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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
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!
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 werent 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.
Life teaches us who we are Salman Rushdie
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
ii Chapter 4. Gods 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 Girls 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 Dont Ever Change.................................................................................................151 Crying Waiting Hoping...........................................................................................153 The Long and Winding Road..................................................................................154 Lonesome Tears in My Eyes.......................................................................................156
iii Shes Leaving Home...............................................................................................157 While My Guitar Gently Weeps.................................................................................160 Ask Me Why...............................................................................................................167 Get Back vs. All Things Must Pass........................................................................167 Im 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 Cupids Broken Arrow................................................................................................193 Moving Saga...............................................................................................................194 My Angel....................................................................................................................198 Cant 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
iv Barking Announcement..............................................................................................266 Roots.......................................................................................................................... .266 Father and Mother.......................................................................................................267 Curts 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
v Grateful for aphasia?...................................................................................................349 Chapter 11. In Exile in Ones 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. Johnsons Li fe History Portfolio............................................................375 My Childhood.............................................................................................................376 Grandma Fritzs 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
vi List of Figures Figure 1. Schematic of the empirical ego (based on James, 1910, p.46).......................15 Figure 2. Vickis calendar for April 2001 when she had the Big Ben........................46 Figure 3. Vickis calendar, one mont h after her stroke (May, 2001).............................47 Figure 4. Vickis calendar, two months after her stroke (June, 2001)...........................54 Figure 5. Vickis calendar three mont hs after her stroke (July, 2001)...........................61 Figure 6. Vickis calendar four months after her stroke (August, 2001).......................71 Figure 7. Vickis calendar five months after her stroke (September, 2001)..................75 Figure 8. Vickis 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 Edies palette...........................................................................208 Figure 20. The artist at work..........................................................................................208
vii Figure 21. Edies The Four Seasons...........................................................................211 Figure 22. Cathy and Edie in front of the Glamorous shop picture and Edies 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 Toms 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
viii Figure 41. Barbara Newborn at the Speaking Out! convention in 2004........................332
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
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.
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 victims 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.
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 dont really have a headache. I felt really weird, I didn t feel better. I dont 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 couldnt figure out my remote! I had a message in my vo ice mail, and I couldnt retrieve I couldnt remember how to do it. I looked at my dog and said, Miles, weve 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, weve 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 weve got to ge t Vicki to the hospital. She is a nurse, so she
3 knew that I was either in the throes of the st roke, or it had just happened But because we didnt have the exact time that they can have that that I could have that shot, then I didnt 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 thats what started the clots So Ive had two Ive 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 didnt 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 didnt know... I remember telling him, La rry, I think youve had a stroke but he would say No, no, no Hospital! And we went from there. ***
4 How it happened? she asks. Well, he told me to turn on the light and the words wouldnt 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. Thats right, Susan concedes. He sai d, Turn on the light!, and then The words wouldnt come! I thought Hes had had a stroke hes 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 didnt 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.
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 dont know he looks at her, searchingly. Numb? she asks Numb! Yes, yes! And could not talk. *** We were on our way This was our daughters This was a, you know, a real horror story, but its in the past now. [Shes silent for a moment. Reorga nizing her thoughts, she continues,] We were actually on our way to ou r daughters college graduation. We were supposed to get a plane that day to go to Ph iladelphia. Actually, to a college reunion of Bobs 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 wasnt 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.]
6 I thought he was playing around and joki ng around. I said, Bob, come on, you know, lets not You know, weve got a lot to do, weve gotta, get up But I couldnt arouse him at all. I called 911, and They I knew it wasnt heart, you know, I knew it wasnt heart, because its 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. Whats t he mat ? Ohhhh!!! His word, he say He was Because You have a stroke! No wonder I cant I remember the kitchen and then Suddenly Funny Things And no more No more Five days coma ICU I remember nothing.
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, Ill 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 wasnt yet approved, and She went to a hospital in Bradenton which is a smaller community hospital. They werent giving it there I asked the doctor about TPA and she said, well, it ends up causing hemorrhages and we dont 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 doesnt 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 dont remember nothing! Slowly, five days, and then night time in the hospi tal, and there in night time Dark Hospital? Whats the matter with me ? Whats the matter with me? What happened here, whats wrong? And then My My Arm ? Hand? Oh!!! Then suddenly! It pops in! I have a stro ke! Oh boy!!! I couldnt Anger, anger, anger!!! Is very Nobody else here! Oh my golly! Its The brain and Slowly,
8 slowly, slowly Oh my god!! I cant talk I cant! I I dont feel anything talking but, its 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 Thats why at the c onference, when they were talking about the two types of strokes, no, its not true bec ause he didnt have a bleeding and he didnt have a blood clot Right now its 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 didnt 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 dont think that I dont think it would have If he had gone to the hospital immediately, I dont 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 ***
9 Looking at Erika, Tom comments, Nu Number Te Ten minutes Know I didnt No, no But numbers cell phone You couldnt remember? she asks. Yeah Couldnt 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, hes having a reaction, Ill 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 dont 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, Im almost buckled on my knees! Because she inquires. Of course, I ate the Subway sandwich he adds the important detail, and laughs good-heartedly.
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 didnt know nothing. He stops and thinks for a while, organi zing his thoughts. I know the symptoms I think Im having a stroke. Youre 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 wouldnt take him Christie in terjects, in quiet indignation. Oh, half a mile! Curt adds. So he walked over there, and they didnt know what was wrong But they didnt think it was anything serious I dont know why they finally sent you to the hospital? Carrollwood hospital I hate that hospital! Its 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 oclock in the morning, I guess, and he got there about four So They didnt 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 didnt know anything, you know? Its weird. He recollects.
11 He couldnt say anything. She says, looki ng at him, quietly. It was hard to say what he was understanding and what he wasn t. I dont 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 dont know what the problem is After a brief moment, he concludes I made a pact with God! Dont 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 hadnt bothered to tell the rest of my body. The odd thing is, I never lost consciousness, and I wa snt frightened. It didnt 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 mans hand, weighed down on my
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 didnt 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
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 ones 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
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 ones 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.
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
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
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 ones 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 ones 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 Korsakovs 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.
18 29), resembling in some ways a successive collection of James Mes 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 ones 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,
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 ones 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 (Beckers 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 Beckers limbo, in
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 (Beckers 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
21 candidate, medical specialists usually consider the following factors: 1) the patients health status prio r to the onset of stroke, 2) the patients current cognitive abilities, 3) the level of severity of the st roke, 4) the patients level of tolerance for intensive rehabilitation, and 5) the patients age (Becker and Kauffman, 1995; Kauffman and Becker, 1986). The role played by rehabilitation in ones 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
22 the patients shoulders, such as complian ce with rehabilitation, a positive outlook on therapy, and acceptance of the therapists 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
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
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 patients illness which can be analyzed objectively. In fact, within the realm of speech pathology, addressing a pati ents 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
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 Kopits father as mentioned by LaPointe in
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 fathers 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 ers world through analogy, the playwright metaphorically translated the e xperience of aphasia as a pendular movement
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 ndividuals 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.
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 researchers point of entry along the qualitative continuum) is influenced by ones ontological (What is the nature of realit y?), epistemological
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 researchers 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)
30 Selection of strategies a nd methods of data collection and analysis is largely dependent upon the investigators 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).
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 1980s, however, following Hollands 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)
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.
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),
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).
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
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)
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
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.
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 participants 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.
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 ants 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 Vickis). Traditional language errors were never corrected in transcription or
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 ones 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
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 Lurias desire to understand the lives of those affected by neurologic c onditions from the inside. Thus, borrowing from Sacks 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 Edies 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 Toms story and how he discovered new facets of himself as
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.
44 Chapter 4. Gods 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 dont know me, but I know you! Im sorry? she startles, between puzzled and worried. Im 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! Heres 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 Vickis number and wait for the tone.
45 Hello, Vicki? Whos 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. Heres 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 cant find her. Could she be late? I wonder, my eyes traveling search ingly to the pastry section. Maybe Ill 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 thats 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 didnt 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?
46 Figure 2. Vickis 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, Vickis 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:
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 wont 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 dnt 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 Im gonna have another stroke. And I dont want one. Matter-of fact down-to-earth, and strong as a bull. Figure 3. Vickis calendar, one month after her stroke (May, 2001).
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 dont know what I would do if I didnt 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 dont know At the hospital, I guess I didnt 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 Gods little joke on Vicki! Therapy Marathon I worked on it. Day and night.
49 Probably 12, 15 hours a day. Because I couldnt do anything. I went to speech therapy every morning. I couldnt do anything exce pt work on speech, so thats what I did. I would take naps, and Id 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 couldnt say, I couldnt write my name I couldnt 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! Theres 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 couldnt 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 couldnt say ABC, I couldnt say 1-10! I couldnt It was unbelievable!
50 I couldnt I couldnt say, I coul dnt write my address I could screw up the zip code. Camera, camera, camera, camera write, write, write, repeat. I couldnt say look my addre ss! In the beginning... I always screwed those up [zip code]. Over, and over, and over And I still do, Ill 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 couldnt get it, because always 336 33 467 something lik e that that here it was 33447 33744 37474 whatever I couldnt say the word stroke I couldnt 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 couldnt And I said writ e it down, so I can get that out when I tell somebody that I had a stroke! I couldnt do my months I couldn t do the days of the week I couldnt say happy birthday
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 couldnt 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 dnt 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? Im surprised! Was she ev er married? Questions rattle through my brain. Vicki continues. That was a fate worst than death. She didnt need me, a burden, and because Im so de independent I had I couldnt I had to do it, I had to do it. Otherwise, I would just slit my wrists I tried to picture Vickis 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
52 grandmother? I could not tell. She did not volunteer much more information about her family on the first interview. I didnt 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 Youre such a bitch, and she said, Nobody has ever told me that Im 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!
