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Shamanism, spiritual transformation and the ethical obligations of the dying person :
b a narrative approach
h [electronic resource] /
by Ellen Klein.
[Tampa, Fla] :
University of South Florida,
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Thesis (M.A.)--University of South Florida, 2010.
Includes bibliographical references.
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ABSTRACT: The person experiencing chronic or protracted illness is confronted with a complex array of physical, emotional and spiritual trials. This thesis explores how chronic illness can be viewed through the lens of the shamanic experience of dismemberment and re-memberment and shows how clinical, narrative, and relational models on their own are insufficient to speak meaningfully to illness experiences, but the integration of aspects of each of these models when coupled with shamanic initiation experience creates an innovative model for patients and those with whom they are in relationship.
Advisor: Darrell Fasching, Ph.D.
x Religious Studies
t USF Electronic Theses and Dissertations.
Shamanism, Spiritual Transformation and the Ethical Obligations of the Dying Person: A Narrative Approach by Ellen W. Klein A thesis submitted in partial fulfillment of the requirements for the degree of Master of Arts Department of Religious St udies College of Arts and Sciences University of South Florida Major Professor: Darrell J. Fasching, Ph.D. Carolyn Ellis, Ph.D. David Schenck, Ph.D. Date of Approval: April 1 6 2010 Keywords: Ethics, Illness, Spirituality, Relationality, Religion Copyright, 2010, Ellen W. Klein
Dedication For Dr. Fasching whose constant and generous expressions of grace are a mirror for me of the steadfast love of God. And As with all things, for my Avigayil who teaches me the great joy of responsibility.
i Table of Contents Abstract ii Introduction 1 Illness as Clinical Experience 7 Illness as Narrative Experience 15 Illness as Relational Experience 23 Illness as Shamanic Experience 29 Conclusion 35 Work s Cited 42 Bibliography 44
ii Shamanism, Spir itual Transformation and the Ethical Obligations of the Dying Person: A Narrative Approach Ellen W. Klein ABSTRACT The person experiencing chronic or protracted illness is confronted with a complex array of physical, emotional and spiritual trials. Th is thesis explore s how chronic illness can be viewed through the lens of the shamanic experience of dismemberment and re memberment and show s how clinical, narrative, and relational models on their own are insufficient to speak meaningfully to illness expe riences, but the integration of aspects of each of these models when coupled with shamanic initiation experience creates an innovative model for patients and those with whom they are in relationship.
1 Introduction s we tell our children at night. They are the stories we tell ourselves, the stories that help us make sense out of and find meaning in our experiences. They are also the stories we tell others in cathartic efforts to externally order moments of internal chaos and communicate who and what we are becoming as a result of our experiences. Illness in particular has the ability to disrupt the life story b ut as Arthur Frank in his work The Wounded Storyteller ry chronically ill person tell that will fully and meaningfully articulate the experience of dying slowly through a series of seemingly endless exacerbations and reprieves? What story can the chronically ill body tell that has the power of spiritual transformation even in the face of death? One of the earliest known genres of stories in which illness becomes a vehicle for spiritual transformation is that of the shaman found originally in tribal societies among the peoples of Siberia and Shamanism has made a significant historical contribution across
2 cultures to the human experience. At some point in life each perso n experiences a failure or crisis of some sort and, for this reason, the initiation experience, accordin g to Mircea Eliade in his work R ites and Symbols of Initiation represents a kind of spiritual death and rebirth, acting as an ancient rite of passage marking transition from one state of being to another, from the novice to the initiated. The passage from childhood to adulthood, for example, is a natural transition recognized in many cultures even transition, however. It is intense, tortuous, even violent and, I will argue, remarkably similar to the experience of the person ravaged by disease. Mircea Eliade, in his classic work on shamanism recounts a as part of a near death experience brought on by smallpox. During his experience, he leaves his body enters the realm of spiritual beings, is instructed in the knowle d ge of plants used in healing and then sees himself being torn apart, his bones strewn everywhere and then collec ted and put back together again. Life is breathed back into his body and then he is sent back as a healer to his people and awakens in hi s hut, back in the earthly realm Through his illness and near death experience, the shaman is torn
3 apart, re membered, and ultimately transfigured (Eliade, 1964, pp.38 42). Indeed, he is given three new bones that enable him to heal and communicate betwe en the physical and spiritual realms. Having attained spiritual insight and wisdom through his encounter with death, the shaman is transformed in to a healer and spiritual guide, capable for example of leaving his body at will, foretelling the future, heali ng the sick, and rescuing lost souls. experience, I believe, is uniquely suited for the chronically ill as a story through which suggests the fate of illness becomes the experience o f spiritual transformation becomes, in the story, the common bond of suffering that joins bodies in their shared vu l nera In this thesis, I will chronicle the ebb and flow of prot racted illness as a spiritual process of dismemberment and re memberment examining the aspects of responsibility to intimate others. I will argue that the experience of chro nic or protracted illness must not be reduced to little more than a clinical even t because it is not only a physical but also spiritual process represented best through narrative s and understood better as an opportunity for spiritual transformation as through which the sick may discover meaning M y thesis is that in order to fully understand the
