Between the Ride and the Story:

Illness and Remoralization

 

Arthur W. Frank

Department of Sociology

University of Calgary

 

 

 

Max Weber’s ([1918] 1958) problem still looms: Can we find a vocation that affords us honor in disenchanted times?  The ghost of Weber reminds us that the work of showing how our times are disenchanted is central to the social scientific vocation, but then I part company with him.  Weber saw disenchantment deriving from the absence of legitimate charismatic leadership; for him the fate of the times was to be “resolute” in facing that absence.  My experience is that charisma has not left the scene unless one looks only for the kind of political and religious movements that were Weber’s central interest.  I remember seeing charisma in a New Zealand hospice as I watched a patient’s reaction when a young physician knelt in front of her, so that the patient did not have to look up as they spoke.  I see charisma in people with cancer who lead support groups until months and even weeks before their deaths.  Unlike Weber’s leaders, these people would not understand themselves as charismatic.  The charisma of their acts lies in their capacity to enlarge the sense of human possibility among those who feel affected by them.  Such acts elevate the mundane and reenchant local worlds; the reenchantment is no less significant for the limitation of scope.  In the presence of such acts I ask the same question that observers of Weberian charismatic leaders ask: Where did that person’s power come from?

But then Weber’s ghost returns.  Even to those like me who see the world filled with—to coin a Weberian oxymoron—mundane charisma, the fate of our times is the increasing sphere of what is disenchanted.  The disenchantment that concerns me occurs in and around illness.  What I have learned from illness over the last fifteen years is that suffering is caused not only by physical pain, financial loss, strained relationships, and sheer disruption, not to mention the ultimate fear of death, as real as these are.  People certainly suffer for these reasons, but they also suffer because being ill is a profoundly disenchanted, and disenchanting, business.  This idea has not escaped others’ notice.  In a book that inspired my work, Arthur Kleinman (1988: 244, passim) called for the “remoralization” of medicine, and my own work has been about the remoralization that ill people must do to survive demoralized medicine. 

One of the most recent and best testaments to the need for medicine’s remoralization is Margaret Edson’s Pulitzer Prize-winning play, Wit (1999).  Vivian Bearing, a distinguished professor of English, is dying of ovarian cancer.  Although temporal intervals are not specified, the play takes place over about a year from her diagnosis to her death.  Vivian often speaks directly to the audience while individual physicians or the medical staff speak their dialogue in the background.  Thus after her oncologist, Dr. Kelekian, has broken the news by simply entering the room and telling her, “You have cancer” (in the production I saw, he looks down at the chart as he says this), he goes into a monotone description of medical details and the proposed treatment, and she carries on her own monologue.  Vivian has some success establishing a relationship of mutual recognition with Kelekian—they find common ground in complaints about their students—but her demoralization becomes intense as she goes for various tests.  The first technician, after asking her name, asks (without inflecting it as a question) “Doctor.”  She answers, “Yes, I have a Ph.D.”  Your doctor,” he replies (Edson 1999: 16).  In her next encounter she tries joking, but the joke only produces confusion.  After the test the technician is annoyed because another technician has taken her wheelchair: “Well, how are you going to get out of here?” he asks.  “Perhaps you would like me to stay,” she answers (1999: 17).  Later in her treatment, when she goes for a test she makes no attempt to establish any relationship to the technician; when he asks her name she speaks by rote, “B-E-A-R-I-N-G.  Kelekian” (1999: 42)  In the production I saw, that line is delivered with a heavy sense of defeat; all the wit of the earlier exchanges has been extinguished.  The medical system has neither time nor interest in who people are; at most the amount of chemotherapy that Vivian infuses will be the subject of a medical journal article (1999: 43).  Of course I also am writing a journal article, which may be an example of what Vivian is fond of calling irony (1999: 8).