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.
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 couldnt 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. Vickis 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.
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? Whats 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
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 youve cha nged, and how much youve 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, Dont 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 didnt want a pat on th e back but I worked for 3 semesters, and 4 months T hats 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 didnt want to help anybody for a couple of months. I was just pissed off. How can this be so clinical that you dont have any room for To make to tell somebody that I notice she was really indi gnant. Id like to I want you to read it because its one of those things that if youre 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 dont know how many people go through that. Th ey get so much better that they get dismissed. ***
57 Vickis 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 Vickis 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 Vickis 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
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
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. Cmon in, hon. Where do you wanna talk? Kitchen OK? Falon, Vickis 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! Theyre beautiful! She shows me one of the paintings in the living room, And this is ah original I cant remember the but its all its nursery r ooms nursery, nursery rhymes I look at it closely. Its 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,
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.
61 Figure 5. Vickis calendar three months after her stroke (July, 2001). What Do You Wanna Know About Me? Originally? California. Southern California. Upland its 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 Ive been here 8 years. But I moved I have I moved 11 times. Total 11 times. Im a Jewish Mexican. My mother was Mexican. My father was a Jew, so Im a Jewish Mexican. They met at Berkeley, they were going
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 40s, you know, or in the 30s, I do nt 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 dont 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 dnt share So we really didnt 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. Were all dysfunctional. Its just a matter of degree Brothers. I have two brothers. I m the little girl, little sister. I have a brother whos a professor of literature, and he was dyslexic, and he couldnt 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 dont talk. When my mother passed away he was horrible to me,
63 and I I just, I havent talked to him. I havent seen him since 1992, and Ive only talked to him half a dozen times in 15 years. He doesnt know that I even had a stroke ever called As far as Im concerned, hes a sociopath. He never he do esnt have any regard for anybody else. Hes hes only interested in his life and hell take your life with you with emotion if he ha d to I just, I dont need it, I dont need it in my life I dont need, I do nt need it in my life I dont 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. Thats 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. Theres a picture of my mother that one of her, an artist friend, charcoaled her her face and thats the only picture I have of my mother. Everybody that I grew up with, my mom and dads friends, they were people that It was the during the time of Communism. My
64 uncle went underground because he is a communist, he was a communist. Its 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 dont go to church I am more Jewish than I am Christian. Im Jewish, everybody was Jewish. In the 40s and the 50s it was whatever it is still is, but, hidden. People theyre such hypocrites and people are so mean, and theres so much hatred in the world We were we were sheltered from that. I had never heard the n-word. Its not a word that I use its such a horrible word that Ill stop anybody from using it because its so . latent with hate I take everybody as they as th ey are I dont say anything about the Indians, I dont say anyt hing about the blacks, I dont say anything about Jews, because I am and Jackson Pollock was my dads cousin, second cousin.
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, theyre 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 dont know tell me about her. *** A fate worse than death Shes thirty eight years old, and she has two kids. She does everything right, and I do everything wrong I guess But were OK Its just bizarre Shes 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
66 And let them go on To be whatever theyre going to be You have to do that Otherwise They cling and Im not a clingy person! So you just have to let them go. Thats, thats the grand-scheme of things in life: Just letting people go. I have two grandchildren. Theyre wonderful! But I dont get to see them. Theyre in California. I talk to my daughter 3x a week But I havent seen My little grandson is going to be 2, and Ive only seen him twice. My granddaughter is 4 and Ive seen her 5 times in my life. Its hard to get there My daughter is I love her to death, but Shes a control freak! She controls everything! She controls drinks of milk that I give to them.
67 Its hard My parents werent 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 Its very hard it s hard for me. Shes very religious, and Im not and was not To me well now shes 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 Im not And it bothers her That Im not
68 I dont follow the Lords path. When youre dead, youre dead! Youre done! They dont talk to you anymore! Youre done!! Whether youre 15 years old If youre 7 months old, or if youre 55 years old! Youre dead!!! Something is going to get you Whether its this elbow Or its your heart Or its your lower back Or its 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 isnt because I got a direct line to Jesus Christ I just want it fast
69 I dont want to have another stroke I would like to lie, die in my sleep But thats what everybody wants! Let me be who I am! Dont try to You cant But theyre What they Theyre supposed to spread the word . Theyre supposed to tell everybody about Jesus Christ Dont do it to me! Im your mother! Let me be whoever I am You do whatever you have to do to get through your life And theres nothing I can do about it Except deal with it. Whatever way I can deal with it
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 Im going to get another that Im 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 cant equate it Nobody knows what you went thr ough. Its like a death. It is a death. Its a death and a re a rebirth. And it just makes you a stronger person. A better person. Is it like a scar, that wont go away? She pauses. I dont 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 youre the same person you were before? I think If somebody pulls in to you while youre driving, I just let them in. Its one of those things If you want in that ba d, get in If you have a red light, run it you know? Ill always stop Because people are in such a hurry, always Theyre so impatient, and they honk their horns, and they bitch at pe ople. Why? You dont even have a clue whats gonna happen to you tomorrow! You know? And for me, I had
71 another tomorrow. I had a tomorrow. A lot of people didnt thi nk I was gonna have a tomorrow. I didnt 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. Vickis calendar four months after her stroke (August, 2001). Who am I? Im Vicki!
72 Im the same person Ive always been! Ive never changed! Ive 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 couldnt read! It was Gods little joke on Vicki! I started reading again. Two weeks ago. I started back with the mysteries I love. But I didnt read for 3 years Because I was so pissed off. When I stroked out And I knew I couldnt read I still went to Barnes and Noble
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 dont give advice. I wouldnt say what you need to What youre supposed to People dont 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
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 Dont 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 dont know I think Im pretty cool! What makes you tick? What makes me tick? I dont know what makes me tick. I just know Im still ticking! She laughs, with pleasure.
75 Figure 7. Vickis calendar five months after her stroke (September, 2001) March 18 2005. I knock on Vickis 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 didnt 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
76 the reading, she nodded in agreem ent, and at times, finished my sentences! Its good that I always tell my story the sa me way, isnt it? She comments, laughing at least that way people know Im not lying! When the readin g was over, Vicki exclaimed You have to show this story to my speech therapist! Sh ell get a kick out of it! She goes to her kitchen and writes down her therapists 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. Vickis calendar six months after her stroke (October, 2001)
77 Chapter 5. Diamonds are a Girls 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,
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.
79 I dial Larry and Susans number and cr oss my fingers tightly, hoping catch them at home. After a few beeps, I hear Larrys 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. Dont 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. Ill 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 Its me You were right, I guess Ill need directions Larry laughs warmly and guides me to the correct route. A fe w minutes later, I arrive safely at their door.
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. Larrys 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. Youre a lucky lady! Dont we all wish for such a devoted husband! I say. With a smile, Susan adds, Well, theres also your therapy homework!
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 its boring and unboring he concludes. Actually, Susan mentions, Larry re ally wants to get a job. Weve 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! Thats very exc iting news! I exclaim. Yes! Susan continues. Theyve been very positive, you know? Hes going to see what happens. Its 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 weve gone through that part now. Were 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
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 dont know, its But courier bank courier is number on e or chauffer chauffer disabled people but poor inco mes Volunteer, yes, but Noticing the hesitation in Larrys 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 DIAMOND S ARE VERY SLIGHTLY YELLOW TO TRAINED EYES, TO YELLOWIS H TINT TO UNTRAINED EYES Larrys Journal Entry. I was born West Virginia My father died when I was five years old.
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 womans lib before the word ever existed! Well But Mothers 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
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 Larrys dad Larry His name was Larry
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 CS BY MANY JEWELERS. Larrys 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 Larrys 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!
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 mothers 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 dont want to be a watchmaker. Daddy is a hmm elder in watch company he was schooled hmm in the 30 30s no 20s! 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
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. Its called the co-op program. You get a balance between school and work experience. Hmm hmm And after that ? After that?
88 After that Tell her about what you did in the Army. Im 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 mines 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
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 DIAMONDS 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. Larrys Journal Entry With my full attention devoted to the story, and trying to anticipate the next turn of the plot, I ask, So thats when Susan entered your life? No, actually Im Larrys 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 didnt stop and hmm three hours later she died she never saw baby. I, thirty-two Liz thirty I widowed.
90 You had to grow up fast, huh? Susan says and smiles. Fast, yes! Larry chuckles and softly holds Susans 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 oclock 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
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!! Im 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. Larrys journal entry. I have hmm Fourteen months Nashville, Tennessee corresponding with Liz So I started to to corresponding with hmm
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 didnt 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 werent married in 63 Oh! Right And hmm So you bought store two in 68, store 3 in 82.
93 And close them all And then we closed all three. *** Several months later, when I return to Larry and Susans 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 Larrys 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 hes 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
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 60s no, 70s 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
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
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 didnt function! Hmm hmm Susan agrees. I remember I was on my way to get you. All you could say was I dont 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
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, thats what its 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 Larrys 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. Ss 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
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
99 He is so proud of his notebooks, because hes 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 doesnt 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.
100 20/20 Thankful for a bright sunny day, I find La rrys and Susans 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! Thats whats different! I exclaim. Looking a little closer I notice that the left lens was missing. Hmm hmm not missing Larry clarifies. Hes 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, Weve 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 didnt 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 ouldnt 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.
101 Hmm hmm!!! Susan sighs, relieved. This is one of the first times hes 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 its 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! Hes 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, were gonna do this! And they did it! I mean Thats how blessed weve been with people and with friends The ophthalmologist couldnt 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 dont know how to handle the situation. That has not happened to us I notice Larrys eyes, surrounding Susan in a warm and loving gaze.