4 nature of the illness experience, we must explore the spiritual initiation experience may provide clues for understanding illness as spiri tually transformative even in the absence of physical healing, and that obligation to intimate others is critical to that transformative experience. I have come to understand my own experience of chronic illness ience of dismemberment and re memberment. Each relapse is a death. The succession of relapses is felt like a series of tiny deaths, and in those moments of crisis, the physical and emotional despair is so keen that death would be a welcome release. Yet m y feeling of obligation to others who care about me and about whom I care will not let me give up. To abandon my relationships and the obligations embedded in them would be to relinquish a critical part of what it means to be human. T he face of my daught er appears before eyes squeezed shut in an effort to escape the circumstance in which I find myself. I n spite of everything, I am wooed by her, by my commitment to her and my obli gation to those others that I love who hold a claim on me as well My relati onships call out to me, their voices the only thing more audible than my despair. Bound by the claim they have on me, spiritual re memberment begins with that pivotal mom ent in which what is required of me supersedes
5 my desir e to give up. Like the shaman I find my experience has the power to transform rather than annihilate. The following narrative account illustrates a moment of exacerbation in my own experience of chronic illness. At the time, I could not know for certain t hat I would recover or that even if I did, I would resemble my former self in any recognizable way. It is inconceivable that I can have no feeling from the waist down, no appreciable feeling that would allow me to use my limbs, but I have pain, excruciating pain. Remember that I h ave had a child, experienced the primal pain of labor. Labor has nothing on this. This burns and sears and fires off rounds of electricity from my back, around my torso and down into my legs. It vibrates in concerto with the spasms in my muscles. It d oes not relent, does not even ebb like the contractions of labor, and worst of all I cannot see hope of birthing something beautiful from this. I am not one brought often to tears for myself, but they stream in hot rivulets down my cheeks and hopelessness begins to take up residence. I do not want to see anyone. I do not want to be seen. The contingent nature of my disease process leaves me dangling exacerbation, I am confronted with a third of a chance that I will
6 recover all I have lost physically, some of what I have lost, or none. And with each exacerbation something of my former self is changed emotionally and spiritually. I am never the same person I was before the relapse no matter wh at I may gain physically. I am not the mother, wife, friend or colleague I was before. I am, whether I want to be or not, changed by my experience. Illness makes an indelible mark on my life. The person experiencing chronic or protracted illness is c onfronted with a complex array of physical, emotional and spir itual trials. This thesis will explor e how chronic illness can be viewed through the lens of the shamanic experience of dismemberment and re memberment and show how clinical, narrative, and rel ational models on their own are insufficient to speak meaningfully to illness experiences, but the integration of aspects of each of these models when coupled with shamanic experience creates an innovative model for patients and those with whom they are in relationship.
7 Illness as Clin ical Experience Protracted illness presents a unique problem for patients, caregivers, physicians and ethicists and, in particular, is comprehended most often within a clinical ly medical ly and physically oriented para digm T his is evident in the current scholarly debate in which illness is primarily viewed through a clinical lens that focuses on the tension between paternalism and autonomy in medical decisio n making. Until the middle of the twentieth century the emp hasis was solely on paternali sm but has shifted since then to an equally radical focus on autonomy. The emphasis on absolute autonomy in medical decision making however has resulted in an over emphasis on patient rights that communicates a problematic deg ree of personal freedom and subsequently ignores the experience and expertise of clinicians. Two voices are most prominent in this debate. Robert Veatch and Edmund Pellegrino arguably represent the most noted and respected scholarship in medical ethics While Veatch more strongly represents the sentiments of autonomy and Pellegrino aspects of paternalism, b oth have shifted their approach to the fulcrum between the two extremes and make the case for the benefits o f representing elements of each in the m edical ethical aspect of the illness
8 experience The danger of focusing on one to the exclusion of the other is the potential for an imbalance in decision making power. Paternalism unchecked by patient autonomy has the power to over ride sel f determinati on or personal na rrative rendering medical decisions that may lack relevance for the patient. While incorporating the experience and expertise of the practitioner, absolute paternalism risks dictating clinical outcomes that lack language sufficient to co mmunicate hopefulness or reasoning that would inspire patient compliance. This kind of paternalism risks excluding the patient from the process and may therefore, do more harm than good. The risks of absolute autonomy carry equal weight. Placing decis ion making entirely in the hands of patients disregards the experience and expertise brought by practitioners to the process. In the same way that paternalism exercised in its absolute form by practitioners through clinical decision making may unwittingly excuse patients from the work and responsibilities that are a natural part of being human, autonomy risks outcomes in which the pa tient may excuse him or herself, thereby ceding to the disease process crucial aspects of personhood. As a result, the illnes s rather than the person with the illness takes center stage. Although they once were at nearly opposite ends of the spectrum, Robert Veatch and Edward Pellegrino have come to balance
