Illness and Autobiographical Work:
Dialogue as Narrative Destabilization
Published in Qualitative
Sociology, Vol 23, No. 1, Spring 2000
Arthur W. Frank
Department of Sociology
University of Calgary
Illness is an occasion for autobiography, and memoirs of illness present openings to ethical ways of living. This paper describes illness memoirs as performative, creating the self they claim as their origin. The self that is claimed is dialogical, and the tension of this dialogue is to include the voices of others without assimilating these voices to one’s own. Physician memoirs, a spiritual autobiography, and a web site are presented as examples of dialogical autobiographical work occasioned by illness.
All else is means; dialogue is the end. A single voice ends nothing and resolves nothing. Two voices is the minimum for life.
Few people expect to enter what I have called “deep illness,” conditions that afford the person little perceived prospect of ever again living a life without some sickness or disability (Frank 1998a). Although systematic research (Becker 1997, Bury 1982) affirms this statement, I believe it as firmly as I do because it was once whispered to me by a voice of greater authority. I was in Chicago meeting with a group of very elderly residents in an independent-living unit of a hospital. I made a miscalculated remark attributing my surprise when I became critically ill to my comparatively young age at the time. The residents sat around me in a circle, and a very soft but firm voice from behind me replied, “You’re always surprised.” I’ve never doubted that since.
A self that has become what it never expected to be requires repair, and telling autobiographical stories is a privileged means of repair (Becker 1997: 166; Kleinman, 1988) though hardly the exclusive means (Frank 1997a). I have argued this position in a series of publications (Frank 1993, 1995, 1997a, 1997b, 1998a, 1998b) beginning with my own illness story (Frank 1991), a starting point that prejudices my sociological explorations no more than it informs such considerations as only personal experience can (Ellis & Bochner, forthcoming). I want to extend my previous arguments by considering autobiographical work as dialogue, a term I use in the general sense given it by the Russian literary and cultural theorist Mikhail Bakhtin: “Ultimately [for Bakhtin], dialogue means communication between simultaneous differences” (Clark and Holquist 1984: 9). What this cryptic statement may mean I hope to show below.
The kind of autobiographical work that illness occasions, as well as the sense in which the present paper may and may not be a sociological inquiry, can be suggested by two statements by Erving Goffman. The first offers an insightful description of autobiographical work of illness and the second needs updating.
In the conclusion to The Presentation of Self in Everyday Life Goffman writes: “A correctly staged and performed scene leads the audience to impute a self to a performed character, but this imputation—this self—is a product of a scene that comes off, and not a cause of it” (1959: 252). Goffman goes on to argue that the self is less an organic being “whose fundamental fate is to be born, to mature, and to die,” but rather should be thought of as a “dramatic effect” of scenes that are presented. The “crucial concern,” presumably for both selves-as-actors and sociologists observing them, is whether the self presented in these scenes “will be credited or discredited” (1959: 252-53).
Goffman allows us to understand how the autobiographical work of illness proceeds: first-person narratives of illness are the performative re-creation of a self that was in jeopardy due to effects of the illness (both embodied effects and social reactions). People tell illness narratives precisely in order to become the effects of their (performed) stories, and one effect of any autobiographical work is to posit the self that must have been the cause of that work but which the work has served to (re)formulate. This relation of self and narrative exemplifies a recursive process (Hofstadter 1979).
My project has differed from Goffman’s—to the apparent interest of many ill people and medical practitioners but to the despair of some sociologists (e.g., Atkinson 1997)—as I have not made it my business to analyze conditions for the crediting or discrediting of ill persons’ autobiographical work, which surely would be the proper sociological line to take. Instead I have sought to write commentary that will help to make ill people’s stories more highly credited primarily among the ill themselves and then among those who care for them. I have tried to be clear that this project is less sociological than “therapeutic and emancipatory” (Atkinson 1997: 334). If I have brought about any therapeutic and emancipatory benefit to the ill, my shortcomings in the proper methodology that Atkinson defends seem more than compensated, at least as I construct what is of value in my autobiography.
Thus I read Goffman as describing how ill people’s selves are the effect, not the cause, of their stories, how these stories can be credited or discredited, and how stories are constructed from culturally available rhetorics. But I have reservations about another of Goffman’s claims, this one from Stigma, perhaps the most useful of all sociology books to the ill themselves as they attempt to sort out their situation. “In America at present, however, separate systems of honor seem to be on the decline,” Goffman writes (1963: 7). “The stigmatized individual tends to hold the same beliefs about identity that we do.” Thirty-five years later stigmatized individuals no longer play by the rules Goffman observed, at least not all the time.
After Black Power, several waves of feminism, Gay Liberation, and the assertion of many other local “pride” and “liberation” organizations and public rituals, a case can be made that separate systems of honor do exist and many individuals whose identity was once “spoiled” (in the words of Goffman’s subtitle) now openly claim that identity and even claim it as a privileged state of being. Far from “passing” the non-visibly stigmatized proclaim their disease or diseased-related sympathy by wearing variously colored-coded ribbons (with distinct colors for AIDS, breast cancer, and lost children), or wearing tee-shirts that express pride in identities, or displaying bumper stickers including those that make affiliation with Alcoholics Anonymous less than anonymous (for examples see Woodward 1997: 27, 151). Marches, fund-raising walks and foot races, and festivals (including parades, food fairs, and performances) are some of the public rituals affirming these separate systems of honor through public display of numbers. Support groups (Becker 1997: 167, 202) involve fewer people but have a no less intense ritual focus on the affirmation of identities that no one wants but which are nonetheless affirmed as honorable in their consequences for self-discovery and service; I refer here to cancer as my paradigm and not to ethnic and sexual identities that often are claimed as both honorable and desired.
