie laughs, and leaves for the ba throom to get her hair fixed up for the picture. When she retu rns, Mother and Daughter give each other the final beauty touches and we have f un with an improvised Glamour Shot. Figure 22. Cathy and Edie in front of the Glamour Shot picture and Edie’s nursing award.

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215 Figure 23. Mother and daughter posing in our improvised Glamour Shot.

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216 Figure 24. Improvisation number one. Figure 25. Improvisation number two.

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217 Chapter 8. The Rebirth of a Salesman Young Diagnosticians in the Field End of fall semester, 2003. A young blonde man, wearing a cap and comfortable clothes, sits across from a tall and skinny clinician in the speech clinic. A box with a variety of objects and a thick stack of cards lie neatly between the two, while a small tape recorder faithfully spins its tiny cogwheels capturing ev ery sound exchange with methodical accuracy. As the clinician strives to remember all of the details for the proper administration of the standardized language battery, the young man focuses his blue eyes on each card presented and tunes his ears to ev ery word uttered, trying with all his might to respond to all questions to the best of his ability. Quietly, in the semi-darkness of the small observation room, my friend and I wa tch the testing session, neuroanatomy books in hand, trying to diagnose the type of aphasia the young man possibly had. “He may have Broca’s” I suggest. “His speech is non-fluent, hesitant, but his auditory comprehension seems to be within normal limits.” “How about his repetition” she inquires. “I think he can repeat pretty well. Wouldn’t he be transcortical motor?” Ironically, as we carry out our theoretic al discussion, the yo ung man’s struggle to reach the correct articulatory postures for speech production passes largely unnoticed to us. His apraxia of speech, clear to the eyes and ears of an ex perienced clinician, flies right over our heads without ever triggering our radars.

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218 After we leave the observation booth, I f eel shaken. “He’s so young…” I think to myself, “I wonder when he had his stroke and how it happened.” As the semesters build up on each other and I become more familiar with the environment of the clinic, I hear bits a nd pieces of Tom’s story. “He was in the golf course when he had his stroke.” One clinician tells me. “I think he was thirty-nine when it happened. He didn’t go to the hospital right away, I think it took hours until one of his friends noticed something was wrong…” A few days later, while working at one of the computer stations in the student workroom, I inadvertently eavesdrop on a c onversation between two student clinicians. Perking my ears, discretely, I hear from behind the lockers, “He’s gotten married recently!” the firs t voice says. “Oh, good for them! Did they elope?” the second voice asks. “Yes,” says anothe r clinician, “I think that’s what he said in group! He brought pictures also!” The more news I heard, the more my curi osity grew. How did th e bits and pieces of Tom’s story come together ? At home, silently worki ng on my study notes, I wonder about the story behind this man. Figure 26. Erika and Tom in Las Vegas on their wedding day.

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219 First Client Assignments Spring semester, 2004. Sitting in room 2036, all first year clinicians wait anxiously for their client assignments. As Miz Paul, the clinical supe rvisor, hands out the last assignment she says with a huge smile, “This is my baby! Take good care of him!” Slightly shaken up and amused, Me rete, a fellow clinician, says, “This is such a gr eat responsibility!” “Yes, it is!” Miz Paul rep lies. “He is the youngest member of our group, and he’s improved a lot since he started! So you be good to him!” As you may have already guessed, the baby was Tom. *** As with Larry, I never worked with Tom directly in individual therapy, but we interacted frequently during group. All clinicia ns would frequently tease him because he blushed intensely every time he talked about his wife, Erika. “I looooooove Erika!” he w ould always say, with a huge smile, as we asked for more details about this wonderful woman he so truly adored. A few weeks into the semester a new pe rson joined our group. She looked very young, almost like a teenager, a nd at first I remember thin king she was a new clinician observing one of our group sessions. We la ter found that not to be the case. “Hello everybody,” Miz Paul said, addr essing the group. “I’d like you to meet Mary. She’ll be joining us for group today and maybe for the remainder of the semester.” As it turned out, Mary had had a very r ecent stroke and was going through a turbulent transition in her life. She could communicat e effectively, but reading was difficult at

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220 times. During groups, all clinicians noticed she usually turned to Tom for help and frequently buddied up with hi m during activities. Tom was al ways very glad and willing to help. One day, as we all gathered in front of room 2036 to start our group session, we notice a short and trim brunette standing close to the door. I remember my attention was caught immediately by her eyes, large and green and her wide and generous smile. A few minutes later, Tom approaches her, and passe s his arm lovingly around her waist. “Is this Erika?” I wonder. As we all enter the room and find our seats, Tom stands up and addresses the whole group. “Hello, everybody. I… I… want you all to… meet my… wife, Erika. We got … married, Las Vegas, and I love her!!” The whole group hoorayed and clapped, and the blushing couple sat down, close to each ot her. Mary, who was present, never said a word and group activities progressed routinely. As the clinicians left the room and got together for lunch, we could not help but comment “was he, ever so subtly, letting Mary know exactly where they stood as friends?” We never asked Tom directly if that was his intention, but that, to me, was just the introduction to his and Erika’s story of friendship, love, and hope. Girlfriend and Boyfriend First No… Well, friends first… then girlfriend and boyfriend… and then, hmm… six… well… three months and I had a stroke… but… hmm… No… three

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221 months… because boyfriend and girlfriend three months ago, three months and then I had a stroke, so… But we had known each other about… 1 year and a half… Oh, yeah! Friends… hmm… ap… apartment… I… Erika and I… We were neighbors… Neighbors! Yes!! Yeah! And then hmm… hmm… always… Ta, ka… talking to… you and… and me… and… Because he took me out in the pool when I was in a little bikini, that’s why! [Laughs] [Laughs] But hmm… you know… always… ah… always… friends… you know? And then… you know… ask her out… and hmm… Hmm… well, he kissed me… [Laughs]… And that did it… yeah, we were just really good friends first, and just kinda… evolved from there… yeah, but yeah, he leaned over one day and kissed me… That’s what did

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222 it… Caught me off guard, yeah… it did… Speaking Out! Convention Hi, my name is Tom Boyle. I had a stroke September 15, 2000. I was thirty-nine at the time. I have aphasia and apraxia and right side weakness. Tom’s speech at the Speaking Out! Convention, 2004 Good afternoon everyone, my name is Erika Boyle, and I’d like to talk to you today for a few minutes about what to do when medical insurance overage runs out and stops paying for speech, physical & occupational therapies. My husband, Tom, had a stroke almost 4 years ago. It was totally devastating and it complete ly changed our lives. His stroke was something we never thought could happen to us, especially since he was only thirty-nine years ol d. I didn’t know anyth ing about stroke, and I certainly had never even heard of the words APHASIA or APRAXIA. But I soon learned all about it. Erika’s speech at the Sp eaking Out! Convention, 2004 Hyatt Hotel, Tampa, Florida, 2004. On the opening day of the convention, camera in hand, I run into several members of the USF Aphasia Group. Among them are Tom and Erika. “Can I take a picture of you two?” I ask. They oblige, and I step back, getting ready to hear the quick snap of the digital camera.

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223 As we talk and discuss the sessions we were planning to attend on the following days, I notice how meaningful this convention must be for both of them. They were not only attending Speaking Out! as consumers, but also as presenters along with Larry and Curt, all active participants in the USF and Sarasota aphasia groups. Flipping through the convention brochure, I double check the date of their presentation. After following part of their stor ies as a student clinician, this presentation was something I definitely could not miss. Figure 27. Erika and Tom at the Speaking Out! convention, 2004. *** June 5 2004. Getting the tripod and camera mounted with my crude cinematographic skills, I sit down in the corn er of the room and focus my lenses on Miz Paul and Bob as they introduce the memb ers of the panel: Sharon Smith-Campbell,

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224 speech and language pathologist at Sarasota Memorial Hospital; Tom, Larry and Curt, stroke survivors; and Erika, caregiver and co-survivor. Of the three presenting Musketeers, Tom is the first one to speak. After stating the date of his stroke and its sequelae, Tom says, with strong emphasis and beautiful inflection, “I have a wife Erika and I love her…” Reassured by her smile, he carries on. “A… a… a… at the time of my stroke, I was… working at Culligan Water… as a sales manager. After my stroke… I was in re hab for… six weeks. When I left… rehab, I was in a wheelchair and I… couldn’t speak… or write or read… I worked hard with speech therapists and did… speech homewo rk… every day. I… practiced speaking, reading and writing all the tim e. I will… w… w… no, no…” Overwhelmed with the flow of his word s, Tom stops mid-sentence, raises his hand in self-command and states the mantra of the Four Musketeers with a deep breath, “Wait a minute! Slow down …” The room fills up with laughter and empathetic nods, and Tom continues, “It was… very hard to do, and I was s cared… and was feeli ng all a-aalone. I have been going to the University of S outh Florida… Speech Therapy… Clinic for 2 years… now… and it has… Slow down…” he says quickly and continues, “… it… has… helped me very much. Cher yl Paul runs the clinic and she is a wonderful person who is decat…. ded…dedicated to helping us speak again.” As I turn the lens of the camera towards the audience, I notice Miz Paul in the very back of the room, hands held tightly to her mout h, glowing in absolute happiness.

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225 “I… am… glad to be alive.” Tom conclude s. “I love my family and friends and I have faith in God. I… will… get… a jo b someday real soon… and… I… will… get better, slow but sure. I will speak fluently again.” After a wave of applause from the a udience, Larry proceeds to his speech, followed by Curt. As each of the Musketeers finishes their speech, they compliment each other in support. Finally, after a panel discussion about the benefits of group therapy, Erika stands up and delivers a striking and honest account of her and Tom’s journey since the onset of his stroke. She stands up, microphone in hand, and addresses the audience in a soft but firm Boston accent, which slowly accelerates. Tom, with an amused smirk playing on his lips, nudges Larry who smiles a nd whispers something to Curt who gently taps Erika on her back. As she turns around to listen to what they were trying to tell her, the three presenting Musketeers, joined in a chorus, rec ite their mantra in unison, to the absolute delight of all present: “Slow down!” Figure 28. Erika and Tom after delivering their speech.

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226 *** Approximately one month after Speaking Out!, I call Tom and Erika hoping they would be interested in participating in the project. “Sure!” Tom replies on th e other end of the line, “but… Erika not home now…” “No problem!” I tell him, “how about if I call you both a bit later tonight? That way you can decide together.” “Ok!” Tom agrees, “c-call… after si x, Erika… usually home after six.” “All right! I’ll call you g uys later tonight!” A little later in the evening, I am able to catch both Tom and Erika at home. After explaining the project briefly over the phone, we schedule our first meeting for the end of the month. Chuckling good heartedly at my profuse gratitude, Erika says, “Sure, we’d love to participate! We’ll see you on the 22nd a bit after six!” *** The Man She Fell in Love with Before the stroke? Tom was a hard-worker, very very hard-worker… talkative… Totally… talked to anyone… you could never get him to shut up… He was a salesman! Your typical salesman! Very very talkati ve, hmm… Outgoing, laughing all the time… hmm… a lot of friends, he was very soci al, hmm… hmm… caring… hmm…. and hmm… romantic… very romantic! Mayb e a little less patient than he is now… Yeah, but not… not much… not like me… I was usually impatient, but… yeah…yeah… hmm… less so, since I’m a caregiver… ***

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227 July 22nd, 2004. I find Tom and Erika’s house in a quiet and cozy neighborhood in Sarasota, on a warm and humid summer day. Greeting me at the door, Tom asks, “How… how was the drive?” “Not bad!” I tell him. “When there is no rain on the road I’m usually fine!” He laughs as I tell him my a dventures on the rainy road, tr ying to locate Larry and Susan’s house. Erika joins us shor tly and we exchange our hellos. “Would you like something to drink?” she asks. “No, thanks!” I reply. Sitting around the kitchen table, info rmed consents in hand, we go over the specific details of the project. “So this is for your thesis?” Erika asks. “Yes,” I answer. “What is it on again?” I explain briefly the purpose and the me thodology of the project and the rationale behind the interviews. Nodding as she fo llows my explanation, Erika confirms, “So you’re looking to see what the person wi ll become after they have aphasia?” “Basically, yes…” I respond. I feel puzzled about how apologetic I sound about the project and its methodology. “Why am I feeli ng this way?” I think to myself. “Maybe I am afraid they won’t trust me because the methodology seems so much more subjective and introspective than a quantitat ive project? Would I feel bett er about this if I could tell them I had a specific hypothesis to test?” “Part of the challenge of a qualitative project,” I venture, “Is not knowing, right from the start, what you will find. I may have some hypotheses, but my main goal is to

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228 listen to what you Tom, as a survivor, and you Er ika, as a caregiver a nd co-survivor, have to say, without trying to fit your answers into my categories. After what you discussed at Speaking Out!, and the changes that affected your whole syst em as a family, I want to listen to your story, your experience. I’ve never done a project like this before, so this is new for me also.” I say, being as straightforward as possible. Nodding in agreement, Erika replies, “You know, that would be great… b ecause… everyone is so focused on recovering, which is of course a big thi ng to focus on… But no one has focused on, now you need to adjust to this… your life… the way it is now…” I sigh in relief and contentment as the purpos e of the project is validated by them. With a smile on her face, Erika looks at me and asks, “Ok….So, what would you like to know?” *** Almost a year later, when I show Tom a nd Erika the first draft of this chapter, Erika asks, “Go back a little. Where was that part where you talked about the hypothesis testing? What did you mean by that?” “Well,” I explain, “when I told some peopl e in the department about this project, some of them reacted by saying, ‘Well, that’s not really scientific, is it? How can you do the stats on that?” I remember feeling very self-conscious about it for a long time, even though deep down I knew there was a need for this kind of research in our field. There is some qualitative research being done in speech pathology nowadays, but most of it is being done abroad, in the U.K. for instance. Here in the U.S. there isn’t much support.”

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229 After a brief pause I ask them, “How did you guys perceive it? What was going through your minds when I invited you to participate in the study? Did you feel the same say?” I ask, curious to know what their perception of the process had been. “When you talk about it,” Tom replies, “I think, ‘Hey, great!!’ I l-love to help people, so… Good opportunity, you know?” “I think so, too,” says Erika. “Emotional, you know?” Tom adds. “Str oke, aphasia, very emotional!” Hospital Experience What do I remember from his first days at the hospital? Wake up, in the hospital Sarasota… It’s odd… Everything! Down to the food… The ICU doctor said: he could die; he could be a vegetable; or he could come out of it…” Oh, man… foot… Leg and foot… oh man… Hurts, hurts, hurts!! I… couldn’t move it, and Then the ICU nurses said, “You need a cardio and a neuro consult. Don’t tell the doctors we told you: Just say that’s what you want” They were great! His mom came, and his brother He knew who they were, but he couldn’t say anything I couldn’t speak… Ah… ah… ah… ah… Nothing! Speaking is is the worst!! I remember everything… He was trying to say that the left side hurt and he wanted some aspirin…

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230 I didn’t know… I remember everything… I had a… an… ah… Aphasia So… can’t… can’t speak!! “What? What now? What now?” I know he doesn’t… Eight days later, when Tom was getting wheeled out of ICU, that same doctor gave him a pat on the back. Ten days go by… He said, ‘Hey buddy! I knew you were gonna make it; I knew you’d pull through!’ Whatever… Then… rehab… hmmm… Six weeks in rehab… Rehab “How was rehab?” I ask. “How long is your videotape, Linie?” Erika replies and we all laugh. “No, seriously,” she comments, “Rehab was the wors t experience… On our first day there, the psychologist on staff pulled me out and sa id, ‘You know, Tom will never be the same again… He’ll never be a salesman again.’” Reading the lines in my frown, Erika continues, “If you think this is bad, sit tight: that was just the beginning.” Taking a sip of water, she pauses briefly and continues,

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231 “In OT they taught him how to put a shir t on with one hand and that was about it. I said, ‘Well, can you do something about his shoes? You know, tying his shoes?’ You know what they said? ‘Oh, that’s so mething you want him to learn?’ “He would be stuck in the bathroom fo r half an hour sometimes; the light on outside, and nobody would come to get him out They only showered him twice a week, so I went everyday after work, and I stuck him in the shower myself, and it turns out that we both took a shower” Erika sa ys as they both laugh. “Saturdays and Sundays their idea of PT was to get everyone in a big huge gym, for 15 minutes. They got 4 people at a tim e, so it was an hour… but they were only working with each person for 15 minutes… In fa ct, his roommate… Mr. Jones?” “Yeah, Mr. Jones!” Tom confirms, nodding. “A little old man… Every time I saw hi m, he would be embedded in a wheelchair… One of the Sundays we were at … PT in the gym… I said, ‘Ok, Mr. Jones, it’s time for you to get…’ he jumped up from hi s chair, and he walked, able-bodied, right around that gym! I pulled the PT aside and sa id, ‘Why the hell is he in the wheelchair?’ and she said ‘Well, what if he’s gonna fall?’ and I said, ‘Well, then teach him not to!!’” Getting a breath of air, Erika goes on, “There was one poor guy in a wheelchair onc e, and he… he was really out of it, but… his, you know, his butt was hanging all over out of the wheelchai r, and he was like this, in front of the nursing station, and the nurses were just walking by him… I mean, he was almost falling, he looked very uncom fortable, and Tom was trying to get somebody…”

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232 “I… I… s… said that… ‘Nurse!!’ You know?” Tom adds and comments, “Well… I didn’t say it, but…” “Well, you went from room to room, in your wheelchair,” Erika explains, “…trying to get a nurse, and another nurse, who was like, your size, Linie, she was real small, she was trying to pu ll this guy up and she went, ‘I need another nurse, I need another nurse!!!’ and I was thinking to myself ‘Yeah, how does it feel to lift a man all on your own?’” Erika sighs, “I think the nurses in rehab we re… probably understaffed and overworked… and you know, a lot of the ol d people there were moaning and crying and… after a while I think they just get aggravated by it… Maybe they just don’t listen anymore…” *** Can I tell that story about when you were in the nursing station? Yeah… Ok… I went in every day after work, all right… I stayed in until about ten, I’d go out, and I was there all day Saturday and all day Sunday… One day after work I came in, and Tom was sitting in his wheelchair, right in front of the nursing station… They’re kind of like, all parked in there before dinner, so that the nurses can sit down on their butts and and and just… almost like they’re inma tes instead of patients, so they would not get unruly and stuff li ke that… Tom is there, and he’s crying… he had to go to the bathr oom, and no one took him to the bathroom… so… he… peed his pants, you know?

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233 Yeah… And he sat in it, for… like… an hour!! And… I… flipped out, I totally flipped out!!! I, I… I mean… I just… I flipped out!! They bent over backwards to kiss my butt every time after that, I went in there, and I called the CEO, I had, I mean… It was just unbelievable… I said, ‘This is a thirty-nine year old man, sitting in his own urine, there’s absolutely no need for this!’ and they’re all… right in front of the nursing station, and you couldn’t not understand what he needed… I mean, it was impossible to not understand… y ou know? So… that… (sighs) was really really bad… (I can hear Erika banging on the table with her hand as she retells the story, indigna ntly) But he’s potty trained now, so… Laughs! Laughs!! Thank God!! Thank God!! *** “How was the rehabilitation team, t hough?” I ask, “Couldn’t you guys discuss some of your concerns with the doctors and the other professionals during rounds or staff meetings?” “Well,” Erika sighs, “We were supposed to have weekly team meetings with all the therapists, and the physiatrist, and me, and Tom… and they had one … and after I was complaining non-stop they didn’t have anothe r one…” Erika sighs in disappointment and concludes,

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234 “They’re all into money, and stuff like that… He was in there for so long, and I just… I just thought there would be more that they would do, and they didn’t, and it was just… a waste… At the time, thank God, he had insurance that paid for all, but, we got the bill and I forget, it was lik e fifty or one hundred thousa nd dollars for the six weeks, and I’m just sitting there, going… it’s suc h… it’s a… waste… I was not gonna make… I felt so strongly about it that I wanted to tell the insurance co mpany ‘Don’t pay them because they didn’t do jack…’ But then I t hought, ‘I can’t get stuck with this bill…’ You know? So… it was bad… And when they released him, the social worker threw us into society… she didn’t give us any clues, like ‘Hey, this is wh at you have to do at home, these are organizations to… contact…’ or a ny help with insurance, nothing… I mean… it was… just awful…” Home Sweet Home After Tom’s stroke and his release from rehab, we were both just kind of “thrown out into the world” not knowing what to do or how to handle and adjust to our new life. There was no social worker to point us in the right direction or give us any kind of help ful information. So please learn from our experience. Be creative, look in the yellow pages and on the internet. Talk to people. There are a lot of resources out there and many people who are willing to help. Y ou just have to look for them and be persistent in your search. Erika’s speech at the Sp eaking Out! Convention, 2004. “So once you were out of rehab what did you guys do?” I ask.

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235 “A lot of … phone calls!” Tom explains “A lot of phone calls… Erika… phone call all the time hm… because hmm… I… can’t speak… so… hmm… it’s… all the time… you are… Erika… you… sh-shhhsh owed me… to… speak… all… all all… all… Oh… Wait a minute…” Tom says, slowing down, “all… all over again… you know? Learning it all over, basically…” “Yeah, that’s pretty much what we did,” Erika confirms. “For instance, he was released from rehab on a Wednesday, and that night he fell out of the bed a few times because he was having some really bad spasms… As we were struggling through the night I was thinking to myself, ‘Why wouldn’ t they release patients on a Friday, so we would have the weekend to get more accl imated?’… but… obviously that wasn’t our decision to make.” “Get them in, get them out” I thought to myself, picturing a hospital ward blending impeccably with the image of a conveyor belt. Time is money… “But that wasn’t all… “Erika continue s. “I think starting the following day Tom was going back to the hospital for an outpatient day program from 9 am to three pm, or something like that. Now, I work, you know… 8 am to five pm, but they just threw me out there… So I needed to find someone, lik e a babysitter, you know, from 7:30 to 9, and then from three to five! It was like havi ng a child! They didn’t gi ve me any help or anything like that! All they told me was ‘He can’t be left alone, so make arrangements.’ Now, here’s the icing on the cake: at the time, our apartment was on the second floor and the guy from the rehab van, who would come and pick him up, came to me and said ‘Ma’am, we can’t pick him up unless he’s on th e first floor.’ So guess what? We had to

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236 move! In 10 days, I packed us up, found another apartment in the same complex on the first floor, and moved us befo re he got out of rehab!” Looking at the tiny, delicate woman sitting in front of me, I could hardly believe my ears. “You did what ?” I ask her. “Yeah…” she chuckles. “I think I was still running on adrenaline… you know? Like a friend of mine descri bed, a woman, during a crisis, will stay focused and get through it, and then… fall apart when it’s over … You know? So I guess that’s sort of what happened.” Falling Through the Insurance Cracks As a caregiver, I had new duties. None of which I was prepared for. Soon after Tom left rehab, his medical insurance stopped covering his speech, physical & occupational therapi es. I was stunned. I thought that whatever kind of treatment you needed, it would always be covered by your medical insurance. I was wrong. Erika’s speech at the Sp eaking Out! Convention, 2004. “So where was I?” Erika asks. “Oh, outpatient therapy. Well, that didn’t last very long. They kicked him out wit hout giving me a warning. They said, ‘OK, today is your last day because your insurance ran out…’ So here I was, basically with no direction, scrambling for resources… I was just shocke d. I thought, just like I said in my speech, that as long as you needed therapy your insura nce paid for it… so that’s when we started making phone calls and trying to find therapists, and organiza tions, and stuff like that…” As I revisit Erika’s speech once more, I find the details of their therapy saga.