9 the strengths and weaknesses of paternalism and autonomy by using virt ue ethics and the ethic of beneficence as complementary mediator s between the two extremes. What they bring to the problem is balance to the potential harm of absolute forms of both models. Speaking to the need for this balance, Robert Veatch offers an alternative to the heavy handed medical paternalism born out of the family are deemed that comes [for physicians] with initiation into (Veatch, 5 the clinician, whether using his own personal judgment or that of peers, to do what appears to benefit the patient even if the patient is not in agreement or does not want the offered articulates the root problem with forms of absolute paternalism in that it makes no room for the concerns of th e individual patient denying element s of personal agency. Subsequently, t he patient treated under pat ernalism is confined to a passive, receptive role and denied active participation in his or her own care. Veatch points out in his work The Basics of Bioethics that action and intent are key concerns in the recent history of medical ethic al decision makin g. He weigh s the differences in normative ethics between emphasis on beneficence (producing good outcomes) and
10 nonmaleficence (avoiding bad outcomes) in value theory and the emphasis on benevo lence (willing to do the good) seen in virtue theory (Veatch, 6 ). The physician acting paternalistically under the auspices of good intent, while benevolent (willing the good) may not have actually been beneficent (doing the good) (Veatch, 7). This is seen, for example, in the physician who avoids truth telling in or der to avert potential harm to a patient by cau sing concern itself with the physici choosing to avoid truth telling with a patient whereas value theory would More specifical ly, the concern is that this paternalistic good intent would produce actions that override the aspect of patient autonomy understood as the respect for persons (Veatch, 7). Fortunately, a more recent emphasis has been placed on accounting for both the act ion s and character of the physician This is indicative of the move in medical ethics towards balance between the earlier extremes of each ethical model and also between individual values of the patient and physician.
11 eason [has come to function as] the cornerstone of secular bioethics Edmund Pellegri no does not support patient autonomy as the primary concern of medical ethical decision making (Pellegrino 140). Even though a n ethical perspective based purely on autonomy is in dire ct oppositio n to the Roman Catholic religious paradigm that dictate s his understanding of the san ctity of life, he could certainly not be accused of advocating fo r absolute paternalism either. While Catholi extreme pol e from the current antimetaphysical biases of contemporary bioethics he does not advocate for dismissing the concerns of individual patients (Pellegrino, 141). He does this to the extent that he believes the job of the clinician healer is to cure when p ossible and to provide hope to patients in despair but not to the 121). For Pellegrino there are clearly limits to the degree of autonomy p atients should be afforded. Rejecting purely autonomous actions such as euthanasia suffering and try compas
12 her actions. Pellegrino summarizes his conception of virtue in ethics in the following: ore than avoiding harm or even doing good. It means doing good even when it means sacrifice of self interest. Autonomy would focus on respect for persons and their dignity as creatures, not on some absolute freedom or license to do with our lives what we please. Respect for persons would, indeed, emphasize self governing decision making. But our freedom as creatures of God is always within the constraints of ethical and moral determinants derived from Scripture, tradition, church teaching, and the study of ethic s (Pellegrino, 1988, 122 123). Pellegrino does something here that Veatch does not. He offers a very personal definition of what it means for the physician to be vir tuous and the kind of character from which one should exp acti ons to be informed. I n The Virtuous Physi cian and the Ethics of Medicine Pellegrino examines the impact of virtue ethics when applied to the role of the physician. He notes a need for balance between action and character or intent simila r to what is fou nd The more we yearn for ethical sensitivity, the less we lean on rights, duties, rules, and principles and the more we lean on the
13 character traits of the moral agent. Paradoxically, without rules, rights, and duties specifically spe lled out, we cannot predict what pluralistic society, we need laws, rules, and principles to assure dependable minimum level of moral conduct. But that minimum level is insufficient in the c omplex and often unpredictable circumstances of decision making, where technical and value desiderata intersect so inextricably (Arras and Steinbock, 82 83). F or Pellegrino, ethics based in virtue must accompany virtue based in rights or law Perhaps more importantly, Pellegrino and his colle a gu e David Thomasma in their book on of Beneficence in Healthcare advocate for what t he y term in Here the concept of beneficence is re interpreted to function in the patient /practitioner relationship in such a way that patient autonomy compliments rather than compe tes with the practitioner doing the clinical good. The relationship is defined by an element of trust between the parties that each will act in the best interests of the other. This, I believe, is what Pellegrino is talking even when it means sacrifice of self 122). Through dialogue, both practit i oner an d patient express their wishes
14 and/or concerns and come to understand contribution to the shared decision making process. A terminal patient, for example, may come to understand the benefit of an undesired treatment as a means of decr easing pain or a physician may expressed without leaving the patient abandoned in the process, or allowing the practiti oner to run roughshod over the patient in a radical act of paternalism. Along with Veatch, Pellegrino and Thomasma wisely advocate for a combination of compassionate and pragmatic ethical approaches rather than o ne that takes precedence over or claims no use for the other. While issues concerning paternalism an d autonomy and value and virtu e ethics are only a small part of the complex processes of medical ethical de cision making, my intent here i s not to detail the many facets of the medical m odel but r ather to point out its major focus and highlight the fact that even at its most intricate, the model is still not enough. T he balance Robert Veatch and Edmund Pellegrino bring to the historical tendency in bioethics towards extremes in the ethics of pater nalism and autonomy is crucial for both patients and practitioners but t he danger remains in focusing solely on any of these clinical aspects in that alone they are insufficient to speak to the full
15 range of concerns for patients who are not ever simply a disease to be managed or c linical outcome to be effected. Even Veatch notes 51). As such, the purely clinical story, however canonical, does not have the ability to represent the full experi ence of illness.