Autobiographical work, then, is a performance of which the ill person becomes an effect, and the effect can be to claim a place within a separate system of honor of those who share the illness or disability. My favorite exemplary claim to a self within a separate system of honor remains that of a woman pseudonamed Gail, speaking in an interview with medical anthropologist Linda Garro about her years of disabling chronic pain: “We have access to different experiences, different knowledges. And there are so many of us, too. What would happen if we all knew what it really meant and we lived as if it really mattered, which it does. We could help the normals and the whitecoats both” (Garro 1992: 129; see also Frank 1995: 141-42). I cannot imagine a clearer assertion of how times have changed since Goffman wrote Stigma. Gail claims privileged knowledge, she claims to represent many others who share this knowledge (giving the knowledge generalizability), and she claims potential benefit to society if this knowledge were to be widely accepted. And again, my interest is not to interrogate whether Gail’s claim is credited. Rather I seek to help create the conditions in which it will be more widely credited.
An interesting question thus arises of what happened between the society that Goffman observed correctly (as I believe he did) in 1963 and today with our various separate systems of honor claiming the positive value of previously devalued identities. The answer that interests me (among many that could be offered) falls under the general rubric of “agency” in the sense Goffman implicitly depends on: the tendency of people to try to take the most favorable line in any social encounter, just short of taking a line that is discreditable. Insofar as Gail’s claim is credited (and my own approving quotation of her words, following Garro’s approving quotation, is another move in the crediting process which doubtless has its limits but also has its successes), her claim represents successful line-taking: a performance of which Gail’s self is the product.
While autobiographical work is necessarily “framed” within the horizon of systems of honor credited in a given time and place, certain individuals exhibit sufficient agency to push those horizons toward inclusion of new claims. Their sense of themselves as ill people is not the normal, social identity-by-default. Rather they put together performances that claim different selves and thus make available to others the systems of honor in which those selves are creditable. Such autobiographical work is recursive and self-reflexive: the narrative performance makes a claim that the narrative itself validates; the cause of this performance is understood always to have been what the effect of the performance claims it has been. Commentators like me then come along and credit the whole performance as being effective, which is about as close to true as identity can get if we follow Goffman.
This argument stops short of suggesting that the autobiographical work of the ill creates its own footing, which I mean in Goffman’s (1974) sense of whatever anchors a performance in a recognizable framework and thus makes it intelligible to observers. Most often identity claims are asserted in relation to other claims that have already achieved some crediting, even if they remain contested. Thus current breast cancer activists draw their political agenda, and their “activist” sense of self, not only from earlier feminists but also AIDS activists as their model and precedent; the latter learned their trade and gained legitimacy in the Gay Liberation movement, which with feminism drew on the civil rights movement, which found inspiration in Gandhi’s independence struggles against the British in India—and how far back need one go? Claims thus asserted remain contested, but they have sufficient footing that they cannot be dismissed peremptorily.
Yet one problem with such identity claims is that the self they posit is too unitary, too much in control, even too masterful. Most illness narratives, including my own, are written from the perspective of a single consciousness that filters and organizes events. My earlier arguments about the necessity of story telling for the ill even suggest that the therapeutic need for autobiographical work is to create a performance of which such a unitary, organizing, masterful consciousness can be the effect. The story serves to convince at least the storyteller of who she or he still is and can become despite illness. The limitation of this story is that it imagines the storyteller becoming alone.
In this paper I want to consider stories that seem to be constructed on the alternative principle of a consciousness that is not monological (unitary, centered, having the last word) but dialogical, a term I will seek to specify progressively but which I intend in an approximately Bakhtinian sense. One of Bakhtin’s commentators specifies the aspect of dialogism that is most relevant to my argument below: “Bakhtin claims . . . that Dostoevsky’s novels are distinctly polyphonic, that is, they grant the voices of the main characters as much authority as the narrator’s voice, which indeed engages in active dialogue with the characters’ voices” (Dentith 1995: 41; see also Gardiner 1992: 24). What, I want to ask, is a polyphonic illness autobiography, and what is the effect of such a performance? My thesis is that the polyphonic narrative represents an assertion of identity and a way of doing autobiographical work for which ethical claims can be made.
Warning against the too-easy appropriation of Bakhtinian terms, Holquist offers the example of how Bakhtin’s radical implication for polyphony can be reduced to “no more than multiple points of view” (1990: 108). Seeking to heed this warning I present the difference between monological and dialogical autobiographical work in terms of a distinction between disruption and destabilization. Disruption occurs in almost all illness narratives when the narrator encounters someone whose action is understood as hurtful or incompetent. In her narrative of breast cancer Audre Lorde describes being told by a nurse that she must wear a prosthesis, an option she has rejected (Lorde 1980: 59; see also Frank 1995: 121 ff.). Lorde as narrator presents the nurse’s voice as being highly disruptive to her: “I was too outraged to speak then” (1980: 59). But as Lorde tells the story in her book, I as a reader had no sense that her narrative grasp as storyteller was in any danger of being destabilized. I had no doubts as to which consciousness, Lorde or the nurse, would prevail and no doubts who was telling the story about whom. Illness narratives are about disruptions, the biggest of which is the disease and its effects. The monological point of telling these disruptions is to display the author as having overcome, perhaps performatively in the narrative itself, the destabilizing implications of the disruption. This overcoming is achieved by remaining not just the teller of the tale but its organizing consciousness.
Another example of how the author-as-patient’s disruption is not author-as-teller’s destabilization is found at the beginning of the first long essay in the posthumous collection by Anatole Broyard, Intoxicated by My Illness, a title worth quoting for the subject position it claims for the author. Broyard begins by describing himself reading a novel the tone of which he might otherwise have found “too heroic; larger or finer than life, and therefore unreal” (1992: 11). But in his present circumstances he reads “with an almost indescribable pleasure.” He then tell us the circumstance of his reading: “propped up in bed with an intravenous feeding tube in my arm and a catheter in my urethral canal because a cystoscopy had left me unable to pee” (1992: 11), and these circumstances get worse with a “thug” roommate who sprays “a cloying deodorizer” around the room and plays his television and radio simultaneously. Broyard’s punchline is that the novel “offered me an alternative.” The description ends with Broyard taking a walk, “dragging the metal rack with the IV tube and the catheter bag” but realizing, “How extraordinary the real world was!” (1992: 12).
