The Wounded Storyteller: Body, Illness, & Ethics, by Arthur W. Frank (Chicago: The University of Chicago Press, 1995)
In anticipation of a new course I will be taking this term, Spirituality, Health & the Christian Life, I read one of the required texts, The Wounded Storyteller, just for a taste. I was stunned at how closely Frank’s account of illness matches my own experience and at how closely his language (he might call it his discourse) speaks to the way I orient myself to my world. And so I thought I would jot down some preliminary reflections on the book, and then revisit them after I have encountered the book in the context of the classroom.
The first pillar is Michel Foucault’s The Birth of the Clinic, Naissance de la Clinique, which finds embedded in the self—assurance of modern medical discourse (with its reliance on and affirmation of such notions as science, truth and progress) an unsettling state of affairs which is contingent, political, and determined to entrench the locus of power — the medical profession and the interests it bolsters. It is an ideology. The language of diagnosis, treatment and cure becomes a self-serving script which all the players (patients, doctors, hospital administrators, underwriters, etc.) recite, believing no other script possible. The script tells the story of how one should be ill, of what meanings should be ascribed to illness, of who wields authority (and who does not) both within the story, and, stepping back from the narrative, as an interpreter of the story. The second pillar is Clifford Geertz’s An Interpretation of Culture, particularly its introduction which presents the notion of “thick description.” Geertz seeks to draw his discipline (anthropology) away from the paradigm of scientific method with its quest to uncover hidden mechanisms which can be described as laws and towards acts of interpretation which can be described as meanings. At least in part, this appears to be Frank’s project (although he rails against the use of the word ”project”) by nudging medical practitioners away from quest to uncover the hidden mechanisms of disease and towards an account of the meaning of disease. From explanation to understanding.
My second observation concerns Frank’s treatment of the text. He recognizes the need in all of us, when confronted with serious illness, to tell narratives of our struggles. The narratives vary depending both upon the place we happen to occupy at the time of telling and upon the identity of those to whom we speak. We tell a different narrative in the midst of our suffering than we tell years later, when the threat has receded a little; and we tell a different narrative when we speak to a doctor who is taking down our case history than we tell when we explain ourselves to our children. But the text of our story is more than the varied accounts we tell to those around us; the text is also our body. The body itself bears the evidence of our story, perhaps as scars, but always as the site of our suffering. Rather than text, perhaps the body is more like a page (the medium) on which the illness writes itself.
Frank begins by describing four distinct “pages,” and these represent four poles which create an interpretive matrix for understanding the problems which bodies encounter in the act of continuing to be bodies in the midst of illness. Of these four poles, one, the “communicative” body, is an ethical ideal and it is to this ideal that Frank gently nudges us throughout the book. “The communicative body accepts its contingency as part of the fundamental contingency of life” (48-49). “The communicative body understands that the body-self exists as unity, with its two parts not only interdependent but inextricable” (49). But the communicative body is more than simply an integrative whole. “When the body that associates with its own contingency turns outward in dyadic relatedness, it sees reflections of its own suffering in the bodies of others” (49). Integration occurs, not with the self, but with the suffering other.
