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Qualitative Sociology, Vol. 23, No. 1, 2000

Illness and Autobiographical Work: Dialogue

as Narrative Destabilization
Arthur W. Frank

Illness is an occasion for autobiography, and memoirs of illness present openings

to ethical ways of living. This work 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 ones own. Physician memoirs, a spiritual autobiography, and a web
site are presented as examples of dialogical autobiographical work occasioned by
illness.
KEY WORDS: autobiography; identity; illness; self.

All else is means; dialogue is the end. A single voice ends nothing and resolves nothing.
Two voices is the minimum for life.Mikhail Bakhtin1

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, Youre always surprised. Ive
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, p. 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,

Address correspondence to Arthur W. Frank, Department of Sociology, University of Calgary, Calgary,

Alberta, Canada T2N 1N4.

135

C 2000 Human Sciences Press, Inc.
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136 Frank

1998b) beginning with my own illness story (Frank 1991), a starting point that
prejudices my sociological explorations no more than it informs such considera-
tions as only personal experience can (Ellis and 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 be-
tween simultaneous differences (Clark and Holquist 1984, p. 9). What this cryptic
statement may mean I hope to demonstrate.
The kind of autobiographical work that illness occasions, as well as the sense
in which the present work 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 imputationthis selfis a product of a scene that
comes off, and not a cause of it (1959, p. 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 (ibid., pp. 252253).
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 Goffmansto the apparent interest of many
ill people and medical practitioners but to the despair of some sociologists (e.g.,
Atkinson 1997)2 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 peoples 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, p. 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 peoples 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
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Illness and Autobiographical Work 137

reservations about another of Goffmans 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:3 In America at present, however, separate systems of honor seem
to be on the decline. The stigmatized individual tends to hold the same beliefs about
identity that we do (1963, p. 7). 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 asser-
tion 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 Goffmans subtitle) now openly
claim that identity and even claim it as a privileged state of being. Far from pass-
ing, the nonvisibly stigmatized proclaim their disease or disease-related sympathy
by wearing variously color-coded ribbons (with distinct colors for AIDS, breast
cancer, and lost children), 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, pp. 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 sys-
tems of honor through public display of numbers. Support groups (Becker 1997,
pp. 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 can-
cer as my paradigm and not to ethnic and sexual identities that often are claimed
as both honorable and desired.4
Autobiographical work, then, is a performance of which the ill person be-
comes 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, differ-
ent 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, p. 129; see
also Frank 1995, pp. 141142). 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 question whether Gails
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
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devalued identities. The answer that interests me (among many that could be
offered) falls under the general rubric of agency in the sense upon which Goffman
implicitly depends: 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 Gails
claim is credited (and my own approving quotation of her words, following Garros
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 Gails 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.5 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 Goffmans (1974) sense of whatever
anchors a performance in a recognizable framework and thus makes it intelli-
gible 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 ac-
tivist 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 Gandhis independence struggles against
the British in Indiaand how far back need one go? Claims thus asserted re-
main 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 storytelling 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.
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Illness and Autobiographical Work 139

In this article 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 Bakhtins commen-
tators specifies the aspect of dialogism that is most relevant to my argument below:
Bakhtin claims . . . that Dostoevskys novels are distinctly polyphonic, that is, they
grant the voices of the main characters as much authority as the narrators voice,
which indeed engages in active dialogue with the characters voices (Dentith
1995, p. 41; see also Gardiner 1992, p. 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 Bakhtins radical implication for polyphony can be
reduced to no more than multiple points of view (1990, p. 108). Seeking to heed
this warning, I present the difference between monological and dialogical autobi-
ographical 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, p. 59; see also Frank 1995,
pp. 121 ff.). Lorde as narrator presents the nurses voice as being highly disruptive
to her: I was too outraged to speak then (1980, p. 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 as to 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 dis-
play 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-patients disruption is not author-
as-tellers 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.6 Broyard begins by de-
scribing himself reading a novel the tone of which he might otherwise have found
too heroic; larger or finer than life, and therefore unreal (1992, p. 11). But in
his present circumstances he reads with an almost indescribable pleasure. He
then tells us the circumstance of his reading: . . . propped up in bed with an in-
travenous feeding tube in my arm and a catheter in my urethral canal because a
cystoscopy had left me unable to pee (ibid.); and these circumstances get worse
with a thug roommate who sprays a cloying deodorizer around the room
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140 Frank

and plays his television and radio simultaneously. Broyards punch line 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! (p. 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 a very
effective process which does offer an alternative, but that again is to seek to make
Broyards claim creditable.
Broyards narrative might have been destabilized if the thug roommate had
suddenly said something that challenged Broyards sense of how he was living
with his illness and if this other voice was not then assimilated to Broyards but
allowed its own ongoing authority. The remainder of this article 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.7 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,
p. 242).