16 Illness as Narrative Experience In order to understand and find meaning in our exp eriences, we live our lives in the context of story the stories we tell ourselves, and the stories w e tell others Darrell Fasching, in his book Comparative Religious Ethics explains the rich history of storytelling as a means by which to understand and express meaning found in the full range of human experience. Life, it has been said, is just a bowl f ull of stories. As far back as we can see into the misty recesses of time and the human adventure, human beings have been not only storytellers but story dwellers Their stories coursed through their veins and sinews and came to expression in song and dan ce. To this very day human beings see and understand the world through the lenses of their stories (Fasching, 10). Because we are not clinical beings, but individuals living inside a story, illness experiences examined through narrative are understo od ho listically and in greater detail. Illness is a kind of chaos that disrupts our story as we have come to understand it and furthermore disrupts our understanding of who we are in that story. Our lives are
17 inter r upted as a consequence of the disruption of our sense of self and who we are or are becoming must be reinterpreted, rewritten If medicine is to treat the whole person, it must have the whole story. For this reason, including the narrative aspect of the individual is crucial to understanding the p roblem of illness. This aspect is what the clinical model, despite its many practical and philosophical attributes, lack s Rita Charon, a physician, recognized the limits of the clinical mo del and the value of incorporating and listening to the stories o f patients. By encouraging the inclusion of patient narrative in assessment and treatment, professionals with practical wisdom in comprehending what patients endure in illness and what they themselves undergo in th e care of the vii ). to some of these failings, a support to these emerging strengths, and aspects of sickness and healt Having so clearly made the case for thinking narratively a bout illness as a complement to thinking clinical ly and as a benefit to both patient and practitioner she has emerged as an authoritative voice in medicine and medical ethics especially f o r clinicians. As part of listeni ng and thinking narratively, Charon examines the problem illness creates for the body and for the sense of self. The
18 [for] and can be observed to constitute As Charon points out, the [into] 88). So when illness mars the body, it mars also the self inhabiting the body. The following narrative vignette is drawn from a subsequent exacerbation of illness in which my body was wrecked by dystonia and seizures as a result of a lesion on the right hemisphere of my brain and illustrates the discord Charon says illness brings to the sense of self. Staring in the mirror, I do not recognize myself. As if looking in a funhouse mirror, I have become some distorted and grotesque cari c a ture of the person I used to be I am no t this person t his is not me!...the voice of my fading former self plead I me, but I am angr y and frightened by what I see, perhaps more an image reflecting the me I know My face twitches rhythmically wrenching the left side into an ugly smirk. The rest of my left side twitches along with it, my limbs curling in on themselves twisted and torqued into painful positions from which I cannot extract myself Ripples of
19 contracti ons roll over my abdomen and ribs and around to my back, squeezing me and from my diaphragm producing an animal animal. Surely there is nothing human about the state I am in now. I wait for each wave to p ass and wait more anxiously for the next one to come in its painful wake, wondering if and when it will ever stop. Here the distortion of body is so great as to produce a distortion in my o because the divide is too great between who I know myself to be in bodily form and who I see in the mirror. And so, the story I tell of my self is halted, discombobulated. I am in need of a new story to make sense of the chaos illness has wreaked not o nly on my body, but on way to become narrative truth. I need my health care providers as clinical partners to see and hear the narrative crisis created by my illness, but I too must reco gnize and listen to the loss experienced by the self and through the body. To do so is to make room for a new story of body and self to emerge. weds the practical, clinical demands of practicing medicine with the unfolding stories of patients. Together, all of the benefit of clinical intervention is actualized without
20 divorcing the patient from personhood. Most importantly, h er work advocates for approaching illness holistically and patients as persons not just d isease processes to be managed or medical decisions to be made. But for the patient whose life story has become no longer relevant in the context of illness, what kind of story can the body tell? Arthur Frank brings to the narrative conversation the ta les of the He gives the sick a voice their own changing identities, but also to guide others who will follow The wounded as tellers of story shift from passive receivers of care to active g wounded healer and wounded storyteller are not separate, but are Frank shifts narrative contributio n to clinical practice as ethics as he envisions it: neself illness is to give voice to the body, so that the cha nged body can easy t ask. For while stories can tell about the body, more is required 3). Illness stories are not however, only personal. As Frank says, they are also social, for stories are told to