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237 “I … had to find a private speech therapist, physical therapist and occupational therapist and pay these e xpenses by ourselves. Tom was not going to be eligible for Medicare until more than 2 years after the date of his disability. We were not married at the time so I couldn’t add him to my health insurance policy I had through work. After we were married I couldn’t add him to my policy because he was considered to have a preexisting condition, and again was deemed ineligible for coverage. I found that the cost for these therapie s, if you don’t have health insurance coverage, is very high. As I shopp ed around for new therapists, I told Tom’s story to each of them, explaining that this was taking a huge financial toll on us and that we simply couldn’t afford these therapies that he needed so desperately; especially since he was still making such good progress. We got very lucky. His physical therapists gave him one-hour sessions but only charged him for a half hour. His occ upational therapist charged him a reduced rate and his speech therapist gave him a discount with three sessions a week. During this time I had appealed th e insurance company’s decision to terminate his coverage for speech, phys ical & occupational therapies. The process took a long time, but we fina lly won one of the appeals, which paid us for one month’s worth of therap ies. We lost the other appeal.” (Erika’s speech at the Sp eaking Out! Convention, 2004) “It’s just wrong… It’s… it’s… it’s… it’s ridiculous!!” She says in contained outrage, fist on the table. “Now we learned that, through all insurances, they’re not going

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238 to start paying for PT, OT, and ST at this stage, you know, thes e many years post-onset… They say it’s… it’s… too far… you know? He has Medicaid now, which we’re thankful for because it pays for doctors, but it doesn ’t cover prescriptions… That’s where having private insurance would benefit us right now. “The other drawback is that I work for a small company and we couldn’t get conventional health insurance. So they pulled all of these small companies together and got one group rate. The not so good thing for us is that they have more stringent underwriting guidelines, which make it even more difficult for Tom to be eligible… I think maybe if I worked for like, a big company, who knows... “Did he have any insurance at the time of the stroke?” I ask. “Hmm hmm… He had insurance back th en, but it only covered 60 days, 60 consecutive days! I fought it fought it… oh, I fought it! We actually got one… I… I… I… filed it twice, one time we were appr oved, we got some extra money towards therapy, and another time I filed it on a massage thera py benefit, which was great for his arm… but that got denied, so… stupid loophole, you know? “Insurance, man… I know…” Tom exclaims. “Yeah…” Erika sighs. “But, I don’t know … It wasn’t easy. You definitely couldn’t speak, remember? It was all ‘yes’ a nd ‘no.’ There was a lot of guessing games, when he was trying to say someth ing! It was like 20 questions!” Contacting the Source “So how was it exactly that you found out about the USF program?” I ask them.

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239 “Well, all of our therapists and trea tments that we did actually, we got information through networking…” Erika recoll ects. “A few months after his stroke I thought maybe we should learn to eat better, stuff like that, and maybe look into nutritional supplements, so we went to a nutritionist, who gave us a the contact information for Barbara Newborn…” “Wow! So you met Barbara Newborn before Speaking Out!?” I ask them. “Oh yeah! She was very very nice!” Erika exclaims. “And through Barbara Newborn we got Jackie Hinckley’s name at USF… So probably two years before Tom started in the USF program, or maybe a year and a half before, we saw Jackie. She was incredibly helpful! She gave him the Bost on test, evaluated him, and gave us some directions like ‘work on this, work on that…’ un til he could start in the clinic. So I kept in touch with her, every few months, e-mailing he r, calling her, because I wanted to get him in I had heard only great things about the Mich igan program with J ackie, but that was… I think it’s… about like, 20 thousand, 30 thous and dollars? I don’t know for sure, but it was really expensive… So… I t hought, well, this is right up the street, and she says it would hardly cost anything, so we just kind of kept in touch with her!” “I didn’t know that… hmm… B… B… Barbara Newborn… is… hmm… called… Jackie!” Tom exclaims surprised. “Yeah, oh yeah!” Erika nods, “Barba ra and Jackie are good friends!” “I… Speaking Out!, I… I, I… I… A… Asked her, Barbara Newborn… I… am getting better… all the time! And hmm… sh e said… man, perfect speech! I mean… I… I…. you know, I mean… the… you know, one y ear ago, nothing, not speaking…” Tom says.

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240 “She talked to you three y ears ago!” Erika recollects. “Oh, yeah! three years ago…!” “She’s a counselor, so we had a couple of phone sessions w ith her, when Tom was still in the very acute stage…” Erika explains. “It was basi cally me on one phone, and him on the other, and he’s just, you know, ‘yes’ or ‘no,’ and I did all the talking… and she did a lot of the talking… but she reme mbered him, when we went up to her at Speaking Out!!” “Yeah, yeah!! Yeah, you know?” Tom confirms. “Then, late r, Miz Paul. Oh, man! I love her! I love her very much, I mea n… USF, it’s a wonderful hmm… program, you know? I… I… I… USF is… I love it!” “He talks about the program all the time!” Erika chuckles. “I keep telling Cheryl: you have a walking-talking advertising for USF, that’s for sure! Actually, the other night he called a friend in NY to wish her a ha ppy birthday, and al l I heard was ‘USF, wonderful speech therapy, it’s working!!’ You know? USF has just been absolutely incredible… it’s just been amazing!! It’s just been, by far, the best speech therapy he has gotten, and, thank God” Erika says almost in a whisper “… it’s b een the cheapest too!! But, I mean, really, it has been the best …” From “Yes” and “No” to Community Outreach Remember when you couldn’t talk much at all? Yeah… Toughest time! Oh… That’s what I missed the most! Just

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241 talking… I didn’t care so much about not being able to ride on the motorcycle anymore, which sucked, but… If you had to lose anything, I would have rather the physical than the speech… Yeah… yeah… I know… I love to talk! Salesman, talking all the time! Losing the speech was just… devastating… That’s how we got together… We would just talk! We always talked! Aphasia… sometimes… it’s hard to do… because… thinking about it… and… saying about it… is… not… good… But… it’s… Getting better. One year… I… will… sp-speaking better… than before… Homework is helping me…A lot!! And… reading… newspaper… and hmm… golf… hmm… golf magazines, and the sports illustrated! So… it’s… it’s ta… it takes time… But hey, it’s working! You know? Hmm… it’s like… baby, really? I

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242 mean…Learning… all… all… I know! I know! And we’re in synch! Now I can finish some of your sentences… But there were so many times before that for the life of me I couldn’t understand… Oh, it… was… frustrating! And I would go, “OK, turn it around! Give me a hint, a clue, something!” But now we have our own language! Yeah! Yeah! *** As the afternoon becomes night in sunny Florida, I begin to understand why Tom’s eyes would always fill up with the ut most love and affection when he spoke of Erika in our aphasia group meetings at USF. This tiny but feisty and strong young woman was his advocate, his lover, his soul mate Noticing we had been talking for over two hours, we finish our first interview am ong laughter and jokes and say our goodbyes, scheduling our next meeting for the first week of August. Later that night, at home, I watch th e recording from the Speaking Out! Convention once more, fast forwarding it to Erika’s speech. I am moved, impressed, and inspired by her loving determination a nd resourcefulness to help Tom communicate again. Trying to imagine what it was like to live through her experien ce, I close my eyes and listen to her amplified voice as she spoke in that June afternoon at the Hyatt,

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243 “I sat in on most of Tom’s speech ther apy sessions. I learned as much as I could, so that we could continue working on our own. We would do his speech homework at night, on weekends and while driving in the car, just about every chance we got. I was wo rking full time and it was getting to the point where Tom was too tired at night to do his speech homework with me because he was so exhausted from all the therapy sessions that he had been doing during the day while I was at work. I knew I had to do something because he wasn’t able to do a lot of his speech homework by himself, and what he learned in speech therapy wasn’t be ing reinforced. I needed another ME to be there for him. So I thought that maybe I could find a volunteer to help him. I put up some flyers in the apartment complex where we were living and so meone in our aphasia support group had suggested we contact our church. I wrote a letter to the president of the Women’s Club at our church and expl ained the situation. I also called several charitable and volunteer orga nizations, including United Way, Salvation Army and the Jewish Family and Children’s Services. The response from these resources was ove rwhelming. We are fortunate to live in an area where there is a larg e population of retir ees and people who just have time on their hands and want to help others. You will find that there are also people in your areas of the country that have time to give and that want to help. We started in terviewing several of these volunteers. I explained to each what they would need to do to help Tom. They did not need to have a background in speech pathology or even any teaching

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244 experience. It was as easy as holding up flashcards, doing word repeats and helping Tom practice writing, spelli ng and simple math problems like, 1+1; 2+2, etc. What made it grea t for both Tom and myself was that everyone just loved him. They saw his motivation and determination and that made them want to work with him even more. In the beginning, Tom had three or 4 volunteers working with him over five times a week, an hour at each session. It was great b ecause it reinforced what he was learning in speech therapy, enabling him to advance further and improve at a much greater rate. We even got 2 more volunteers through word of mouth because these volunt eers just loved working with him so much. It was rewarding for them to be able to see his progress. It has been three years now and he is still working w ith 2 of the original volunteers, who are just wonderful people and have beco me good friends of ours.” (Erika’s speech at the Speaking Out! Convention, 2004) Discovering Acupuncture… and Wine August, 2004. I arrive at Tom and Erika’s house and they are ready for the second interview. “Erika… go first.” Tom volunteers as he sees me. “I’ll… go to the bedroom!” We had agreed that he and Erika would be in terviewed separately on this meeting, but I am slightly surprised by Tom’s readiness to leave the room. Some of the other survivors I had interviewed had tended to linger around adjacent rooms during caregiver interviews, following our conversation vicariously as doors were left accidentally open...

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245 Focusing back on the task at hand, Erika and I get settled around the kitchen table, recorder, camera, and all. When we are all set, I ask Erika, “Since we’re interviewing you two separa tely today, I was thinking… I would just like to hear a bit more about you and your experience as a caregiver. What were things like to you? What was going through your mind?” “Well,” Erika smiles, taking a deep breath, “It was hard… I mean… I don’t even know how we did it. I… I… I started getting grey hairs, I didn’t sleep for six months… hmm… I lost weight… You know… stress took a lot of… hmm… ef fects in my body… I had pains in weird places I never got pain… I’m thirty-five… at the time I was… thirtytwo… and… when I saw the grey hairs coming in and I was like AHHHH! No, no!!!” We both explode in laught er and Erika continues, “Because I couldn’t sleep for like six months, the doctor put me on a sleeping pill… But then I was just so groggy in th e morning, I felt like I was… hung over… you know? So… Tom went into acupuncture, all this time… which was part of this nonwestern medical therapy, so… I started going, too. After a few treatments…I was clean, sober: I got off sleeping pills… And I was able to sleep !! I was able to sleep!” she sighs and chuckles. “I think I mentioned before that all of us clinicians, during aphasia group, were always amazed by everything he told us about you! We were always saying, ‘Wow! Who is this wonder woman!’” “Oh, God!” Erika exclaims, blushing intens ely. “I guess… right after his stroke… he thought that I was gonna leave him… And of course that was never even a thought! But I don’t think that lasted too long, you know? As a couple it’s definitely made us

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246 stronger… It’s given me grey hairs, and… It does funny thin gs to your body, pains here and there, and not sleeping, and…” “It made you discover acupunc ture, I guess…” I comment. “Yeah…” Erika confirms, “…and wine…” she adds as we both laugh. Faith – The Family Heirloom Italian, Catholic family… I went to Ca tholic school… Actually, I think he did too… I don’t think he went to Catholic high school… I went to two years of Catholic high school and I said, that’s it, I had to get out … I went to a public school… But, I mean, we’re you know… always were… you know? The other night, after the aphasia group m eeting, we went to Boston Market and we were talking to Curt and Bob and Diane, and, you know… Diane was really angry at God after Bob had the stroke… she even told the priest ‘I’m so angry at God’ which is a total natural reaction… But Curt he says he ’s a scientist, so he doesn’t… He believes there’s some thing, out there, but he’s not sure… because scientists have to prove, or whatever… But… I… couldn’t imagine… The second we got out of the hospital, and I noticed something was wrong, I said, ‘Oh, God, please,’ and started to pray right away… I just… I couldn’t imagine going th rough this without…having faith… I remember the stroke happened on a Friday and… my mom is a really special person, my grandmother is too… I’m really close with both of them… so it happened on a Friday, and I didn’t call them… I called them only on Saturday night… I just didn’t call, I couldn’t think straight… So I called and I told them what happened… At that point we still thought he was gonna die, or be a vegetabl e, we just didn’t know… so… my mother

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247 got on the line, and…they… they prayed with me… and she told me how to pray, and what to ask God for… and she says, ‘Be strong, have faith,’ and all that… So… that night… over night, into the mo rning, I just knew he was gonna make it… I just knew he wasn’t gonna die and he wasn’t gonna be a vegetable and that… I was still upset, but… it just… just lifted, someth ing was lifted off me, so… I attribute that to me calling mom, and her saying OK, this is what you need to pray for; this is what you need to say to God… Equal Rights Thinking about what I had learned from their story together, I ask Erika, “I know you mentioned that leaving wa s not ever a thought in your mind… But how was it for you, in terms of … you were just starting a re lationship and this whirlwind catches the both of you, so… Wh at was going through your mind?” Chuckling, Erika says, “Well… you know… I was like a mother fo r quite awhile… and I didn’t really like that…” she smiles. “I don’ t know if I told you, but… I wa s married once before I met Tom… and… my husband worked a lot and he ju st didn’t… he wasn’t real domesticated, he didn’t… worry about bills and things like that… so wh en I met Tom, he… balanced his own checkbook, he did his own laundry, all th at stuff…” she says as we both laugh. “So… I was like, thank ‘God, it’s gonna be, equal!’ And then all of this happened. But… Tom is just so gr eat, you know, he wants to do everything … I mean… He wants to do laundry, and I’m trying to teach him how to cook… he didn’t cook before… but… a lot of stuff in the kitchen with one hand is very very hard! Bob has a cutting board that

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248 he’s shown us, and I’ve gone online… and Bob showed Tom how to open a bottle of wine one-handed! But some other th ings like can openers, are harder… “What else? He writes all the checks, I get it ready for him, and he writes them out… he hasn’t come close to balanci ng a checkbook yet, but… it wasn’t good before, so…” Among giggles and laughter she continues, “When his Mom was here two weeks ago, I didn’t have time to go buy special foods and go to Publix, so… I was up in Tamp a on Friday after work, so I asked him to go to Publix, I gave him a list and… he’s gone to pick up a few th ings on his own, but it’s… every time it’s been with me, so I gave him this big long list and I’m like, ‘Are you sure?’ and he was like, ‘Yeah, yeah, yeah!’ So… he’s so funny!” she says, with the most endearing tone in her voice, “He called me, on my cell, probably five tim es! He’s like, hmm ‘Ok, lettuce, what kind… this or this?’ And I said ‘oh, doesn’t matter get that’… then a few minutes later, ‘OK… hamburger, chuck or gr ound sirloin…?’ and ‘cheese, ch eddar or Colby?’ It was so cute, you know?” Nodding as I notice the sweetness in her voice, she continues, “He cuts the grass… he has a friend that comes over th at helps him pull the crank, to start the lawn mower… we haven’t fi gured out how to do that yet… you know, he loves the garage, he has his go lf stuff in the garage… He ta kes care of the plants, and everything… So he is definite ly, I mean… Oh, and we were on line last night to order his golf club for his birthday, and I’m just… I m ean, I’m at the computer 8 hours a day, so I was like, du, du, du, du, du… and he’s like, ‘O k, I wanna learn…’ and I’m like, ‘Ok!’ I

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249 mean, everything he wants to learn, everythi ng… And, you know, I tell him, I want you to be, not trained, but I want you to… know the stuff because you should, you know?” Old Friends, New Friends “How about the friends you had together be fore the stroke?” I ask Erika. “Do you still keep in touch?” “Well,” she ponders, “We lost a bunch of friends… They just kind of…” “Dwindled?” I ask. “Well, yeah, but not right away…” she sa ys. “In the beginning they were always at the hospital, and then… They just kind of backed off…” Thinking for a while, Erika continues, “I think… They’re scared that it’s going to happen to them, you know? Or, now that the acute stage is over, th ey may think, ‘Well, it’s not really going away,’ so they don’t know how to act around him… But we have some friends that stop by to do a little thing… and we’ve made new friends also.” “That’s true,” I agree, thinking of the other Three Musketeers. “It’s gonna be 4 years since his stro ke, next month, you know? So… Now we’re starting to make new friends… but that was hard… Not so much for him being afraid, but, as a couple you meet more couples, so sh e and I start off talking, and how is the other guy gonna talk to To m? So that was… that was hard, hmm… but we never stopped going out, we’ve always gone out to restaurants, and hmm… Sea World, and Universal, and shopping, you know, Publix all the time, a ll around Sarasota, Barnes and Noble, all that stuff… hmm… and he’s close with hi s family too… So hmm… I don’t think he’s

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250 ever shied away from a… a social situation, you know? I think the gr oup has helped him a lot with that…In terms of getting the se lf-confidence again to… just go up to people and talk and… that’s one of the constants that all three of them said in their speech at the convention…” A True Floridian Ventures Out As Erika and I conclude her interview, she says, “Hang on a minute, I’ll go call Tom.” She qui ckly disappears into the house and I hear her knocking on the bedroom door saying, “Your turn!” Laughing, Tom comes out and has a seat around the kitchen table. “All right, Mr. Tom!” I tell him. “All r-right!” Tom says. “H-here we go!” *** I was born in St. Petersburg, Florida… Three… hmm… thre e… hmm… brothers… I, yoyoungest Growing up in Florida, I loved it! Oh, yeah! I… loved it… No weather… hmmm no… hmm… snow!!

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251 Then, I, 19 years old No… no… 20! Yeah, 20! NY One month DDennis… my brother… and me Wonderful!! I… I… I loved it! NY City – Man! Oh, man! Buildings and everything… It’s… nice! You know? Nice but… But… dirty, I mean… Sometimes… Oh man… Oh, oh… boy… Crazy city! NY city is a wonderful place, But… no… didn’t… Didn’t… lik… like it to live! You know? Too fast! Then … I… I… go… Chicago Lots of snow! Really cold!!

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252 I was, hmm… hmm… ho… H… Hyatt first… Aunt… lives… in Chicago, so… I… I… went to Chicago… and… shhhheee…. Worked at Hyatt. I was… 20… 22 years old. So… I worked 7 years… at the Hyatt… Wonderful, you know? Drivers first… and then… bell boy… I loved it! Yeah! But hmm… Six… Seven years… and… I loved it, money (Hyatt, Chicago? Oh yeah!) But… you know… Not going anywhere… So… I decide Time for change. The Birth of a Salesman Sitting at the kitchen table I ha ve a sudden moment of illumination, “Wait a minute,” I say, looking at the big Culligan water gallon on their tall water fountain, “That’s where you worked after the Hyatt, wasn’t it? Culligan Water? You mentioned it to us in group!” Laughing, Tom confirms, “Yes! Culligan water!”

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253 “How did you start there?” I ask him. *** Main office Chicago So… I find Culligan in newspaper I… wro… rea… read the newspaper, and… Culligan? I will call Culligan! So hmm… I called Culligan, and… interview… and… And got the job! But… seven da… seven da… seven dollars! But! Pretty good, I mean, I… promotion! So…. Yeah! And then… Sales… hmm… I… wa s in the sales manager… Chicago first… And then… I woke… I said I… I… I don’t know… Florida… I want to… get… a job at… Florida… Tampa… Cullligan water! So… hmm… two… three, thre e… months… three months, And then… I… got a job… I got… Transferred! Three years… Chicago… hmm… Culligan… Then… I want… went to the… hmm… Florida, Tampa Salesman job – Oh, perfect! Talking all the time!

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254 I love… talking all the time…Perfect!!! Seven years… ah… Florida… Culligan water, sales manager Always talking… Paradise! Cell phone, and pagers, and all… oh, yeah! six am… to… si… six pm! twelve hours a day!! You know? But hey! And then hmm… I h… Hmm… hmm… Well, three years ago and 8 months I had a stroke, so… no talking… But… hmm… s… I love to speak… I mean… It’s my… my… passion! To speak, fluently!! Someday… and hmm… I… will… I will get better Slowly but surely!! Becoming a Father “And, you know, baby, too…” “You’re a father?” I ask him. “Yes, oh yes!” Tom confirms. “My son, Ryan.” “But that was before you met Erika, right?”

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255 “Yeah, oh yeah…” Tom nods. “Before Er ika… When Ryan born, moved to Florida because hmm… Chicago, cold as hell! Not good for baby! So… I… hmm… hmm… Sunny weather! I… loved it! I m ean… and… but… hmm… hmm… ex-wife… is hmm… Problem… so… hmm… not good… Y ou know, drinking… So… always fighting… always fighting... so… divorce.” “How have things been since the stroke, though?” I ask, reluctantly. “Well… tough…” Tom replies quietly. Figure 29. Tom and Ryan a few years before Tom’s stroke. *** Ryan and his mother were living in a house in St. Pete that Tom’s father had left him… So, through their divorce, Tom had to pay for the house, he had a mortgage on it… They had a car, child support, and medical…

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256 Well, when Tom had his stroke Ryan wa s about eleven or twelve years old. Tom didn’t have any disability, social security hasn’t kicked in yet, and… Ryan’s mom and Tom were divorced before Tom and I even met, so I was not the cause of it… But… I don’t think she was happy to have me around… She… claimed… “Well, if I can’t have him, no one is gonna have him…” So… Ryan and I were good and friends, buddies and stuff like that, and the minute he told him we were a couple, befo re the stroke, she st arted saying things, and Ryan started to… not like me… During this time we were trying to find out doctors, and therapists, and insurance… Tom isn’t paying child support be cause he doesn’t have any income coming in… And then… custody issues came up th e line, and all of a sudden she started poisoning Ryan’s mind, and he doesn’t want to spend time here anymore… Instead of sitting down with the kid and saying, “Hey… l ook… your dad had a stroke, this is what’s happened,” you know, do some research on it a nd then explain it to him, but no… So… For about a year and half we had to get a lawyer, we had to fight her… and things were really… rough. He was… his fo cus should have just been totally on his rehab, but… But it wasn’t, it was very emotiona l with Ryan, very, ve ry, very emotional. So he was struggling with the two things at th e same time… And I was trying to just make him focus on… Getting better… So… We ended up selling the house in St. Pete, and Ryan and his mom moved to California. You know, she’s… kind of the ty pe of person that… only works enough hours to pay the bills… so she had no place to go and all this stuff… so… they’re living out there with her older son…

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257 Now it’s been… two and a half years and Tom has only seen Ryan once… We have a visitation schedule, but to enforce it we have to go back to lawyers… And that would mean more money… But at least now Tom and Ryan aren’t fighting anymore. So… even though they’re not physically seeing each other, at least there’s less tension… He definitely, his whole relations hip with his son has changed… And he was always a wonderful father. The worst part was… In the middle of all the turmoil, Tom couldn’t verbalize anything back to Ryan… Anything… and it was so… so frustrating… *** “One week… one… month… ago,” Tom sa ys, “I… I called Ryan… and hmm I… I… read… the… speech….” “From Speaking Out!?” I ask. “Yeah, Speaking Out!!” Tom confirms, en thusiastically. “It’s perfect! I mean… Ryan… Blown away!” “Congratulations!! I’m sure he was very proud!” I say. “Yeah…” “Do you feel things have changed a lo t between you two?” I ask, tentatively. Tom is silent for a moment and then answers, “Well… Ryan says that… No problem, but… It’s a problem… I mean… hmm… stroke is difficult… Mind works… Perfect, bu t… it’s the hmm… Ge tting it out! You know? So… I… live for… for… my stre ngth… and… I… God… I… said that… God provides… You know?” I nod in agreement and Tom continues,

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258 “I don’t know … some days… it’s hard to do because… I… I… sad… I’m sad… I am sad… for… for… me… you know? But… ten minutes, and… Moving right along, you know? So… One week… I said… hey… I… I am not perfect… and… we have… difficult… and… I… think that… I… will get better. I … I… have aphasia… and hmm apraxia… and… right side weakness… you know? So… So… live it up! I mean! You know? What… what… what are you going to do? It’s hmm… life…” With a smile on his face, Tom concludes his interview, “You know, Erika said that… so metimes it… is… tough… but… I am tough!! And Erika is tough, so… we… we… are… we are… together. That’s what matters… Sometimes I… this is… not… fair… but… God… provides. Three years ago, I had a wheelchair. Ah… ah… one month ago Erika and I was on the beach… and and then… I will… no cane… no cane? No cane. Ok, so… and then… man… I did it!! Always!! Yeah!! So, takes time, but it’s helping me! Foot is a problem, I mean, but hey… some… som… inverted… But… two years, man! C ouple more years!! I know! I am happy, all the time, you know… Yeah!” “I can see that!” I sa y as we both laugh! From Sales to Golfing As we conclude the separate intervie ws and Erika rejoins us, I ask Tom, “What would you like to see your self doing in the future?” “Well,” he says promptly, “I wan, wa n, go… I want to s… be… a teacher… A golf teacher!” “Really?” I asked.