102 Why do you think that is? I ask Susan You know Im not sure Maybe its becau se Larry is older, and his friends knew how to handle it because theyve seen more of life. I dont know But since his stroke, in the 30 months, weve not missed a party, weve not missed a dinner, weve 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 thats been very healthy, wouldnt 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 cant 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 Theyd say Youre OK, were 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 couldnt, he c ould hear them but he couldnt respond to them Larry exclaims, visibly moved, See I, I, I dont appreciative of the fact I didnt know what you do! I know you didnt know Susan acknowledges and reaches for Larrys hand. But see, I told Leslie, our speech therapist, to tell other people that, because the phone
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. Hes the friend from South Carolina says Susan And then, suddenly, mothers day, hes 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 Wernickes aphasia. But hmm he he is constant babble! smiles Larry *** Thats a blessing its ju st a blessing one of the nurses for the ophthalmologist said, hmm, He has an angel on his should er. Hes got angels all around him! So, weve got a lot of blessings, and a lot of frie nds that have helped us get through this. Without the friends, I do nt know what wed do I really dont A lot of things have happened that have been wonderful through the process of this nightmare and it is sort of a nightmare, its a blur, when youre going through it, you know? I look at the calendar and it is sort of a blur, of doctors appointments, and, and going here and doing this, but it is OK, weve gotten through it
104 *** Several months later, while reading Boazm ans account of her life inside aphasia (Boazman, 1999), I cannot help but admire Susa ns 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 Boazmans 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
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! Larrys 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, thats 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, werent you? I ask Larry
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. Doctors 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, Shes the educator
107 Well, Leslie said if you dont learn it ri ght the first time hell say it wrong the second time Susan justifies it. She is constantly reminding me She is gramma grammatically correct! Larry jokes and smiles. Well, Im 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 didnt 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 Im 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 therapists 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 dont li ke it. I dont 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
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 its 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 Its hmm where I am so Im proud of that *** Yeah We have personal freedom, except right now we cannot travel, and thats been really hard bec ause his Coumadin count is co nstantly off kilter and hmm His blood, his blood Hes on Coumadin, blood thinner, and its 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 cant 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 its two weeks but so that would be our biggest restriction Not being able to travel because we, were marketing consultants and we traveled everywhere! So thats I would say thats one of the major things, but Im so thankful we live in Sarasota where its lovely And people come here, so its re ally not that bad! So
109 we feel very blessed that we live in such a beautiful place, and the hmm weve had so much company hmm but thats been wo nderful, thats 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 dont 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 its 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 its perfect and sometimes isnt perfect But, anyway I Dr. Petrovsky hmm and Dr. Hudson is life savers! Now youre 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 rkinsons Susan explains, And hmm its really helping him! He thought 30% improvement th e doctor thought, 30% since hes been on it! And hes been on it sin ce you were here I mean I think we started that since hmm you were here the last time
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. Hes unbelievable Susan continues, And all the nurses have told us hes the most dedicated doctor that theyve 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, theyre 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 its a miracle! Susan me ntions. He told Dr. Hudson he improved 85%... Dr. Hudson said, I dont thi nk it works that way, Curt!
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 didnt 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 hasnt changed there is nothing about him and Im so thankful for that because hes 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 dont hear that at all I hear other things but every doctor wants to know, first question, how have you changed since youve had the stroke? And there is really no no change!!
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, Im 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. Hes had to order things for people, not simple thi ngs. Its one thing to order a diamond for a customer, but its another thing for a customer to say, I want this complicated piece and hes had to go fr om point A to point B and its taken Sometimes two, three days, but weve done it, you know? Im really pr oud of what hes sold, of what hes 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 hes OK. That has been extremely emotional. Im 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 thats it go the a ppraisals, get the work its been a challenge, but its been wonderful !! You know? Because Hes back in his world. Hes the happiest back in his world of the jewelry, thats when hes the happiest! As Larry returns, Susan asks him, Theres a story that I want you to tell her, that she doesnt 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,
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 couldnt 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 dont 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 didnt write anything down, and I said, Why arent you writing anything down? See, because the earrings belonged to the people, Larry couldnt take the diamonds out of the mounting to weigh them, so he guessed, with all his knowledge, he
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 couldnt speak. I didnt 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? Its a strength hes 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 Hes 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!
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 jewelers 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.
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 lets look up some recipes! Well 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 dont 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.
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,
118 Ok now! What da what recipe? Oh, I dont 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 doesnt 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 nckleys research lab, I hear an enthusiastic Eureka coming from the inside. Yes Thats it Thats what I was looking for! Stretching my neck down the short corridor leading into the room, I see Lori, Dr. Hinckleys 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!
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. Isnt this something? She shows me. I wa nt to try this with Bob, see if it works for him. Youre 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. Hows he doing in therapy? Well Lori says, The problem with Bob is that he hasnt 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
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. Hes probably more reserved and introvert ed than the other Musketeers, I think to myse lf, and thats why he opted for making the introductions instead of a speech.
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 Bobs 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 Bobs 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
122 should I word my invitation? After a few dial tones, I hear Bobs 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.
123 Oh, no sweat! he replies with a smile, Cmon in! As I enter, I notice the beautiful Collie standing tall by Bobs 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, Bobs 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.
124 Seventh and eighth grade. Really? I reply, surprise d. How do you like it? Oh, she sighs, Im 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
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 dont 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 dont 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, Im taking hes 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.
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, lets s ee what was that last one you asked? *** I would say Bob hes 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 didnt have time he was so busy it is not that he didnt care: he was just too busy But now hes 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 couldnt put it in to words [looking at Bob] So I would agree w ith you on that question [Bob nods gently]. I dont know that I would agree with some of the other ones before, though When you were talking about your purpos e I dont think you have a real clear purpose Bob is not a goal-setter now, and it drives me crazy Because I dont ever know where hes going, or what he wants to accomplish, and I I think that it comes from a fear of failure so he wont set a goal, and say what he wants to do, so I dont think that he has a clear pur pose, and I dont think that he has enough to do during the day He isnt busy enough he isnt busy I dont think that hes busy enough at all He wasnt like that before Oh no [Not AT ALL! Oh no!] He was busy every Every single minute [Every single day]
127 Thats why theres been such a the harde st thing for me is that hes 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 doesnt now. And I always ask him, What is it you would like to do? because there isn t anything really he cant do now, that he could that he did before, I mean, when he puts his mind to it, he can do it. Its not like he cant do thing s including hobbies and all But he Its like he doesnt 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 dont think he has enough to do, I do nt 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 societys 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
128 control; the problem is that societ ys 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
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 dont have co ntrol over that!] Well You know This morning The stroke Night before I wonder Not stroke because I dont 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 dont know Stress, you know, the stress
130 Always there So what? I dont know I dont know I dont know But something wrong I dont know what I dont 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, Ive 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 Kathlyns I dont know One week Blank
131 (our younger daughters) graduation, so they were in route, and What we had decided to do wa s have Jennifer stay up there for Kathlyns graduation, so shed 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, Im fine And my brother was there when the neurologist came in, and my brother just Couldnt 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 dont when their brain swells like this they dont surv ive rather saying than in 70% of the times people dont have any problems!! Uhhh!!! [Laughs!] Yeah And I Im 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 dont 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!!
132 them, and Jennifer said, w hat about, what is that now what would they have said I dont know, they just t hat whole group of neurologists, just were ugh!! [laughs] Just really awful!! Yes! [Laughs!] *** Saddened as I listen to Dianes turmoil as a caregiver during Bobs 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.
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 didnt 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...
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
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
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. Thats 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 wouldnt change that! That was great! Really! Bob confirms. Tra vel a lot, many, many times! Tell her were we lived Diane suggests.
137 Lets 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 youre being funny she continues as the lines in her frown relax. Yes! Bob continues. Whats 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 wasnt in the military We lived there when you were working as a civi lian Yeah, we did liv e in Atlanta, Diane acknowledges, But thats where you had your stroke But you, like Atlanta, no? confirms Bob. Well Yeah Diane concl udes. I did. Until then. ***
138 Eight Days A Week Bob, you mentioned you are an engineer I comment. Yes! Bioenvironment he confirms. Did you always know thats 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 ? Whats 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 youre doing, so youre good at it, youre good at it, so you love it, and it just
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
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
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. Well see you then! *** As I drive home that night, I revisit the aspects of the interview that I wish could have gone differently.
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 didnt I just fo llow their lead? As I shift lanes, I ponder, Maybe there were no leads Maybe I was just puzzled by Dianes silence in the beginning And Bobs 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 Dianes 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 hell let me come an inch closer this time? I dont 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. Its 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 were doing the interviews separately today, I mention, I was wondering if we could start by talking a bit about you.
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?
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 Im 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
145 Me role model, I think Siblings Because me, college Brothers and sister no college. I dont 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!
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!
147 Beautiful! The father is an . attorney! No sweat! Really! Beautiful! Beautiful! The divorced the the first day Cmon over, Bob! the father and mother, Cmon 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
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!
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
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 Cmon!! Cmon!!! [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. ***
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, its my turn now. Youre 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 youre ready. Dont 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 Lets 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]
152 Lets say that, in a group situation, people decided to do one thing, and it wasnt what he decided, what he wanted In thos e cases he wasnt 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
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 its 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 didnt 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 doesnt remember any of that But
154 they all assumed he would be fine, too B ecause theyre all his age or younger! Bob was he had just turned 51, so some of them were in their 40s 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 thats what I did Bobs 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 hell 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 dont 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 hadnt 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
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 didnt 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 cant 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, its 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 didnt say woul d not be motivated anymore but he did bring that up
156 I think Bob could do so much more in therapy if he were willing to work because hes had, I think, what a lot of the other guy s havent 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 dont ha ve And yet, hes not willing to do the work to do it. I gather its 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 thats I dont 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. Its the lack of motivation Its never the kid in school who is the brightest who achieves the most its the kid who is the mo st motivated. I will take a motivated kid at school any day, to the smartest one So thats 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.