From there, Frank goes on to describe three distinct narratives of illness. First is the restitution narrative. This is the narrative of modern medicine. In its general outline, it is the story of how a formerly healthy person receives a diagnosis, is prescribed a treatment, undergoes the treatment, and is restored to health. It is unclear who is the hero of this narrative, the patient or the medical practitioner(s). It is an optimistic story which inspires great confidence in the powers of modern medicine. Yet, in particular tellings, especially those tellings which end in the patient’s death or permanent disability, the tale falls flat. The second narrative is the chaos narrative. As a paradigm, Frank points to the first-hand accounts of Holocaust survivors. In effect, this is a non—narrative because, here, words can never accomplish what is expected of them — a distillation of meaning from the experience of meaningless suffering. Words fail and so there is no body, no text, just as the only response to meaningless suffering is dissociation, detachment of the self from the body (103). There is a collision between restitution narrative and the chaos narrative which becomes apparent in the interviewer’s shift of focus from suffering in the concentration camps to liberation. In a restitution narrative, liberation is the opportunity which ushers in a restoration of wholeness. But if one attends to the words of the Holocaust survivors, one senses that liberation means something different: it is merely one more event on a continuing path that leads nowhere. Most people respond like the interviewers who are uncomfortable with the chaos narrative and so try to steer the account towards the optimism of a restitution narrative. The third narrative is the quest narrative. This is the narrative adopted by the communicative body. In a sense, the restitution narrative can be told as a kind of quest: the search for a cure. But, here, the narrative can accommodate even those narratives which end in death or permanent disability. Instead of searching for a cure, the patient seeks a boon (a deeper meaning within the text of the body, perhaps an understanding, an insight, a sense of enlightenment) and then returns with a desire to share the boon. The narrative is driven by an ethic which orients the sufferer to the other, and so, at least in this narrative, the hero is unequivocally the patient. Frank offers a threefold description of the ethic (132-133) as one of recollection, solidarity and commitment, and of inspiration.
Frank rounds out his account of illness narratives with a call to witnessing through testimony. This is the chapter I understand least, perhaps because it is the one element in my personal experience of illness which I have yet to undertake. What is this illness I have alluded to? Sometimes I hesitate to name it because its name seems to trivialize it; I would prefer to tell the story as my act of naming it since only in its details does it acquire sufficient particularity that I can say of it: this illness belongs to me. I begin with a word: depression. Then I add an adjective: major depression. Then: treatment resistant depression. Then: moderate chronic depression punctuated by recurrent bouts of major depression that require lengthy hospitalizations, trials with 20 or so different medications, ECTs and countless other therapies. On and on I go, heaping one detail upon another, but never satisfied with my description.
As I have proceeded with my particular state of affairs, I have caught myself telling different narratives in the various forms Frank has detailed. After I had accepted that I had a problem (acceptance occurred over a period of several years, although I have yet to answer the question: acceptance of what?), I began to tell myself a restitution narrative: I would seek out a cure for my condition and, with the help of the medical profession, restore myself to my former wholeness … As I progressed on my restitutionary quest, my situation became so acute that I had to be hospitalized. In the period of a year, 95/96, I was hospitalized on four occasions, logging a total of between four and five months. During my hospitalizations, I opted for electro-convulsive therapy (ECT). Interesting that Frank concludes his book with a reflection upon chemotherapy. I regard ECT as the mental health equivalent of chemotherapy: shock the hell out of your brain and hope some good comes of it. At the time, it puzzled me that I should become dissociative, necessitating a stay in a psychiatric intensive observation unit. After all, the dissociative response is more typical of severe trauma or sexual or physical abuse, and I had suffered none of these. Now, I recognize that the treatment itself was abusive. And it spawned a chaos narrative. But two things happened which brought about a shift from a chaos to a quest narrative. First, during my final hospitalization, I found myself paying attention to the other patients on the ward, listening to their stories, doing small favours, even speaking to nurses on their behalf. I recognized a correspondence between my improvement and my desire to direct my attentions away from myself to the suffering of those around me. I recognized that, so long as I oriented myself in this way, I would no longer require hospitalization. Second, I grew to accept the fact that there is no “cure” to a major mood disorder. This was not a doleful resignation to a fate beyond my control; instead, it was the defining insight which has helped to empower me. Over several years, I have groped for a way to articulate what it is I am doing. I see myself now as returning home with my boon, my hard-won grace, my voice, which it is now my responsibility to share with fellow suffers. Perhaps my responsibility is greater for the fact that, unlike physical disease, mental illness affects the very organ which invests the voice with its power. The ravages of mental illness leave many sufferers too disorganized or bewildered ever to speak clearly about their personal journeys, or it leaves them too impoverished ever to acquire the needed skills, or too ostracized ever to seek out those who might hear them and support them and tell others about their unique insights. And so it is doubly a grace that I should now enjoy a clarity of thought, and a resolve to learn more, and a supportive milieu which formal learning provides.
As for witnessing and testimony … Is this not a good start?