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259 “Yes, yes! One hand, you know? Well, one m onth ago, I said that… hey… always like Sarasota or Tampa, or everythi ng… is hmm… one hand is a problem, so… learning… one hand… is… I mean… one hundred and forty yards, one hand, driver, and man, it’s better bef… it’s better than before! So… I… I… said, hmm… you know, learning to… one hand! Like hmm like… now two hands that’s putter, you know? But it’s helping to… learn the… the… ropes! Yeah! I mean hmm… I… I… t… I think… that… I l… I love to play golf… and… I love to… lo… loo… love to… learn, so… and then… one year and I… practice and practi ce and practice, and… walk… and homework too! No break from homework!” “Homework first,” Erika interjects. “But… people… all at home… all over the country, or Sarasota, or… Venice, or Tampa… Yeah, and you know… it’s great! I mean… you know? Like hmm… Sarasota hmmmm… Fire… Fire…. No… Foxfire Golf course… and hmm …. Learning and… hmm… but hmm, a lot of money! I mean, hmm… “There is another… there is another man that teaches adapted golf!” Erika mentions. “Yes! Yes! Adapted golf! And a lot of money! So, you know? Now, hmm, John, is a… a… survivor… at Tam… Tampa… Univ ersity of South Florida… Five… f… four years or five years, I don’t know, John… but a long time ago, two hands, not a problem. And then… he… had a stroke… and no golf… s o… I st… I sa… I t… I talked to him, and… two times I… I… got a… ah… got … him out… So, you know, some… some day… learn… I will … golf… teacher, or something like that… some day…”

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260 “And how is your golfing with Larry, Cu rt, and Bob?” I ask. “I heard you guys have your regular time together on Fridays.” “Yes!” Tom laughs. “The Four Mu sketeers! Oh, ma n, wonderful!” “Who’s winning now?” I ask, knowing they are pretty competitive about their golfing. “Well, Curt, you know, because Curt is hmm… Sa… Sundays and Saturdays… but… Fr… Fridays, Chuck, hmm h mm… George, playing golf too…” “Who are they? Are they other go lfers you guys have met?” I ask. “Yes!” says Tom. “George… is hmm h mm hmm… eighty-five years old! Yeah! And Chuck is forty-two… no… fort y-three! We’re same age… twenty years ago he had a stroke, though… He was twenty-three. H mmm… hmm… hmm… ca… carotid artery! Clogged up! He was working out! I… I mean, I… you know? But… hmm… he’s… he’s… hmm… he’s… OK… and… no no… problem speaking… No, no… long time ago yes, but… now… but now… I mean, no… no problem… with Chuck… I mean… He… he’s all right…You know?” I notice how enthusiastic Tom becomes as he talks and I try to imagine what he was like before, with all his pagers and cell phones in the world of sales. “He will be a great teacher!” I think to myself, watching Erik a’s hand resting lovingly on his. “Just give him some time!”

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261 Has Tom changed? How has he changed? Let’s see… I think he’s compassionate… more… sensitive to … say… if he hears something on the TV or radio, something bad that happened, he’s much more like,” oh…”. You know? He was li ke that before, but it ’s magnified now... What else... Stronger faith in God... now... hmm… very strong faith in God… I saw… strength emerge from him that I didn’t know was there, and I didn’t think he knew that was there… They say everything happens for a reason… I don’t know if that’s the reason, but… If you had told me this was gonna happe n, I don’t know that he would have been able to handle it…. plus, I didn’ t really know him… I knew him, but for one year and a half before, but we were only together as a couple for a few months… So… I didn’t know that side of him, but I didn’t think that he would have been this strong… I mean, now he’s just like… super strong! He has his moments, but his determ ination is just incredible… Hmm… he’s a little bit more patient… We ll, he laughed a lot be fore, too, but he finds humor in things… I mean, he was always like, “Mr. Life of th e Party” before. Now he doesn’t drink as much as he used to… not that drank a lot befo re, but I mean, like the whole… that whole…You know… he hasn’t cu t it out, or anything, but it’s not… you know… not like it was before. He was just a single guy before … Priorities have changed, too, you know? Li ke things that were important before, or that weren’t, you know, are now, and viceversa…I think for anyone that’s ill, or had something happen to them… priorities change. I would like to have him get total speech back, but… smiles… I guess I told you the thing that surprised me was… his stre ngth… Everything that happened brought us

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262 closer… I mean, even all the… crap with… his ex-wife, and the custody, and the battling with the son and all that, that’s behind us, and hmm… fighting insurance companies… That’s… that’s hard… A lot of these people who have had stro kes and have aphasia, they’re in their 50’s, 60’s, and 70’s, they already had a hous e, they already had grown kids… They’re either established, they were established or they were retired, had pensions, and we’re, OK, we’re just like in th e prime of life here! I don’t know if we would have been as committed and as strong as we are now… see, because we weren’t together that long… I know at the begi nning he depended on me, but… you know… he thinks I’m strong, and… I mean, I know he’s appreciative … How do I see him now that he has aphasia? Oh… He’s my sweetie! Figure 30. Erika and Tom during Christmas in 2004.

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263 Chapter 9. Survivor The Lonesome Cane I was first introduced to Curt during my second semester of graduate school. I was a student clinician back then and Curt was one of our client s in the aphasia group, along with Tom and Larry. Curt had some right hemiparesis at the time and walked with a cane, especially for longer distances. His relationship with his cane, however, was an interesting one. Instead of holding onto it as a source of security and gait stability at all times, Curt always made a point of leaving it against the wall outside the aphasia room, as if its presence were not allowed in his th erapy environment. Late r on, as I discovered more about Curt’s life history, I came to understand why his cane was purposefully meant to be left alone. *** The Four Musketeers have always had a cheerful and friendly disposition about them. Curt was no exception. I remember, when I first met him, he struck me as being a very bright and pleasant person. He was rese rved at first, but gradually became more sociable and lively as he familiarized himsel f with the new clinicians. Later in time, I discovered he had been a weight-lifting ch ampion on several occasions, and had three master’s degrees in different fields incl uding anthropology, ex ercise physiology, and counseling. However, the biggest surprise (at least from my perspec tive) came only a few months later.

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264 It was an early afternoon in the clinic, soon after lunch. For reasons I no longer recall, some group participants were discussi ng major turning points in their lifetimes. Several survivors mentioned thei r strokes; others mentioned a death in the family; some referred to their experiences in the Vietnam War. Curt, however, remarked, “I was an alcoholic, many years. Finally, fourteen years ago, I join AA – no more drinking. I start counseling other al coholics. It was rewarding job!” I was surprised. Curt had always seemed so centered and focused in group it was difficult for me to picture him with a six-pack of beer in each hand, struggling to keep his balance and mind straight. As the thought cros sed my mind, I felt a wave of guilt and embarrassment bring me back to my senses. “So much for not thinking in stereotypes…” I mused to myself, disappointed in my promptness to judge. It was only later in time that I came to realize, however, that Curt’s attitude toward alcohol was not so different from his attit ude toward his stroke. As the old saying claims, sometimes the wounded make the best healers. *** I had the opportunity to meet Christie, Cu rt’s wife, about one year later, during the Speaking Out! Convention in Tampa, Florida. Curt had told us about his soul mate in group on many occasions, and it was endearing to see them at Speaking Out! as they attended several of the presentations togeth er. From what he had mentioned before, I knew Christie was a nurse and they had three ch ildren together, but that was the extent of my knowledge at that point. *** Saturday, June 5, 2004 – Speaking Out! Convention.

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265 After Tom and Larry concluded their presen tations, it was Curt’s turn to deliver his speech. He approached the microphone qui etly, greeted the audience, and took his first step towards his new firmly set goal: to become a motivational speaker for stroke survivors and individuals with aphasia. *** “My name is Curt Mathes. On Ap ril 14, 1999, I had a stroke. I have … aphasia, which makes communicating diffi cult. My I.Q. is fine. My words are scrambled. I am going to tell you my experience of aphasia. I am not alone with my struggle. One million pe ople are affected with aphasia in the United States. As group members, you will be interested in my story. In the past I didn’t have any difficu lty. Shortly after my stroke, I had difficulty with any language. Curre ntly I am still working with my therapist towards my goal of speaking clearly and fluently. In the future I hope to motivate other stroke victims to improve the way I have, and group members as well.” (Introduction to Curt’s speech at the Speaking Out! Convention, 2004). *** One month later, I approach the telephone hesitantly, and try calling Curt and Christie to invite them to participate in the project. I had mentioned it to them during the convention, but with al l the emotional impact of Curt’s speech on himself and his family I assumed they would not remember. As we speak on the phone, however, they both promptly reply, “Sure! No problem! We’re in!”

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266 After thanking them profusely, much to their amusement, we schedule our first interview. Barking Announcement After a rainy and thundering drive from Tampa to Sarasota, I finally arrive at Curt and Christie’s house. As I get to the door, I am welcomed by Rufus, one of the many family pets, as he barks profusely, announcing my arrival. Trying to calm him down and introduce myself, I say, “Hey there buddy! I’m Lini, how are you?” To which his continued barking seemed to reply, “I have not made up my mind just yet. How about a better chance to sniff all those bags of yours and I’ll tell you in a minute?” A few seconds later, Curt and Christie co me out to the door and greet me, much to Rufus’ contentment. They invite me to take a seat at their kitchen table and we chitchat for a few minutes, while I awkwardly set th e camera and the record er up. With all the formalities taken care of and Rufus quietly taking a nap on the sofa, we start the interview. Roots “I guess a good way to start would be talking about you, Curt? How does that sound?” I ask them. “Sounds good!” He says with a chuckle. “Christie, please make comments at any ti me!” I mention upfront trying to avoid making the same mistake I had made with Bob and Diane.

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267 “No problem!” she replies, smiling. Figure 31. Curt draws his family tree. Father and Mother Ralph… My father Mary… My mother He is from Arkansas Land of the Brave Land of opportunity. He’s got… nine brothers And… two daughters… [ Meaning sisters] Eleven… Siblings… It’s huge! Ralph, Liz, in Arkansas She passed away… [Writes the date next to her name] October 10th, 1986 Hospital… St. Louis Liver disease… Drink? No, no, no… But pills… very much, the pills… She has had a back injure… In-ju-ry [Says it deliberately]

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268 Operations… So… Abused painkillers… Badly… She needed, I guess… I cried… but, of course… Life goes on… Mary died Ralph… Straightened up his act A long time ago… Two kids, Bob and Peggy, My half brothers… [Meaning half siblings] Later, Mary in Illinois Ralph and Mary, two kids Me and Greg Ralph was poor growing up Father was an alcoholic Oooooh, man! This is genes, I guess!! Ralph was an alcoholic. He’s got sober… Twenty-two years ago He’s a strict… disciplinary Disciplinary caring… He… beat me… severely… Sometimes…

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269 But… he’s an alcoholic… I was sixteen or seventeen I beat him, finally! But now he’s pretty good. He’s loud, sometime… Soft sometime… What made him sober up? I think Mary, my mother… Curt’s Siblings Peggy Bob Greg Half brother [Meaning half sister] She is… Clean… [Laughs] Peggy is a nurse. She’s in Oklahoma. Greg was living In Venice, Illinois He is good guy… He’s alcoholic, Of course… He is… 62… Still drinking… Stubborn… He is president Waste manager Jacksonville Big company! He’s rich! He’s a good guy! He went to AA A long time ago… Twenty-two years Greg been sober!

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270 Curt and Christie I was born in Illinois… I like it… Play baseball… boxing… The golden gloves! I sixteen… or seventeen… I was skinny… Oh, man… 130 pounds! And tall, six foot! Those were the days! Well, my mom was a nurse and, my grandma was a nurse… It kind of runs in the blood… It just kind of happened, and since we both li ved in the same town, neither of us moved away except when I was going to school for the three years… A nd it was only over to St. Louis that I was going to school, so… I was home for the weekends… So… we just stuck around Granite city. Both of us worked ther e, lived there, and just kind of stayed together after that… Music, Band, and Love The Sweetest Clarinet As I hear Christie mention how they “stuck around” after college, I ask, “How did the two of you meet?” “We meet in school… Junior high… Almo st forty years ago…” Curt says. “Nooo… Forty years?” Christ ie exclaims surprised. “Yeah!!!” Curt nods. “I guess so!!” she agrees, smiling. “We were both in band…” she reminisces. “I played the clarinet…” “… and I saxophone…” he completes. “We’re from Illinois, both of us…” Ch ristie explains, “and we were in… grade school… or… junior… middle school together!”

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271 With a smile playing around his lips and a spark in his eyes, Curt says, “I want to show you! Have one picture!” He stands up and walks toward their book cases, looking intently at their family pictures. After a few minutes, he returns, hol ding two tiny photographs in his large hands. “Remember?” he says, looking at Christie with a loving smile. As he lays the pictures on the kitche n table, I see two playful and cheerful teenagers, making funny faces and kissing ha ppily inside a photo booth, as the click of the instant camera makes their moment eternal in the tiny snapshots. “Are these the two of you?” I ask. “That’s when we were first together!” Christie explains, sweetness in her eyes. “We were probably about … sixteen…” “You both look so different,” I say as I take a glimpse into the past and try to imagine them meeting for the first time during rehearsals. “Yeah…” Curt chuckles. “I ninth grade, Ch ristie eighth grade. She’s a sweetheart! Those were the days!” *** We were in junior high… He was a yea r older than me… We were in the band together, and we went on a field trip to a diff erent school or something to play music. We had to sit together on the bus because we were the last tw o people, and that’s where it first started… Oh, and I think we went to a dance together, too… When he went to high school I was still left in junior high… We weren’t going out then, we kind of broke up for a couple years, but then came back together when I was back in high school with him… It’s b een going on and off ever since then!

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272 Figure 32. Curt and Christie at sixteen. Saxophone As the afternoon gradually turns in to evening, Christ ie continues, “Curt was really good with the saxophone… Actually, he also played in a band outside of school.” “Oh yeah…” he recalls, “Six… hmm… weeks…No…” “No… six nights a week…” Christie correct s. “When he was in eighth grade, he was going out and playing with bands till one and two in the morning and then getting up and going to school the next day.” “Not much sleep,” Curt chuckles. “Well, you didn’t do too we ll in school because of that…” Christie nods and chuckles back. “But once you got out of hi gh school then you started… I guess that’s when you quit playing music… Except maybe on weekends, and got better at school and took it more seriously…” *** A long time… Fourth grade!

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273 I like the saxophone! I’m a jazz musician And rock n’ roll of course, in high school!! I take lessons And the school band I’m good! Six nights a week I’ve been playing! I’m high school! Junior high! School… Oh… not so good! The lower bottom… But I graduated, finally! [Laughs] Oh boy! I’m intelligent… Sometimes It is fun! I love the saxophone! Greg, brother, plays guitar… Ralph, my father, is a guitar nut! Bob plays guitar, too…

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274 And I the saxophone. Saturday and Sunday, Ralph is playing music Ralph, in the beginning International shoe store in St. Louis He played on weekends. Ralph loves the guitar… He’s good! He played with Elvis, Everly brothers, Hank Williams… He still plays, every day. Two times a… Two hours a day! At least! He’s good! Really good! Hawaii to Granite to Florida I knew Elvis and some jazz musicians, but to Curt and Christie’s surprise and utmost amusement I was completely unfamili ar with the Everly brothers and Hank Williams. As they laugh and kindly situate me in the musical background, I ask them, “With all that music tyi ng the two of you together, how did you transition from the school band to getting married?” “Oh… It took us a long time!” Christie answers. “Oh yes!” Curt agrees, laughing.

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275 “Everybody was teasing us for being t ogether for so long and not getting married… So, eventually, we did…” Christie explains. “Were you waiting to graduate college or something like that?” I ask. “Nah, not really…,” Christie continues. “We just… never… felt the need to, I guess… Then one year we were going to take a vacation over to Hawaii, and his friends lived over there, so we just kind of made arrangements to ge t married there, since it was a nice place!” “Don’t forget! Five… thousand… dollars!” Curt reminds her. “What?” she asks, confused. “Thelma, and… hmm… hmm…” Curt says. “My dad?” Christie ventures. “Yeah!” “Gave us five thousand dollars? Oh, I don’t remember that!” Christie concludes, laughing. “Really?” he looks at her amazed. “Oh, I remember!” he says emphatically. “And that’s why we got married?” “Yeah! I think so!!” Curt replie s as we all roll in laughter. Recovering from the hearty belly laugh, Christ ie continues, “That’s probably why we took a trip to Hawaii!! It was just kind of assumed th at we would get married, so nothing ever was said about it… At least I don’t remember any…” “What?” Curt asks, curiosity rising in his brows. “A proposal…” Christie continues. “Well… sort of…” he replies.

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276 “Oooooh, I don’t think so!” Christie says and we all fall into la ughter once more. “ I proposed!” he says confidently. “Did you?” she asks, truly searching her memory. “ Yes !” he says resolutely “Forty years ago!” “What did you say?” she asks as a challeng e, with an amusing tone in her voice. “I love you!” Curt says, mellowing. “Get… Get married!!” With some laughter playing in the corn er of her eyes, Christie replies, “I don’t think so… I don’t re member that! But anyhow…!” As our laughter quietly subs ides, Christie continues, “After we got married, we lived in Illinois until 1996. About twenty years…” “Where in Illinois?” I ask them. “Granite City.” “Grand City?” I ask as my foreign ears betray me. “No, no…” Curt and Christie giggle, sympathetically, “ Granite You know, like the rock!” “Oh!! I see!” I res pond, a bit embarrassed. “I don’t like Granite City,” Curt continues. “Why is that?” I ask. “It’s a small steel mill town,” Christie explains. “It’s real dirty, stinky… dirty town… We just like the people that are there…” “I think I can relate,” I mention, thinking of the craziness of my hometown and all the loved ones my husband and I left behind.

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277 “It was especially nice when we were rais ing our three kids,” Christie mentions. “We had good neighbors and kids across and down the street would always babysit for us, so it was not too bad… I really liked the neighborhood we came from, and our house… We had a good time there, a lot of friend s, a lot of family. But now that we are in Florida it’s nice too because we have a lot of visitors! So we have the best of both worlds.” “What brought you from Granite City to Florida?” I ask. “My mom had moved here,” Christie e xplains. “After my dad died, my mom decided to move to Florida, which was funny because she always hated the hot weather. But all of a sudden she decided she wanted to move to Sarasota. After she moved down, we decided to follow her because she was here all by herself. It took us a while, but we finally did it. She was down here about f our or five years before we came down.” *** Noticing the time had advanced faster than I had accounted for, I thank Curt and Christie for the interview and ask them when we could schedule our next meeting. As I’m putting the camera and papers away, I meet Courtney, Curt and Christie’s second daughter, as she was feeding their beautiful blue-eyed white cat. Excited with the possibility of incorporating her voice into th e narrative, I explain the project to her and ask if she would be interested in participating in the interviews sometime. “Sure! We just need to work out the schedule…” she says. “I work nights.” “Courtney and I are both nurses,” Christ ie comments. “Shawn, my first daughter, is a nurse, too, but she’s s till living in Illinois.”

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278 Surprised by the number of nurses in the family, but trying not to overstretch my stay, I make a mental note for the following interview and start my way back to Tampa. Pass me the Beer and Play me the Blues August, 2004. I arrive at Curt and Christie’s house and as soon as my feet t ouch their doorstep I hear Rufus announcing my arrival from the depths of his canine lungs. “Shsh!!” I hear Curt saying, “Quiet, Rufus!” As he opens the door and we exchange our greetings, Rufus performs his regular sniffing check of my camera and bags, accompanied by Charlie, a cute and loving cockerspanial. As I pass the careful inspec tion, we cheerfully get ourselves situated around the kitchen table and Curt and I start th e interview while we wait for Christie and Courtney to arrive. *** “Curt” I ask him, “last time we talked a bit about your family, especially your dad, and the impact he had on you. I also reme mber, from clinic, that you mentioned you were in AA before…” “Hmm hmm…” Curt nods. “Can you tell me a bit more about that?” “Ok…” he agrees. *** In the beginning I’m eleven pretty much…

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279 Well, it started fourteen years ago [Meaning when he was fourteen years old] I’m sick… Shy man Really shy… A long time ago But… Still… Shy… In some ways. Why shy? Genetic… I feel… Ralph dominate my life… Still… does… sometimes… He’s a strictest disciplinary And I… Always shy Even world champions… Boxing… Everything… I thought still shy… In the room, I feel scared… If the friends, one on one, no problem… My problem is… Always shyness… Alcohol… Hit a block for me I’m in trouble all the time…

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280 At high school, drinking all the time … You don’t think about nothing… Just drinking… Just drinking… A long time ago, fifteen years ago I lose my mind, almost… The doctor said… “One day you’re living at the hospital In a straightjacket!” I almost catatonic! Liver disease… Cirrhosis… I almost died! Thirty days in the hospital… Need to dry it out… I was messed up I thought AA was a bad thing But… What are you gonna do? I know one thing: I don’t need to drink, ever. Never, never, never.

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281 Thank God for AA!! 1989… I got sober Finally Five years ago I had a stroke No more AA… Well, rarely… But I’m gonna go, one year later I’m gonna go back again! Christie, she’s happy! Finally, I sobered up… She is my sweetheart for life… Trust me, she’s puts me… With me a lot! That’s the part of my life! Thirty-seven years… Alcoholic… What you’re gonna do, but change life? Get over it! Greg’s made it. I made it. Ralph made it, finally!