21 and in relationship with others (3). The very telling of a story, Frank says, implies a listener (3). And so for Frank the question s remain what kinds o f stories can sick bodies tell and what impact does the social context have on their telling? looks at the kinds of narratives through which the sic and story the interruption that is illness. He describes three kinds of and quest. In restitution stories, the sick least often the chronically ill, seek and regain their health Chaos narratives are in direct opposition to the restitution narrative, in that they o n, [with the belief] that something is to be gained through the Each of these stories offers a way to navigate towards coherence and make reparation for the damage done by illness to the body and the sense of self. Frank argues t hat different people gravitate to different kinds of stories but whatever the choice of narrative; does not include any particular
22 (Frank, 137). Rather than survivors, the sick, he argues, may become (Frank, 137). Th e tr uth he alludes to is I believe, what is knowable through illness as a transformative spiritual experience by which I the face of death. The element of testimony, as Frank describes it, is In witnessing, the sick person as wounded storyteller takes responsibility for telling what may be uncomfortable or painful, and the listener r esponsibility for hearing the the sick are transformed into wounded sto r ytellers and in relationship testimony transforms the wounded storyteller into the wounded healer. Together, the narrative and relational aspects of Charon and life stories in which they occur. Both offer a crucial aspect to understanding the illness experience through the narrative framew ork their work provides. The insightful approach es to illness taken by A rthur Frank and Rita Charon provide a basis for examining chronic illness and physical brokenness through narrative, challenging as well
23 as augmenting the predominately clinical and t heoretical approaches to experiences of illness
24 Illness as Relational Experience As Charon and Frank point out, the illness experience is also a relational experience. An essential component of what it means to be human is expressed in our abili ty to be in relationship. In the same way that the sick are not diseases separated from their person, we are not persons completely isolated from others. And so, the experience of chronic or protracted illness as much as it may make us strangers to ourse lves and to others, must be considered in the context of the re lat ionships in which we exist. As we compose the narrative s of our lives, we do so for ourselves and for our listeners in order to make sense of the interruptions that are part of the natu ral c ourse of life. Illness often presents a more acute form of this problem and disruption it causes. Certainly, our listeners include the practitioners to whom we tell our stories to seek phy sical healing or comfort, but our listeners are also those with whom we are in intimate relationship. R elationships with significant other s require something of us. In F we are responsible to one another in the context of telling and listeni ng to stories, and for that matter in the context of
25 memory, but what I would like to suggest here is that responsibility to intimate others involves a degree of surrender of self to the other The purely autonomous self that may enjoy full expression of personal agency does not exercise a full expression of his or her humanity. Relationships have the power to shift our focus from self centered autonomo us expressions of singular self pursuit (or what one wants) to the self in relationship centered approa ch that consi ders the others with whom we are in relationship The chronically ill person may grasp for any expression of self determination in response to the diminished sense of self that results from illness, but this produces, I believe, a limited and even false sense of what it means to be human To explore this further, it is helpful to look at what it means to be in relationship with others. Two classic paradigms for understanding relationship that have deeply influenced Western civilization are model of covenant that has its historical origins in the biblical account of the Israelites receiving the ten commandment at Mt. Sinai. It is there that God compels the Israelites to enter into a re lationship of mutual obligation. God will guide and protect them and they in response will keep the law set forth in the commandments given to Moses. The covenant as it is expressed here is more than a mere contract between two parties. It is a tr ilater al relationship with God as
26 the unseen third par ty transforming our relationships from the mundane to the spiritual. As Jonathan Sacks describes covenant is more I Thou [with] God in between [as] that [which] joins self to self through an act of covenantal kindness. That is hese d (kindness) the physical deed in which soul touches soul and the universe acquires (54 55) For Aristotle, friendship functions as the primary model of rel ationship. In Books VIII and IX of Nichomachean Ethics he explores why we need friendships and how those friendships work. While often accused of narcissistic understanding of friendship does imply something helpful for understan ding our responsibility to one another. For Aristotle, humans are social creatures because for Aristotle, friends or intimate others act as another self, or another myself in whom I can see my actual self more critic ally and therefore more clearly (Aristotle, 266). As a mirror in which to better see and understand ourselves, friends are crucial to the process of self knowledge. We more easily see in others what is difficult to ascertain in ourselves in isolation (Aristotle, 264). Personal autonomy is not a
27 good or outcome with which Aristotle is concerned, for only in friendship can we achieve the greatest degree of moral growth. As he (Ari stotle, 271 272). These aspects of Aristotelian friendship in which relationship with intimate others, to whom we are indelibly tied, are crucial to our understanding of ourselves Within these relationships we find the place in which we are made better through our asso ciations and experience the best kind of perso nal growth. relationa l aspect of illness, the addition of the concep t of covenantal relationship may better facilitate an understanding of the importance responsibility plays in relations hip, and even more so in relationships with the sick. Indeed, Jonathan Sacks suggests this very notion when conscious Jonathan Sacks equates the exercise of responsibility to others with a full expression of humanity and its absence with loss. He cites the failures of Biblical characters such as Adam who loses pa radise [ and ] Noah the loss experienced as a result of abdicating responsibility and the story of