Physicians are beginning to write books that read like illness narratives, specif-
ically in the authors vulnerability to destabilization. Physician narratives, like ill-
ness narratives, have always involved moments of disruption; these have provided
the storys tension. In a few instances these disruptions destabilize the narrative;
William Carlos Williams doctor stories, written between the 1930s and the early
1960s, provide various examples (Williams 1984).8 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 Vergheses The Tennis Partner: A Doc-
tors Story of Friendship and Loss (1998) as an autobiography, but it clearly per-
forms 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 primarily treating AIDS patients in a
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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 Vergheses 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 Vergheses student in the hospital but he is
the far 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 Davids 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,
p. 15), alone in our cars, towns give us the necessary illusion that we belong.
Vergheses persona seems to echo Stuart Halls statement, The classic postmodern
experience is the disasporic experience (Morley and Chen 1996, p. 14). Born to
South Asian parents in Africa, he went to India only as a young adulta diasporic
(non)returnto 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, p. 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 Davids story with such nonjudgmental empathy because
David embodies both what Verghese would like (Davids grace as a tennis player)
and what he fears (Davids 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,
Davids recovery seems most secure. As Verghese establishes a life after marriage,
David lapses into drug use.
Vergheses 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, p. 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-acknowledgment of pain and
the diasporic consciousness that pain derives from may also be what differentiates
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142 Frank

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.
Davids pain is eased at least temporarily by support groups. Recovery forced
him to repopulate his world again, Verghese concludes (1998, p. 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 (ibid., pp. 340341).

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 Vergheses
writing is to give ill peoples claims creditability, since their claims reflect his own
as he writes of his pain.
The books final scene recalls the end of Vergheses first book: another night
voyage, this time a plane trip with Vergheses 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: telling his secrets even
as he uses his writing to spin a new persona, to pitch my myth (ibid., p. 15).
Writing seems to be Vergheses way out of the loneliness that both his diasporic
experience and the profession of medicine foster (p. 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. Vergheses achievement is to present David as his alter ego while never
minimizing Davids othernesshis 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; differ-
ence remains irremediable. For Bakhtin, write Clark and Holquist (1984, p. 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 ho-
mogenizing harmony. Thus alterity is a condition friendly to man, rather than
alienation (ibid., p. 70). Davids final addiction and death culminate his alien-
ation, yet Davids presence in the world is an alterity that, as Verghese brings us
to realize, the world could not go on without.

* * *
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Ivans [Karamozov, Dostoevskys character] consciousness teems with the consciousness

of others (Clark and Holquist 1984, p. 241).

Rafael Campos The Poetry of Healing: A Doctors Education in Empathy,

Identity, and Desire (1997) also does autobiographical work without being strictly
an autobiography.9 Campos first sentence situates his narrative in a terrain of
disruption: His erection startled me (1997, p. 13). Thinking back to this sentence
while I read the rest of the book I realized the multiple layers of who his refers
to and who me is. The erection is that of Campos 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 Campos
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 mans 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 (ibid., p. 13). The syntax seems open to the completing phrase to me in
my suffering, which would certainly capture the spirit of Campos 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, Campos suffering involves relating to others with whom he
fears to be identified: That I might have been them (ibid., p. 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 (p. 162). Campos 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 (ibid., p. 53).

The work in his autobiographical work is changing these attitudes, in life as in text.
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144 Frank

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 (ibid., p. 29 ff.), whom Campo learns to find beautiful, to
Campos friend (and rival), the poet Gary Fisher.10 Campos indecision in response
to Fishers request that he become his physician while Fisher dies of AIDS repre-
sents 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 friends 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 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
Campos palm. I finally knew how human I was, he recalls (ibid., p. 60); I was
made acutely aware in one terrible moment that all any of us had in the world is
the same body.
Campos body is also the source of his expressive abilities, specifically his
need to write.11 His book is as much a meditation on the uncanny powers of
autobiographical workand a reflexive claim for these powersas 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 lifes 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 itwe can still have the last word on AIDS
(p. 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 pa-
tient 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 (p. 197). Elsewhere (Frank 1995, pp. 120 ff.) I have char-
acterized such language as that of the manifesto; the relevant claim is: Society
is suppressing a truth about suffering, and that truth must be told (ibid., p. 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 Campos autobiographical work lies in his
realizationin textual practicethat his patients are more privileged as tellers
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of his story than is he 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 (pp. 164165).

Campo thus links destabilization, narrative, and creation of self. This linkage is
then exemplifiednot proven but shown to be possiblein 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 lovers 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 . . . (p. 32).