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282 And Bob… He’s still an alcoholic… But we’ll see… I’m sober finally! *** “How is the interview going over there?” Ch ristie asks as she arrives and takes a seat at the kitchen table. “Talking about me, sober!” Curt remarks, chuckling. “Oh,” she says with a sigh. “What was that period like for you, Christie?” I ask her. With a saddened expression, Christie sits back and ponders for a couple of minutes. “Well…” she sighs, “It was rough.” *** In the beginning he was gone all the tim e because he was drinking, and after he quit drinking he was gone all the time b ecause he was going to school, and trying to work, and different things like that… We would get along pretty well, except when he would drink, and that was always at night. I worked evenings, so I didn’t have to see him a whole lot, I guess… I was either working or sleeping when he would come in la te. He was always at the bars until one or two in the morning. [Silence] It was a lot better once he quit drinking. He was just like a different person. I mean, everybody liked him; he was always a nice person. He would help everybody and

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283 get along well with, everybody, but… I guess for one he wasn’t very family oriented, because he didn’t grow up in a family like t hat, and he wasn’t home for his kids or me that much either, which I t hought he should be and he t hought he should be doing other things I guess… Despite everything, we’ve been together al most forty years. We just have such a history together! We were always going back to each other, even though we’d fight and break up. We’d always come back, either because of the kids, or… because we had the same friends… or because we love each other, I guess… [Smiles] Even with the drinking, we still loved each other… What made him quit? I don’t really know … I think he’d been wanting to and it just happened to be the right time. I can’t really remember if anything happened to make him quit… [Silence] All I know is he wasted 40 years of his life, but finally grew up! Genetics? As Christie mentions her relationship with Curt and their chil dren, portions of the last interview gradually s lip back into my mind. “Christie,” I comment, “last time, when I was leaving, you mentioned you have two daughters, right?” “Well, and Zack too!” Curt interjects. “Yeah,” Christie confirms. “Our two girl s, Shawn and Courtney, are both nurses.” “Really?”

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284 “Hmm hmm… It runs in the family,” she says with a chuckle. “My mother was a nurse, I am a nurse… They neve r thought about it I gue ss. They just did it… Like I did… And then we have Zach…” “Ohhh! Zach is problem child…” Curt says laughing, and then remarks, “No, I’m joking. Zach is Zach, you know? He’s a ki nd person. He’s gonna make it some day!” Shaking her head, Christie comments, “Zach’s not doing anything now. He quit school… I’m so worried about him… He’s talking about getting his GED. I don’t know what’s going to happen with him… He just got lazy, I think. He just got disinterested in school, I’m not sure why…” “He’s a sh… he is a smart!” Cu rt comments. “I.Q. is… 130!” “Who told you that?” Christie asks surprised. “Shawn taught… told me…” Curt re plies. “I.Q. in the classroom…” “I never heard of that!” “Oh yeah! I know!” Curt me ntions confidently. “He’s going to make it someday!” “Well, I sure hope so…” Ch ristie adds with a sigh. The Art of Parenting “What was the experience of becoming a parent like for you?” I ask them. “We had kids right away,” Christie mentions. Life was good the first few years…” she adds with a sigh. ***

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285 I guess… after Courtney (our second daughter) was born, he had a girlfriend, so we broke up. We actually got divorced for a couple of years I guess… But somehow we got back together again and got married for the second time… I thought the second marriage would be bett er because things were going to be different, which they weren’t, really… It was better, in a way, but he was still drinking… When he finally quit drinking is when it really got better, but then he got so busy going to school and everything like that it was almost like when he was still drinking that he was still gone all the time, so… It was better, but it wasn’t as good as what I thought it should be. I always thought it could be better, even though it was good, it could be better… *** Zachary two years old… I still drinking Shawn and Courtney hated my eye I was drunk! [Laughs!] Being a father, I didn’t know how to do it! Always drinking… Always!! Two kids and the beer every day Religiously! Oh, man!! Being father, I didn’t know how to do it, but…

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286 I tried… Now I’m happy! I’m proud of Shawn, Courtney, and Zachary… I’m good… Good dad Finally. *** A few minutes into the conversation we h ear footsteps from inside, getting closer to the kitchen. “Hey Courtney!” Curt exclaims as he s ees their daughter approaching. “Jump in!” Somehow I was surprised with how openly the three of them discussed some of the issues they had confronted in the past, issues which for more conservative families would have probably been kept aside as taboos. Courtney joined us, but did not speak freely right away. It was mostly during a se parate interview later that day that she expressed some of her concerns and shared memories. *** A lot of the kids at school, because it was a small town, they knew what was going on in our family… [Courtney remembers] But once we got older and he did stop drinking, he started going to sc hool and everything, everyone still looked back on us like that was… They still judged us according to that, but my dad was going to school and probably doing a lot better than a lot of the other guys were doing. I don’t know… I guess my dad was a perpetual learner.

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287 Perpetual Learner I’m terrible in high school My teacher, Peter Frank Made me change. He straightened me up! Finally! *** “He continuously went to school!” Christie comments. “And I was bad in high school!” Curt chuckles. “I guess you changed your mind about sc hool work…” Christie says smiling. “You went to Bellville Junior college, remember?” “Yeah… I liked Bellville College…” Curt says, “Is… pretty … easy… but… SIU is hard, very hard… but… I’m getting by…” “Yeah…” Christie nods, “Once you gradua ted from junior college you went to Southern Illinois University, and that’s where you started doing…” “Geo-anthropology…” Curt fills in the blank. “Yeah… And digging for… bones…” Christie continues. “Yeah!” Curt reminisces, “I learned… al l types of earlier… civilizations… I loved… Paleontology! That’s my pa ssion! Fossils… Monkeys… and… hmm… Dinosaurs… Yeah! Geo-anthropology… First master’s degree. Then, well, 90… no, no, Early… It’s 19…89… I went to… Back to school… hmm… Exercise physiology.” “He’s always worked out.” Christie clarif ies. “He’s always been a weight lifter, since high school!”

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288 “One hundred and thirty… Five years ago, I’ve been… Still working out! I used to be skinny! In high school! Picture! One hundred and forty… hmm… One hundred and forty pounds! Skinny!” Curt says laughing and mentions, “I love school!! Perpetual learner!” Anthropology “Curt, where did you work as an anthropologist?” I ask him. “Well… I’m a… assist….assistant of di rective… of Mastodon Park… digging up bones… Halsey Miller, he’s my professor. He’s a good guy, my mentor. I always liked him. He died heart at tack,” he replies. “He was also into exercising, wasn’t he?” Christie confirms, checking her memory. “Yeah,” Curt says, “and beer too…” “That’s true…” Christie nods casuall y, “He was a drinking buddy, too.” After a pause, she asks, “Did he do anything with your teaching in college?” “Well,” Curt answers, “not really but… faculty hmm… really helped me… tremendously. Introduce me to faculty,” he clarifies. “Oh, OK,” nods Christie, “So he introduced you to people there in the college at SIU…” “Yeah…” Curt nods.

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289 “Well, but you also went from one thing to another… because all through when you were going to school you were still worki ng part-time construc tion, security… What else?” “I’m eclectic!” Curt comments good-humoredly. “Oh, yeah! He sure is!” Christie nods laughing. Exercise Physiology I use to be a teacher at Rehab Solutions in Tampa, an exercise physiologist at Southern Illinois Un iversity at Edwardsville, and an alcohol counselor in St. Louis and Bradenton, Florida. Formerly, I held the World Record in the Squat, liftin g 800 lbs in St. Louis, Missouri in 1980, and a first place in the Master Division at the Raw National Powerlifting Champtionship in Orlando, Florida. In 1997 Curt’s speech at the Speaking Out! Convention, 2004 “So after geo-anthropology came…” I as k, trying to organize the events somewhat chronologically. “Exercise Physiology,” Curt continues. “I used to teach school… lectures… in… hmmm… Physiology… I love it! And hmm… I taught class, hmm… And archery, working out… hmm…” “Well, that’s when you were going to school and getting your… What degree?” Christie interjects. “Well…” Curt says, a bit confused. “Masters of… Physical educatio n?” Christie asks, confirming.

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290 “Yeah, physical education…” Cu rt confirms and smiles. “Yeah, he was going to school for a while ,” Christie continues, “And… doing all the student teaching into physical education.” “I loved to… hmm… Work out… A long time ago…” Curt mentions. “Yeah,” Christie recollects. “Even before you graduated from high school… Remember? You had been weightlifting for a long time.” “Oh yeah…” After a brief pause, as if a light bulb had gone off, Curt says, “Wait a minute – I show you something,” and disappears into their bedroom. When he comes back, his hands are replete with family pictures. “Look!” he says, “That’s all um… Ten years ago… That’s me!” Almost in disbelief I exclaim, “Wow! You’re kidding! Th ese weights are humungous!” “That’s… Six… Eight… Seven hundred and thirty pounds!” Curt says. “Holy macaroni!” I say ast onished, “That’s a lot.” “That’s a picture world reco rd – eight hundred pounds!” “Jesus!” I exclaim, eyes wide open. Laughing, Curt explains, “Well, the 80’s! In St. Louis.” “How did you do it?” I ask, truly puzzle d. “Doesn’t your back hurt when you lift that much weight?” “No, never!” Curt replies. “Really?” I say, still stupef ied. “How do you train to lift that much weight?” “Well… It’s dedi cation, I think…” “And lots of practice!!” Christie chips in.

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291 “Many practice! Every single day!” Curt agrees and laughs. “How did you first decide to, you know try weightlifting?” I ask Curt. “Well,” he thinks for a while and then responds. “I saw… hmm… Rick… hmm… Lesco… He benched one… Two hundred and… hmm… Thirty… Three reps! Man, that’s a strong cat! I wanna be just like him!” he concludes, laughing. Figure 33. Curt receiving the first prize trophy from his mentor, Halsey Miller, in Roxana, Il linois, 1979 after squatting 755 lbs.

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292 Figure 34. Curt (in blue pants) spotting hi s brother Greg as he squats 500 lbs in St. Louis, Missouri, 1978. Figure 35. Curt deadlifting 650 lbs in Alton, Illinois in 1995. Counseling “Well, after the physical education program ,” Christie continues, “Curt decided he didn’t want to stay in physical educati on, that he wanted to go more into rehab counseling…” “What prompted you to go in to that area?” I ask. After a brief pause Curt replies, “I just like people, you know?” “He just hmm… Couldn’t decide what he wanted to do!” Christie smiles. “Yeah…” Curt chuckles. *** I counselor in

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293 [Sighs…] 19… 90… 96… Really recent… hmm… eight years ago… I’m a counselor! I’ve got my card! [laughs!] Still here! Counseling alcoholic I like… The other side now… Sit down in the class, and discuss… A lecture, me… of course… I like the lecture… [laughs!] It’s fun!! And hmm… introducing myself, and Talking about the sober life… That’s all… I was good at my work I like my work! It’s a rewarding!

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294 Stop drinking, hmm… half and half, approximately. Half make it, some…No… not make it… Three steps: death, institut ionalization, and hmm… Death, institutional, and sober. Two… Two… Three options [Laughs.] *** As our second interview draws close to an end I ask Curt and Christie, “Would it be OK with you guys if next tim e we talked about your experience before, during, and after the stroke?” “Sure!” they reply. “Just tell us when!” Stroke Inside and Out After a couple of weeks, I re turn to Curt and Christie’s house. This time, to my surprise, Rufus sniffs me perf unctorily and allows me passa ge without further inspection. In fact, he was even open to some petting! “Wow!” I comment content and surpri sed, “This is such an honor!! I was recognized by the family guard dog!” Laughing, Curt and Christie nod in agreement, “I guess he recognized you this time!” Christie comments. After a brief moment, Curt redirects us, “The stroke?” “Sure,” I nod. Looking at each other, deciding who would start, Christie volunteers.

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295 *** April 14th, 1999. Curt was at USF. He was a teacher’s assi stant, or whatever that’s called, and he was also doing these part time jobs, running ar ound. He went to lunch at the Subway, got a really bad headache, and somehow got back to the classroom, but didn’t go in. The teacher that called me later sa id some students found him in the hallway, really confused, and walked him over to the student clinic, across campus. He was there for a couple of hours until they decided to send him to the hospital. That’s when they called me. I was at home with my mom when I got the call… It was kind of scary because they knew he had a stroke by then. My mom drove me all the way up there. She was a nurse, too, so she knew about all the problem s that stroke people can have. It was scary… Most of the strokes I had seen in the hospital were bad, so it was scary… It took us a whole hour to get there, and then when we couldn’t find him, I t hought the worst… It was… it was a scary trip. He was in the ER until about one o’clock in the morning and we didn’t get there until about two hours after he had gotten there… The whole time, we were just wanting them to do something, waiting around for so mething to happen, and it just seemed like it took forever to do anything in the ER…. I guess he had gotten there around four in the afternoon. They did some testing, not a whole lot. They couldn’t do his MRI because he was too big for the machine, so I think they did ju st the carotid ultrasound and decided he had a clot. They took him up to the floor about eight hours later and started running a heparin drip. By the time he got ther e, his whole left side was paralyzed… It was a lot of waiting, a lot of worrying, a lot of stress…

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296 *** The second morning after the first night we called Greg, his brother up in Jacksonville. He came down with his wife, and they stayed for about five days. That was nice to have him around because he would talk to the doctors and he was very concerned. He has been really helpful… He would gi ve him money and pay for this therapy, and he rented a motel room for us so we didn’t have to drive back and forth from Tampa to Sarasota. He was really good! He still is. *** Several months later, when I read this portion of the chapter to Curt, he breaks into sincere and heartfelt tears. “Is everything all right?” I ask him, worried that I may have hurt him as we recollect the events from his stroke. Smiling, still with tears in his eyes, Curt comments, “It’s OK! Just… Greg… Oh, he’s a great guy!” he sighs, still emotional. “My brother… I love him! Talk to him, two three times a week. I remember, Greg, everything!” *** I didn’t know anything … In the hospital, very confused… Greg, he’s crying… I remember, he’s crying… I don’t know why! I thought… I’m getting better!

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297 [Laughs!] Oh, man… I was messed up… *** On the third day Curt developed lo w blood pressure and high blood sugar because he is diabetic, so they took him to ICU for about a week. He couldn’t speak, couldn’t move his right side at all… We weren’t sure if he could understand anything because he couldn’t really say anything… He just looked scared all the time… It was just so hard to understand what he was thinking, what he needed, what he wanted… We’d try to tell him something, and we didn’t know for sure that he understood us, so it was rough… He was in he hospital for about ten days, so I guess he was in ICU for about five days and then he came out on the floor for a couple of days before he went home. *** Got out of hospital I was devastated… I didn’t know anything Confused I know the day time The night time But confusing Memory… no problem… I know what the… memories a long time ago…

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298 Keen with memory… At the hospital I slurred my words… Ba... ba... ba… I can’t… get the words out! I cried… but… Scrambled… really bad… I don't know… I did not know anything For at least ten hours… Eleven… Two weeks… Nothing… It’s funny… I remember this doctor… He was a limp… limping… I saw him one… Two or three times ago… But other than that Nothing…

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299 I was like a puppy dog… It’s horrible… Horrible… Half of the body is good… Half is not working… In time… So what? Is life, you know… But in the beginning, horrible… *** The first year wasn’t too bad because every body felt sorry for me. Talked to me, asked me questions, so it was kind of exciting to get all that attention [chuckles]. Then after that it got to be a little hectic… During the first six months, I was ru nning back and forth between here and Jacksonville. I was working thre e days straight and then dr iving to Jacksonville after a twelve-hour shift to pick him up at his brother’s house. Curt was receiving hyperbaric oxygen treatments back then. We did that fo r a couple of months. That was rough… A lot of working three twelve-hour shifts in a ro w, driving back and forth… I guess Courtney pretty much stayed at home then. Well, my mom was here, too. She was a really big help.

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300 Figure 36. Grandma Thelma holding Shawn and Grandpa Dutch with one of the family pets. *** Joining us after a brief interval, Courtn ey reminisces about her grandmother. *** We’ve always lived like a block away from my grandma, so she was always there. She actually used to live her e [in Florida] and we would come over for dinner all the time. We were very close with her. It’s always been that way… It’s nice, because it’s like having your best friend and your family, someone that knows you very well and you know you can always trust and tell them anything… She passed away about five years ago… I guess it was after my dad’s stroke… *** Years ago I had anger, frustration, anxiety, but no more… I mean, alcoholic is bad… Fifteen years ago,

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301 I’m through… You had that when you were drinking, but since you quit you’re much calmer… Oh yeah, much calmer… But has your stroke been affected with those? Not really… [sighs] You didn’t have any anger? Not really… Anger is no place for me. I happy be alive! Frustrating perhaps! I think you had some anxiety, especially around other people… Yeah… [considering it] You were afraid to talk… That’s true… Didn’t want to go places or talk to people you didn’t know… A long time ago, yeah. But no anger. *** Three years ago I still confused

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302 Now my goal is helping people I’m back! The Couch-Potato Syndrome “What were things like after the discharge from the hospital?” I ask them. Matter-of-factly, Christie replies. *** After Curt was discharged from the hosp ital in Tampa, he was sent to a local hospital for inpatient rehab for about six we eks. He also had outpatient therapy for a couple months. He was steadily getting be tter. At least he could get up and then eventually start walking. The speech was one of th e last things to start… It took him a lot of time for him to do that… But little by little he got better and better. The first two years after the stroke he really didn’t practice, he really didn’t try to do anything. I think he was expecting it woul d all come back… So he didn’t do anything to try. He had a physical therapist coming to the house to do exercises with him, but he wouldn’t do any practicing on his own. He’d s it home, watch TV, and… that was about it. That was all he did all day… It was not until the first couple of yea rs that he started. It took him a long time to get started, but once he did he was really motivated and started doing more to try and help himself. *** Curious about Curt’s perception of hi s rehabilitation process, I ask him,

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303 “Curt, what was it like for you when you cam e home from the hospital? What was going through your mind?” “Well,” he responds, “Getting better! I want to try, but… What do you think?” He asks Christie. “I think at first you just kind of sat around and didn’t try t oo hard…” Christie replies. “Probably more depression, ev en though you’ve always said you weren’t depressed… All you did was sit there and wa tch TV, and you thought all the stuff was going to come back without even working at it… I think it took two years before you finally started doing something…” Christie conc ludes. “For the firs t two years you were just doing nothing…” Quietly, Curt concedes, “That’s true… I think possibly I’m getting better, you know? But then I take my bull by the horns, I think so…” “Yeah…” Christie agrees, “But you waited for two years…” Nodding shyly, Curt concludes, “Y eah, that’s true… I don’t know…” Butting Heads “How did your family dynamics change after the stroke?” I ask them. After thinking for a while, Courtney replies, “Before the stroke my dad was always busy, going to school and all… But after the stroke we had to spend more time with him, on a day-to-day basis. When he first came out of the hospital, someone had to be home with him, and that would be me if my mom was at work. So, it was frustrating because I wasn’t used to dealing with him, and in

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304 the beginning he wasn’t as good as he is now… Certain thin gs I would expect him to do for himself, but…” “He’s always been lazy, though,” Christie adds. “He doesn’t do a whole lot to help around the house and he never did. He’s just been lazy. You were brought up this way, and we let you stay this way.” “It’s hereditary…” Curt responds with a funny smile, waiting for the comeback. “That’s right…” Christie replies with irony. “You never had responsibilities, really. You went from your mom and dad to us so I pretty much t ook care of everything, the house, the kids. You never had to do anything, you just did wh at you wanted to… And I let you get away with that for all thos e years… You just lived in your own little shell… But you’re trying to be good…” Picking up where she had left off, Courtney continues, “Another thing he is that bothers me…” “Let’s hear it!” Curt says, and I wonder if under the cheerfulness he was just bracing himself for impact. “He always talks about what he’s doing” Courtney starts, “How much better he’s doing, and what he did today, and… He doesn’t ask what we did… He’s more concerned with himself…” After a brief pause, she amends it, “Again that goes back to whenever he used to go to school all the time, he didn’t have time to spend at home, or wonder what we were doing. The funny thing is, if me and my mom are in the middle of a conversation, he’ll just butt in, ‘Hey, look at me, look at me, and what I did’…” she says, imitati ng Curt. “And it’s rude, but… I don’t think it has anything to do with the stroke that’s just the way he is!”

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305 “I’m a sociopath!” Curt says tragicomica lly. As I sit in the middle of the quiet cross-fire, I am impressed with Curt’s sens e of humor. I suppose it was a pretty strong shield. “He’s got an excuse for everything!” Ch ristie says with a look of routine and adds, “Self-centered is a good word… I’m proud of everything he’s done, I think it’s great… but… sometimes…” “That’s enough, huh?” Curt suddenly sa ys, between joking and serious. “A little uncomfortable?” Christ ie says, turning to him. “He knows all this… He just doesn’t want to hear it…” Courtney concludes. “Oh yeah… That’s true…” Curt concedes. Father and Children As all voices gently subside, I ask, “Curt, do you feel your relationship with your children has changed after your stroke?” After a brief pause, he replies. Zach is Zach I feel closer to my children Zachary… Not really, but… Zachary is Zachary! He’s sixteen or seventeen… He’s a young… Person…

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306 But… other than that… What do you think, Christie? *** Before the stroke, Curt used to do things with Zachary on his days off, but then after his stroke he really coul dn’t do anything, he couldn’t talk to Zachary, so they grew apart. Still now he doesn’t talk to him much. It hasn’t been good for either one of them… I think Courtney has done be tter with him because sh e understands where he’s been and what he’s going through. Zachary is too young. Like I said, he wasn’t here a whole lot, but when he was he would talk and do things with them. But he wasn’t here a whole lot for ballgames, or sc hool activities, things like that… I think they were kind of resentful he wasn’t. And they still are. Th ey’ll tell him about it now “Oh, you didn’t do this with me, or you didn’t do that,” and I think he feels bad bec ause of that now. Figure 37. Curt and Zach in Panama City, Florida, when Zach was about four years old

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307 Figure 38. Curt and Zach at Disneyworld in Orlando, Florida. *** There was a time when my dad tried to do more with Zach, but my dad was never a go-out-and-throw-the-basebal l-in-the-front-yard kind of guy… He would do different things like take Zac hary to a spring, or to the movies. I guess after my dad had the stroke my brother could never be attached to him because he didn’t understand… Especially whenever my dad first came home, I think, he probably saw too much of everything. So he probably had too much of a shock. He must have been about twelve. Sometimes I think Zach walks all ov er my dad because he thinks he’s not going to be able to do anything. Before he had his car, he’d take dad’s car and dad would try to hide his car keys and my br other would come in looking for them and still take the car. He would have done it to me and to my mom, too, so… I don’t think it was a matter of “who.” Bu t my dad wanted to say something to him and couldn’t really tell him…

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308 Nursing in the veins Shawn, and Courtne y… My two sweethearts! Shawn and Courtney! Both… Nurses Christie is a nurse… And Grandma Thelma is a nurse! Two generations Three generations! *** Shawn and my dad have always talked a lot. They moved my grandma Thelma down here together, and she always calls and talks to him. She talks to a lot of his old friends in Granite City and te lls him how they are doing… She is the one who talks more to him about the whol e stroke thing. When she comes down, they go play golf together. I don’t like to play golf, so I don’t go, but I’m more involved on the day-to-day basis type deal. I have been to like his stroke support groups. It was good because he was real proud of what he’s doing there. Very early on, when he first started going, he was kind of shy when we went in… It was interesting to see him really trying hard. I guess he was probably a little em barrassed, he didn’t really know anybody there yet or anything… But It was good to see him out, and see that there was a group for people! It’s just a sh ame that in everyday life they can’t really have much respect because people just don’t understand… That’s the way it is…

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309 My dad and I… We butt heads a lot… I’m looking out for my mom. I try to be sensitive to her and everything that she’s going through. And my dad is kind of… self-centered… I know he holds her very highly and everything, but it’s one thing to say it, and another to actually do it. I guess my mom has been a big influenc e on me, as far as going into nursing. Working with her now, I’m able to ask her questions, and she helps me. We get along really well and I think Zach and Shawn are jealous sometimes that we do get along so well. From my dad… I guess… When I star ted college he would help me, even in high school… He always could use thes e different words I didn’t even know and he would help me write a lot of the papers. My mom helped me through nursing, and now that I’m going back to school… I’m taking a philosophy class, and dad said he wants to read the book and stuf f, but I’m just not sure that he’s going to be able to… I think now it’s mo re me helping him on his homework… I don't know that he’s going to be able to help me this time around… He always went to school and he’s very smart. He was able to go very far on in college, and so I’m hoping that ma ybe some of the brains got passed down and I can go too… I have my RN associate now, and I’m going to get my bachelor’s and maybe a Master’s degree in nurse practitioner, or physician’s assistant, or something in nursing. I work in the ICU now and I like it. It’s more thinking skills than physical skills. You are thinking about what you ar e going to do. When you call the doctor, you need to know everything, even more than the doctor does, especially if

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310 you’re calling at two o’ clock in the morn ing! It’s more critical and more rewarding because the patients are so much sicker… It ’s a matter of life and death, so the patients are more respectful of you as a nur se. Out on the floor you’re more like a waitress… So it is different. *** With father and daughter sitting arou nd the kitchen table, Curt exclaims, “Courtney is stubborn, and Shawn is stubbor n, and they’re all nurses!!” to which Courtney replies, “What? Are we stubborn!?” “C’mon…” Curt answers, indicating th at question had to be rhetorical. “Yes, we’re stubborn!” Courtn ey gives in with a sigh. “Finally! You admitted it!” Curt says victoriously. “I don’t know why he says we ’re stubborn!” she comments. “Nurses…” Curt explains, “‘Gabby, gabby, gabby…’” and elaborates, “Strict, you know… ‘I know what the problem is.’ You know?” “Oh…” Courtney smiles. “I guess we’re… What is he trying to say, probably, is that we’re just strong, independent women…” “Yeah, that’s true…” Curt nods. “And yes, probably stubborn if, you know, so meone wants to tell us something… We probably have our own views on it, and we go with what we think… “ “Formalistic…” Curt comments. “Were you always like that?” I ask her.