28 Babel as an example of what happens when we are responsible to no one but ourselves (Sacks, 146) In a n extreme act of hubris the biblical story tells us, the people of Babel 144). What the people of Babel, and o ften we, fail to understand according to Sacks is implies the existence of an other who has legitimate claims on my This for Sacks i s the very underpinning of covenantal relationship. he story of the sick person accountable to no one other than him or herself also represents a failur e of responsibility s never private; in biblical terms, it is a matter of covenant between two parties, [in the sick person, between the sick and their intimate others (Sacks, 144). T he se two relational models work powerfully together as a means for understanding illness as spiritual transformation and providing the most helpful articulation of covenantal relationship through which to explore the nature of intimate relationships and more specifically the concep t of responsibility between intimate others with whom we are in relationship.
29 Applying his covenantal model of relationship, the impact obligation and responsibilit y to intimate others h as on the experience of illness can act as a catalyst to inspire willingness in the sick person to undergo and even embrace the process of re memberment despite the uncertainty that is the earmark of chronic illness
30 Illness as Shamanic Experience While the idea of illness as a spiritually transformative experience is not novel, little focus has been given to illness as a specifically shamanic experience. The significance of the shamanic experience of dismemberment and re membe rment applied to chronic illness is that it functions as a spiritual framework for the very real experience of physical dismemberment and acts as a potential guide to spiritual re memberment even when the body may remain broken. The shamanic initiation ex perience, as described by Mircea restitution narrative described by Frank, does not require restoration of the patient to a previous and no longer available state. A ccording to Eliade, t initiation experience of spiritual transformation is brought on by a crisis, often an illness or accident and is followed by a near death type of out of body experience that includes an experience of dismemberment. Broken in spir itual body, the shaman experiences reintegration in a new self His or her bones are collected, transformed. The fol lowing account by Eliade describes the stages of initiation as follows:
31 The impo rtant moments of a shamanic initiation are these five; first, torture and violent dismemberment of the body; second, scraping away of the flesh until the body is reduced to a skeleton; third, substitution of viscera and reveal of the blood; fourth, a perio d spent in Hell, during which the future shaman is taught by the souls of dead shamans and by 'demons'; fifth, an ascent to Heaven to obtain conse cration from the God of Heaven ( 1994, 4). nor triumphant in the sense t hat he does not rise unscathed by his experience. Instead, he is like the biblical Jacob having wrestled wi th and been wounded by the stranger, only to discover he was wrestling with God, who changes his meaning he who wrestles with God and prevails (Genesis 32: 24 32). Both figures carry with them and are defined spiritually by their wounds. Theirs is not a story one takes up willingly, but it is a narrative for the wounded body that does not demand physical restoration but offers inst ead spiritual transformation. Recalling an exacerbation caused by a lesion on my brainstem, kinship with him and I hear in an acc ount of my own dismemberment an echo of his own
32 At some poin t in the night I have descended into the underworld. I know because I have woken in Hell. When I open my eyes the room spins violently counter clockwise. Placing my feet on the floor I stand shaking my head in futile effort to clear the double images. I list and c apsize, falling to the floor retching and unable to lift myself out of the pool of my own vomit. For months this spinning continues. The lesion has wreaked havoc on my equilibri um. My body does not know at any time where it is in space and I cannot nav igate myself. I have lost all direction. I am unable to walk without falling, and to slow an image on which I wish to focus I must tilt into the spin, squinting to narrow the double image. Daily I try this with ingle image of her to make eye contact with her so that she will kno w that she is seen by me. When finally the whirlwind of images begins to slow and even after they ha ve come to a halt, I find that I still do not kno w which way I am going I have lost m y center. This is my dismemberment; disease has broken me. My physical self has been wounded but my loss of center is my loss of self, the self I know, and with whom I had become comfortable t he one whose stories I kno w and told with ease. My sense of l oss is for this old
33 familiar self. Who am I when she is gone? I am not the self I was, admittedly, I did not even appreciate that girl until she was gone. Illness for the shaman is an experience in which meaning and purpose can be found. From his expe rience he gains spiritual insight and the capacity to act as guide and healer to others. To borrow the wounded healer. Similar to the dismembered physically, emotiona lly, and spiritually. And like the shaman, the experience of dismemberment may be followed by re memberment from which they may emerg e transformed. The shaman him the capacity and kno wledge to communicate between the realms of life and death and the ability to heal other s Having already made the journey into death, he is uniquely equipped to act as g uide to those who do not yet know their way. After similar encounter with death, t he sick person I believe has the capacity, like the shaman, to be transformed by the experience and given new insight and the ability to share the fruits of this tr an sfiguration with others. Returning to my own experience, I find that my encounter with deat h was not only physical, but also spiritual. The sense of self that was lost was my spiritual self and in order for me to be transform ed rather than annihilated by that loss I had to allow my former se lf to