Campos claim that his sense of being is destabilized by Auroralike Gails

claim to special knowledge or Vergheses claims for the wholeness that his HIV
patients discovercan 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 Campos readers and Auroras fellow humans: whether we
credit Campos assumption of Auroras 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 DESTABLILIZED AND DESTABILIZING

[Ivan Karamozovs] greatest and longest speech, containing the legend of the Grand In-
quisitor, 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, p. 241).

An odd thing happens in the opening pages of Bill Williams 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.
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146 Frank

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), Its going to scare the hell out of you. . . . You cannot stay broken
forever, Nathaniel (Williams 1998, p. 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 counternar-
ratives, 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 be-
fore 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 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, p. 10). The theodicy question is
the brokenness out of which jesus calls Nathaniel.
The books third layer is imaginative narrative theology in the form of dia-
logues with jesus. jesus may be marked with a lower-case letter as Williams 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 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 Nathaniels story, not that
Williams was putting words in jesus mouth. In the appendix Update Williams
describes writing as destabilization: Im still a Christian. Looking back, I realize,
with some surprise, that it was a near thing. The old balance had become so intoler-
able that it couldnt survive. The process of writing this book was like undergoing
a theological meltdown (ibid., p. 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), and worked as a
hospital chaplain as long as his health sustained it, and by the time he writes his
book, that is work enough.
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Illness and Autobiographical Work 147

The dialogical quality of Williams autobiographical work renders jesus as

real a person as Vergheses David or Campos Aurora, which is to say real as
someone other to the author, someone whose words and actions come from outside
the author and who shapes the authors consciousness. As I have suggested above,
the dialogical other becomes as much the teller of the authors story as the author
tells the others.
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 oppo-
site illusion, that jesus is shaping Nathaniel. Nathaniel increasingly merges with
Williams as biblical time merges into present time; he misses the Last Supper be-
cause 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 au-
tobiographical work is to make creditable what initially sound like unsupportable
claims: consider Broyards (1992) claim that one can be intoxicated by terminal
cancer, or Prices (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 autobio-
graphical 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 programs claim to find what is representative make the quotations any more
creditable as autobiographical work?
Here we reach a central methodological issue of this article 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 au-
thors dialogical claim to a consciousness that has been destabilized by other con-
sciousnesses is validated through the authors success at destabilizing the readers
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 experi-
encing 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
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;
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148 Frank

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 inter-
pretation 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 ob-
server can analyze the crediting or discrediting of such autobiographical work
from outside the dialogue. What the observer believes, or becomes convinced its
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 sociol-
ogists own humanity.
These methodological reflections are not a digression from the consideration
of Williams text but rather, I believe, intrinsic to its message. Autobiographical
work always contains loops within loops: Williams 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 someones
autobiography; how do they decide that someone elses autobiographical work is
their autobiographical work?
Williams helps us understand how autobiographical stories work as he re-
sponds 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
make 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 re-
sponsible if it comes 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 Hawkings 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 Whats before? questions lose
their force, just as we are unable to ask about our spherical earth, What is north of
the North Pole? (1998, p. 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 worlds evil.
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Illness and Autobiographical Work 149

Hawkings 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 Im 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 (1997,
p. 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 nonliterary 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 (excep-
tions 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 prolif-
erating 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 work 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
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150 Frank

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 develop-
ing the site, and she subsequently notified me via e-mail of its on-line address:
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 med-
ical information about head and neck cancers); personal stories (long and short
versions of the time-line of Jobsons illness, and surgeries with some editorial
comment but mostly precise medical factsJobson is a nurse by profession and
continues that work as she is able); credit due (acknowledgments); and e-mail
me.
A personal web site, far more than an autobiographical book, is inherently
self-decentering, if not necessarily self-destabilizing. Of the five links to which
one can go from the MoZones home page, three involve other people: links
moves the visitor/viewer/participant to other sites, e-mail me is an invita-
tion to direct response, and credit due is just that. Among the stories found
in a fourth link (reflections) one is about another womans 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 ifon my
reading/viewingto 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. Jobsons 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 e-mailed 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 its a
shared space. Her story is open to direct response via e-mail and indirect response
by juxtaposing her illness trajectory to ones own, but mostly her story seems a
point of departure to others personal sites, via hypertext link, to medical informa-
tion sites and elsewhere depending on how the site develops. That development
will be shaped by Jobson herself but equallyperhaps even moreby 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. Its not difficult to imagine the site going on after Jobsons
death.
Of course, books are used in multiple ways. Each of the three books dis-
cussed earlier could be read by very different readers with different purposes:
Verghese meditates as much on marital breakup and on tennis as he does on
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Illness and Autobiographical Work 151

medicine and drug addiction; Campos book is as much about poetry as it is

about being gay as it is about practicing medicine; Williams writes both ill-
ness narrative and theology, offering himself to the ill, bereaved, and theologi-
cally 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 autobiogra-
phy, 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 jesus as the ventriloquists 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 throughagain, a
node in a network. Jobsons 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.12 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 on her site, but the medium may
not foster or even require it, as print does.
Does the MoZone represent the future of autobiographical work as more peo-
ples experiences of their own and others autobiographies 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 auto-
biographies but cultural conceptions of the selfs expressive possibilities, claims,
and relationships.
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152 Frank