157 Now, when we moved here, of course, nobody knew us before th e stroke, so its meeting all new people and That really has been very difficult because of Bobs problem with speech Its difficult becaus e people will want to interact, and ask him what he likes to do, typical kind of conversa tion, and since he wont respond, or, wont be able to add much to the conversa tion, it is very difficult I dont mean people arent nice: they are. People are very nice and theyre 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, its 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. Thats 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. Shes 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
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 Shes a resident now, shes 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 dont know if Bob had not had the stroke, would she be in neuro? Its impossible to say You dont know you dont know Jennifer is an engineer she is a true engineer. And she s also in business. Shes in with other people in a company Its its certainly Its changed th e way everybody looks at everything. That summer is almost like a silence its 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 hes not now. The ki ds are on their own, they really are in charge of their own lives. And Ive had to kind of step out and also be in charge So, instead of Bob being in charge of th ings, hes 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!]
159 Bob!! [What?] As they got older, of course, they didnt 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 cant tell me what to do now And Kathlyn too But Bob still tries to tell them what to do [Bob starts laughing] Like lets see, hmm Oh, lets all go to the mall I dont want to go to the mall, dad No! I decided lets all go lets all go to the mall Maybe thats an overblown thing But ra ther than him making this decision He cant 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 its not funny Bob [Yes ] No, its not [Bob sits by her side and slaps her legs] No, its not when you get frustr ated and then be careful, Bob! [What?]
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 Dianes 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 Dianes 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 Youre not going to teach her? You cant teach her? Diane intervenes, resolutely. I know you cant teach me but thats 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.
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, Bobs 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?
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 dont 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 dont 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
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.
164 Figure 11. Dialogue of left and right hands over the cords. Figure 12. Soulful strumming.
165 Figure 13. A glimpse into the past. Figure 14. Twin guitars.
166 Figure 15. The Master and his Instrument.
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. Shes probably still at school I think to myself. Reading my thoughts, Bob comments, Diane, you know school I think I dont know, well see. No problem, I reassure him. In fact, I came today hoping to talk with you, so thats 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 anes 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!
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 dont know
169 I out! And Diane, Ohhhhh!!! So, you know, different Different than me I dont 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]
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
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?
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
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 dont know I dont know But I did you know? But Diane No Not at all
174 Im 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. Its 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 theyre grown up women, or because you
175 have your aphasia?] Oh, no, the aphasia [Do you feel that they dont know how to communicate with you, or that theyre 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!
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 [Youve 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
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 Bobs 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?
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]
179 No sex! Well, some finally! [Who was it that would avoid it?] [Silence ] Me I think Why? I dont know I dont 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
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 dont know why But I get attached Tough Because the stroke I know what its 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,
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 Dianes 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.
182 Chapter 7. Light Bulb! Larry and Sues 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. Shes incredible! She does wa tercolors, she does flowers. Ill 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 Monets Cathrdale de Rouen She did this from a small photograph Sue says. I think its 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! Wouldnt she be a wonderful
183 person to incorporate in your paper? Sue as ks. If you come to the next aphasia group, shes always there with her daughter, Cathy. *** Venice, August 2nd, 2004. Given my infamous luck with directions, I gladly accept to follow Bob and Dianes 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 artists bag, overflowing with paintings. Hi Edie! Bob and Diane hug her. Wheres 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 Edies 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. Todays Moms 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
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. Edies retirement community and give my name at the front desk. Shes 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. Edies 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!!!
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! Thats all! Ok! What to do, what to do? One day (I remember clearly, clearly!) Light bulb!! Big light bulb!
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! Hes coming! Hes he was very drunk, and have a blood here I cant do it Hes drunk Worried Nervous about husband He was in problem! Alcohol And every day, what to do what to do
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 didnt get really terrible at their house until about 5 years after Moms 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, whats 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 dont need this . And So Then we take her back and
188 show up at the house, and there he is on the sofa, with a jug of wine sitting there So shes 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 didnt 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 Its different Its my brain, poopoo, poopoo, and thats all.
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, lets 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! Thats good! Oh, good!
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! Ill tell you everything you do and Its calm And doctors, good doctors, very good doctors Its hmm My sense that calm is very important Calm people Nervous Whats the uh, uh!!! Hmmmm!!!! People
191 Patient Operation Very scared everything! Everything! Ill tell you everything here Dont worry Thats just here and the pr essure [gestures going down] And then 5 minutes And the pressure Its 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? Thats something good Then [sound effect of pressure going down]
192 Thats good Thats 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 thats 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
193 least a couple of times, and I saw fingers bei ng re-attached, and all sorts of things, so Im not sure how, exactly but thats part of it Cupids 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 thats 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?
194 Yea!! Yeah!! Yes, my friends hm hmm nursing home [school], No, be careful! No, no!! Oh!! Slowly, slowly!! No more I dont think so, I dont 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 whats 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 dont know I I couldnt do it I say is bad or good. I cant 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 thats good. So you fell in love with him at first sight? Yeah 5 weeks! But now divorce. Prob lem he wasnt good But thats all right. Moving Saga The husband hmm ah he
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 its no money, but is good I was born in Alabama. We were there for about 2 weeks. Dad I think maybe he got his Masters 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, thats all [So he started in June of 61 and he got his Masters in 62 before Cathy was born? And he got his Masters at the same time? In one year?] Very close because hmm Final test,
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
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.
198 Figure 17. Edie wearing her nurse unifo rm and carrying Cathy, a few months later, together with her husband. My Angel Thats 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. [Its 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!! [Its 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 Its since the
199 stroke, so hmm probably, lets see its 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 cant believe it Is eh my daughter is friendship you cant 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 cant, I cant ta lk!! More doctors 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 ats 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 dont know! But Cathy, yes, help me for grocery store, Ill do it!! Be be caref ul, be careful!! Ill do it, Ill do it!! Is amazing!! Is good!! Is amazing! I dont know why! You never know? ***
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 didnt 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 Its so mething Ill do it myself yep ] Its not until later that you look ba ck and think hmm he was never there Stuff that I didnt 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 dnt do anything. Painting, or wallpapering he just wouldnt have anyt hing to do with any of it. So Mom and I did things like that. So thats probably part of the picture that she paints. Cant talk! My voice Talk not very well I have a stroke and very sudden
201 I couldnt talk nothing! I understand everything! But I cant 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 dont 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!!
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 theyre taking advantage of people theyre 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 Im told he had a confrontation with somebody there, I dont know who and said, This is a crock, youre charging people thousands of dollars an d you dont have any proof that they get any better! Its not right to feed on peoples hopes, and have nothing to show for! [Cathy stops briefly and continues] I I dont 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 dont know what to do. We both sit in silence.] And hmm that if even if she di dnt even if she wasnt Why is this upsetting me!! [She exclaims, surprised that he r emotions are still so strong]
203 Even if she wasnt 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 didnt have to spend you know, f our weeks, or five weeks, living in a dorm, with Mom and Mom being hmm Lets se e Mom was a really good student in high school and college, so its 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 Dont worry my voice bla voice [harsh] slowly, calm dont move too much talking Tension because of what the she said its all right calm calm is a is very important
204 because is have a the stroke and suddenly what happened? I cant talk!! What is is very important the lady thats 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! Well see I dont know maybe have a teacher, or High school age Well well see well see. The the first time the teacher is lets see I cant 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!
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, its 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 years resolution? I think... well... She laughs The time... the classs time indicating that was when the classes started. What materials do you like to use? Whats 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. ***
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
207 Myself Ill do it myself I dont know what I have a I have a stroke, But painting, sailing I could do it! But thats 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.
208 Figure 19. A glimpse at Edies palette. Figure 20. The artist at work. ***
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 Thats 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 doctors appointment Cathy, Cathy! Look at the flower! Its driving, Mom! But Is good!!! Look!!! Is amazing!!! Is colorful!!!
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 dont know Everything I try anything. My brain is wonderful colors. *** I suddenly remember the painting on the wa ll of Ms. Edies retirement home. Four pictures of the same street, during different seasons of the year. Same but different.
211 Figure 21. Edies 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. Its not that she is unkind or anything, but Shes maybe Well, shes definitely less willing to put up with crap, from dad and and she and its so [Silence. With a quivering voice, Cathy continues] helpful to me that shes sort of ma tter of fact about it because of the two of us, I am more I guess emotional about it
212 Yeah the mess its 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, Hes crazy! And she doesnt regret which I don t understand, but she doesnt regret her life with him I dont understand how [almost crying] well.. Its hard for me to think that her life was crappy before I think its cr appy now its 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 esnt have bad things to say Dad I dont know I dont 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 wasnt always terrible and I guess certai n parts were not terrible so hmm and I guess its 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 didnt 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
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 Youre not aware of it, or, cant 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 shell say Dont worry about it , just dont worry about it! because Ill sometimes Ill get hmm sigh kind of unfocused on whats 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 whats important to her. I appreciate I appreciate her ability to focus me on whats 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 its 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 Im not part of the class, so I dont 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 didnt 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.
214 Actually thats 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! Its not sitting an d saying the red truck went up the hill its hey, sign me up, heres my credit card, where do I sign, I want that class you know, all this stuff so hmm and so I appreciate that shes 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 Edies nursing award.