34 able teaches, I had to release my hold over the abyss. A man went astray and arrived at a spot which had never been trodden by the foot of man. Before him there yawned a bottomless chasm. His feet stood on the slippery moss of a rock and no secure footh old appeared around him. He could step neither forward nor backward. Only death awaited him. The vine which he grasped with his left hand and the tendril which he held with his right hand could offer him little help. His life hung as by a single thread Were he to release both hands at once, his dry bones would come to naught. Thus it is with the Zen disciple. By pursuing a single koan [ spiritual puzzle which has upon which one meditates seeking spiritual insight] he comes to a p oint where he is as if dead and his will as if extinguished. This state is like a wide void over a deep chasm and no hold remains for hand or foot. All thoughts vanish and in his bosom burns hot anxiety. But then suddenly it occurs that with the koan bo th body and mind break. This is the instant when the hands are released over the abyss. In this sudden upsurge it is as if one drinks water and knows for oneself heat and cold. Great joy wells up. This is called rebirth (Heinrich, 258 259).
35 My despair is authored by my inability to locate my self, to find meaning in my experience and to find the story that will make sense of must will to plunge into that abyss, one must abandon oneself to the 5). Giving in to that despair is the very act that releases me from it. The shamanic narrative shift s the empha sis from a physical experi ence to a spiri tual experience, from physical death to spiritual death. Through the process of spiritual di smemberment and re memberment cannot, the possibility of spiritual transformation (i.e., the discovery of meaning) even in the absence of physical renewal. Just as language and story suggest that we are more than a physical body, chronic illness is more than a physical experience
36 C onclusion I said to my soul, be still, and let the dark come upon you.. T.S. Eliot As I have indicated my thesis argument is that in order to fully understand the nature of the illness experience, we must explore the spiritual dimension for it is here that out of brokenness and despair we may experience rebirth T he spir itual component of the sh initiation experience provide s clues for understanding illness as spiritually transformative even in the absence of physical healing, and is strengthened when coupled with a sense of obligation to int imate others The exper ience of chronic illness is the experience of darkness. Dark Night of the Soul and for those experiencing protracted illness, it is a series of many dark nights. How to manage the darkness is to find meaning in the experience of it, to find that which is meaningful enough to allow us to trust the journey wherever it leads. Each of the previous models for managing illness have provided some practical and even vital component for understanding illness and finding meaning in the experience.
37 Clinical approaches to illness accomplish many things, in not only the curative, but also the palliative sense. What they cannot do is address the spiritual and emotional sides of illness. They do not have an answer for the c ontingent nature of the disease process, for the kind of suffering produced by uncertainty. Mark Hanson in Pain Seeking Understanding contingencies of life, including and especially suffering, and to find meani think what Hanson articulates here is one of the criti cal reasons for rejecting any purely clinical model for addressing chronic illness. Medicine gives us clinical answers, but not necessarily fully human answers. For that we must look beyond the physical. We must seek out meaning in illness that will all ow us to embrace contingency and suffering thereby exercising more fully our capacity as humans. Therefore what I am suggesting is that the kind of answer we need is not one only concerned with the physical aspect of illness, but with how we become more fully human or retain our humanity in the presence of chronic illness and all that it entails. Narrative medicine gives us room to understand illness in the context of individual life stories and a way for clinicians to embrace
38 more than the physical suf fering of their pat offers ve, (xii). With Frank the sick can become wounded storytellers and wound erience that we see a story the wounded can tell that articulates the way physical suffering can give birth to spiritual awakening or rebirth. T he shaman is the bridge between the realm of the liv ing a nd the realm of the dead that for the shaman is where s acred ancestors reside What the shaman knows is that the living and the dead f orm one community and therefore, to quote Mitch Albom, author of death may end a life, but it doe s not end a relationship. It is this relationship initiation and transformation through dismemberment and re memberment as their own. This is the aspect I believe is missing from all of the other models a nd the aspect most crucial for compelling the sick to persevere through the dark night of chronic illness, through the myriad contingencies and unsettling state of uncertainty. The only compo nent sufficient to encourage this kind of commitment in the face of death is through the claim intimate others have on each other within the covenantal relationship in which we are responsible to someone beyond ourselves.