Broyard exemplifies what I am calling monological autobiographical work. He is disrupted by the exigencies of disease, treatment, and roommate, but none of these are able to destabilize him as narrator. His description of his reaction to the novel he reads is a scarcely veiled instruction (forestalling one line of criticism) as to how his own book is to be read, perhaps by a reader similarly propped in a hospital bed. This regress of readership represents a variant of what I have called above the recursive and self-reflexive process of autobiographical work. Wearing my hat as an activist in the cancer survivor movement, I applaud it as very effective process which does offer an alternative, but that again is to seek to make Broyard’s claim creditable.
Broyard’s narrative might have been destabilized if the thug roommate had suddenly said something that challenged Broyard’s sense of how he was living with his illness and if this other voice was not then assimilated to Broyard’s but allowed its own on-going authority. The remainder of this paper offers examples of narratives that either approach or invite this dialogical condition of polyphony. I seek not to prove that ill and disabled people in general think about themselves a certain way, but rather that such thinking exists as a possibility. The demonstration of this possibility will allow me to be increasingly specific about the hedged term I have used above, “autobiographical work.”
Destabilized Physician Narratives
Dostoevsky is the other whom Bakhtin most needed to be himself.
Clark and Holquist 1984: 242
Physicians are beginning to write books that read like illness narratives, specifically in the author’s vulnerability to destabilization. Physician narratives, like illness narratives, have always involved moments of disruption; these have provided the story’s tension. In a few instances these disruptions destabilize the narrative; William Carlos Williams’ “doctor stories” written between the 1930s and the early 60s provide various examples (W.C. Williams 1984). Thus the dialogical quality I claim to observe is not distinctly new, but perhaps is more self-conscious and explicit (which some might call less subtle).
Few critics would describe Abraham Verghese’s The Tennis Partner: A Doctor’s Story of Friendship and Loss (1998) as an autobiography, but it clearly does autobiographical work. Verghese begins by continuing the story of his life and medical career where it left off at the end of his earlier book, My Own Country (1994). There Verghese describes his work treating primarily AIDS patients in a rural town in Tennessee at the beginning of the HIV/AIDS epidemic. That story sometimes flashes back to his medical training in Africa where he was born. The book ends with an all-night drive: burned out by his practice, his marriage in bad shape, Verghese is moving his family to Iowa where he plans a sabbatical.
The Tennis Partner begins at the end of that sabbatical, though one of the main events in Verghese’s life, writing My Own Country, is not mentioned. His marriage is now dissolving; he and his wife are taking their sons to El Paso where Verghese has a new position. They plan to settle her and the boys in what will be their home and he will then move to a different residence. The complications of this separation are a major part of the story. Most of the book, however, is about David, a young medical student and then resident whom Verghese befriends through their mutual love of tennis. David may be Verghese’s student in the hospital but he is far the better player. A former touring pro, he is an Australian who first came to the United States on a tennis scholarship. He is also a recovering drug addict.
The breakdown of David’s recovery and his eventual death are less disruptive to Verghese than they are destabilizing. Verghese may be drawn to David as a friend because his own sense of identity is already so destabilized: “Alone behind our bedroom windows,” he writes in a sentence representative of his sensibility (1998: 15), “alone in our cars, towns give us the necessary illusion that we belong.” Verghese’s persona seems to echo Stuart Hall’s statement that “The classic postmodern experience is the disasporic experience” (Morley and Chen 1996: 14). Born to South Asian parents in Africa, he went to India only as a young adult—a diasporic (non)return—to qualify for a profession he planned to practice in the United States. “This is the great promise of moving,” he writes: “that if you fold your life into a U-Haul truck and put it on the road, you will be given a clean plate with which to approach the buffet” (1998: 16). In his new professorship in El Paso Verghese is well seated at the buffet, but he can never eat without looking over his shoulder.
Verghese can tell David’s story with such non-judgmental empathy because David embodies both what Verghese would like (David’s grace as a tennis player) and what he fears (David’s insecurities and the compensations these drive him to). Their synchrony on the court, about which Verghese is lyrical, is inverted in their personal lives: when Verghese is most disoriented by his marital separation, David’s recovery seems most secure. As Verghese establishes a life after marriage, David lapses into drug use.
Verghese’s identification with David makes The Tennis Partner a kind of illness narrative: “Like so many of us, perhaps he was drawn to doctoring because he subconsciously thought that if he attended to the pain of others, it would take care of his own” (1998: 340). Pain is a central quality of the diasporic experience. The tension of the diasporic narrative is whether such a permanently destabilized consciousness can learn to live with its pain, or if the pain will destroy the bearer of such a consciousness as it destroys David. This self-acknowledgement of pain and the diasporic consciousness that pain derives from may also be what differentiates destabilization in both Verghese and Rafael Campo, discussed below, from William Carlos Williams who seems firmly and self-consciously rooted in his sense of place and belonging. I do not read Williams practicing medicine as attempted self-cure, as Verghese suggests he and David do.
David’s pain is eased at least temporarily by support groups. “Recovery forced him to repopulate his world again,” Verghese concludes (1998: 340). Verghese then presents an analogy to how HIV patients engage in autobiographical work and the claim that work generates:
I have seen the same phenomenon in my HIV clinic: A newly diagnosed man feels his world had ended. Reluctantly, he joins a support group, all of whose members have the same diagnosis. It is at first reassuring, then uplifting, and enables him to shed his secrets, to be honest and open with himself and his family. And two years later, despite falling CD4 counts and the virus gaining ground, he tells me with some amazement that he has never felt more whole, more alive, never felt happier. As if it were his pre-HIV world that had been the fatal illness, now cured. (1998: 340-41)
The HIV patients Verghese describe sound like Gail, quoted above claiming the “special knowledge” that illness gave her. She too feels “more whole, more alive” than those whom she calls the “normals and whitecoats.” One effect of Verghese’s writing is to give ill people’s claims creditability, since their claims reflect his own as he writes of his pain.
The book’s final scene recalls the end of Verghese’s first book: another night voyage, this time a plane trip with Verghese’s sons sleeping propped against him. The image is peaceful yet without illusions as to its fragility. When Verghese says that David kept himself alive so long as he told his secrets in support groups, he also states a purpose of his own autobiographical work: to telling his secrets even as he uses his writing “to spin a new persona, to pitch my myth” (1998: 15). Writing seems to be Verghese’s way out of the “loneliness” that both his diasporic experience and the profession of medicine foster (1998: 341).