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311 “I guess I’ve been that way just… gr owing up…” she mentions. “Because my mom is that way, my grandma is that way, my sister…” “Yeah… hmm… Grandma… Thelma… same way…” Curt agrees. “I think I’m a little bit more laid back than they are, but…” Courtney adds quietly, waiting for Curt’s reaction. “Hmm…” he replies in disagreement. “I like to think that, but proba bly not…” Courtney says smiling. “I don’t think so!” Curt says with laughter. A few minutes later, Christie, who had le ft the kitchen for a few minutes, returns and joins us. “He said that we’re stubbor n…” Courtney tells her. “He’s always telling us that yeah!” Christie agrees. “And I said that I was only like that because I had to grow up with you guys!” Courtney adds and concludes, “I told him I think that I am more laidback then you guys are, but he said I’m not…” “No…” Christie remarks, “There’s nobody more laidback than I am!” As the whole table starts laughing, Courtney says, “Next question!” “What is it like being a Dad with so many women around?” I ask Curt. “Is hard!” he says smili ng. “Hmm… I like it, though…”

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312 Late Blooming and the Social Butterfly “So after those first two y ears of being a couch potato, what made you decide to change, Curt?” “I don't know… It’s funny… But I’m here t hough! That’s all that matters!” he says, laughing. “Well,” Christie interjects, “You started going to the aphasia group at Sarasota Memorial, and then USF…” “Yeah… I’m a social butterfly!” he ag rees, laughing. “Working at USF, speech department, three days a week! That’s a full time job! But I love it!” “Yeah…” Christie nods, “I think the most improvement he’s had has been here, walking in the neighborhood, and going to speech therapy up in Tampa… It’s made a big difference… We were going to the aphasia gr oup up in Sarasota Memorial, and he met Tom and Erika, who had found out about this aphasia group at USF… Erika was the one that mentioned it to us, so that’s how we got started there! It has ma de a big difference! “And Ms. Paul…” Curt says with a sm ile, “She’s a sharp cookie! She’s a wonderful lady, consummate teacher! Give hope!” *** It took a couple years for him to get really motivated… I think things started to improve once he started driving… He started getting more motivated and that’s when he got in the aphasia group at the hospital and at USF, and they all started going there. By that time he did have a driver ’s license, so he could drive… I guess that’s when he got motivated, by going up there, starting to spea k better, feeling better about himself… That really helped a lot!!

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313 You know, it’s funny… I always thought that after the first six months that was it, you’re not going to get any better. I was a nurse and I always thought that! I mean, that’s what you read, but… When I first started goi ng up there for the group meetings they kept saying, ‘Oh, don’t believe that’! And it’s tr ue! They do get better! Everything is a lot better now… I’m just happy that it’s work ing now, he’s happy with his life, he can golf as much as he wants to, he can work a couple days, which is enough… and he still has time to do other things, go to his group therapies, go up to USF… He has time to do all that stuff… and as long as he is happy with his life, I think that ’s great! As long as he is content. No Cane “Do you think that people who don’t have a paresis after the stroke recover better, or adjust better?” “Oh yeah!” Curt replies promp tly, “I think so. I envy them…” “Really?” I ask, surprised to hear that from Curt. “Yeah…” he says, and with his great optimism he adds, “But so what? You know? It’s life! And I’m going to speak… flue ntly and walk better, much better!!” “I don’t doubt that!” I say as I smile. “I don’t like canes, anymore…” Curt con tinues. “I hate it… Inside, no problem, but long distance I still have to… Cane… Bu t… Six months, one year… Watch out!” he says laughing. “I notice you always set goa ls for yourself.” I comm ent. “Have you always done that?” I ask, curious.

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314 “Oh yeah!” he exclaims. “All here!” he says, pointing to his head. *** My goals is… Walking better… and Talking fluently… That’s my goal. I set my goals Small, but I like it! Every six months, re-set my goals. I know… my goals… Just here [pointing to his head] I’m stubborn… [laughs!] The Four Musketeers and the “Sissy Game” Physically, I feel good. I work out at the YMCA three times a week, religiously, and like the treadmill. It’s my passion. I also golf in Sarasota five times a week. I love to birdie. I used to think it was a sissies game. I mellowed … In the future, who knows… I would like to teach golf to all stroke survivors because it has helped me with rehabilitation. Also, I am a certified

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315 “Strength and Conditioning” specialist. Maybe I could be a personal trainer for stroke victims. My communication is coming, as well as you. The doctor says I am going to be fluent some day. It may ta ke two years, three years, five years. Whatever it takes. Curt’s speech at the Speaking Out! Convention, 2004. Who started the whole golfing thing? Wasn’t it you, Curt? I think you saw something in the newspaper about golf and handicap and then… So he started first… and then you got Tom to go… Oh yeah, three years ago, no golfing! I think sissy game! But it’s fun! Membership now… and I beat Larry and Tom and Bob! You play a lot more than they do! That’s true… They don’t play every day! Pretty good, though! You’ve gotten good in three years! I hit a five wood, 130 yards! And I chip with two hands! Getting pretty good!

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316 Is it? Oh, trust me! Good! Old Friends “Have you kept in touch with ma ny of your friends, Curt?” I ask. “Friends?” he sighs. “Of course at th e… aphasia… Tom, Bob, Larry… and… I get… friendly person… at the… at the golf course… Mike… Jack… Eric… all friends.” “But those are all friends that you’ve met since your st roke…” Christie remarks. “Yeah…” Curt acknowledges. “You don’t see your friends that were friends before your stroke here in Florida. Those friends from the university have stopped coming by, stopped talking to you.” “In Florida… Greg is my friend…” Curt says. “But that’s your brother, Curt…” Christ ie remarks. “You have friends from Granite City that still call you and talk to you, but they’re old friends. You’ve been friends with them for many years! Your frie nds that you had here for just a few years before your stroke you don’t see anymore… They were workout buddies, basically…” “Well… That’s true…” Curt concedes. “But some call…” *** The guys that my dad grew up with ba ck in Granite City if you ever go back there, they just tell stories about my dad like my dad was the greatest guy ever… He was so smart and he always he lped people, like his buddies and stuff. They’ll just go on and on for hours, some of them will start crying, he’s very wellknown… Then whenever he came down here, it was kind of… No one really

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317 knew him except for the people at the sc hool, and they were all very supporting in the beginning and then after that people look down on people who’ve had a stroke because they don’t understand, or … You don’t know how really he is, so… Up there, they don’t care… Whenev er my dad comes up, they think the world of him. On the Road Again As I think about Curt’s transition from his independent and hectic university schedule to the convalescen ce after his stroke, I ask, “Curt, how do you feel a bout returning to work?” “I’m getting my job, two days a week…” he replies with vi sible contentment. “ABC auto auction! I interview w ith a vocational rehab course.” “Yes, disability, vocational rehab…” Christie confirms. “He went there a couple of years ago. She wanted him to get a volunteer job before he got an actual job, which he never did, so finally she called up one day and she said she had a job for him. He started out one day a week and now he’s doing it two days a week! He’s driving one day and he is doing the security job one da y. He likes the driving part…” “Fantastic!” Curt comments, a smile glow ing in his face. “Venice, and Palmetto, and Brandenton… Full days…! Thirteen hours a day! Long hour! I love to drive! I’m shy… I prefer driving… Much easier… Th e university is… hard… talking… I prefer driving… Good change!” he concludes with a relieved sigh.

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318 Speaking Out! “And how about Speaking Out!?” I ask him. “What was it like, giving your first step towards becoming a motivational speaker? “Oh, man,” he exclaims. “Shawn and Tony… From Illinois just for me! Man, I’m scared…” he says laughing. “Shawn and her boyfriend drove down just to see him present… Just for those fifty minutes!” Chri stie explains. “I can’t believe it!!!” Curt says, moved and exhilarated. “Shawn hadn’t seen him for quite a while!” Christie mentions. “She’d talked to him on the phone a few times, but actually s eeing him up there, giving the whole speech like that, she was really impressed! And proud!!! Both!! So… it was nice, it was real nice!!” Motivational Speaker I want to be a motivati onal speaker some day!! Herb Silverman, he’s my idol… He was… Speaking… No problem! I liked Herb Silverman… My goal is… Motivational speaker. I wanna… Set my goal as a motivational speaker… Shortly!

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319 Figure 39. Herb Silverman and Curt at the Speaking Out! opening reception, 2004. Personality “Curt,” I ask him. “In the fi rst interview, when you talk ed about your parents, you mentioned you were shy.” “Oh yeah!” he says, emphatically. “Do you still feel that way?” “Oh, I’m shy!! Of course!” he replies with confidence. “Well, not that much…” Christie comments. “It’s a small group… Ten people… th at’s perfect…” he says, laughing. “But he would have to go to the doctor and get medication for when he would talk to large groups, like in college… At least th e first few times, when he first started…” “Very nervous! I’m still…” “I don’t think you’re half as bad as you used to be…” Christie disagrees diplomatically.

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320 “Shyness is always a problem… But… now I take Inde ral… Wonderful medicine! Speaking Out!… one tablet, that’s all! Twenty minutes ago! Is terrific!” “It’s mostly a heart medication…” Christie explains, “I’m not sure how it works. Probably lowers your blood pressure…” “It’s calming you down… It’s a miracle cure!” Curt says with relief and laughs. *** Before the stroke… I would say that he was a busy, active person. He was working three jobs part time, alwa ys running around, going somewhere, doing something… He is very friendly; he ge ts along easily with other people. *** Recently we have gotten in a fight, w here he’ll say that I’ m hateful and that I don’t do anything for him. I feel like I do a lot, and so that makes me mad whenever he says that… Later on he nev er apologized for anything, and he was just talking again about how much be tter he’s doing, and I was wondering how much does he really understand of what is going on? I was kinda telling him he needs to apologize, and I was sort of holding this grudge, but… He just didn’t seem t hat he understood it all… It’s hard to tell what he understands and what he doesn’t… So I didn’t want to push the issue anymore. The next day he was talking about again about how much better he’s doing with walking, and talking, so to me it looked like he was just trying to keep on what he was doing, in order to stay focused, and happy…

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321 He’s never had a bad day, he’s alwa ys happy, so… I thought that I’d better not push the issue because I didn’ t want him to get upset. And I think about how hard he’s got it… It was just hard for me sometimes… Before the stroke he would have apol ogized. He would have made a big point of apologizing, and trying to talk it out… Because he was in counseling that was his big thing, you know? So, that day really stuck with me. Is this just his way of… dealing with it and thinking out what’s going on here kinda thing? I don't know… Then I felt bad for pushing so much… As far as being a father I don’t think anything’s changed a whole lot… except for, like I said, it’s hard to communicate with him sometimes, just because… hmm… I guess you couldn’t really hold really the same kind of conversation that… But we still go out on vacation together, and go out to lunch… I guess I try to look at it as not really a whole lot has changed, except for the kinds of things that we talk about. *** He’s nosy… Yeah, he is! He’s afraid he’s gonna miss out on something… every time I’m in here, cooking, talking on the telephone… or if I’m reading something… he has to… find out what’s going on…

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322 I’m inquisitive! If I’m on the computer he’s looking over my shoulder, and I could still be on the same page and he’ll still be looking, like, “What’s gonna happen next?” But instead of asking you just kind of sneak around and… stare… You could be walking by from here to here: If I’m talking on the phone you’ll just stand there, quit walking, just waiting to see w hat I’m going to say… Just nosy! That’s true… *** Sometimes he’ll say, “Well, I have aphasia, so I can’t say that…” or “I can’t explain that…” and kind of use that as a smoke screen. I think that’s his way of dealing with things, to stay on track wit h being a strong person, staying busy… That’s always been his thing: If he stays busy, then he doesn’t have time for anything else. I think that’s how he deals with a lot of stuff, to kind of block it out and keep going… I think it’s just been the way he was probably raised, knowing my grandpa… I don’t think he’s really ever been asked, or forced to, deal with… everything.

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323 It Happened – Get Over It! I’m content! I’m learning everything! Me now, me before No difference!! I had a stroke Left hand is weak, but slowly getting better! Life is good! Look in the mirror What do I see? I’m happy all the time! I’m up early Bright eye and bushy tail! I will beat aphasia! I’m confident! In the mirror Survivor I survivor now…

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324 Five years ago, watch out! But now… I’m back! Five years ago I too rushed Graduate students Teachers, All types of different problems… But I smell the roses now! Helping people, that’s my goal, in life… Miss anything? Not really… I’m golfing, working out… what to miss? Soul Mates Christie’s my soul mate for life She stuck by my side Everyday in the hospital Wheelchair bound … Oh… I love her! But… She’s stubborn!

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325 *** As we gradually approach the e nd of the interview, I ask them, “So what do you see in the road ahea d, for the next couple of years?” “Well,” Christie sighs and smiles. “Everybody is happy with their lives… They got worse for a while, but they are getti ng better… So much easier to live now!” With the deepest sincerity in his voice, Curt looks at his life-long partner and says, “Christie! I love you!” “I know… I love you too!” she replies, smiling. Thinking about how to ask th e question tactfully I say, “Do you think the way you express love to each other has changed?” With a shy smile, Christie replies, “I think actually we do express love a lot better or easier now than we used to, basically because we’re just together more … Because Curt slowed down so much it’s better, in a way… It’s just different… and it’s hard to adjust to it because it is so different… I mean, I always wanted him not to work so much, not to be gone so much, but now that he is here all the time, that’s not good either…” she says and laughs. “Just can’t be happy, I guess! But it is, it’s a lot better now… It’s somewhere in the middle… Finally…” “I wanna make you proud, someday!” Curt says, chest high. “I always have been proud! Always have something or another!” she says. “That’s good… to know!” he sighs in cont entment. “You are my soul mate for life!”

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326 *** Before I turn my recorder off, I ask my last question. “Christie, what do you think of Curt’s improvement so far?” “Amazing?” he asks, with a hopeful look in his eyes. “No…” she says chuckling, “I think it was about time!” “Well… yeah…” he says, “but… I’m sick, remember?” “No, you’re not sick…” she says firmly. “I just wish that he would have done it before, you know? Not waited so long…” “I’m here, though… that’s all that matters…” Figure 40. The Mathes family in Siesta Key, Florida. (Standing, left to right) Courtney, Zach, and Sh awn. (Sitting, left to right) Curt, with Charley on his lap, and Christie.

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327 Chapter 10. Dharma Foreshadowing “‘Excuse me, are you from Ithaca?’ … ‘I will be because I’m going to live with my fianc in Ithaca,’ I replied. ‘So that’s why you look so happy,’ the stranger stated. I nodded ‘Yes,’ pleased that my delight was so apparent. ‘I’m beginning a whole new phase of my life.’ He, too, was bound for Ithaca. After a ten-year period of medical research in India, he was returning to Cornell University for a college reunion. His gentle voice attracted me, as did his kind and forthright eyes. Yet more than this, I was impressed by his sincerity and warmth. He had done something purposeful with his life while I, at 21, was just beginning to give meaning to my own. I told hi m I had just graduated from Ithaca College, which would allow me to teach speech, drama and English in the fall at a nearby junior high school. I then told him how confident I felt about teaching because my speech professors called me a ‘natural.’ He nodded affirmingly as I spoke. Then he to ld me about his life in India, his wife, his work, his child. Pulling a wa llet out of his jacket pocket, he produced a photograph of his son, a child of five who had a bright, open smile very much like that of his father.

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328 ‘He’s beautiful,’ I said, admiri ng the child’s big, bright eyes. ‘He’s perfect,’ the doctor murmur ed, ‘even though he has cerebral palsy.’ I was visibly shocked. ‘It’s hard to tell from the picture,’ I added, hoping to soften the knee-jerk response to this information. ‘Was he born this way?’ I asked. ‘Yes.’ The doctor’s expr ession turned subtly reflective. ‘India is a strange country. It is difficult to assim ilate the peculiar attitudes the people there have toward life. One of their customs is that when a child is born imperfect it is sometimes reje cted at birth and killed.’ ‘What do you mean?’ I said rather al armed. ‘Who sets the standard for what is and isn’t perfect? What ri ght does society have to prejudge innocent people?’ The doctor whispered almost to hims elf, ‘They’re scared of anyone different – whether one is ill or deformed really doesn’t much matter. Society shuns that person, ignoring their feelings and what is inside their soul. Many times a person who is disabl ed takes on the image that others create for him. He thinks that he doesn’ t matter or that he is helpless. It is up to us to give him confidence a nd independence, and most of all a chance at happiness. Our attitudes a bout treating everyone with equality can make all the difference.’

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329 Unconsciously, he rubbed his thumb over the photograph, saying, ‘He’s perfect to me. Even without sp eaking or walking, he has so many gestures and expressions. He lear ns something new every day.’ Then there was a silence. I was unset tled by this information. I looked out of the window, thinking how protected and fortunate I was. I could not imagine anything this painful, this permanent. In my short life, tragedy had never been part of my experien ce. I had never known a real crisis. I had been cushioned by loving pare nts, by financial security, by an abundance of friends and romances. I did everything I wanted to do. There were no obstacles, no hitches. My expe rience of fear and struggle were limited. I was deeply touched by my companion’s capacity for understanding, but more important, I was awed by his graceful acceptance. I looked into his eyes, then looke d again at the photograph of his young son. ‘How do people of your village treat your child?’ I asked. ‘The people are afraid of handicaps, so they avoid him,’ he answered. ‘I don’t know why exactly.’ He st opped, then after a thoughtful pause added, ‘Maybe they think he has a contagious disease, and if they come too close, they may catch it. It’s kind of superstitious thinking.’ He hesitated, then sadly murmured, ‘T hey’re wrong, you know. They’re very wrong.’” (Barbara Newborn, Return to Ithaca .)

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330 “No wonder she majored in English,” I muse to myself as I re-read one of my favorite passages from Return to Ithaca I have always found foreshadowing to be a powerful and clever technique in literature – you tell your whole story in a premonitory nutshell at the beginning of your narrative, adding layers of complexity to the fabric of your plot. To the inattentive reader, even ts will seem to unfold in a linear and unpredictable progression. To the observant reader, however, a hidden and spidery web will be revealed with every page, allowing them to uncover the inner workings of the plot several chapters in advance. I mull over the passage, once more. “Coul d it be that this was only a poetic license in her narrative? Or was that indeed the way events unfolded in real life?” I look back through my notes, and notice I never actua lly asked her about it. “In any event, if those were really the facts” I ponder, “one ha s to agree that the world does have an ironic sense of humor sometimes.” Discovering Newborn I first heard about Barbara Newborn as a beginning graduate student. “She had her stroke at the age of 21,” mentioned my clinical supervisor, “and wrote an autobiographical account of her experi ence with aphasia. Her book is called Return to Ithaca. ” Fascinated and curious, I searched for her book and read it in a single breath. I was enthralled by her beautiful prose, and impressed with her courage, especially at the end, when she returns, alone, to Ithaca. I reme mber thinking, as I got to the final pages, “What happened after that?” But th e book gave me no more answers.

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331 Looking back, I wonder what attracted me to her story so much. I believe I was eager to discover what the inner experience of living with aphasia was like prior to having my very first client. But that was not all… In some ways, her story exposed me, vividly, to the frightening pos sibility of “losing control” of the future. Despite the statistics and the average profile of who may be at risk for st rokes, in real life we have little to no control over when our brains ma y experience a short circuit. It could all happen in an instant. With a chill running down my spine, a lit tle voice whispers inside me. “I could fall on the ground in a whirlwind one day… in a split second. And if that whirlwind were to catch me… would I have half her strength?” Speaking Out! Friday, June 4 2004. Hoping I had wings on my feet, I zoom through the wide hallways of the Hyatt hotel, looking for the room where Barbara Newborn was the keynote speaker. Her presentation “Since my Re turn to Ithaca” had been highlighted in my conference schedule several weeks prior to the actual even t. “I guess I’ll finally know what happened after the end of her book,” I thought to myself, in anticipation. Quiet as a mouse, I enter a large auditorium where a petite figure, with long brown curly hair and a long red dress comf ortably addresses a large audience from a podium. I take a seat in one of the last rows, and tune my ears to her presentation only, shutting out all other external noise. It doe s not take me long to recognize one of the passages from Return to Ithaca Although reading the book had been a powerful experience for me, listening to it as read by the author, in the company of an audience

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332 who shared and understood her journey better than anyone else was an unforgettable experience. I close my eyes quietly, and allow th e narrative to take me years into the past. Figure 41. Barbara Newborn at the Speaking Out! convention in 2004. After the presentation, I s hyly approach the group of people surrounding her and wait for an opportunity to intr oduce myself. I could not believ e she was in her 50’s. Her graceful walk and contagious smile made he r look much younger, despite the occasional white thread which meandered through her brow n curls. I notice her ability to listen intently to each of the various people su rrounding her, devoting to them her whole attention. I wonder if she had developed such skills because of her aphasia (as a compensatory strategy to follow the conve rsation more easily). But somehow I don’t think that’s the case. She seems to listen to each person more like a trained and experienced counselor would do. Her voice has a soft but firm cadence, and a melody

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333 which is cheerful and serene. I admire her secretly, hoping that some day I would become as good a listener as she was. When I am finally able to approach he r, she greets me warmly. I am surprised when she mentions she had relocated to Tampa, where she was working as a yoga instructor for persons with disabilities. He r studio (which was in her house) was called Gardens of Yoga I tell her I am in graduate school and briefly explain that I am working on a thesis project related to identity and aphasia. I ask her if she would agree to participate, and with a broad and generous sm ile she replies, giving me her card “Call me when you start your interviews: it does sound like an interesting project!” Going to the Gardens July 30th, 2004. After meandering through the streets of South Tampa, I find Barbara’s house, in a hidden and peaceful nook. She meets me gingerly at the front door. Her eyes are bright, with a mixture of warmth and wit. I gather all my gadgets and she invites me to come in. As we walk into her house, I catch a glimpse of a beautiful ceramic bowl with a cat painted on the inside. “Do you like cats?” I ask her. She smiles and points to he r three cats, blending in serenely with the environment. One of them Shiva, was the most lovable and adorable cat I have ever seen (I have a cat myself, but mine is not usually that loving and open to strangers). From the cats, my eyes travel ar ound her walls. I notice a vertical set of black and white photographs, showing Barbara play ing freely on a swing with her bushy and endearing curls. I think to myself that she’ll never ever grow old.