ON AUTOBIOGRAPHICAL WORK

You cannot stay broken forever, Nathaniel, says jesus in Williams autobi-
ographical work (1998, p. 15; also quoted above). I can easily imagine Verghese,
Campo, 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 lifes works and accomplishments.
At the other end are diverse works that are parts of peoples 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 authors 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 here seems less about the self of the
author (although that remains) and more about a quality of relationship claimed
with the reader. This relationship is the hermeneutics of destabilization considered
above: the reality of the characters destabilizing effect on the author depends on
the texts 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 be studied only from within the
dialogical process.
At the beginning of this article 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 autobiograph-
ical work repaired that brokenness? The response that this work has anticipated
is offered by Clark and Holquist in their definition of dialogue: communication
between simultaneous differences (1984, p. 9; also quoted above).
To live in deep illness is to be constantly acutely aware of ones 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 others speech and having ones
own speech attended to; the other aspect is mutual respect for difference, expressed
by neither one assimilating the speech of the other. These aspects are complemen-
tary but also in tension: dialogue can tend to assimilate otherness, and otherness can
pull apart dialogue. Illness is only contingently related to brokenness. Vergheses
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Illness and Autobiographical Work 153

and Campos 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 white-
coats that healthy people always risk confusing physical health with social and
existential wholeness.
The premise of the dialogical perspective is that existential wholeness is in-
herently constituted in relationships with others. This perspective augments what
classical sociological theoryparticularly Durkheim and Meadtaught as con-
stitutive 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 so-
ciology 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 peoples autobiographical work is a normative move.
Autobiographical work is about seeking wholeness. Dialogical autobiograph-
ical 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: Verghese losing control as he
delivers Davids eulogy, Campo frantically squeezing blood out of his hand after
the needle-stick, Williams theological meltdown. The consistent message is that
there is no choice, no other way but this breakdown; as Williams writes, [T]he
old balance had become so intolerable that it couldnt survive (1998, p. 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 ongoing commu-
nication 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 noth-
ing privileges the literary form, as the consideration of Internet autobiography
suggests. As the media of autobiographical work proliferate, and if this work be-
comes more dialogical, older debates about authenticity (Trilling 1971; Taylor
1991) may seem less relevant. In the MoZone, Maureen Jobsons authenticity
is so self-consciously permeable and even translucent as to hardly be an issue; she
exists to be moved through. Thus there is little question of crediting or discred-
iting 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 sites content but also the permeability of virtual selves.
Questions of authenticity remain because people still claim lines for them-
selves, 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
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154 Frank

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 others voice to permeate my voice without subsuming what makes that voice
other? What alteritywhat cacophonous differencedoes my life and social
life generally depend on? These are the questions that dialogical autobiographical
work opens us to.

ENDNOTES

1. Quoted in Gardiner 1992, p. 25.

2. A more sympathetic version of the same criticism is expressed by Robillard (1997).
3. For an earlier statement of these reservations, see Frank 1995, pp. 3132.
4. Goffmans argument still holds, however, as many separate systems of honor remain contested
politicallyas in my home citys annual dissension over whether the mayor will proclaim Gay
Pride Week. Bluebond-Langers (1996) 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.
5. 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).
6. Cf. Reynolds Prices title, A Whole New Life (1994), the claim of which seems obvious, and William
Styrons 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.
7. Insofar as a methodological justification is required, I could draw it from Simmel (1950, pp. 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, although how real
they are for how many people how much of the time is an open question.
8. 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.
9. Here as elsewhere I evade the genre question of what a strict autobiography would be. Ac-
cording to an operational definition of the term, I doubt whether Vergheses or Campos books
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, p. 168), and that unity is what the present books
refuse.
10. On Gary Fisher, see Frank 1998c.
11. See my remarks on Campo and writing in Frank 1997c, pp. 106107.
12. Although boundary assertion can take place in web sites; see McLellan 1997a, p. 124 for an
example.

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Bjorklund, D. (1998). Interpreting the self: Two hundred years of American autobiography. Chicago:
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