Returning to the epigram of this section, is David the other whom Verghese most needs to be himself? I read the book as a meditation on that question which can never be answered but which continues to call for stories exemplifying its dilemma. Verghese’s achievement is to present David as his alter ego while never minimizing David’s otherness—his alterity. The Tennis Partner is about the limits of dialogue: Verghese never lets the reader forget all that remains unknowable about David. The telos of such dialogue is not some Hegelian synthesis; difference remains irremediable. “For Bakhtin,” write Clark and Holquist (1984: 136), “all that is living is alive precisely because of a noncorrespondence with others. Cacophonous difference is what is valued most, not the endless silence of a homogenizing harmony.” Thus alterity “is a condition friendly to man, rather than alienation” (Clark and Holquist 1984: 70). David’s final addiction and death culminate his alienation, yet David’s presence in the world is an alterity that, as Verghese brings us to realize, the world could not go on without.
* * *
Ivan’s [Karamozov, Dostoevsky’s character] consciousness teems with the consciousness of others.
Clark and Holquist 1984: 241
Rafael Campo’s The Poetry of Healing: A Doctor’s Education in Empathy, Identity, and Desire (1997) also does autobiographical work without being strictly an autobiography. Campo’s first sentence situates his narrative in a terrain of disruption: “His erection startled me” (1997: 13). Thinking back to this sentence while I read the rest of the book I realized the multiple layers of who “his” is and who “me” is. The erection is that of Campo’s patient, but as different patients stand up to Campo in different ways their effect on him slips over from disruption to destabilization. What is destabilized is the “me” to whom that opening sentence refers. The first referent of Campo-as-physician gives way to Campo’s other laminated identities as Hispanic, gay, and poet.
Campo writes more explicitly than Verghese of being simultaneously medical witness to sickness and sick himself: “What could be more natural than that I was there, a witness to another man’s ailing body. For a fleeting moment, I too wished to be naked, to be as available to him in his suffering as he had made himself to me” (1997: 13). The syntax seems open to the completing phrase, “to me in my suffering,” which would certainly capture the spirit of Campo’s writing. His sufferings include coming out sexually, becoming who he is ethnically (a second-generation Diaspora identity), and being a poet in a profession that often devalues the poetic.
But most of all Campo’s suffering involves relating to others with whom he fears to be identified: “That I might have been them” (1997: 55) is a frequent refrain, expressed primarily as a fear. His autobiographical work is an effort to overcome this fear and the complementary instinct to hold at a distance “people who live what seem unimaginable lives” (Campo 1997: 162). Campo’s writing engages such people in dialogue, not to assimilate their voices but to give their voice equal weight to his. The question he perpetually poses to himself and his readers is whether he has learned what these people were trying to teach him about himself. The danger for anyone who asks this honorable and necessary question is that of assimilating those others to him- or herself rather than sustaining their alterity in dialogue with the self.
Campo describes how, as he began medical practice, he distanced himself from his AIDS patients:
. . . I frequently reminded myself that I was not among them, that I was somehow different. Internally I accused them of a quasi-religious checklist of crimes of which I believed myself to be innocent. They were promiscuous, while I was monogamous. They were stupid, stupid enough to get infected, while I was clever. They were fornicators, while I loved another man. They were failures; I, a young graduate of Amherst College and Harvard Medical School, was at a pinnacle of achievement and still full of promise. They fretted about the fate of their souls, while I knew there was nothing after this life. They would allow themselves to be judged by God, while I judged them haughtily. (1997: 53)
The work in his autobiographical work is changing of these attitudes, in life as in text.
This work involves Campo allowing himself not merely to be disrupted by his patients but to be destabilized by them. The book is full of patients, from the transsexual Aurora (1997: 29 ff.), whom Campo learns to find beautiful, to Campo’s friend (and rival), the poet Gary Fisher. Campo’s indecision in response to Fisher’s request that he become his physician while Fisher dies of AIDS represents his continual conflict over how much he can see himself as one of them: in accepting a literary peer as a patient he would be accepting the world of AIDS as his world. His chapter title, “Fifteen Minutes after Gary Died,” refers to the moment when he finally decided to return his friend’s phone calls after not having been in contact for some time. That fifteen minutes is both a near-miss and an enormous gulf.
Perhaps more than any writer I know, Campo expresses himself through his body. If there is any single epiphany in his autobiographical work it occurs while he is changing his blood-splattered scrubs in the “one of the deserted hallways of the labyrinthine OR.” An apparently comatose AIDS patient on whom he was starting an IV suddenly thrashed out and the needle which had been in his arm stuck in Campo’s palm. “I finally knew how human I was,” he recalls (1997: 60); “I was made acutely aware in one terrible moment that all any of us had in the world is the same body.”
Campo’s body is also the source of his expressive abilities, specifically his need to write. His book is as much a meditation on the uncanny powers of autobiographical work—and a reflexive claim for these powers—as it is a telling of his life. The telling is less the summation of a life already lived than it is the creation of this life’s meaning. In one of his most complex chapters Campo describes a patient who intentionally became infected with HIV and the self-therapy he undertakes through writing: “if only he had known that he needed to write [his poetry] as we needed to hear it—we can still have the last word on AIDS” (1997: 197). This statement cannot “prove” any linkage of autobiographical work and illness, but it renders unquestionable the desire for that linkage and thus is a sort of proof insofar as a linkage defined as real will be real in at least its therapeutic consequences.
Perhaps this statement has emancipatory consequences as well: “As my patient in the ICU might have said,” Campo writes of this same man, “. . . no AIDS death can be a burden any individual person must bear. . . . To know [AIDS’] power to change us, and to know what we must finally do to end its tyranny, we need only look at one another, because the cure is etched indelibly in poetry upon our own enduring bodies” (1997: 197). Elsewhere (Frank 1995: 120 ff.) I have characterized such language as that of the manifesto; the relevant claim is: “Society is suppressing a truth about suffering, and that truth must be told” (1995: 121). The voice speaking in such language is prophetic. Yet the contemporary prophet hears divine voices coming from fellow humans, not from the clouds above.