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334 She invites me for a tour of the house, a nd introduces me to the small yoga room, the office, the bedroom, the kitchen, and the big yoga room, which opens up to a serene garden in the back. The big yoga room has no furniture in it, except for a small table and two chairs in a corner. The sound of a soothi ng bell rings peacefully in the background, at the will of the blowing wind. “Where would you like to sit?” She asks me. “Anywhere is good,” I answer hoping to follow her lead We move towards the table in the corner, and I start get ting my recorder and camera set up. Infused with the atmosphere of the room, I ask her, “It must have been a huge transformation for you, to find yoga in your life. How did that happen?” I found the journey, and the journey found me “It was deep into the fifth month that my fate started to change. One day stands out, different from all the rest. In therapy, as usual, I tried to move my flaccid arm. Like all the other attempts, it would not budge. My body immediately filled with tension. This time I had to find a way to calm down. Taking one long breath, I shut my eyes and concentrated one more time. Totally unaware of everything else in the room, I found myself focused on the electric current r unning through my arm. I saw the movement before it happened. As time stopped, my mind connected with my arm’s energy. In slow motion my arm became aware of this signal and hesitantly moved an inch. I was amazed and thrilled at the impact of this magic.

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335 The next several months a whole ne w world opened up for me. With the same damaged brain, I began to discover that I could connect with my innermost self, that core self whic h remained undamaged. I learned that I could close my eyes and just focus on my breath. I would slow it down and begin to listen to the sound. In that peaceful stillness, I could hear what my intuition was telling me, that eve rything was all right and the way it should be. I held onto these words and they became my mantra. It was as though my mind was never injured, or that the injury brought me to this place – a place where I always belonge d, in a state of total oneness with everything, where I no longer felt separate d. In that silence, the terrible isolation I felt simply did not exist. T hat special time in the morning gave me strength and courage when I n eeded it most during the day. Breath and meditation began my journey to freedom.” Barbara Newborn, “Disability, Yoga, and Transformation” Sitting comfortably on her chair, Barbara th inks for a moment and then replies, “I think that my search to move again brought me to yoga. I us ed to play touch football, baseball, basketball…” “You were very athletic?” “Yeah! I was a tomboy! I was a flirtatious tomboy! I knew what I was doing!” she says. We both laugh, and she continues, “My body, so young, had to move! It wasn’t as if I was 80! On the Cornell track, I had to run, you know? Even though my leg was limping along, I had to move my body in so many directions, and that was part of the recovery.

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336 “What yoga did to me, eventually, was it made me connect to myself, on the inside, which was contradictory to myself on the outside: the material things, the wants, the desires. I learned to meditate, transcende ntal meditation (TM), early in my journey. I think about five months after I had the str oke. In TM I would say my mantra on the bed, and it would put me in a state where I found a place in my mind which was very peaceful, a place with nothing there, for fifteen minut es, morning and night. And that peaceful place helped me to find… myself. It helped me have the courage to deal with the problems in the day. Everybody talking, w ithout me, you know? Not including me. And from there, I connected more to the outside the trees… because I felt so peaceful with nature. I think that it also helped me have the courage to talk to people.” I nod as I listen, silently. Af ter a brief pause in the conversation I ask her, “Did you ever travel to India?” “Yes,” she replies. “What prompted you to travel so far? I mean… to me, it seems that… the way you are… Yoga doesn’t seem to be just a profession or a job.” I comment, trying to organize the thoughts in my mi nd into a coherent question. “Well, I went to New York to study, a nd the Sivananda Center was a block away. Since I felt like I’m anxious, in a new situ ation, I started taking yoga again, after my illness, after the meditation part and the yoga experience I had at twenty one. I was about thirty two then. It just so happe ned that, six years late r, they were going to India. I really loved the Swami, he was so much fun, and he was such a storyteller.” “Who’s a Swami?” I ask.

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337 “A Swami is a master, a guru who has th e knowledge of Indi an sutras, and the Indian philosophy, and follows it, and teaches it, and is ethical, you know?” I nod, and Barbara continues, “He was bringing a group of people to Kerala India. So I just went. It was at a time where my job was through, I could leave my job, my apartment rent was through, I had no major relationships, so I could just… hang out the shilling, you know, and leave! And so that’s what I did. I did not know anything about India!” “What was your experience like?” I ask, intrigued. “It was… I really feel I was ho me.” Barbara replies and smiles. “Really?” “Yeah, it was beautiful. It was tropical, in Kerala, the southern part of India. It was a lot like this climate. And it had a dam with lions, an island of lions. I felt so peaceful. But I had to work! We were worki ng eighteen hour days. We get up at 5:30 for meditation, and then we do yoga asanas two hours, and then we do karma yoga, cleaning up our bathrooms, and sweeping, or digging, or whatever the land need ed. And then we’d have lunch all together, and we do this on a r outine, but… I felt it so calming to the spirit. For three months I was there. And then I we nt to NY city, and coul dn’t take NY city at that time, so… I went up with the group to upstate New York to live, for three months more. It was so... Protected, you know? I felt so protected and so safe It felt like being a child, where you’re protected and safe by your parents. But it was more than that… It was… the beauty of the land! I felt so spiritual, at home!” As I listen, I try to picture Kerala in my mind, with the sound of the water, the physical work, and the opportunity to be immers ed in silence, in d eep meditation. What

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338 an incredible contrast to the usual fast pace we are normally engulfed in, in which reflection and introspection are sometimes considered expensive commodities which are “not billable.” As I listen to her narrative, I remember that in one of her articles, she mentions: “On my new journey into th e unknown, I learned to depend on the Yoga principles of living in the present, following my intuiti on, and having faith.” (Newborn, 2002, p. 3). Intuition “Speech – natural speech – does not consist of words alone, nor (as Hughlings Jackson thought) ‘propositions’ al one. It consists of utterance – an uttering-forth of one’s whole me aning with one’s whole being – the understanding of which involves infi nitely more than mere wordrecognition. And this was the clue to aphasics’ understanding, even when they might be wholly uncomprehending of words as such. For though the words, the verbal constructions per se, might convey nothing, spoken language is normally suffused with ‘tone ’, embedded in an expressiveness which transcends the verbal – and it’s precisely this expressiveness, so deep, so various, so complex, so subtle, which is perfectly preserved in aphasia, though understanding of words be destroyed. Preserved – and often more: preterna turally enhanced…” Oliver Sacks “Do you feel you have become more intuitive after you had aphasia?”

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339 “You know… I believe the innate intelligence is all there. We know it all. But it takes a hard circumstance to make it come out. And silence! Aphasia is the perfect circumstance because you are more intuitive.” She looks at me with a smile in her eyes and says, “No one can lie to a person who has aphasia, because we know, you know?” She chuckles and continues, “You know, very few people can pull the wool over my eyes… I am a tough cookie, you know? Compassionate, but tough. I real ly feel you have to be, especially in this world of scams. So it’s yoga, yoga is being aware of your sens es, and being aware of other people, when they’re deceitf ul, when they’re not. You know?” I smile and nod. That helped explain the spar k in her eyes that I perceived earlier – compassionate and warm, but also penetrating and witty. “But, your intuition,” she continues, “ My intuition was heightened, as a problem solver also. I knew, innately, what to do. I new innately to take a tape recorder wherever I was, and to tape, at my own time, when I wa s alone, language, to read, little kid books, to write over and over what I saw, and what was in my mind, as a journal, and even though I made mistakes, I had to get myself on paper. I had to see that these feelings are real, where do we go from here? And, you know, I think that… I don’t know how I would be if I didn’t…” A foreigner in a strange land An analogy is to imagine yourself a stranger in a foreign land, not knowing the customs of the language. Y our vocabulary might be limited to

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340 a few words – not even enough to order food or ask for directions. Your first utterance would be a conscious, effort-ridden response. A native, not comprehending what you were trying to say, would be apt to interrupt or even ignore you, and you would feel lost alien and helpless as a result. Such is the case with aphasics. They are always strangers in a strange land. Barbara Newborn, Return to Ithaca. “I remember you saying that Yoga and meditation also gave you the courage to talk to people, especially af ter you moved back to Ithaca.” “Yes… mostly with foreign accents!” She adds. “Is that true? The foreigners?” I exclaim. “Hmm, hmm, it was a lot of foreigners! But you know, like, we …. As English as a Second Language, we don’t really know the correct grammar, and the slowness of saying something, and listening all the time, and patience, you know?” “Yep, I know!” I reply, drawing on my own personal experience. “You got it!” She smiles, realizing what was going through my head. “So I really could relate to that! I was that! Actually, I was pretty enough, you know, at that time…” “And are still now!” “To really have people attracted to me, and just talk to them, as we are talking! But it’s the spirit, it’s my thi ng, it’s the eyes! What really made people talk to me, or be with me, it’s not the things I say!”

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341 “I think I get it!” I smile. “That is very funny that you mentioned the foreign language,” I continue, “because with the USF group one day one of the topics was ‘traveling’, and there was me and anothe r student who were both foreigners…” “Yes!” “And we were telling the aphasia gr oup about all the embarrassing moments we’ve been through when we moved to the U. S.! The things we di dn’t know, the things we’ve said that got us in trouble…” We both laugh. “Som etimes I see it as having a milder version of aphasia…” “Exactly!!” Barbara exclai ms. “You know, my husband is Bulgarian! One day he was writing on the computer ‘eggs and pain’. He meant ‘aches and pains’!!!!” We both laugh to our hearts content, knowing we’d bot h been there several times before, through different routes. “You know, laughter is so much better so metimes, in many times, than crying in frustration… you know?” She continue s, “Seeing that we’re not alone…” “That makes a huge difference!” “Yes! And seeing that y ou’re just a foreigner in your own land! All the time!” Relationships 9/6/73 This is the most difficult time of my life. I am recovering from a stroke, but the progress is going very slowly. I lo st John, I lost my teaching job, and I haven’t the faintest idea on the dir ection that I’m he aded. I’m 22 years old and I’ll be 23, 24, 25, by the time I’ll r ecover. I just can’t afford to waste

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342 those years. I want to be teaching right now, I want to be with John right now, and have everything perfectly planned as before. It can never be, for my relationship with John has changed. I no longer feel I could spend the rest of my life with him. We’re too different. The awful realization I’ve come to is that I’ve centered my world around John. I was sure I was going to marry him. The teaching job was in Ithaca, so we could live together … I hope I recover in less than a year. So I could go on planning my life. My life holds no answer of what’s to become. Life = ?” Barbara’s personal journal entry “One question I had,” I continue, “And if it’s too personal, let me know…” Barbara nods, indicating I could go on. “How did you feel you had to redefine your relationships? You were just engaged when you had your stroke, right?” “Yeah…” She answers. “W ell, you know… It’s not redefine it’s going on … My… fianc, who was terribly insecure… even though he was a pre-vet student at Cornell, and gorgeous, you know? Hmmmm…. He was terribly jeal ous. So… it turned out I had to break up with him. When my ex -boyfriend came to town, to see how I was, he was very jealous! So… I had to have courage to br eak up. And… ju st go on! And meet new people, which I had no difficulty doi ng, with or without sp eech! So that’s the way I was!” She pauses for a brief moment and then continues. “When I went out, about five months into my recovery, from Altoona to Ithaca, to… live my life again, alone, away from my parents… I broke up with him. And… had

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343 moments of depression… because very frustr ating not being able to talk… hmm… but, I think that… just got through th at I had to prove on me, agai n, the spirited, courageous woman that never says ‘I can ’t!’ So it’s not in redefini ng relationships… it’s just… inventing new ways to connect with each other.” “Did you ever hmm… get in touch with him, years later, after everything?” I ask. “No, you know, I haven’t had the curiosity, and there were so many other men!” I laugh, delighted by her straightforw ardness. We both laugh together. “No, true! You know? There’s been so ma ny other people, I forget, you know? Whoever I dated, you know? But… You know, and one thing is, I had to have people say to me ‘you’re incredible, you’re the most beautiful woman I’ve ev er met’ to me, and giving me self-confidence. So… I’d say that I had to redefi ne my image, OK? In selfconfidence… In just… I had to have people, and men especially, tell me, that I was incredible!” “I think every woman needs that!” “Especially at 21!” “Hmm hmm!” “And so I did! And one by one, I got my self-confidence back.” Professional life and Dharma I finished 1974 in Ithaca, going on to earn a masters degree in speech communication at Pennsylvania University. I was aphasic all through graduate school, and my thesis was on this subject. It was quite a struggle,

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344 but I had many wonderful people to help me along the way. In fact, my committee chairman’s family edit ed and typed my paper for me … The next summer, while visiting a fr iend in New Mexico, we magically founded a camp for teenagers with head trauma. I developed and codirected various programs during th e next five summers for these young adults. That helped me realize what I was destined for. I wanted to be of service to others in similar situations. I then entered New York University’s Graduate School of Reh abilitation Counseling, and became a professional in this field. For the past 11 years, no matter how many clients I ha ve counseled, and regardless of their physical disabiliti es, we have discovered new ways of adapting, adjusting and finding a fuller self. In doing that we brought independence, fulfillment, and dignity to our lives. In my private practice, workshops, and position with the NSEI [National Stroke Medical Institute at Columbia Presbyterian Medical Center], I have had the privilege of knowing m any courageous people, who despite their physical disabi lities are tremendously enabled in spirit. Barbara Newborn, Return to Ithaca. “What made you decide to become a counselor, working with folks who had had traumatic brain injuries (TBI)?” I ask. “Well, I thought the only way to cure m y… not cure, but to ge t better my aphasia was to go back to school. So I went b ack to school and got one MA in Speech Communication, and then ten years later I got another MA in rehab counseling. And…

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345 you search and search for what you can do. And I narrowed it down, because I still was insecure as to full body people. I couldn’t type, I couldn’t be a waitress, you know? There’s so many things I could not do that the things I could is… working with people. So… This happened after three da ys of retreat, being silent. Going to upstate New York, I met someone who was an occupational therapis t in one of the hospitals in New York, so she told me about the schools, and then it happened that… It just happened, where I called the school [University] th at day, got an interview, and they said I’m in! So in a month, I had to write the outline of my book, I had to… Go head a camp for head injury… And… I had to finish up what I wa s doing, pack, and go to New York to live and to NYU, in rehab counseling.” “How did you like rehab counseling?” “I really, you know, it was the… I stum bled upon this! It was the thing I loved the most!” “Really?” “Yeah! I think that we’re… You give up, it is when it comes! You’re not looking is when fortune comes! I was always on the search, but I didn’t know what I was looking for, having not had that experience. But then I became a rehab counselor. I didn’t want to do stroke because it meant older people, and I was young. So I did head injury.” “What was it like, working with…” “Head injury? It was delight because of the compassion. I think that it’s just like working with people who have aphasia or younger people who lost their way. And… by talking to them, and by being with them, you both find a new way to be, with the hope

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346 that they can do things, or find the things they want to do. And that happened time and time again.” “That must be very rewarding!” “Well, I think that… rewarding is a word that… it’s… is the only word we use for a great experience, but I was doing my dharma.” Looking at the puzzled look on my face, Barbara explains. “Dharma is cause and effect. Everyb ody has a journey, and everybody has work they are meant to do. And I found my dharma. It was always working with people, being a liaison between the professiona ls and the physically challenged: I was in the middle and I can relate to them both. Now, working with the injured and yoga th erapy, that’s perfect for me too! I found that I only have to create and only have to be, at the right time, the right place. But it will all happen, what is meant to happen, will happen anyway, I just have to be open to it. The thing I like and don’t like in this world is that there are divisions. Stroke – aphasia, professionals – layperson, but we’re all one, and we’re all in the same place. You know? We have to know that we’re not alone. I think it takes patience with your own life, and it takes a ki nd of… confidence and se curity, that you’re going in your journey, and that when things are ripe it will happen!” Overcoming hurdles in the present “Do you ever feel afraid now?” “I have to say… I still have aphasia now, and I’m 53… My memory is not so good… you know? And I… it’s sometimes difficult to remember first names, last

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347 names… What I did yesterday is no pr oblem, but… linguistics is… in putting words together! “There’s a … question about now at my age, in th e “All timers,” and just dementia, hmm… am I going to have? You kn ow? That is… not a real concern, but a question in my mind… When I’m tired… I don’t really focus, and although these are… questions in everybody’s mind… It’s more a concern when you have aphasia then when you don’t. “One of my clients is head injured, so she can’t get insurance because… you know, just there’s a question of she’ll have most likely dementia or Alzheimer’s. And so… I have to remind myself that living in the moment is the best. That I am taking supplements to relieve, to up my intelligence, to up my focus. A nd I don’t know what’s going to happen in the future. You know? Hmm… but it never goes away, you know, that you are aphasic.” Language and Self September 19, 1973 I can’t make any future plans. Just live in the present; trying to get well. At least that’s what my parents expec t me to do. But that’s impossible. I must bring both the past and the future into my li fe. For I live on memories of who I once was so I can become that person again (or better – hopefully). Barbara’s personal journal entry September 28, 1973

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348 I … decided not to lay out my future goals as yet. For when I do I just worry about them, and I feel I’ve got enough to worry about right now. Like getting a lot better for one. So I’m ju st going to get back in touch with Barbara Newborn and find out who she re ally is now: in the present form, in order for her to live on with th e present and the future. And I wouldn’t be surprised if she finds out that she likes herself as much as before. After all, all the way we are to others is th e image we give to ourselves. And I’m going to smile like I used to and really mean it when I do. And laugh and run and shout to the wind, “I’m me and I’m not ready to die! Barbara’s personal journal entry Only when I gave myself permission to grieve for the loss of myself could I go on with the rest of my life. From the day of my stroke, 7 June, my former identity died to make way fo r a more purposeful life. The paradox was that the old me, with all its inte nse wants and desires, was the means for discovering my new fuller self. Barbara Newborn, Return to Ithaca “Looking back, do you feel you are still the same person you were at twentyone?” “You know, in a sense, now from my pers pective in spirituality, in being a yoga teacher, a yoga therapist, you’re always who you are. And you’ve got to redefine that person again, even without langu age. Your soul is always the same, and you operate the same personality. You know, you’re just as st ubborn, or just as nice, just as willful

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349 without language as you were with language! And so you operate on the same conditions, with or without language. You manage… I mana ged to get things without language as I did with language. I managed to make friends without language, as I do with language, because of who I was, underneath. But… th e person feels an unbelievable loneliness and solitude when he is first aphasic, he or sh e. You’re really cut off. I guess that, since everybody else is talking and understanding, you feel te rribly left out. You can’t contribute anything in conversat ion. You can’t even listen right, because sometimes you can’t understand! And it’s terr ibly… You know, unless people have had aphasia, or if like in your situation, working with people w ho have aphasia, it’s a terribly lonely existence, a not-understanding existen ce, where really no one understands.” Grateful for aphasia? “Some people, when I read personal narra tives of people who have had aphasia, they say in a way, that they ’re grateful to everything th at happened. Do you feel that way?” “I don’t know whether I’m grateful…. But… It’s just gentle acceptance…. You know, my life would be treme ndous anyway!” We both laugh! “I don’t doubt that!” “In adventures and unfoldings! You know, I think that… because of my absolute loneliness, and depression, it helped me wr ite a journal, that helped me write a manuscript, that helped me write a book, that helped me help others. But I was in the teaching profession, anyway! I would have been… you know, a really heartfelt teacher. But this happened, so… I dealt with the cards. And in just being real ly realistic, in just

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350 saying ‘Ok, well this happened, what to do ne xt?’ You know, I th ink that… I really appreciate the miracles of life, and I also appreciate the healing.” “I can see that! It’s all over the pl ace” I mention, referring to her home. “But I don’t know what I would have been if this hadn’t happened to me. I probably would be just who I am today anyway, finding another way to do it!” She laughs. “Playing, you know? I think that in my pr ofession, in just dealing with healing yoga, you know, you would deal with so many clients who are ‘normal’ that are depressed, that have no laughter and that miss the nurturing. And so together we form a loving relationship with plenty of nurturing and plenty of fun, and plenty of definition in stepping back, ‘Who are you?’ But… there are so many people, regular people, who are… in their past, you know? Childhood or something that happened to them… not having the happiness… and I really feel that … the joy, with compassion, are very much treasured… and people are looking all over for this!” “I agree…” “Hmm hmm… And, you know, I… I really ha ve many times joy! It’s in me! And compassion… I think that I would have disc overed that, or would have uncovered it every other way too if I didn’t have… but I thin k that I took a faster route” she exclaims and chuckles.

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351 Chapter 11. In Exile in One’s Own Land Moving On “I think that… Once Bob really realiz ed and accepted the fact that he could not go back to work there didn’t seem to be a reason for us to be in Atlanta… We really only had moved there for… for his job… “Really, yeah…” “And we had always talked about coming down here for retirement, so… A couple of years before that, we had started… looking down here, so it was a slow transition… It was a process…” “Right, right…” “It was time to look into starting to build a new life. Like you say, as an immigrant person, there is a point in time where you have to kind of…” “Moving on!” “Move on… And leave that life behind, and build a new life.” Bob and Diane Lombard Same But Different As seen in each of the narratives, the se ven survivors in this project found unique ways of coping with disruption and “moving on” with their lives. Interestingly, several of them reported they were still “the same person” as they “had always been,” several years

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352 after their strokes. This view may not have been concurred by all family members (e.g. Diane in Bob’s story), but it was expressed by most surv ivors, to varying degrees. Interestingly, however, all survivors also acknowledged they have been profoundly changed by the experience of their strokes and their struggles with communication. A conundrum is thus created. How can one be “the same, but different” (as expressed by Bob in one of his interviews)? In revisiting James’ (1910) and Kirmaye r’s (2002) definitions of the self (the “Me” and the “I” as suggested by James and the “transactional” and “adamantine” selves as suggested by Kirmayer), along with the role played by narratives after signif icant life disruption (Becker, 1999), the c oncept of “same and different” is exposed in a different light. Although the “Me” (or tran sactional aspects of the self ) of the seven survivors was disrupted and reconstructed over the years (e.g. changes in body image, reversal and restructuring of family roles, substitution of previous occupations by other vocations and professional aspirations), something in the “I ” (or adamantine self) was perceived by all participants as remaining the same. If narrative is indeed a means of linking th e past, present, and possible future into a fluid and “continuous I,” perhaps the fabric of each individual’s narrative may provide clues as to how each one of them has reconcil ed their presents and their pasts and “moved on.”