215 Figure 23. Mother and daughter posing in our improvised Glamour Shot.
216 Figure 24. Improvisation number one. Figure 25. Improvisation number two.
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 Brocas 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. Wouldnt he be transcortical motor? Ironically, as we carry out our theoretic al discussion, the yo ung mans 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.
218 After we leave the observation booth, I f eel shaken. Hes 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 Toms 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 didnt 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, Hes 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 thats 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 Toms 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.
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 hes 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. Id like you to meet Mary. Shell 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
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 Erikas 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
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, thats 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 Thats what did
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. Toms speech at the Speaking Out! Convention, 2004 Good afternoon everyone, my name is Erika Boyle, and Id 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 didnt 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. Erikas 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.
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,
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 couldnt 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.
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 Toms 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.
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! Ill 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, wed love to participate! Well 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 Im a caregiver ***
227 July 22nd, 2004. I find Tom and Erikas 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 Im usually fine! He laughs as I tell him my a dventures on the rainy road, tr ying to locate Larry and Susans 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 youre 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 wont 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
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. Ive 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, thats 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 isnt much support.
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 Its 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 couldnt move it, and Then the ICU nurses said, You need a cardio and a neuro consult. Dont tell the doctors we told you: Just say thats what you want They were great! His mom came, and his brother He knew who they were, but he couldnt say anything I couldnt 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
230 I didnt know I remember everything I had a an ah Aphasia So cant cant speak!! What? What now? What now? I know he doesnt 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 youd 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 Hell 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,
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, thats 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, its 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 hes 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
232 I I s said that Nurse!! You know? Tom adds and comments, Well I didnt 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 dont 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, Id 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 Theyre 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 theyre inma tes instead of patients, so they would not get unruly and stuff li ke that Tom is there, and hes crying he had to go to the bathr oom, and no one took him to the bathroom so he peed his pants, you know?
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, theres absolutely no need for this! and theyre all right in front of the nursing station, and you couldnt 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 hes potty trained now, so Laughs! Laughs!! Thank God!! Thank God!! *** How was the rehabilitation team, t hough? I ask, Couldnt 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 didnt have anothe r one Erika sighs in disappointment and concludes,
234 Theyre 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 didnt, 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 Im just sitting there, going its suc h its a waste I was not gonna make I felt so strongly about it that I wanted to tell the insurance co mpany Dont pay them because they didnt do jack But then I t hought, I cant get stuck with this bill You know? So it was bad And when they released him, the social worker threw us into society she didnt 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 Toms 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. Erikas speech at the Sp eaking Out! Convention, 2004. So once you were out of rehab what did you guys do? I ask.
235 A lot of phone calls! Tom explains A lot of phone calls Erika phone call all the time hm because hmm I cant speak so hmm its 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, thats 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 wasnt 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 wasnt 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 didnt gi ve me any help or anything like that! All they told me was He cant be left alone, so make arrangements. Now, heres 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 Maam, we cant pick him up unless hes on th e first floor. So guess what? We had to
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 its over You know? So I guess thats 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. Erikas speech at the Sp eaking Out! Convention, 2004. So where was I? Erika asks. Oh, outpatient therapy. Well, that didnt 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 thats when we started making phone calls and trying to find therapists, and organiza tions, and stuff like that As I revisit Erikas speech once more, I find the details of their therapy saga.
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 couldnt add him to my health insurance policy I had through work. After we were married I couldnt 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 dont have health insurance coverage, is very high. As I shopp ed around for new therapists, I told Toms story to each of them, explaining that this was taking a huge financial toll on us and that we simply couldnt 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 companys 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 months worth of therap ies. We lost the other appeal. (Erikas speech at the Sp eaking Out! Convention, 2004) Its just wrong Its its its its ridiculous!! She says in contained outrage, fist on the table. Now we learned that, through all insurances, theyre not going
238 to start paying for PT, OT, and ST at this stage, you know, thes e many years post-onset They say its its too far you know? He has Medicaid now, which were thankful for because it pays for doctors, but it doesn t cover prescriptions Thats where having private insurance would benefit us right now. The other drawback is that I work for a small company and we couldnt 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 dont know It wasnt easy. You definitely couldnt 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.
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 Hinckleys 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 its about like, 20 thousand, 30 thous and dollars? I dont 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 didnt 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.
240 She talked to you three y ears ago! Erika recollects. Oh, yeah! three years ago ! Shes 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 hes 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, its 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, thats 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, its working!! You know? USF has just been absolutely incredible its just been amazing!! Its just been, by far, the best speech therapy he has gotten, and, thank God Erika says almost in a whisper its b een the cheapest too!! But, I mean, really, it has been the best From Yes and No to Community Outreach Remember when you couldnt talk much at all? Yeah Toughest time! Oh Thats what I missed the most! Just
241 talking I didnt 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 Thats how we got together We would just talk! We always talked! Aphasia sometimes its hard to do because thinking about it and saying about it is not good But its 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 its its ta it takes time But hey, its working! You know? Hmm its like baby, really? I
242 mean Learning all all I know! I know! And were in synch! Now I can finish some of your sentences But there were so many times before that for the life of me I couldnt 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 Toms 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 Erikas 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,
243 I sat in on most of Toms 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 wasnt able to do a lot of his speech homework by himself, and what he learned in speech therapy wasnt 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 Womens 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 Childrens 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
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. (Erikas speech at the Speaking Out! Convention, 2004) Discovering Acupuncture and Wine August, 2004. I arrive at Tom and Erikas house and they are ready for the second interview. Erika go first. Tom volunteers as he sees me. Ill 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 Toms 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...
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 were 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 dont even know how we did it. I I I started getting grey hairs, I didnt 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 Im 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 couldnt 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 dont think that lasted too long, you know? As a couple its definitely made us
246 stronger Its 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 dont think he went to Catholic high school I went to two years of Catholic high school and I said, thats it, I had to get out I went to a public school But, I mean, were 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 Im so angry at God which is a total natural reaction But Curt he says he s a scientist, so he doesnt He believes theres some thing, out there, but hes not sure because scientists have to prove, or whatever But I couldnt 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 couldnt 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 Im really close with both of them so it happened on a Friday, and I didnt call them I called them only on Saturday night I just didnt call, I couldnt 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 didnt know so my mother
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 wasnt gonna die and he wasnt 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 didnt 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 didnt he wasnt real domesticated, he didnt 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, its 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 Im trying to teach him how to cook he didnt cook before but a lot of stuff in the kitchen with one hand is very very hard! Bob has a cutting board that
248 hes shown us, and Ive 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 hasnt come close to balanci ng a checkbook yet, but it wasnt good before, so Among giggles and laughter she continues, When his Mom was here two weeks ago, I didnt 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 hes gone to pick up a few th ings on his own, but its every time its been with me, so I gave him this big long list and Im like, Are you sure? and he was like, Yeah, yeah, yeah! So hes so funny! she says, with the most endearing tone in her voice, He called me, on my cell, probably five tim es! Hes like, hmm Ok, lettuce, what kind this or this? And I said oh, doesnt 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 havent 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 Im just I m ean, Im at the computer 8 hours a day, so I was like, du, du, du, du, du and hes like, O k, I wanna learn and Im like, Ok! I
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 Theyre scared that its going to happen to them, you know? Or, now that the acute stage is over, th ey may think, Well, its not really going away, so they dont know how to act around him But we have some friends that stop by to do a little thing and weve made new friends also. Thats true, I agree, thinking of the other Three Musketeers. Its gonna be 4 years since his stro ke, next month, you know? So Now were 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, weve 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 hes close with hi s family too So hmm I dont think hes
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 thats 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, Ill 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!!
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 Its 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 didnt Didnt lik like it to live! You know? Too fast! Then I I go Chicago Lots of snow! Really cold!!
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, Thats where you worked after the Hyatt, wasnt it? Culligan Water? You mentioned it to us in group! Laughing, Tom confirms, Yes! Culligan water!
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 dont 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!
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 Its 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 Youre a father? I ask him. Yes, oh yes! Tom confirms. My son, Ryan. But that was before you met Erika, right?
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 Toms stroke. *** Ryan and his mother were living in a house in St. Pete that Toms 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
256 Well, when Tom had his stroke Ryan wa s about eleven or twelve years old. Tom didnt have any disability, social security hasnt kicked in yet, and Ryans mom and Tom were divorced before Tom and I even met, so I was not the cause of it But I dont think she was happy to have me around She claimed Well, if I cant 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 isnt paying child support be cause he doesnt have any income coming in And then custody issues came up th e line, and all of a sudden she started poisoning Ryans mind, and he doesnt 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 whats 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 wasnt, 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, shes 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 theyre living out there with her older son
257 Now its 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 arent fighting anymore. So even though theyre not physically seeing each other, at least theres 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 couldnt 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. Its perfect! I mean Ryan Blown away! Congratulations!! Im 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 Its a problem I mean hmm stroke is difficult Mind works Perfect, bu t its 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,
258 I dont know some days its hard to do because I I sad Im 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? Its 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. Thats 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 its 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.
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, its better bef its better than before! So I I said, hmm you know, learning to one hand! Like hmm like now two hands thats putter, you know? But its 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 its 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 dont 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
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! Whos 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! Were 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 hes hes hmm hes 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 hes 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 as hand resting lovingly on his. Just give him some time!