The dialogical quality of Campo’s autobiographical work lies in his realization—in textual practice—that his patients are more privileged as tellers of his story than he is the medically privileged teller of theirs:
In this spirit of connectedness, I thought once very briefly about teaching a poetry-writing workshop on the ward . . . before I realized that these people, my patients, have been teaching me to write all along. Speaking all the more clearly and rarely through their oxygen masks, they demonstrate to me the parallel yet opposing processes of victimization and creativity: to tell me the story of their lives, it strikes me painfully as I jot down my medical histories, is for them to become authors of their very destinies. The circumstances under which they live, threatened by declining health . . . challenge them to remake their lives. . . . They invent the cure with each narrative. (Campo 1997: 164-65)
Campo thus links destabilization, narrative, and creation of self. This linkage is then exemplified—not proven but shown to be possible—in sustained descriptions of how patients disrupt the first and usually negative impression he has of them, and how this disruption then becomes a broader destabilization of the kind of self that could form that first impression. Of Aurora the transsexual patient whom he first regarded as a “freak” Campo writes:
Aurora died later that day, and when she died she left behind an element of herself in me. I find her voice in mine, like a lover’s fingers running through my hair; my voice sounds warmer, more comfortable to me now. I discover her hands on my own body when I examine a person with cancer, or AIDS, searching for the same familiar human landmarks that bespeak physical longing and intimacy. . . . Her friendship and her love of life return to the world in these words. . . . (1997, p. 32)
Campo’s claim that his sense of being is destabilized by Aurora—like Gail’s claim to special knowledge or Verghese’s claims for the wholeness that his HIV patients discover—can only be performative: its “validity” lies in the possibility of its statement. As what Goffman would call a “line”, is it effectively claimed? I am not sure how an observer can say when and how the claim is judged effective, and the situation is made all the more complicated because Campo is calling upon us as readers to quit playing observer and ask ourselves how we also share (and refuse to share) the humanity he evokes. The more I read his work, the more purely sociological considerations turn into ethical and emancipatory ones. The question is our ethical choice as Campo’s readers and Aurora’s fellow humans: whether we credit Campo’s assumption of Aurora’s line. And this question raises more general ones about the limits of life as dialogue: where lies my freedom to be a human among humans, and what choices need I make to live in this freedom?
“jesus” Destabilized and Destabilizing
[Ivan Karamozov’s] greatest and longest speech, containing the legend of the Grand Inquisitor, is a monologue about a dialogue that is shot through with other voices. None of these voices is louder than that of Christ. . . .
Clark and Holquist 1984: 241
An odd thing happens in the opening pages of Bill Williams’s Naked Before God (1998), a narrative of his life with cystic fibrosis. Williams is talking to some friends in present time and then the prose segues into what seem to be biblical times. The friends still have the same names but are now apostles, and Williams is now Nathaniel on his way to meet jesus. “jesus” is a typographic convention Williams employs to remind us that the character being written about is just that, a character being written about. But this character then claims control of the narrative. “You are about to be kidnapped by heaven,” jesus tells Nathaniel (and Williams tells his readers), “It’s going to scare the hell out of you. . . . You cannot stay broken forever, Nathaniel” (B. Williams 1998: 15).
To describe the narrative form of Naked Before God makes the book sound even more improbable than it is: an overlay of mutually destabilizing counter-narratives, each affecting the reading of the others. One narrative is told by Williams in present time describing life with a disease that was predicted to kill him before he was 13. As he writes his lung infections are becoming more frequent and more antibiotic resistant, his complications from diabetes more threatening, and his oxygen intake problems more severe. Williams died just before his book was published.
Another narrative layer is Williams’s experiential/didactic consideration of the problem of theodicy. A family in which all three children are born with cystic fibrosis and two die as children has to question the goodness of God: “We have always lived with the unspoken, terrible fear that God had singled us out: did it on purpose. My parents never voiced it, but this fear hung in the air, a question over the dining room table, the hospital bed, the two graves. I grew up with it, breathed it in. It formed my very bones” (1998: 10). The theodicy question is the brokenness out of which jesus calls Nathaniel.
The book’s third layer is imaginative narrative theology in the form of dialogues with jesus. “jesus” may be marked with a lower-case letter as Williams’s own creation yet the narrative accomplishment (a secular description appropriate to this journal) is to create and sustain the belief that jesus is an independent voice beyond Williams’s control: “jesus” destabilizes Jesus (biblical text is invoked frequently by and about jesus, its received meaning changing with these usages) and jesus/Jesus destabilizes Nathaniel/Williams for whom brokenness has become identity. I read the book in the increasing certainty that jesus was telling Nathaniel’s story, not that Williams was putting words in jesus’s mouth. In the appendix “Update” Williams describes writing as destabilization: “I’m still a Christian. Looking back, I realize, with some surprise, that it was a near thing. The old balance had become so intolerable that it couldn’t survive. The process of writing this book was like undergoing a theological meltdown” (1998: 308).
Williams had an interesting career: an amateur musician, he moved from synthesizers to computers, designed video games, apparently made a considerable amount of money (part of his myth is that this was largely unintentional), went to divinity school (fully intentional but never without reservations), worked as a hospital chaplain as long as his health sustained it, and by the time he writes his book that is work enough.
The dialogical quality of Williams’s autobiographical work renders jesus as real a person as Verghese’s David or Campo’s Aurora, which is to say “real” as someone other to the author, someone whose words and action come from outside the author and who shapes the author’s consciousness. As I put it above, the dialogical other becomes as much the teller of the author’s story as the author tells theirs.
But to suggest that jesus destabilizes Williams is a bit like saying that the ventriloquist is destabilized by his dummy: Williams writes “jesus” that way to remind us he is writing jesus, yet the force of his text depends upon the opposite illusion, that jesus is shaping Nathaniel. Nathaniel increasingly merges with Williams as biblical time merge into present time; he misses the Last Supper because a lung infection puts him in the hospital where he watches the crucifixion on television. A description of this scene makes it sound unreadably contrived, but as jesus promised, I was kidnapped. Like others who write of illness, Williams’s autobiographical work is to make creditable what initially sound like unsupportable claims: consider Broyard’s (1992) claim that one can be “intoxicated” by terminal cancer or Price’s (1994) claim that paralysis can create a “whole new life” for which he is grateful.