39 For this reason, when I cl ose my eyes to shut out pain or fear, the face and small voice of my d aughter appear. This is what she calls me to do. As John Dunne suggests in The W ay of All the Earth consciousness projects an imagined path for our life, like a beacon guiding us through the darkness, but what gives us a sense of adventure is discoverin g the unexpected that lies ahead in the darkness. It is the unexpected that overturns and transforms our understanding of who we are and what our life means and causes us to re narrate our life story. For we are always strangers to ourselves, who are mor e and other than we imagine ourselves to be. Suffering, disappointment and death enrich us in unexpected ways. So Dunne suggests we must and the darkness darkness is to share the sense of [spiritual] adventure which goes with the darkness and the journey into the night ( 210, 216 217). This journey is the journey we all must make, the one that leads inevitably to death but when embraced rather than struggled against lead s to insight that is the spiritual transformation that transcends even death (Dunne, 208). The following narrative account shares a moment in the dying of a young patient of mine many years ago. When I reflected on this encounter, I was able to see how a narrative with which she was
40 she was experiencing in her dying. Along with that, I found traces of Before today the last time I saw Emily was several weeks ago at her school. She was tired. Cancer does that to a teachers and to maintain some semblance of normalcy, her mother had reluctantly agreed to let her spend days or parts of days she felt up to it at school with her kindergarten class. Her teachers had placed a mat, the blue plastic folding kind, on the floor in the napping room. When I came to see her that day that is where I found her, laying on her side, her head haloed by downy blonde fuzz and resting on a tiny pillow that somehow managed to look large against her even smaller head. Her eyes were closed and her respirations coming in slight shallow breaths. I pulled another mat from nearby an d lay down beside her. Face to face, when she opened her eyes, we smiled at one another and I knew her time would be soon. think to myself that perhaps it should be. I know when I see
41 nearly ready to die. This ordinary scene of maternal comfort is shrouded in their shared lingering and longing and I wait. Speaking for th e first time since I have arrived, she asks her mother looks over at me and I smile a little, silently nodding my head urging her to follow along. She carries Emily into her room big bubble letters. Her mother puts her favorite books and pajamas in and tucks the b lanket Emily holds out on top. Scooping her up she carries her back to the overstuffed chair, dragging the case behind her. Settled once again, her mother own chest and pressing it to her mothers. Closing her eyes, still took her final breath. Emily has stayed with me. I often think of her and her encounter with death. She understood her dying as a journey, a trip
42 s house So she packed her bag, taking the t hings she might need along with her, but also leaving something behind. Packing her suitcase was a symbol of preparing for her death. Leaving the bunny, I think, was the symbol of the connection with her mother that would remain unbroken by her death. Em Lorrai ne Hedtke and John Winslade in Re Membering Lives: Conversations w ith the dying and the Bereaved is not about what might continue rather than anything but final. Instead, it was an invitation to continue the conversation even in death. As Hedtke and Winslade suggest, an start long before death [in order to] (5 6). Beginning those conversations in the way they describe makes [thei Furthermore, the ongoing connection acts as a comfort to those with whom the dying are in relationship I too consider the possibility of constructing this conversation with my daughter as a way to prepare us both for the next crisis for
43 even the final one. She lays claim on my life, as do the others who m I love and who love me in return. S he whispers i t there in the dark of respond. Through my obl igation to her, to those I love, I find meaning in what appears meaningless. My story becomes one of rebirth where w hat is born is not something separate from myself, but rather a new self, fledgling and tentative, subject still to the contingencies of my disease to uncertainty aware that to let go of my hold over the abyss is to embrace that darkness, to give myself over to it My ef forts to exercise radical autonomy in the shadow of death are pursuits for control over an uncertain outcome one be yond my control They are limited to the physical journey and not representative of the spiritual journey I am making in which I do not seek to control the journey, to shut out the darkness, but to trust my death does not come as the end the separation I fear Through my relationship s the spiritual realms of life and death are bridged and my physical death, whenever it comes, need not like the darkness be feared or rejected, for death may end my life but not my relatio nships.
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