261 Has Tom changed? How has he changed? Lets see I think hes compassionate more sensitive to say if he hears something on the TV or radio, something bad that happened, hes 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 didnt know was there, and I didnt think he knew that was there They say everything happens for a reason I dont know if thats the reason, but If you had told me this was gonna happe n, I dont 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 didnt know that side of him, but I didnt think that he would have been this strong I mean, now hes just like super strong! He has his moments, but his determ ination is just incredible Hmm hes 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 doesnt 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 hasnt cu t it out, or anything, but its 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 werent, you know, are now, and viceversa I think for anyone thats 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
262 closer I mean, even all the crap with his ex-wife, and the custody, and the battling with the son and all that, thats behind us, and hmm fighting insurance companies Thats thats hard A lot of these people who have had stro kes and have aphasia, theyre in their 50s, 60s, and 70s, they already had a hous e, they already had grown kids Theyre either established, they were established or they were retired, had pensions, and were, OK, were just like in th e prime of life here! I dont know if we would have been as committed and as strong as we are now see, because we werent together that long I know at the begi nning he depended on me, but you know he thinks Im strong, and I mean, I know hes appreciative How do I see him now that he has aphasia? Oh Hes my sweetie! Figure 30. Erika and Tom during Christmas in 2004.
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 Curts 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 masters 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.
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 Curts 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 rts 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.
265 After Tom and Larry concluded their presen tations, it was Curts 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 didnt 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 Curts 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 Curts 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! Were in!
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 Christies 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! Im 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 Ill 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.
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. Hes got nine brothers And two daughters [ Meaning sisters] Eleven Siblings Its 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]
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. Hes got sober Twenty-two years ago Hes a strict disciplinary Disciplinary caring He beat me severely Sometimes
269 But hes an alcoholic I was sixteen or seventeen I beat him, finally! But now hes pretty good. Hes loud, sometime Soft sometime What made him sober up? I think Mary, my mother Curts Siblings Peggy Bob Greg Half brother [Meaning half sister] She is Clean [Laughs] Peggy is a nurse. Shes in Oklahoma. Greg was living In Venice, Illinois He is good guy Hes alcoholic, Of course He is 62 Still drinking Stubborn He is president Waste manager Jacksonville Big company! Hes rich! Hes a good guy! He went to AA A long time ago Twenty-two years Greg been sober!
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. Were from Illinois, both of us Ch ristie explains, and we were in grade school or junior middle school together!
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. Thats 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. Shes 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 thats 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 werent 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 Its b een going on and off ever since then!
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 didnt 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 thats when you quit playing music Except maybe on weekends, and got better at school and took it more seriously *** A long time Fourth grade!
273 I like the saxophone! Im a jazz musician And rock n roll of course, in high school!! I take lessons And the school band Im good! Six nights a week Ive been playing! Im high school! Junior high! School Oh not so good! The lower bottom But I graduated, finally! [Laughs] Oh boy! Im intelligent Sometimes It is fun! I love the saxophone! Greg, brother, plays guitar Ralph, my father, is a guitar nut! Bob plays guitar, too
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 Hes good! He played with Elvis, Everly brothers, Hank Williams He still plays, every day. Two times a Two hours a day! At least! Hes good! Really good! Hawaii to Granite to Florida I knew Elvis and some jazz musicians, but to Curt and Christies 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.
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! Dont 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 dont remember that! Christie concludes, laughing. Really? he looks at her amazed. Oh, I remember! he says emphatically. And thats 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, Thats 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 dont remember any What? Curt asks, curiosity rising in his brows. A proposal Christie continues. Well sort of he replies.
276 Oooooh, I dont 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 dont think so I dont 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 dont like Granite City, Curt continues. Why is that? I ask. Its a small steel mill town, Christie explains. Its 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.
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 its 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 Im putting the camera and papers away, I meet Courtney, Curt and Christies 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 shes s till living in Illinois.
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 Christies 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 Im eleven pretty much
279 Well, it started fourteen years ago [Meaning when he was fourteen years old] Im 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 Hes 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 Im in trouble all the time
280 At high school, drinking all the time You dont think about nothing Just drinking Just drinking A long time ago, fifteen years ago I lose my mind, almost The doctor said One day youre 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 dont need to drink, ever. Never, never, never.
281 Thank God for AA!! 1989 I got sober Finally Five years ago I had a stroke No more AA Well, rarely But Im gonna go, one year later Im gonna go back again! Christie, shes happy! Finally, I sobered up She is my sweetheart for life Trust me, shes puts me With me a lot! Thats the part of my life! Thirty-seven years Alcoholic What youre gonna do, but change life? Get over it! Gregs made it. I made it. Ralph made it, finally!
282 And Bob Hes still an alcoholic But well see Im 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 didnt 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
283 get along well with, everybody, but I guess for one he wasnt very family oriented, because he didnt grow up in a family like t hat, and he wasnt 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, weve been together al most forty years. We just have such a history together! We were always going back to each other, even though wed fight and break up. Wed 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 dont really know I think hed been wanting to and it just happened to be the right time. I cant 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?
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, Im joking. Zach is Zach, you know? Hes a ki nd person. Hes gonna make it some day! Shaking her head, Christie comments, Zachs not doing anything now. He quit school Im so worried about him Hes talking about getting his GED. I dont know whats going to happen with him He just got lazy, I think. He just got disinterested in school, Im not sure why Hes 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. Hes 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. ***
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 werent, 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 wasnt 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 didnt know how to do it! Always drinking Always!! Two kids and the beer every day Religiously! Oh, man!! Being father, I didnt know how to do it, but
286 I tried Now Im happy! Im proud of Shawn, Courtney, and Zachary Im 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 dont know I guess my dad was a perpetual learner.
287 Perpetual Learner Im 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 Im getting by Yeah Christie nods, Once you gradua ted from junior college you went to Southern Illinois University, and thats 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! Thats my pa ssion! Fossils Monkeys and hmm Dinosaurs Yeah! Geo-anthropology First masters degree. Then, well, 90 no, no, Early Its 19 89 I went to Back to school hmm Exercise physiology. Hes always worked out. Christie clarif ies. Hes always been a weight lifter, since high school!
288 One hundred and thirty Five years ago, Ive 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 Im a assist .assistant of di rective of Mastodon Park digging up bones Halsey Miller, hes my professor. Hes a good guy, my mentor. I always liked him. He died heart at tack, he replies. He was also into exercising, wasnt he? Christie confirms, checking her memory. Yeah, Curt says, and beer too Thats 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.
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? Im 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 Curts 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, thats 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.
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, Thats all um Ten years ago Thats me! Almost in disbelief I exclaim, Wow! Youre kidding! Th ese weights are humungous! Thats Six Eight Seven hundred and thirty pounds! Curt says. Holy macaroni! I say ast onished, Thats a lot. Thats a picture world reco rd eight hundred pounds! Jesus! I exclaim, eyes wide open. Laughing, Curt explains, Well, the 80s! In St. Louis. How did you do it? I ask, truly puzzle d. Doesnt 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 Its dedi cation, I think And lots of practice!! Christie chips in.
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, thats 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.
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 didnt 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 Couldnt decide what he wanted to do! Christie smiles. Yeah Curt chuckles. *** I counselor in
293 [Sighs ] 19 90 96 Really recent hmm eight years ago Im a counselor! Ive 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!] Its fun!! And hmm introducing myself, and Talking about the sober life Thats all I was good at my work I like my work! Its a rewarding!
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 Christies 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.
295 *** April 14th, 1999. Curt was at USF. He was a teachers assi stant, or whatever thats 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 didnt 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. Thats 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 couldnt find him, I t hought the worst It was it was a scary trip. He was in the ER until about one oclock in the morning and we didnt 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 couldnt 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
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 didnt 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, Its OK! Just Greg Oh, hes 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 didnt know anything In the hospital, very confused Greg, hes crying I remember, hes crying I dont know why! I thought Im getting better!
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 couldnt speak, couldnt move his right side at all We werent sure if he could understand anything because he couldnt 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 Wed try to tell him something, and we didnt 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 didnt 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
298 Keen with memory At the hospital I slurred my words Ba... ba... ba I cant 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 Its funny I remember this doctor He was a limp limping I saw him one Two or three times ago But other than that Nothing
299 I was like a puppy dog Its 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 wasnt 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 brothers 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.
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. *** Weve 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. Its always been that way Its nice, because its 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 dads stroke *** Years ago I had anger, frustration, anxiety, but no more I mean, alcoholic is bad Fifteen years ago,
301 Im through You had that when you were drinking, but since you quit youre much calmer Oh yeah, much calmer But has your stroke been affected with those? Not really [sighs] You didnt 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 Thats true Didnt want to go places or talk to people you didnt know A long time ago, yeah. But no anger. *** Three years ago I still confused
302 Now my goal is helping people Im 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 didnt practice, he really didnt try to do anything. I think he was expecting it woul d all come back So he didnt do anything to try. He had a physical therapist coming to the house to do exercises with him, but he wouldnt do any practicing on his own. Hed 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 Curts perception of hi s rehabilitation process, I ask him,
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 didnt try t oo hard Christie replies. Probably more depression, ev en though youve always said you werent 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, Thats true I think possibly Im 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, thats true I dont 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 wasnt used to dealing with him, and in
304 the beginning he wasnt as good as he is now Certain thin gs I would expect him to do for himself, but Hes always been lazy, though, Christie adds. He doesnt do a whole lot to help around the house and he never did. Hes just been lazy. You were brought up this way, and we let you stay this way. Its hereditary Curt responds with a funny smile, waiting for the comeback. Thats 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 youre trying to be good Picking up where she had left off, Courtney continues, Another thing he is that bothers me Lets hear it! Curt says, and I wonder if under the cheerfulness he was just bracing himself for impact. He always talks about what hes doing Courtney starts, How much better hes doing, and what he did today, and He doesnt ask what we did Hes 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 didnt 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, hell just butt in, Hey, look at me, look at me, and what I did she says, imitati ng Curt. And its rude, but I dont think it has anything to do with the stroke thats just the way he is!