Why, however, should readers take seriously my claim for Naked Before God as a dialogical text? The process of jesus destabilizing Nathaniel is the autobiographical text itself, and exemplary quotations fail to stand in for the whole of what truly is a process. Ultimately the methodological problem seems this: whatever quotations I pull out of the text, what would make anyone believe they represent more than the eccentric delusions of a dying man read by an academic with an overactive spiritual imagination? If I had interviewed Williams face-to-face, what would privilege what he told me about his writing over what he has written? Or if some computer program pulled the quotations out of some larger database, would that program’s claim to find what is “representative” make the quotations any more creditable as autobiographical work?
Here we reach a central methodological issue of this paper and of the study of autobiographical work generally. The work is done as much by the reader/hearer as it is done by the author/speaker, and thus there are levels of dialogue. The author’s dialogical claim to a consciousness that has been destabilized by other consciousnesses is validated through the author’s success at destabilizing the reader’s consciousness. The reader credits the first claim (author destabilized by others) based on his or her experience of being destabilized by the author. Maybe there never was a patient named Aurora and maybe there never was a young physician named David. Ultimately these characters’ reality depends on the reader experiencing the destabilization that Campo and Verghese claim to have experienced. “jesus” is as real as his destabilization of Williams, which is as real as Williams’s destabilization of his readers. The methodological point is that the reader cannot learn about dialogue from these texts but must enter the dialogue of these texts; autobiographical work is not a spectator study but a relation. Once within this relation, identities are “credited” but can only be responded to.
To destabilize conventional relations of reading, and social scientific interpretation, further: the dialogical understanding of autobiographical work reverses common sense realism. Williams is as real as jesus makes him, and Verghese and Campo become real to the extent that David and Aurora, respectively, pervade their consciousnesses. If consciousness is truly formed in such dialogical processes (rather than entering this process already formed elsewhere), no sociological observer can analyze the crediting or discrediting of such autobiographical work from outside the dialogue. What the observer believes or becomes convinced it’s worthwhile to believe is part of the polyphony. To deny this participation seems to discredit either dialogism as a principle of consciousness or to deny the sociologist’s own humanity.
These methodological reflections are not a digression from the consideration of Williams’s text but rather, I believe, intrinsic to its message. Autobiographical work always contains loops within loops: Williams’s illness challenges his faith and his faith redefines his illness. I began reading his book expecting it to be about cystic fibrosis, found the book was more about jesus, and kept on reading (after a pause of a month or so in which I tried to find excuses to evade entering a dialogue about my own faith). Somewhere inside these loops of autobiographical work one person puts some version of his or her life into words and someone else decides what these words have to do with the life he or she is living. But the question remains how readers make the decision to enter the loops of someone’s autobiography; how do they decide that someone else’s autobiographical work is their autobiographical work?
Williams helps understand how autobiographical stories work as he responds to the theodicy problem of how a loving God could create a world where cystic fibrosis and Holocausts happen. Williams maintains that believers create this problem because of a linear notion of time. Linear time requires that God makes the world at a certain point in time, that point having a before and an after, and the creator is held variously powerless if evil is already there before or responsible if it comes in after. To get out of the theodicy problem one has to get out of preconceptions of linear time, and to do this Williams enlists physicist Stephen Hawking. His explanation of Hawking’s theory of time, which is clear, witty, and much longer than I can or need to paraphrase, depends on imagining time not as a line but as a sphere.
When time is imagined as a sphere, then “what’s before?” questions lose their force, just as we are unable to ask about our spherical earth, “What is north of the North Pole?” (Williams 1998: 171). Once we have a picture of a globe in our minds, north of the North Pole makes no sense as a question. Once we experience that question making no sense, once we can laugh it off and feel free of it, we are open to a new perception of time and as Williams extends his argument, open to a new concept of God and the world’s evil.
Hawking’s question, “What is north of the North Pole?” works equally well to evoke the effect of autobiographical work. The text offers its readers a picture of things that allows us to see everything else differently; we “get it” in the sense of seeing producing understanding. The picture itself does not convince us; rather it destabilizes our old way of seeing and thus allows new images into our awareness. Campo offers such a picture when he describes how, examining transsexual “freak” Aurora, he notices for the first time “the fullness of her breasts, the rich chocolate color of her nipples, the deep grooves between her delicate ribs.” She asks him (and he implicitly asks us), “Do you think I’m beautiful?” At the time Campo remains enlisted on the side of his fellow physicians who discredit the line Aurora struggles to take: “my job was not to feel but to palpate. Not to love but to diagnose” (Campo 1997: 30). Only after Aurora dies does he get the picture he has seen of her not as a diseased body but as a living, loving being. He gets the picture in the literal sense of connecting the image to what will become a possibility of thought. His autobiographical work is part of turning this possibility into a habitual way of thinking for himself and extending this possibility to others, who must then do their own autobiographical work.
Dialogical autobiography presents stories exemplary of the choices we all make constantly about what pictures we allow ourselves to get and whom we let destabilize our lives. But Williams never claims about jesus what Campo claims about Aurora: that she is in his voice and in his hands. jesus may be the other Williams needs to become who he is, but for jesus to continue to be whom Williams needs, he must continue to be other.
Virtual Dialogue in the MoZone
Finally I want to consider one non-literary text if only to observe how its possibility pushes the parameters of dialogical autobiographical work. Although scholars are paying increasing attention to Internet communications generally, little specific attention has been devoted to electronic illness narratives (exceptions include McLellan 1997a, 1997b and Sharf 1997). Though numbers are hard to come by, no one doubts that web sites constructed by ill persons are proliferating rapidly. Many of these sites will disappear almost as quickly. Given the respective natures of web sites and of deep illness, I hope the site I consider below will still be there when this paper is published but it may not be and it will certainly have changed: a major rationale for doing autobiographical work on a web site is its fluidity. The inherent instability of the form seems part of its attraction.