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353 Vicki and Larry Although their motivations were circumst antially different, Vicki’s and Larry’s narratives were marked by a common and unify ing thread: their search for restitution (Frank, 1995) and their desire to “fight this disease [aphasia].” Differently than the other participan ts, Vicki and Larry were the only two survivors who made a point of showing the in vestigator their archived homework files. Other participants (e.g. Curt, Tom) vol unteered copies of their Speaking Out! presentations in addition to personal photographs. Vicki and Larry, however, were specific in their offer: they volunteered the documentation of their stamina, endurance, and perseverance in trying to regain their language skills. As pointed out by Becker (1999), “perseverance is a key part of the cu ltural discourse on continuity in the United States.” (p. 151). While Vicki documented her journey on he r calendar as well as on Post-it notes placed on flashcards, indicating when they were first and last used, Larry used a notebook as a journal, in addition to volumes of folders containing his homework, organized chronologically. Both survivors kept a concrete and thorough chronicle of their rehabilitation efforts. However, differen tly from Barbara’s jour nal (which contained several poems and reflections on the nature of her communication difficulties and their implications for her sense of self), Larry’s and Vicki’s chronicles were intrinsically linked to their rehabilitation pr ocess (i.e. Larry’s last journa l entry was linked to his last days in rehabilitation in the hospital; Vicki’s calendar, six months post-onset, contained no more notes). Thus, their do cumentation revealed objective landmarks in their fight for

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354 restitution, as opposed to reflections on the natu re of life with a disability and their struggle for adjustment. In Disrupted Lives Becker (1999) comments on th e importance of routine and structure during the process of re-establishing continuity in one’s life after a significant disruption. As she discusses, “Markers of continuity emerge from life experience and the layers of meaning people attach to their live s over time. Indications, no matter how limited, of the ability to return to activ ities engaged in before the onset of disability are cause for hope.” (p. 151) In some ways, Vicki’s and Larry’s chroni cles reveal a desire to document how continuity and structure were reestablished in their lives. As Vicki stated, her notes and cards are testimony of how she relearned “ever ything;” or, in Susan’s words, how Larry: “had to start with ABC, 1, 2, 3.” In addition to their desire to document th eir recovery, Larry a nd Vicki have other aspects of their stories in co mmon. Both currently have li ttle to no physical impairment as a result of their strokes (Larry has some mild residual weakness on the right side and Vicki never presented with any motor defic its), and both have progressed to a mild severity level in their communication difficu lties. Thus, their sequelae are much less visible than those of other participants. Ho wever, continuous reminders of their history still remain (e.g. both participants need to check their Coumadin levels frequently and Larry needs to constantly watch for any ve getables containing vitamin K; Coumadin restrictions also prevent Larry and Susan fr om traveling as often as they used to). Therefore, although life has been restituted to a large extent, the disruption brought about

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355 by their strokes is constantly acknowledged an d respected, and ever y precaution is taken to prevent such disruption from re-occurring. Bob and Edie Differently than Vicki’s and Larry’s stor ies, Bob’s and Edie ’s narratives are permeated by a thread of disruption and upheaval. Both Bob and Edie were the solid rocks of their families. As an Air Force veteran, an engineer, and “the man in charge,” Bob was a role model for his daughters ( both of whom became engineers) and his younger siblings, as he was the only child in his family to go through college. Edie, on the other hand, had the healing and calming t ouch of a nurse, and was the unifying and sobering element in a marriage permeated by constant change. At the time of their strokes, both Bob and Ed ie were in their fifties and at the peak of their careers (Bob as a CEO Vice-presiden t in Georgia and Edie as an experienced nurse in Florida). When their lives were suddenly disrupted by illness, their whole families plunged into an initial period of chaos, marked by role reversals which collided with life structures which had been develope d over decades. Thus, as indicated by Becker (1999), in Bob’s and Edie’s contexts, not onl y the survivors but also the co-survivors needed to undergo the process of biographi cal reconstruction in order to restore coherence into their lives. In Bob’s case, the stroke afflicted the very core of his identity. He could no longer resume his job due to his language difficulties, and he gradually abdicated from playing the guitar due to the frustration he experience d in trying to use hi s right hand. To the surprise of the other Musketeers, Bob once stat ed his greatest desire was to regain the

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356 ability to play the guitar normally (more so than the ability to speak fluently). As a spouse, however, Diane witnessed Bob’s lack of motivation and str uggled to reconcile the Bob of the past (a “go-getter”) with the B ob of the present. As a result, their views on recovery and change, as portrayed in their narratives, were in sharp dissonance (“me, 90 degrees – Diane, 180 degrees ” as Bob expressed). Becker (1999) once indicated that for so me individuals, “continuity depends on the fulfillment of a specific role that is key to their self-definition; the loss of that role may prevent the reestablishment of a sense of continuity.” (p. 152). In some ways, the job and the music connected Bob not only to his immediate past a nd self-image as an adult, but also to his family roots. As he stated in his narrative, his father was “the work,” and his mother was “the music.” When those two cherished elements of his life were sequestrated by his stroke, the pain was proba bly too much to endure (or to motivate him to change). Thus, if viewed from within th e context of his life history, Bob’s “lack of motivation” acquires different meaning. It was only by grappling with (and accep ting) the irreversib le changes brought about by his stroke (as Diane expresses in the beginning of this chapter) that Bob was able to re-establish a new sense of coherence into his life. As he stated, key elements in his transformation included: being able to driv e again (his greatest mo ment of hope, as he stated, was when he stepped on the accelerato r, several months after his stroke) and establishing new friendships (the Musket eers, the aphasia groups, and volunteering at nursing homes). In Diane’s view, however, the present and the past still remain disconnected, and longing and yearning for the “Bob of the past” still remain.

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357 In Edie’s narrative, the disruption br ought about by her stroke had wide repercussions throughout the foundations of her family. As her husband experienced a psychological breakdown due to his difficulties in coping with the demands of becoming a caregiver, Cathy (Edie’s daughter ) was gradually confronted w ith facets of her father’s past, which had remained largely disguised under the semblance of personal eccentricities until that point. Thus, disruption was experien ced on two different fronts: by Edie, on the one hand (as a stroke survivor) and by Ca thy on the other (as a daughter suddenly confronted with unknown facets of her family’s past and as a caregiver for her mother). With Cathy’s support, Edie was able to make the life adjustments she deemed necessary at that stage in her life. Pragmati cally, she not only opted for a divorce, but also opened herself to the discovery of a new voca tion: painting. As Edie has expressed in her narrative, painting (and attendi ng her painting classes) gave her a space where she can be centered, focused, and in control, which are feelings she also experiences when she has the opportunity to sail, a sport she has always loved. Cathy, on the other hand, is more emoti onal about the changes her family has undergone. When the investigator read the draf t of “Light Bulb” to mother and daughter together, it was Cathy who had her eyes full of tears, while Edie sat strong by her side. Thus, in Bob’s and Edie’s narratives, wh ile survivors have managed, in their own terms, to reorganize their life histories and reestablish a sense of continuity with their pasts, their family members (even years after the onset of their loved ones’ strokes) still struggle with the task of bridging their pa sts and presents into a seemingly coherent whole.

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358 Tom In Tom and Erika’s story, two elements have played a central role in establishing continuity and coherence to the self after the onset of illness: the nurturing of their love for each other and their strong religious upbringing. Differently than most other participants in this study, who either maintained a lo ngstanding relationship or experienced a marital disruption after the ons et of their illnesses, Tom and Erika got married a few years after Tom’s stroke. As a result, th eir roles as husband and wife developed concomitantly with their iden tities as survivor and co-survivor. As they faced the challenges and life adjustments brought about by Tom’s stroke, both partners constructed, nurtured, and incorp orated aspects of th eir identities which they had been previously unaware of. In f act, as both stated in their story, their commitment to each other, instead of weak ening, deepened significantly during periods of great stress. As stated by Erika, “If you had told me this was gonna happen, I don’t know that he would have been able to handle it…. plus I didn’t really know him… I knew him, but for one year and a half befo re, but we were onl y together as a couple for a few months… So… I didn’t know that side of him, but I didn’t think that he would have been this strong… I mean, now he’s just like… super strong! He has his moment s, but his determination is just incredible…” The mutual admiration they devoted to each other prompted them into a journey of discovery of their selves through the eyes of the other, almost as reflections on a mirror which became clearer and less foggy as the years progressed. As a result of this

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359 journey of discovery, threads of continuity w ith their pasts were reconnected, and a solid foundation, based on mutual knowledge and respect, was laid for their future. The second source of their strength was their religi ous upbringing and faith. As Erika recounts, it was only after calling her mo ther and being told “ how to pray and what to ask God for” that she felt certain that Tom would survive and r ecover. Currently, as both partners carry on with thei r lives and intone their mant ra (“God provides”), hope is continually renewed in their quest for improvement and adaptation. Curt and Barbara Quest stories meet suffering head on; They accept illness and seek to use it. Arthur Frank As one approaches Curt and Barbara’s narr atives and contrasts them with those of the other five survivors, a different perspectiv e into the world of disability and illness is attained. Although hope for recovery remains present in their stories, it no longer occupies the foreground (Frank, 1995). Instead, their search for rene wal and change has taken the front stage. The manner in which they have delineated their journeys is intrinsically and personally different. However, in both stories, the wounded storyteller, as presented by Frank (1995) is strongly present. In Barbara’s narrative, what was once pa in and sorrow was transformed into a path of healing and recovery for herself as well as other survivors. As a counselor and yoga instructor for individuals with disabi lities, Barbara Newborn has explored the depths of her strengths and limitations, and has used them as healing instruments in

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360 reaching out for others who may have been engulfed by the limbo of their own transitions. Although she may have followed a si milar path with or without a disability, Barbara insightfully acknowledges that the st roke provided her with a faster (though more painful) route. In Curt’s narrative, the reader is confront ed with a survivor w ho, after a period of silent waiting and withdrawal, started to wo rk towards becoming a motivational speaker. In some ways, his desire to understand his own weaknesses and transform them into strengths has been a thread woven throughout the fabric of his biography. In attempting to overcome his shyness, he became a university instructor; in confronting his addiction to alcohol, he became a counselor; in reco vering from the effect s of his stroke and aphasia, he has challenged himself to beco me a motivational speaker. Possibly, at this stage, one additional goal he has posed to himself (perhaps not quite as explicitly) has been to become “a good father and husband,” as he constantly strives to make his spouse proud and gain the praise and respect from hi s children. Thus, in some ways, the stroke may have been a catalyst for change for th e Mathes family as a whole, where issues which had remained buried under years of disappointments and unspoken hurt were gradually unearthed, brought to the surface, and addressed. Moving Out of Exile In “Talking to ourselves: dialogues in and out of language,” Black and Ireland (2003) discuss the similarities between their ex periences as a foreigner (Black) and as an individual with aphasia (Ireland). As stated in their initial remark s, “Sometimes Maria [Black] feels in limbo – between two languages. Sometimes Chris [Ireland] feels like she

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361 is in a foreign language that she can’t qu ite grasp.” (p. 21) Th eir observations are concurred by Barbara Newborn in Return to Ithaca who states that having aphasia is, in many ways, akin to being a “stranger in a strange land.” (Newborn, 1997) As one revisits the narratives of the seven participants, the parallels between being a foreigner and having aphasia ma y extend beyond the linguistic realm. The similarities are in fact greater when the experience of “foreignness” is embodied in the form of exile. According to Skultans (2004) exile constitutes “an unwanted separation from a place one is no longer able to inhabit. As well as physical separation, war and loss, desire and longing serve to construct exile as a moral space characterized by absence.” (p. 295). Thus, for many individuals in exile, th e only connection to their homelands and their pasts is their crystallized memories, as they remain frozen in time (Skultans, 2004). In many instances, it is only after re-visiting their home countries th at several individuals are first confronted with the reality that not only have their homela nds changed, but also their transactional selves of the past and present are no l onger in agreement. As stated by Skultans (2004), “Earlier stories [of exile] spoke of a golden past a lonely and disconnected present and a future return to the homeland. Contemporary stories [after revisiting the homeland] speak of a s earch for a missing past and a return to the safety and predictability of … [the host country].” (p. 306). In many ways, the experience of living w ith aphasia also involves the disruption of current routines, the crysta llization (or id ealization) of the past (as suggested by Brumfitt, 1993), and the gradual realization that “life goes on.” However, for many

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362 survivors this realization only takes full effect after the past is revisited and a thread of continuity is envisioned between the memories of the past and the reality of the present. Establishing this thread of conti nuity without language, however, may be especially challenging (both for individuals wi th aphasia as well as persons in exile, if they are not familiar with th e language of their host count ries). In discussing her experience as a Latvian child living in exile in England during the late 1940’s and 1950’s, Skultans (2004) stated that “A central problem for refugees is communicating and sharing a credible past. The present is meaningless unless it can be seen as connected in some logical way with what precedes it.” (p. 300). In most cases, speech and language pathol ogists (as well as other rehabilitation professionals) working with individuals with aphasia have little to no information regarding who the indi viduals they are work ing with truly are. What have they experienced in their pasts? What were thei r life-histories until the moment of their strokes? What were the turning points in th eir lives? How much disruption has the sudden onset of their disability brought onto them and their families? In most cases, as pointed out by Black and Ireland (2003), most individual s (and therapists), wh en confronted with disruptions in language, tend to feel obligated to correct surface or st ructural errors (i.e. pronunciation or grammar), even wh en these corrections result in little to no difference in the content of their messages. As Black and Ireland (2003) state in their candid question, “If people knew what I am trying to say well enough to correct, w hy bother?” (p. 25) Is there a space within the field of speech and language pathology, for the incorporation of personal storie s into aphasia therapy? If s o, what would that entail?

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363 Chapter 12. Where do we go from here? Conclusion In discussing his experience as an indi vidual with aphasia in speech and language therapy, Alexander (1990) commented that “A major barrier to gaining insight into the aphasic’s condition is the reductionist approach to the ‘teaching’ of aphasics… In these reductionist conditions, the aphasic gra dually begins to believe he is dim-witted, that he is treated as what he really is Since the ethos of the bureaucratic institutions encourages belief and de pendence on the medical system, and since rebellion is not generally approved of, the average aphasic under this kind of stress, with no means of arti culate protest, is under constant pressure to accept that he is, indeed, stupid. It is no wonder then that some patients give up the attempt to rega in language. A vegetable has been created.” (p. 8 9) This statement may shock several pract icing speech and language pathologists. Causing this level of disappointment and fr ustration in patients is certainly not the intention of any professional working in the field. However, one cannot but wonder if at times clinicians do not have the awkward sens ation that this statement may be painfully true. Dealing with the emotional turmoil a nd anguish experienced by the patient during rehabilitation may not be as comfortable as addressing specific components of their

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364 speech and language impairment. Why is that, however? Why are clinicians, in so many instances, afraid of opening Pandora’s Box? The roots to this dilemma may lie in part within the structure of our professional education in the United States. In discussing the differences be tween social vs. traditional approaches to rehabilitation, Sarno (2004) stated that “… the abandonment of a medical model calls for a major shift in the underlying bases of the trai ning of aphasia clinicians If we adopt a social model, the academic curriculum will n eed to incorporate a far greater emphasis on the social sciences, soci ology, and psychology than it does at the moment. It will perhaps even include some supervised clinical practice in counseling. A social model calls for a revision of intervention practices away from the traditional focus on static, non-interactive techniques intended to repair the langua ge deficits manifest in aphasia, to approaches that acknowledge the social interactive basis of hu man relationships.” (p. 26). Changes in rehabilitation paradigms certa inly do not occur overnight. However, how many practicing clinicians believe there is a need for change in the first place? Little research has been done within the U.S. re garding how speech and language pathologists interpret their role in therapy and the differences that may exist between their perceptions and those of clients. In a powerful essay abou t his experience as a su rvivor, Clarke (2003) indicated that “It was … the quality of the relations hip between myself and the speech therapist that I was to learn from. A qua lity that was just not present with

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365 other therapists. This was greatly e nhanced by these sessions being on a one-to-one basis. It would be gratif ying to hear her door close and know the focus for the hour was on improvi ng my communication. I had quickly realized that my time with her was all-important. It was not surprising then that it was to her I brought all my fears.” (p. 82) What beliefs and values do speech and la nguage pathologists pass on to clients during therapy? Do we transfer the responsibil ity of recovery mostly to their shoulders? (Becker & Kaufmann, 1995). Do we encourage narratives of restitution? (Frank, 1995) Who are the clients we labe l as “de-motivated”? (Becker & Kaufmann, 1995). Do we often take a role of authority during ther apy? Are we open to ne gotiating the terms of therapy with clients? Since some aspects of th e self are defined duri ng social interaction, what role is played by clinicians during the client’s narration of the self after illness? How do clients portray therapists after their rehabilitation? In comparing clinician and client views, another possible follow-up for this study may include the comparison of clinician reports with client narratives. How is experience registered within the two discourses? What are their points of contact? Where do they diverge? What do these textual discourses reve al about the perceptions of the client and the clinician? Additionally, the current study was conduc ted only with individuals who were years post-onset and had a highly functional level of communication. What is, however, the progression in the changes of the transactional and adaman tine selves from acute care to the chronic stages? How do individuals (and their families) change their perceptions

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366 over time? What happen to individuals w ho do not regain much of their language functions? What is the experience of their families? Finally, during this project all individuals revisited their life-histories several years after the onset of their strokes. What would be the effect, however, of developing these narratives during the process of reha bilitation (e.g. during ou tpatient therapies)? Pound et al (2002) have writte n extensively on the use of life-history portfolios with individuals with aphasia, w ithin the context of therapy, but no studies involving their development and use have been conducted with in the United States (see refer to the appendix for an example of a life-history port folio developed with a patient at the James A. Haley VA Hospital in the spring of 2005). Given the nature of this project, all narr atives and descriptions are particular to each individual survivor and their families. Thus, findings may not be “generalized” in the traditional sense of the word. However, it is hoped that by reading or listening to the narratives of these seven survivors other indi viduals with aphasia (and their families) may find hope, inspiration, or solace as th ey carry on with their journeys.

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367 References Alexander, E. (1990). “Aphasia – The Worm’s Eye View of a Philosophic Patient and the Medical Establishment.” In Diogenes 150, summer, pp. 1-23. Becker, G. (1999). Disrupted Lives: How People Crea te Meaning in a Chaotic World. Berkeley, CA: University of California Press. Becker, G. (1994). Age Bias in Stroke Rehabilitation: Effects on Adult Status. Journal of Aging Studies, (8) 3, pp. 271-290. Becker, G. & Kauffman, S. R. (1995). Managi ng an Uncertain Illness Trajectory in Old Age: Patients’ and Physician’s Views of Stroke. Medical Anthropology Quarterly New Series, 9 (2), pp. 165-187, Black, M. & Ireland, C. (2003) Talking to ourse lves: dialogues in an out of language. In Parr, S., Duchan, J., & Pound, C. Aphasia Inside Out: Reflections on Communication Disability Berkshire, UK: Open University Press. Boazman, S. (1999). Inside Aphasia. In: Corker, M. & French, S. (1999). Disability Discourse Philadelphia, PA: Open University Press. Brumfitt, S. (1993). Losing your sense of self: what aphasia can do. In Aphasiology 7 (6), pp. 569-575. Bruner, J. (2002). Making Stories: Law, Literature, Life New York, NY: Farrar, Straus and Giroux. Bruner, J. (1990). Acts of Meaning Cambridge, MA: Harvard University Press.

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368 Bruner, J. (1987). Foreword. In Luria, A. R. (1987) The Mind of a Mnemonist Cambridge, MA: Harvard University Press. Corbin, J. & Strauss, A. L. (1987). Accomp animents of Chronic Illness: Changes in Body, Self, Biography, and Biographical Time. Research in the Sociology of Health Care 6, pp. 249-281. Cunningham, R. & Ward, C. D. (2003). Ev aluation Of A Training Programme To Facilitate Conversation Between Peopl e With Aphasia And Their Partners. Aphasiology 17 (8), pp. 687-707. Damasio, A. (1992). Aphasia. New England Journal of Medicine, 326 (8), 531-539. Damico, J. & Simmons-Mackie, N. (2003) Qualitative research and speech-language pathology: A tutorial for the clinical realm. American Journal of Speech and Language Pathology 12, pp. 131-143. Damico, J. S., et al. (1999). Qualitative Methods In Aphasia Research: Basic Issues. Aphasiology 13 (9-11), pp. 651-665. Denzin, N. K. & Lincoln, Y. S. (2000) Intr oduction: The Discipline and Practice of Qualitative Research. In: Denzin, N. K. & Lincoln, Y. S. (eds.) Handbook of Qualitative Research. Thousand Oaks, CA: Sage. DeWalt, K. M. & DeWalt, B. R. (2002) Participant Observation: A Guide for Fieldworkers. New York, NY: Altamira. Ellis, C. & Bochner, A. (2000) Autoethnography, Personal Narrative, Reflexivity: Researcher as Subject. In Denzin, N. K. & Lincoln, Y. S. (eds.) Handbook of Qualitative Research. Thousand Oaks, CA: Sage.

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369 Ellis, C. & Ellingson, L. (2000). Qualitative Methods. In: Borgata, E. F. & Montgomery, J. V. (eds). The Encyclopedia of Sociology, pp. 2287-2296. Macmilan. Frank, A. (1995). The Wounded Storyteller: Body, Illness and Ethics. Chicago, IL: The University of Chicago Press. Herrmann, M., Johannsen-Horbach, H., & Walle sch, C. W. (1993) Empathy and aphasia rehabilitation – are there contradi ctory requirements of treatment and psychological support? In Aphasiology 7 (6), pp. 575-579. Hinckley, J. J. (in press). The piano less on: An autoethnography about changing clinical paradigms in aphasia practice. Hinckley, J. J. (2002). Models of Language Rehabilitation. In: Eslinger, P. J. (ed.) Neuropsychological Interventions: Clinical Research and Practice. New York, NY: The Guilford Press. Holland, A. L., Beeson, P. M. (1993). Finding a ne w sense of self: what the clinician can do to help. In Aphasiology 7 (6), pp. 581-584. Holland, A. L. (1982). Observing Functi onal Communication In Aphasic Adults. Journal Of Speech And Hearing Disorders, 47, pp. 50-56. Holland, A. L. (1980). Communicative Abilities in Daily Living: A Test Of Functional Communication For Aphasic Adults. Baltimore, MD: University Park Press. Ireland, C. (1990). “I’m not mad – I’m angry.” Nursing Times, 86 20. James, W. (1910). The Self. In: Gordon, C. & Ge rgen, K. J. (eds.) (1968). The Self in Social Interaction. New York, NY: John Wiley & Sons, Inc.. Kaufman, S. (1988) Illness, biography, and th e interpretation of se lf following a stroke. Journal of Aging Studies 2 217-227.