305 Im a sociopath! Curt says tragicomica lly. As I sit in the middle of the quiet cross-fire, I am impressed with Curts sens e of humor. I suppose it was a pretty strong shield. Hes got an excuse for everything! Ch ristie says with a look of routine and adds, Self-centered is a good word Im proud of everything hes done, I think its great but sometimes Thats 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 doesnt want to hear it Courtney concludes. Oh yeah Thats 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! Hes sixteen or seventeen Hes a young Person
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 dnt do anything, he couldnt talk to Zachary, so they grew apart. Still now he doesnt talk to him much. It hasnt been good for either one of them I think Courtney has done be tter with him because sh e understands where hes been and what hes going through. Zachary is too young. Like I said, he wasnt here a whole lot, but when he was he would talk and do things with them. But he wasnt here a whole lot for ballgames, or sc hool activities, things like that I think they were kind of resentful he wasnt. And they still are. Th eyll tell him about it now Oh, you didnt do this with me, or you didnt 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
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 didnt 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 hes not going to be able to do anything. Before he had his car, hed take dads 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 dont think it was a matter of who. Bu t my dad wanted to say something to him and couldnt really tell him
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 dont like to play golf, so I dont go, but Im 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 hes 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 didnt really know anybody there yet or anything But It was good to see him out, and see that there was a group for people! Its just a sh ame that in everyday life they cant really have much respect because people just dont understand Thats the way it is
309 My dad and I We butt heads a lot Im looking out for my mom. I try to be sensitive to her and everything that shes going through. And my dad is kind of self-centered I know he holds her very highly and everything, but its 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, Im 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 didnt even know and he would help me write a lot of the papers. My mom helped me through nursing, and now that Im going back to school Im taking a philosophy class, and dad said he wants to read the book and stuf f, but Im just not sure that hes going to be able to I think now its mo re me helping him on his homework I don't know that hes going to be able to help me this time around He always went to school and hes very smart. He was able to go very far on in college, and so Im hoping that ma ybe some of the brains got passed down and I can go too I have my RN associate now, and Im going to get my bachelors and maybe a Masters degree in nurse practitioner, or physicians assistant, or something in nursing. I work in the ICU now and I like it. Its 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
310 youre calling at two o clock in the morn ing! Its 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 youre 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 theyre all nurses!! to which Courtney replies, What? Are we stubborn!? Cmon Curt answers, indicating th at question had to be rhetorical. Yes, were stubborn! Courtn ey gives in with a sigh. Finally! You admitted it! Curt says victoriously. I dont 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 were What is he trying to say, probably, is that were just strong, independent women Yeah, thats 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.
311 I guess Ive 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 Im a little bit more laid back than they are, but Courtney adds quietly, waiting for Curts reaction. Hmm he replies in disagreement. I like to think that, but proba bly not Courtney says smiling. I dont 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 were stubbor n Courtney tells her. Hes 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 Im not No Christie remarks, Theres 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
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 Its funny But Im here t hough! Thats all that matters! he says, laughing. Well, Christie interjects, You started going to the aphasia group at Sarasota Memorial, and then USF Yeah Im a social butterfly! he ag rees, laughing. Working at USF, speech department, three days a week! Thats a full time job! But I love it! Yeah Christie nods, I think the most improvement hes had has been here, walking in the neighborhood, and going to speech therapy up in Tampa Its 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 thats how we got started there! It has ma de a big difference! And Ms. Paul Curt says with a sm ile, Shes a sharp cookie! Shes 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 thats 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 thats when he got motivated, by going up there, starting to spea k better, feeling better about himself That really helped a lot!!
313 You know, its funny I always thought that after the first six months that was it, youre not going to get any better. I was a nurse and I always thought that! I mean, thats what you read, but When I first started goi ng up there for the group meetings they kept saying, Oh, dont believe that! And its tr ue! They do get better! Everything is a lot better now Im just happy that its work ing now, hes 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 dont 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? Its life! And Im going to speak flue ntly and walk better, much better!! I dont doubt that! I say as I smile. I dont 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.
314 Oh yeah! he exclaims. All here! he says, pointing to his head. *** My goals is Walking better and Talking fluently Thats 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] Im 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. Its 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
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. Curts speech at the Speaking Out! Convention, 2004. Who started the whole golfing thing? Wasnt 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 its fun! Membership now and I beat Larry and Tom and Bob! You play a lot more than they do! Thats true They dont play every day! Pretty good, though! Youve gotten good in three years! I hit a five wood, 130 yards! And I chip with two hands! Getting pretty good!
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 youve met since your st roke Christie remarks. Yeah Curt acknowledges. You dont 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 thats your brother, Curt Christ ie remarks. You have friends from Granite City that still call you and talk to you, but theyre old friends. Youve been friends with them for many years! Your frie nds that you had here for just a few years before your stroke you dont see anymore They were workout buddies, basically Well Thats 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. Theyll just go on and on for hours, some of them will start crying, hes very wellknown Then whenever he came down here, it was kind of No one really
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 whove had a stroke because they dont understand, or You dont know how really he is, so Up there, they dont care Whenev er my dad comes up, they think the world of him. On the Road Again As I think about Curts 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? Im 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 hes doing it two days a week! Hes 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! Im shy I prefer driving Much easier Th e university is hard talking I prefer driving Good change! he concludes with a relieved sigh.
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, Im scared he says laughing. Shawn and her boyfriend drove down just to see him present Just for those fifty minutes! Chri stie explains. I cant believe it!!! Curt says, moved and exhilarated. Shawn hadnt seen him for quite a while! Christie mentions. Shed 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, hes 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!
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, Im shy!! Of course! he replies with confidence. Well, not that much Christie comments. Its a small group Ten people th ats 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! Im still I dont think youre half as bad as you used to be Christie disagrees diplomatically.
320 Shyness is always a problem But now I take Inde ral Wonderful medicine! Speaking Out! one tablet, thats all! Twenty minutes ago! Is terrific! Its mostly a heart medication Christie explains, Im not sure how it works. Probably lowers your blood pressure Its calming you down Its 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 hell say that I m hateful and that I dont 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 hes 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 didnt seem t hat he understood it all Its hard to tell what he understands and what he doesnt So I didnt want to push the issue anymore. The next day he was talking about again about how much better hes 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
321 Hes never had a bad day, hes alwa ys happy, so I thought that Id better not push the issue because I didn t want him to get upset. And I think about how hard hes 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 whats going on here kinda thing? I don't know Then I felt bad for pushing so much As far as being a father I dont think anythings changed a whole lot except for, like I said, its hard to communicate with him sometimes, just because hmm I guess you couldnt 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. *** Hes nosy Yeah, he is! Hes afraid hes gonna miss out on something every time Im in here, cooking, talking on the telephone or if Im reading something he has to find out whats going on
322 Im inquisitive! If Im on the computer hes looking over my shoulder, and I could still be on the same page and hell still be looking, like, Whats 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 Im talking on the phone youll just stand there, quit walking, just waiting to see w hat Im going to say Just nosy! Thats true *** Sometimes hell say, Well, I have aphasia, so I cant say that or I cant explain that and kind of use that as a smoke screen. I think thats his way of dealing with things, to stay on track wit h being a strong person, staying busy Thats always been his thing: If he stays busy, then he doesnt have time for anything else. I think thats how he deals with a lot of stuff, to kind of block it out and keep going I think its just been the way he was probably raised, knowing my grandpa I dont think hes really ever been asked, or forced to, deal with everything.
323 It Happened Get Over It! Im content! Im 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? Im happy all the time! Im up early Bright eye and bushy tail! I will beat aphasia! Im confident! In the mirror Survivor I survivor now
324 Five years ago, watch out! But now Im back! Five years ago I too rushed Graduate students Teachers, All types of different problems But I smell the roses now! Helping people, thats my goal, in life Miss anything? Not really Im golfing, working out what to miss? Soul Mates Christies my soul mate for life She stuck by my side Everyday in the hospital Wheelchair bound Oh I love her! But Shes stubborn!
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 were just together more Because Curt slowed down so much its better, in a way Its just different and its 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, thats not good either she says and laughs. Just cant be happy, I guess! But it is, its a lot better now Its 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. Thats good to know! he sighs in cont entment. You are my soul mate for life!
326 *** Before I turn my recorder off, I ask my last question. Christie, what do you think of Curts 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 Im sick, remember? No, youre not sick she says firmly. I just wish that he would have done it before, you know? Not waited so long Im here, though thats 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.
327 Chapter 10. Dharma Foreshadowing Excuse me, are you from Ithaca? I will be because Im going to live with my fianc in Ithaca, I replied. So thats why you look so happy, the stranger stated. I nodded Yes, pleased that my delight was so apparent. Im 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.
328 Hes beautiful, I said, admiri ng the childs big, bright eyes. Hes perfect, the doctor murmur ed, even though he has cerebral palsy. I was visibly shocked. Its 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 doctors 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 isnt perfect? What ri ght does society have to prejudge innocent people? The doctor whispered almost to hims elf, Theyre scared of anyone different whether one is ill or deformed really doesnt 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.
329 Unconsciously, he rubbed his thumb over the photograph, saying, Hes 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 companions 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 dont 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. Its kind of superstitious thinking. He hesitated, then sadly murmured, T heyre wrong, you know. Theyre very wrong. (Barbara Newborn, Return to Ithaca .)
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.
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 Ill 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
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 50s. 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 dont think thats 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
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 Barbaras 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 shell never ever grow old.
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 arms 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.
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 wasnt 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.
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 doesnt 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 Im 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. Whos a Swami? I ask.
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 thats 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 wed 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 dnt 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 youre 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
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 ones whole me aning with ones 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 its 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?