“MoZone: a Head & Neck Cancer Site” is created by Maureen Jobson, who has lived with head and neck cancers since August 1988. In a decade she has had eight tumors requiring surgery and biopsies. She does not expect her current remission to last and lives between follow-up examinations, knowing that one of these will bring news that cancer has recurred and one of these recurrences will be fatal. I choose to discuss her site for the indefensible reason that I first heard Jobson tell her illness story in person while she was developing the site, and she subsequently sent me an email that it was on-line: http://www.cadvision.com/jobsonm/stories/.
The MoZone consists of a home page and five sections: “reflections” (short prose stories about her illness experience), “links” (to other sites including medical information about head and neck cancers), “personal stories” (long and short versions of the time-line of Jobson’s illness and surgeries with some editorial comment but mostly precise medical facts; Jobson is a nurse by profession and continues that work as she is able), “credit due” (acknowledgments), and “email me”.
A personal web site, far more than an autobiographical book, is inherently self de-centering, if not necessarily self-destabilizing. Of the five links to which one can go from the MoZone’s home page, three involve other people; “links” moves the visitor/viewer/participant to other sites, “email me” is an invitation to direct response, and “credit due” is just that. Among the stories found in a fourth link (“reflections”) one is about another woman’s cancer, with the point seeming to be only to memorialize that woman. In the one section that is devoted to Jobson herself, her story is told in outline form, as if—on my reading/viewing—to invite comparison to others’ illness trajectories. Here as in the texts considered above, a kind of autobiographical work is clearly taking place, but the result is even less traditional autobiography. Jobson’s own cancer experience is the center of the site that is being perpetually decentered into others’ experiences.
Although the MoZone is a text insofar as it can be printed out and read, it is more readily experienced as a site, a kind of place: I emailed Jobson that I looked forward to “returning” there and that word choice still seems best. One does not read the MoZone, one goes there, as its name implies. And having gone there, one goes on to other sites. Jobson certainly created the MoZone, but it’s a shared space. Her story is open to direct response via email and indirect response by juxtaposing her illness trajectory to one’s own, but mostly her story seems a point of departure to others’ personal sites via hyper-text link, to medical information sites, and elsewhere depending on how the site develops. That development will be shaped by Jobson herself but equally—perhaps even more—by those who visit the site, use it, and contact her about their use. The MoZone is constructed on the principle that different users will use it in different ways and their uses will shape the site. It’s not difficult to imagine the site going on after Jobson’s death.
Of course books are used in multiple ways. Each of the three books discussed above could be read by very different readers with different purposes: Verghese meditates as much on marital break-up and on tennis as he does on medicine and on drug addiction; Campo’s book is as much about poetry as it is about being gay as it is about practicing medicine; Williams writes both illness narrative and theology, offering himself to the ill, bereaved, and theologically perplexed. But none of these books provides instant links to other books, nor does any provide ready means for talking with the author, as the MoZone does. I cannot think of these books as places I go, and I certainly cannot move readily from them to other places. In the MoZone I can never forget that this place is a node in a network, and somewhere else is only the click of a button away. The autobiographical work in such a place is necessarily different and the self imagined in such autobiographical work changes from the self imagined in print.
One way to describe this difference is that Jobson need not destabilize her own voice in order to be dialogical, since the dialogical possibilities are already inherent in her autobiographical work. She does not begin from the premise of a unitary consciousness that must be opened to dialogue through destabilization. Campo, Verghese, and Williams must each work against the grain of literary autobiography, which is toward monological consciousness controlling the perspective. The dialogical openings must be kept open, and readers can contest how open they are: some may read Williams’s jesus as the ventriloquist’s dummy saying lines Williams has put into its mouth; some might read David and Aurora as foils that Verghese and Campo have created to further their own impression management. But few could dispute that the MoZone is inherently a place to be moved through; again, a node in a network. Jobson’s autobiographical work is inherently dialogical, while the literary authors have to work constantly to sustain whatever dialogical quality they achieve.
Jobson does not spin her own myth, as the others necessarily do. She creates a web into which others can spin their stories in dialogue with her. The self that is the effect of such autobiographical work is always-already constituted as open to others; its condition is inherently dialogical. The other side of this dialogical openness is that Jobson does far less traditional autobiographical self-interrogation than the print authors do. She could do such work in her site, but the medium may not foster, even require it as print does.
Does the MoZone represent the future of autobiographical work as more people’s experiences of their own and others’ autobiographies will take web sites as their primary medium? Will web sites further legitimate separate systems of honor, credited by “niche” respondents whose terms of offering credit (visiting the site, leaving a message of support) involve little personal cost? Is the concept of personal “cost” that was based on face to face interaction and its risks of embarrassment still relevant in virtual communication? The real possibility is that the dialogical openness of autobiographical work in web sites will affect not only print autobiographies but cultural conceptions of the self’s expressive possibilities, claims, and relationships.
On Autobiographical Work
“You cannot stay broken forever, Nathaniel,” says jesus in Williams’s autobiographical work (1998: 15, also quoted above). I can easily imagine Campo, Verghese, and even Jobson responding to this call. At one end of the autobiographical spectrum are books (typically large and best-selling) by “personalities” (or their hired writers) proclaiming the wholeness of a life’s works and accomplishments. At the other end are diverse works that are parts of people’s struggles against a brokenness that is always imminent. The sometimes unbearable tension of such autobiographical work is whether it can stave off this brokenness.
Sociological analysis of such works breaks down because brokenness is a curious line for people to take: such an author’s claims are inherently undefended. Claims to certain kinds of selves may still be credited and discredited, but affording analytical centrality to the process of crediting and discrediting seems ethically limiting as human responses to autobiographical work. These responses take the other as object for our evaluation, not as dialogical partner to our being. The ethical claim of the autobiographical work considered above seems less about the self of the author (though that remains) and more about a quality of relationship claimed with the reader. This relationship is the hermeneutic of destabilization considered above: the reality of the characters’ destabilizing effect on the author depends on the text’s destabilizing effect on the reader. Thus students of autobiography miss the point if they seek to observe and report from outside the dialogical process. If autobiographical work is dialogical, that work can only be studied from within the dialogical process.