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370 Kauffman, S. & Becker, G. (1986). St roke: Health Care on the Periphery. Social Science and Medicine, 22 pp. 983-989. Kirmayer, L. J. (2002) The refugee’s predicament. Evolutionary Psychiatry 67 pp. 724742. Kleinman, S., Copp, M., & Henderson, K. A. (1997). Qualitatively Different: Teaching Fieldwork to Graduate Students. Journal of Contemporary Ethnography, 25 (4), pp. 469-499. Kopit, A. (1978) Wings New York, NY: Hill and Wang. LaPointe, L. L. (1999). Adapta tion, Accommodation, Aristos. In Aphasia and Related Neurogenic Disorders New York, NY: Thieme. LeDoux, J. (2002). Synaptic Self New York, NY: Penguin Books. Lindlof, T. & Taylor, B. (2002). Qualitative Communication Research Methods Thousand Oaks: CA, Sage Publications. Lindsay, J. & Wilkinson, R. (1999). Repair Se quences in Aphasia Talk: A Comparison of Aphasic-Speech And Language Therapis t and Aphasic-Spouse Conversations. Aphasiology, 12 (4/5), pp. 305-325. Luria, A. R. (1968) The Mind of a Mnemonist. New York, NY: Basic Books Inc. Lyon, G. J. Et al. (1997). Psychosocial Well-Being Index (PWI) in Communication Partners: enhancing partic ipation in life and communication for adults with aphasia in natural settings. Aphasiology, 11 (7), pp. 693-708. Newborn, B. (1997). Return to Ithaca. Rockport, MA: Element. Newborn, B. (2002). “Disability, Yoga, and Transformation” in International Journal of Yoga Therapy. 12, pp. 1-12.

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371 Parr, S. (2004). Living With Severe Aphasia: Th e Experience Of Communication Impairment After Stroke. York, UK: Joseph Rowntree Foundation. Parr, S. (2001). Psychosocial aspect s of aphasia: W hose Perspectives? Folia Phoniatrica et Logopaedica 53 266-288. Parr, S (1994). Coping With Aphasia: Conversations with 20 Aphasic People. Aphasiology 8 (5), pp. 457-466. Parr, S., Byng, S., Gilpin, S., Ireland, C. (1999). Talking about aphasia: living with loss of language after stroke Philadelphia, PA: Open University Press. Parr, S., Duchan, J., and Pound, C. (2003). Aphasia Inside Out: Reflections on communication disability Berkshire, UK: Open University Press. Parr, S. (2001) Psychosocial Aspects of Apha sia: Whose Perspectiv es? Folia Phoniatrica Logopaedica, 53, pp. 266-288. Pound, C. (2004). Dare to Be Different: The Pe rson and the Practice. In: Duchan, J. F. & Byng, S. (eds.) Challenging Aphasia Ther apies: Broadening the Discourse and Extending the Boundaries. New York, NY: Psychology Press. Pound, C. et al (2002). Beyond Aphasia: Th erapies for Living with Communication Disability. Oxon, UK: Speechmark. Richardson, L. (2000). Writing: A Method of Inquiry. In: Denzin, N. K. & Lincoln, Y. S. (eds.) Handbook of Qualitative Research (2nd edition). Thousand Oaks, CA: Sage. Sacks, O. (1985). The Man Who Mistook His Wife for a Hat, and other clinical tales. New York, NY: Harper & Row. Sacks, O. (1995) An Anthropologist on Mars. Vintage Books, New York, NY. Sacks, O. (1998). A Leg to Sta nd On. New York, NY: Touchstone.

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372 Sarno, M. T. (2004). Historical Perspectives Moral Imperatives. In: Duchan, J. F., Byng, S. (eds.) Challenging Aphasia Ther apies: Broadening the Discourse and Extending the Boundaries. New York, NY: Psychology Press. Simmons-Mackie, N., et al. (2002) What is aphasia? Results of an international survey. Aphasiology, 16(8), pp. 837-848. Simmons-Mackie, N., Damico, J. S. & Dami co, H. L. (1999). A Qualitative Study Of Feedback In Aphasia Treatment. American Journal of Speech-Language Pathology. 8 pp. 218-230. Simmons-Mackie, N. & Kagan, A. (1999). Co mmunication Strategies Used By ‘Good’ Vs. ‘Poor’ Speaking Partners Of Individuals With Aphasia. Aphasiology, 13 (910), pp. 807-820. Simmons-Mackie, N. (1998). A solution to the discharge dilemma in aphasia: social approaches to aphasia management. Aphasiology, 12 pp. 231-239. Simmons-Mackie, N. & Damico, J. S. ( 1997). Reformulating The Definition Of Compensatory Strategies In Aphasia. Aphasiology, 11 (8), pp. 761-781. Simmons-Mackie, N. & Damico, J. S. (1996). The Contribution of Di scourse Markers To Communicative Competence in Aphasia. American Journal Of Speech-Language Pathology, 5 pp. 37-43. Skultans, V. (2004). Narratives of Disp lacement and Identity. In Hurwitz, B., Greenhalgh, T., & Skultans, V. Narrative Research In Health And Illness. Malden, MA: Blackwell Publishing. Wahrborg, P. (1991). Assessment & Management Of Em otional Reactions To Brain Damage & Aphasia. San Diego, CA: Singular.

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373 White, S. C. (2001) Health Care Legislati on, Regulation, and Financ ing, in Lubinski, R. & Frattali, C. (eds.) Professional Issues in Speech-Language Pathology and Audiology. San Diego, CA: Singular. Wiener, C. & Dodd, M. (1993). Coping amid Uncertainty: An Illness Trajectory Perspective. Scholarly Inquiry for Nursing Prac tice: An International Journal 7 pp. 17-31. Wolcott, H. F. (1999). Ethnography: a way of seeing. Walnut Creek, CA: AltaMira Press. Young, K. & Saver, J. L. (2001). The Neurology of Narrative. SubStance 94/95 pp. 7284.

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374 Websites National Aphasia Association. (1999, June 22). Aphasia Fact Sheet. < Accessed June 21, 2005, http://www.aphasia.org/NAAfactsheet.html >

PAGE 389

375 Appendix: Mr. Johnson’s Life History Portfolio

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376 My Childhood Grandma Fritz’s doll Paul, the mechanic The Youngest Eagle Scout

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377 My mother took this picture. I can still remember the smell of my doll. My mother’s mother made it for me. Grandmma Fritz.

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378 The mechanic! My father, my older brother Hank, Donnie, and Paul, the mechanic! Paul – probably 2 years old.

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379 Article in the paper. You have to be 12 years old to be boy scout. 14 years old: Eagle Scout Youngest Eagle Scout on the Gulf Ridge Council.

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380 I had lifeguard training at the Aquatic Club, East side of the river, Lowry Park. There was a spring that they had walled off. It was a natural spring. It was 3 pools. Way before there was a zoo… It was a big picnic area. Tin can tourist camp. This is what they used to call. Hank and I was boxing. I had 3 rounds and I was little. We put on huge boxing gloves and three rounds and we have 25 cents prize! My

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381 brother was 5 rounds and he got 75 cents! Boy Howdy! The tourist club sponsored it. It was fun!! After fighting, we jump in the spring – cold!! It was nice! That was fun, yeah! I was lifeguard at the girls and boys camp. It was a sacrifice, but someone had to do it! I remember the girls camp better! George Beakley and Me had a cabin together at the girls scout camp. Boy Howdy! The sponsors

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382 of the girls would coming on and “Soup on”!! 2 weeks! Boy Howdy! Good vacation, hard work! George got into the submarine service and was killed in the war.

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383 The Navy R.O.T.C. The Square Knot Admiral & Boot Camp WWII Brothers in Guam

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384 1st lieutenant in R.O.T.C. Jefferson High School. I was in 11th grade. In 12th grade, I was captain of R.O.T.C. 1 start = 2nd lieutenant 2 starts = 1st lieutenant 3 starts = captain.

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385 Boot camp: Because of R.O.T.C. I was leader of my boot camp group. They called me The Square Knot Admiral.

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386 Classmate of mine from high school! That was boot camp and he was stationed next to me in boot camp. His father was a minister and he was a minister and he became a

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387 minister, too! On the 60th class reunion – I had an address, but I never got an answer from him. He may have deceased. But I tried. Look at his boots! Good for BOOTcamp! And no hair! He used to have wavy hair – all out! My best friend Bunky was in the same group. I had to appoint him mail orderly! That way he did not have to stand watch.

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388 This was the first trip I made in Honolulu.

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389 This is invasion money used in the Philippine Islands. We have to save our cigarettes (we could buy as much with cigarettes as we could with money!) China, and Japan, boy, howdy!!

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390 We could have only 2 packs of cigarettes. And 1 of them open! But we would put them in our socks, everywhere, to have more to bargain! I bought a kimono (beautiful!!) and silver chopsticks with cigarettes! They don’t eat with silver chopsticks, that was tourist… My bathroom, my Mamma… I brought her one… It was beautiful (one kimono) One for Mamma and one for Janete (my sister in law).

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391 My brother, Japanese rifle & bayonet… and I don’t know what happened to that… I had this Bougenville Island (that’s where I got the rifle and bayonet). Japanese were POWs at the time and they had to get rid of their weapons. That’s how we got the rifle and bayonet. I don’t know how many Japanese (lots of them, though). The rifles, and the bayonet, and samurai swords… and all the

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392 weapons, all that, put them in a pile. And that’s how we got them. How did I bring it home? I had a seabag, I had my clothes and I stuffed my weapons in there. The battleships, 16 inch guns… and we were having to shoot and and the you could just feel it, when things would shoot (the noise, you could feel it in your body!) No wonder now I wear hearing aids!

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393 McNeal was in the quartermasters with me. He is lying on the ready box (box of ammunition of the 20 mm guns!) He was the one who had liberty on the boat and he phoned my brother in Guam.

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394 I was going to check on Don when I was on liberty, but McNeal helped me do it earlier. I knew my brother would be in Guam with the 34 Engineer Divison. Oh, boy howdy! This was our ship in Guam. My brother was in Guam and took the picture. My brother had 2

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395 days, and I had duty on the ship. My brother took the wa ter taxi and came onto my ship! I had taken a bath, and my buddy said “You have to see the dog face on your ship! I think it is your brother!”

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396 I had the towel on me, and I went up the quarter deck and gave him a hug! The officer of the day said “What the hell are you are you doing in my ship?” But I didn’t care!! “He’s my brother!” I had to take him off to the chaplain, and my brother was on the ship all the night! We had liberty next day, so we went ashore! Landing Craft Vehicle and Personnel (LCVP) Put the

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397 ramp!! My brother took the picture from the LCVP! My brother took a picture of me holding a beer. You can see my ship in the back in Apra Harbor in Guam.

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398 My boat division! Officer of the Division Ernie Pyle

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399 We had 4 boat divisions. We had 2 boats in the whole ship that kaput! All the men in my crew survived! The crew of the boat (LVST): Motor mach (working in the engines) Bow Hook Stern Hook Coxswain – Myself and all the men with (Good men – Macho!)

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400 This one Louis Wyss and me on the ship. He was shipmate and he was New York, but he was a motor mach

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401 on the ship. He kept me from getting a tattoo! (I am ever so grateful to him, says Ms. Betty!) I was only 18, he was 21 or 22. He was already married. We have been friends for life. We still see him. He moved to Indian Rocks Beach and he had a motel. *** Don and I had a boat, a sailboat. We built it. I was probably 15. It was on Lake Carroll.

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402 At the time it was called horseshoe lake! Now it is Carrollwood. Before it was only woods, nothing but woods!

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403 The war was ended, and I was quartermaster (Don took the picture). I was the helmsman of the A-1 condition (when they were entering or leaving the port). There were several other helmsman. In the ship I did not do it.

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404 You could not tell on there, but in the picture it is turned off! I was just posing… The compass was right in front of me (see arrow). I was a good helmsman! I had lots of training! We had to give way to the Japanese hospital ship, the war was over.

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405 After the War University of Florida Fraternity Delta Chi Falling in Love Munchkins

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406 1947, University of Florida. Fraternity Delta Chi. I had GI bill to go to college. Forestry and Game Management. I met Mrs. Johnson there… This one (see arrow) was dating Betty. And I took her away!!

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407 He was lackadaisical. My father-inlaw called him “a hairpin.” Ms. Betty’s dad was afraid Betty would marry the hairpin instead of me. He liked me better! He was my friend! We went to high school together and we went into the Navy. He went into the Navy 2 or 3 months after Bunky and I. He had some kind of spine inflammation and spent a long time in the hospital.

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408 I think he never saw active service! He had a medical discharge. His name was Frank. He was undecided. We went fishing together and I was asking him what his intentions to Betty. “What is your intention to Betty?” “I don’t know” “Boy Howdy, I was going to tell you, I was going to marry her!”

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409 And so I did!! But 2 or 3 years later!! Anyhow, here are my 2 girls, my 2 daughters. Linda and Debbie, 2 and 4 years old

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410 Linda and Debbie all grown up! And well educated!

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411 My Mom said, he was good at fishing, but Betty was the best thing he ever caught.

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412 My family in 1956. It was a family reunion. My mother and father My brothers Hank and Don and their wives My wife and I holding Debbie

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413 And all the little munchkins! Now the munchkins are: Teacher Physician’s assistant Lakeland – air conditioning business Cabinet shop Surveyor a lot of land + an island! Eye doctor Caterer Policeman (Tampa)

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414 The munchkins grew up and did well. Don is my middle brother. He is sharp, he can make anything! He was an engineer in a telephone company. All of Don’s children can make anything! Hank is my oldest brother. He has 5 B.S., 3 Masters. But he has no Ph.D. He was working for the government after the war.

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415 He was paratrooper during WWII. He had 25 missions over Europe in a bomber. He was in Luzan and I was in Manila. But I didn’t know he was there! He was a teacher after the war. He studied all of his life. Agriculture, Agronomy, Economics, etc. He and his wife have a big farm. G.I. bill, he had on the farm training, and he was the teacher!

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416 He had the airplane and he had to fly to the farms because the farms were too far apart. He had a heart attack in 1960 and he stopped flying. He started to teach and moved to St. Paul.

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417 Archery & Championship

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418 From the archery club 1959 Championship in Florida. The side of the cap – many medals. I started in the Boy scout. I taught archery to boy scouts, too. I joined the Archery club in 1952. President of Archery club 2 times. I taught archery in the parks of Tampa 1 year. Fraternity brother had the championship and I beat him! I got

PAGE 433

419 the championship! That was good! He was in the tournament that I beat him! State champion tournament in Lakeland, Florida. I had back surgery and I had to stop archery. I had to quit archery. Good while it lasted! And I got the championship!

PAGE 434

420 Hunting Expeditions (Minnesota, 1992)

PAGE 435

421 My brothers on a hunting trip. Don and Hank. Don did not care to hunt, so he took a camera. He was filming everything! That was Minnesota, 2 miles to Canada. My brother Hank, he was after the war, after WWII, he had to go to North Dakota and Minnesota! He loves it! His wife is from North Dakota. She was the secretary of Senator Langer of North Dakota.

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422 My brother and sister in law met in Washington, D.C. I think that was in the apartment house. The Florida house! That’s what it was called! Mary, Hank’s wife, had a stroke too… 10 years ago. They were down here visiting in Florida at the beach, and she just collapsed! We took her to the hospital, and her whole right side was paralyzed, she could not walk, talk… she had aphasia too! They rushed her back to MN and put her in

PAGE 437

423 intensive therapy. Today she is walking and talking just fine! You can only hear a little slurring when she is really tired. Other than that, she is fine!

PAGE 438

424 Hank and Don holding an icicle in front of the cabin. Behind them: Olsen’s cabin. The cabins had kerosene heaters and wooden stoves. It was good! We had a refrigerator but the beer was on the outside – it was cold!!! BRRR!!!! Brother Hank and hunting partner, Mike Ness’ father. He passed away 2 years ago. Good guy!

PAGE 439

425 This was the back door of the main cabin. The name of the cabin was J.O.N.: Johnson Olson (also passed away) Ness (in the picture with orange coat)

PAGE 440

426 The J.O.N. had a trailer. There were 12 men in there! And only 1 bathroom, outside! In the bathroom we had a heater light, like a sun light (to keep us warm!) That was the bag limit of the trip. That was one year. One year have we had 12 deer! This year we had 10. It

PAGE 441

427 was good! Everybody got a lot of deer. No one went home with empty hands! This was one of my 1st hunting trips! Me, brother Hank, Hank’s grandson Mark, and two of Hank’s children, Tommy and Mike. This was from a different trip (not so much snow)

PAGE 442

428

PAGE 443

429 Chickadee was eating the leftover bacon grease! Hank always left a slice of bread out for the birds! One time I was holding my gun and “Oh!” There was a Chickadee standing right on top of it! It was not afraid! The grouse was plentiful and the grandsons would shoot them and bring them home for supper! They were twice as big as the quail! They

PAGE 444

430 were very good to eat! As good as quail or better! They could walk on the snow with their feet. They were funny shaped! They would walk on the snow without making a crack!

PAGE 445

431 Adventures in Dog Sledding – Ely, Minnesota – February, 2002

PAGE 446

432 This is me and my son in law, Ronnie (on the right). Ely, Minnesota. Dog sledding. I think it was in February, 2002. 4 days of dog-sledding!

PAGE 447

433 This is my guide and his favorite dog. Ronnie is the one in the middle, and Dan Brown is on the right. He is a friend of Ronnie’s. He is also a doctor.

PAGE 448

434 This was the yurt. It is like a tenthouse. That’s where we stayed. It was my home away from home!

PAGE 449

435 This is inside the yurt. See the screen on the top? It was a drying rack! This is where we put our wet hats, shoes and coats, and they would dry and be out of the way. It could be folded and put away, when we were not using it. The heater was facing up, to help things dry.

PAGE 450

436 This is the back part of the sled. You put your feet on the sides and the brake is that black thing in the middle. You hold onto the handles (you can’t really see them in the picture). This pocket I had the treats for the dogs! I was treating the dogs for a good job!

PAGE 451

437 This one (the black dog) lead dog, and this one (behind him) was named Birch. But I named him Lurch.

PAGE 452

438 He would always try to go faster, and the lead dog would “All right, all right! Quit pushing! Look at me!” The lead dog trained the other dogs! He was wonderful! Smart dog! This one… shows pretty woods. Oh boy, howdy! It was good! I think that is me and my dog. And see Lurch! Always pushing!!

PAGE 453

439

PAGE 454

440 31 inches of ice! How about that? Deep this!

PAGE 455

441 This is drilling a hole in the ice. Anyhow… we had to get water for the dogs! And I wanted to ice-fish! I did not catch anything… (What on earth would you use for bait?) The

PAGE 456

442 guide had minnows… He had a bucket of water in the cooler, to keep it from freezing! Oh, gosh, maybe 2 dozen! My water was… All the guys had thermos, and… heating pads on the bottom! You had to do it! Or you could not drink it!

PAGE 457

443 The swamp between two lakes. All the water is iced. The frozen swamp! The guide Me Ronnie pictures

PAGE 458

444 This is my lead dog, Hester (the black dog) & Thor. This is the trail head, where we started. This is when we were going back. This was the truck and trailer for carrying the dogs. Ronnie’s finger

PAGE 459

445 Ronnie and his team!

PAGE 460

446 All the dogs tied and waiting for supper! One day I was giving a treat to one dog. The other dog, saw it and bit me!

PAGE 461

447 This guy, Danny, he was an attorney! He had training and decided to… doctor! After he was a lawyer! This is Danny bringing up the rear

PAGE 462

448 My Stroke – November, 2004

PAGE 463

449 My stroke, I don’t know how it happened. I am glad that Mamma was there. She stood by my side all the time. I was not working, I was retired. I was glad for that. I don’t know what I would have done if I needed to go to work. Betty remembers: I had my stroke in the front yard. My shirt was soaking wet and I could not move anything. When I first had the stroke – Not so much weakness, but I could not

PAGE 464

450 feel anything… I could use my right hand, I could shave… Betty would bathe me and shave me when I was at UCH. I was at UCH for 4 days. We tried, through my PCP to get therapies. They sent us to two different places, it was a joke. And it was 30 dollars every time we went through the door! It was absurd! Our older daughter, Deb, figured out the VA. On Monday, the 29 of November,

PAGE 465

451 I got admitted to the rehab unit in the VA. Dr. Ochipa saw me at the rehab unit. She started with me the singing

PAGE 466

452 therapy. My first few words were: no, yes, and damn it! That was about it! I could not say what I was thinking, and “damn it!!” I was frustrated I could not say! I was very emotional – when people came in to see me I would cry. The VA and Dr. Ochipa and Lini and the therapists, all helped me so much!

PAGE 467

453 I worked with Steve Wilson (Rec Therapist) and Ryan (OT).

PAGE 468

454

PAGE 469

455 My PT was from New Hampshire and she went back to New Hampshire: Melanie Pamasco, that’s her name! Jim Switzer was her supervisor. After I was discharged from the therapy I came in just for speech outpatient therapy. Fine motor is still not quite right. But I write with my right hand, which helps me a lot (I use writing a lot for communication). But before I could

PAGE 470

456 not even hold a pencil! I had no sensation Oh, and my nurse, Mary Ann, she was so great! All the nurses were great!

PAGE 471

457 One time, on the first or second week, at 4:00 am, they were like “you have to take your pills!” and I said “No!” It was the wrong pills, it was for another guy! Then she said “oh, thank you!!” This is Susan Modi.

PAGE 472

458 My daughter Deb knew Susan from Tampa General Hospital. When I was transferring to the VA, Susan was great help! I could feed myself and I could take my own pills! I could do anything but talk! I couldn’t talk! In two days, I couldn’t remember numbers! Still numbers are harder for me to say, but I can write them better than I can say them! Boy Howdy! We get stuck into

PAGE 473

459 some funny number confusions sometimes! Betty says it’s almost like an accent! (it’s just so cute, she says!) Golly! But we communicate, I pass my point across!


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Changes In The Sense And Perception Of Self In Individuals With Aphasia
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ABSTRACT: Little is known about the perceived changes in identity and sense of self in individuals with aphasia. Seminal research using qualitative methods and personal narratives has been conducted in England regarding the experience of living with aphasia (see for instance Parr, Byng, Gilpin & Ireland, 1999; Parr, Duchan & Pound, 2003; Byng, Pound & Hewitt, 2004), but the use of such methodologies is still emergent in the United States. In addition, despite the great achievements of the disabilities movement in countries such as the U.S. and the U.K., individuals with aphasia have remained largely at the margins due to the very nature of their impairment (Pound & Hewitt, 2004). How can one reflect upon and adjust to the changes brought about by a disability when one is devoid of words?According to Brumfitt (1993), individuals with aphasia, especially during the acute stages of recovery, have the tendency to idealize their "prior self." However are these identities transformed in ^relation to the acquired disability as individuals enter the chronic stages? If so, are these changes perceived in the same manner by survivors and caregivers? The purpose of the present study was to investigate these perceptual changes in identity using a qualitative ethnographic methodology. Seven individuals with aphasia and five caregivers participated in in-depth ethnographic interviews addressing perceived changes in sense of self after the onset of aphasia. Interview analysis resulted in ethnographic narratives in which participants and caregivers reflected on their perceptions of change and adaptation to disability. Common themes included the discovery of new identities, the gradual compromise between rehabilitation and adaptation, divergent perceptions of change, and the role of support groups during the rehabilitation process. The study was concluded with reflections from the investigator and the participants on how the results from this research could be used in our clinica l practice.
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