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 its yoga, yoga is being aware of your sens es, and being aware of other people, when theyre deceitf ul, when theyre 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 dont know how I would be if I didnt 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
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 dont 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 its the spirit, its my thi ng, its the eyes! What really made people talk to me, or be with me, its not the things I say!
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 weve been through when we moved to the U. S.! The things we di dnt know, the things weve 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 wed 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 were not alone That makes a huge difference! Yes! And seeing that y oure 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 havent the faintest idea on the dir ection that Im he aded. Im 22 years old and Ill be 23, 24, 25, by the time Ill r ecover. I just cant afford to waste
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. Were too different. The awful realization Ive come to is that Ive 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 whats to become. Life = ? Barbaras personal journal entry One question I had, I continue, And if its 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 Its not redefine its 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 thats 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
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 its not in redefini ng relationships its 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 havent 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? Theres 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 youre incredible, youre the most beautiful woman Ive ev er met to me, and giving me self-confidence. So Id 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,
344 but I had many wonderful people to help me along the way. In fact, my committee chairmans 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 Universitys 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
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 couldnt type, I couldnt be a waitress, you know? Theres 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 Im 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 were You give up, it is when it comes! Youre not looking is when fortune comes! I was always on the search, but I didnt know what I was looking for, having not had that experience. But then I became a rehab counselor. I didnt 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 its 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
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 its 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, thats 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 dont like in this world is that there are divisions. Stroke aphasia, professionals layperson, but were all one, and were all in the same place. You know? We have to know that were not alone. I think it takes patience with your own life, and it takes a ki nd of confidence and se curity, that youre 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 Im 53 My memory is not so good you know? And I its sometimes difficult to remember first names, last
347 names What I did yesterday is no pr oblem, but linguistics is in putting words together! Theres 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 Im tired I dont really focus, and although these are questions in everybodys mind Its more a concern when you have aphasia then when you dont. One of my clients is head injured, so she cant get insurance because you know, just theres a question of shell have most likely dementia or Alzheimers. 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 dont know whats 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 cant make any future plans. Just live in the present; trying to get well. At least thats what my parents expec t me to do. But thats 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). Barbaras personal journal entry September 28, 1973
348 I decided not to lay out my future goals as yet. For when I do I just worry about them, and I feel Ive got enough to worry about right now. Like getting a lot better for one. So Im 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 wouldnt 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 Im going to smile like I used to and really mean it when I do. And laugh and run and shout to the wind, Im me and Im not ready to die! Barbaras 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, youre always who you are. And youve got to redefine that person again, even without langu age. Your soul is always the same, and you operate the same personality. You know, youre just as st ubborn, or just as nice, just as willful
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. Youre really cut off. I guess that, since everybody else is talking and understanding, you feel te rribly left out. You cant contribute anything in conversat ion. You cant even listen right, because sometimes you cant understand! And its terr ibly You know, unless people have had aphasia, or if like in your situation, working with people w ho have aphasia, its 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 dont know whether Im grateful . But Its just gentle acceptance . You know, my life would be treme ndous anyway! We both laugh! I dont 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
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! Its all over the pl ace I mention, referring to her home. But I dont know what I would have been if this hadnt 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! Its in me! And compassion I think that I would have disc overed that, or would have uncovered it every other way too if I didnt have but I thin k that I took a faster route she exclaims and chuckles.
351 Chapter 11. In Exile in Ones 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 didnt 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
352 after their strokes. This view may not have been concurred by all family members (e.g. Diane in Bobs 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 rs (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 individuals narrative may provide clues as to how each one of them has reconcil ed their presents and their pasts and moved on.
353 Vicki and Larry Although their motivations were circumst antially different, Vickis and Larrys 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 Barbaras jour nal (which contained several poems and reflections on the nature of her communication difficulties and their implications for her sense of self), Larrys and Vickis chronicles were intrinsically linked to their rehabilitation pr ocess (i.e. Larrys last journa l entry was linked to his last days in rehabilitation in the hospital; Vickis calendar, six months post-onset, contained no more notes). Thus, their do cumentation revealed objective landmarks in their fight for
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 ones 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, Vickis and Larrys 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 Susans 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
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 Vickis and Larrys stor ies, Bobs 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 Bobs and Edies 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 Bobs 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
356 ability to play the guitar normally (more so than the ability to speak fluently). As a spouse, however, Diane witnessed Bobs 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, Bobs 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 Dianes view, however, the present and the past still remain disconnected, and longing and yearning for the Bob of the past still remain.
357 In Edies 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 (Edies daughter ) was gradually confronted w ith facets of her fathers 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 familys past and as a caregiver for her mother). With Cathys 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 Bobs and Edies 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.
358 Tom In Tom and Erikas 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 Toms 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 Toms 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 dont know that he would have been able to handle it . plus I didnt 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 didnt know that side of him, but I didnt think that he would have been this strong I mean, now hes 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
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 Barbaras 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 Barbaras 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
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 Curts 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
361 is in a foreign language that she cant 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
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 1940s and 1950s, 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?
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 aphasics 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
364 speech and language impairment. Why is that, however? Why are clinicians, in so many instances, afraid of opening Pandoras 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
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 clients 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
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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374 Websites National Aphasia Association. (1999, June 22). Aphasia Fact Sheet. < Accessed June 21, 2005, http://www.aphasia.org/NAAfactsheet.html >
375 Appendix: Mr. Johnsons Life History Portfolio
376 My Childhood Grandma Fritzs doll Paul, the mechanic The Youngest Eagle Scout
377 My mother took this picture. I can still remember the smell of my doll. My mothers mother made it for me. Grandmma Fritz.
378 The mechanic! My father, my older brother Hank, Donnie, and Paul, the mechanic! Paul probably 2 years old.
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.
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
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
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.
383 The Navy R.O.T.C. The Square Knot Admiral & Boot Camp WWII Brothers in Guam
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.
385 Boot camp: Because of R.O.T.C. I was leader of my boot camp group. They called me The Square Knot Admiral.
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
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.
388 This was the first trip I made in Honolulu.
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!!
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 dont 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).
391 My brother, Japanese rifle & bayonet and I dont know what happened to that I had this Bougenville Island (thats where I got the rifle and bayonet). Japanese were POWs at the time and they had to get rid of their weapons. Thats how we got the rifle and bayonet. I dont know how many Japanese (lots of them, though). The rifles, and the bayonet, and samurai swords and all the
392 weapons, all that, put them in a pile. And thats 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!
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.
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
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!
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 didnt care!! Hes 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
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.
398 My boat division! Officer of the Division Ernie Pyle
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!)
400 This one Louis Wyss and me on the ship. He was shipmate and he was New York, but he was a motor mach
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.
402 At the time it was called horseshoe lake! Now it is Carrollwood. Before it was only woods, nothing but woods!
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.
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.
405 After the War University of Florida Fraternity Delta Chi Falling in Love Munchkins
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!!
407 He was lackadaisical. My father-inlaw called him a hairpin. Ms. Bettys 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.
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 dont know Boy Howdy, I was going to tell you, I was going to marry her!
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
410 Linda and Debbie all grown up! And well educated!
411 My Mom said, he was good at fishing, but Betty was the best thing he ever caught.
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
413 And all the little munchkins! Now the munchkins are: Teacher Physicians assistant Lakeland air conditioning business Cabinet shop Surveyor a lot of land + an island! Eye doctor Caterer Policeman (Tampa)
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 Dons 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.
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 didnt 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!
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.
417 Archery & Championship
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
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!
420 Hunting Expeditions (Minnesota, 1992)
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.
422 My brother and sister in law met in Washington, D.C. I think that was in the apartment house. The Florida house! Thats what it was called! Mary, Hanks 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
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!
424 Hank and Don holding an icicle in front of the cabin. Behind them: Olsens 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!
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)
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
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, Hanks grandson Mark, and two of Hanks children, Tommy and Mike. This was from a different trip (not so much snow)
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
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!
431 Adventures in Dog Sledding Ely, Minnesota February, 2002
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!
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 Ronnies. He is also a doctor.
434 This was the yurt. It is like a tenthouse. Thats where we stayed. It was my home away from home!
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.
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 cant really see them in the picture). This pocket I had the treats for the dogs! I was treating the dogs for a good job!
437 This one (the black dog) lead dog, and this one (behind him) was named Birch. But I named him Lurch.
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!!
440 31 inches of ice! How about that? Deep this!
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
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!
443 The swamp between two lakes. All the water is iced. The frozen swamp! The guide Me Ronnie pictures
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. Ronnies finger
445 Ronnie and his team!
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!
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
448 My Stroke November, 2004
449 My stroke, I dont 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 dont 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
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,
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
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!
453 I worked with Steve Wilson (Rec Therapist) and Ryan (OT).
455 My PT was from New Hampshire and she went back to New Hampshire: Melanie Pamasco, thats 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
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!
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.
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 couldnt talk! In two days, I couldnt 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
459 some funny number confusions sometimes! Betty says its almost like an accent! (its just so cute, she says!) Golly! But we communicate, I pass my point across!
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Nakano, Erline Vieira.
Changes In The Sense And Perception Of Self In Individuals With Aphasia
h [electronic resource] /
by Erline Vieira Nakano.
[Tampa, Fla] :
b University of South Florida,
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 (M.A.)--University of South Florida, 2005.
Includes bibliographical references.
Text (Electronic thesis) in PDF format.
System requirements: World Wide Web browser and PDF reader.
Mode of access: World Wide Web.
Title from PDF of title page.
Document formatted into pages; contains 459 pages.
Adviser: Jacqueline Hinckley, Ph.D.
x Aural Rehabilitation
t USF Electronic Theses and Dissertations.