At the beginning of this paper I identified surprise as the occasion for the kind of autobiographical work that I would consider: the surprise of a self that has become what it never expected to be. Brokenness is a step more evaluative and existential than surprise; what, we may ask, was broken and how has autobiographical work repaired that brokenness? The response that this paper has prepared for is offered by Clark and Holquist in their definition of dialogue: “communication between simultaneous differences” (1984: 9, also quoted above).
To live in deep illness is to be constantly acutely aware of one’s differences, less from those who are differently ill and more from those who are not ill: those who take for granted bodies not limited by disability and who do not have a next check-up date on their calendars when they may be told that some disease within them is again active and can kill them. But deep illness itself is not necessarily brokenness. Brokenness means exclusion from relationships that have two aspects. One aspect is being in dialogue, attending to the other’s speech and having one’s own speech attended to; the other aspect is mutual respect for difference, expressed by neither assimilating the speech of the other. These aspects are complementary but also in tension: dialogue can tend to assimilate otherness, and otherness can pull apart dialogue. Illness is only contingently related to brokenness. Verghese’s and Campo’s stories both observe that in this dialogical sense the physically healthy can be more broken than the ill. Gail wants to teach the normals and the whitecoats that healthy people always risk confusing physical health with social and existential wholeness.
The premise of the dialogical perspective is that existential wholeness is inherently constituted in relationships with others. This perspective notches up what classical sociological theory—particularly Durkheim and Mead—taught as constitutive of sociology: the individual person is an effect of the social, not vice versa. Philosophers such as Bakhtin, Buber, and Levinas (see Gardiner 1996) bring to sociology a heightened sense of the ethical implications of the dialogical perspective. Theirs is a normative theory not a descriptive one, just as my interest in helping to credit ill people’s autobiographical work is a normative move.
Autobiographical work is about seeking wholeness. Dialogical autobiographical work recognizes that the relevant wholeness is never for oneself alone but always for oneself with another. Levinas (1989) would say “for” another, but what each is responsible for is the alterity, the irremediable difference of the other; thus “wholeness” is a dangerous word. The moment of opening the self to another looks and may even feel like alienation from others: Campo frantically squeezing blood out of his hand after the needle-stick, Verghese losing control as he delivers David’s eulogy, Williams’s theological meltdown. The consistent message is that there is no choice, no other way but this breakdown; as Williams writes, “the old balance had become so intolerable that it couldn’t survive” (1998: 308, also quoted above). That intolerability is the occasion for dialogical autobiographical work. But the work does not remedy the intolerability. Between wholeness and alterity there is no new balance. Wholeness comes to mean the on-going communication between simultaneous differences. The ethical challenge is to live in the space of that tension.
Autobiographical work can take the form of literary autobiography but nothing privileges the literary form, as the consideration of Internet autobiography suggests. As the media of autobiographical work proliferate and if this work becomes more dialogical, older debates about “authenticity” (Trilling 1971; Taylor 1991) may seem less relevant. In the MoZone, Maureen Jobson’s “authenticity” is so self-consciously permeable and even translucent as hardly to be an issue; she exists to be moved through. Thus there is little question of crediting or discrediting her line, because her “line” is now a node in a network. As Jobson chose her autobiographical medium what may have been intolerable was creating a self too closely tied to specific claims of authenticity. Print can seem to isolate as it fixes words and lives in time and space. The flux of the Internet is not only the changeability of a site’s content but also the permeability of virtual selves.
Questions of authenticity remain because people still claim lines for themselves, and others will credit or discredit these lines. But these issues may be losing their gravitational force. The dialogical questions include: what is my difference from and sameness with this other person? Whom can I suddenly recognize as beautiful and on what terms do I allow that beauty into my life? How do I allow the other’s voice to permeate my voice without subsuming what makes that voice other? What alterity—what “cacophonous difference”—does my life and social life generally depend on? These are the question that dialogical autobiographical work opens us to.
 Quoted in Gardiner 1992: 25.
 A more sympathetic version of the same criticism is expressed by Robillard 1997.
 For an earlier statement of these reservations, see Frank 1995: 31-32.
 Goffman’s argument still holds, however, as many of “separate systems of honor” remain contested politically—as in my home city’s annual dissention over whether the Mayor will proclaim “Gay Pride” week. Bluebond-Langer’s (1997) work on parents of children with cystic fibrosis offers numerous examples of attempts to assert “normal” identities as opposed to claiming and taking pride in an identity outside the norm.
 This process is nothing less than the Parsonian nightmare of deviant persons “colluding” to achieve a sense of self-legitimation that would impede their eventual reintegration into society (Parsons 1951).
 Cf. Reynolds Price’s title, A Whole New Life (1994), the claim of which seems obvious, and William Styron’s Darkness Visible (1990), implying that the author will make his own darkness visible both to himself and to the reader; my own title, At the Will of the Body (1991), offers the contradiction that since there is a text inside the cover, the disruption implied by the title must be limited in its consequences.
 Insofar as a methodological justification is required, I could draw it from Simmel (1950: 88-89): “But in the present attempt at eliciting from social life the possibility of a new scientific abstraction . . . . I would say that the only importance of the examples is that they are possible, and less that they are real.” The examples in this paper are both possible and real, though how real they are for how many people how much of the time is an open question.
 With hopes of returning to them in some future essay, I suggest these in particular: “Old Doc Rivers,” “The Girl with a Pimply Face,” and “The Use of Force.”
 Here as elsewhere I evade the genre question of what a “strict” autobiography would be. According to an operational definition of the term, I doubt whether Verghese’s books or Campo’s would find their way into the listings of American autobiography from which Bjorklund (1998) draws her sample. Her working definition of autobiography, quoting literary critic Paul Delany, includes “forming a unified narrative” (1998: 168) and that unity is what the present books refuse.
 On Gary Fisher see Frank 1998c.
 See my remarks on Campo and writing in Frank 1997c: 106-7.
 Though boundary assertion can take place in web sites; see McLellan 1997b: 124 for an example.
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