Wit has moments of remoralization, especially in Vivian’s relationship to her primary care nurse (she is being treated in a setting where she has a primary care nurse).  If disenchantment is our fate, remoralization is our possibility.  This essay extends that remoralization project by asking what disenchants contemporary life in general, how illness crystallizes this disenchantment, and how stories as a form of interaction can remoralize the world. 

 

THE RIDE

               

When I seek a name for how society disenchants, I call it the ride.  The ride promotes itself as making life better, but others interpret rides as increasing disenchantment.  One version of illness as a ride is offered by Albert Robillard, describing his experience of being a patient in an intensive care unit.  Robillard’s ride involves “the displacement of the self by the screens.”

The displacement was not only characterological, involving finding the truth of about who you are in the screens, but spatial as well.  Most of the monitor reading, so at least you thought and hoped, took place at the nursing station.  The placement of careful and continuous reading of the monitors there may have been a panoptic dream, but it effectively removed the critical reading of factors concerning life and death, as well as televised bodily behavior, to a remote, unseen location.  Additionally, the actions derived from this information were formulated in an invisible place, a site beyond personal influence.  (Robillard 1999: 49)

On the ride, the reality (Robillard’s body) is transformed into an image (the monitor).  The ICU ride, like most rides, instructs people to look to the image in order to understand reality; the ride is about the primacy of sign values.  The image then receives its privileged interpretation away from the primary reality, “in an invisible place, a site beyond personal influence.”  In the image is “the truth about who you are.”

                The ride sweeps people along, reducing the world to its signs.  In The McDonaldization of Society (1996) George Ritzer uses medicine as an ongoing illustration of how the fast-food model is applied across a diversity of social settings.  McMedicine as a ride poses three core questions to its (patient) customers: can you pay for it? can you stomach what you can pay for? and how quickly do you forget that there are other ways of eating?  The power of the ride is how effectively it can reduce life’s possibilities to its menu.  As Robillard testifies, the ride seeks to tell people who they are and how they feel.

                Specific rides are real, from intensive care units to fast-food restaurants, but I mean The Ride as a trope for everything that is not The Story, another trope based on but exceeding the real telling of stories.  At first I imagined the ride and the story as ends of a continuum, but I now think of them as the ever shifting foreground and background of a single gestalt.  Rides are powerful but not hegemonic.  Robillard becomes absorbed in the monitor screens, but he remains capable of critical reflection: “I began to think of how my body and my person were fragmented by the monitors” (1999: 62).  Eventually he transcends this fragmentation by redefining the monitors as a source of relationships.

There was a learning process in my looking at the nurses looking at the monitors and talking about what they saw.  I was directed to look at and read the monitors from the attention given to them by these same nurses.  It became a coordinated looking and reading.  (Robillard 1999: 62)

Unfortunately, Robillard, like Vivian Bearing in Wit, is more successful telling this story to his readers in his book than he is converting his “coordinated looking and reading” into dialogues with his nurses.  The nurses remained more interested in the ride than the story: “I could not tag them with my face, gaze, or identity, thus pulling them into conversations” (Robillard 1999: 63).

Here are three scenes of disenchantment, representing the medically underserved, the overserved, and the hyperserved.  These scenes also illustrate the shifting gestalt that comprises the moral attitudes of the ride and the story.  The first scene is actress Helen Hunt’s diatribe against managed care in the film As Good As It Gets (1997).  The punch line is when Hunt says that her insurance company is more interested in denying her claims than in curing her son’s breathing problems.  The same point is given longer and more tragic development in The Rainmaker (1997), in which Matt Damon plays a neophyte lawyer who successfully sues a medical insurer because its denials of treatment claims precipitated a young man’s death.  The making of these films suggests the public salability of narratives of disenchanted medicine.

The quality of the ride, and the source of disenchantment, in both these films is ambivalent.  Both films present themselves as critiques of disenchanted medicine: they criticize how illness becomes a ride when medicine is more concerned with terms of reimbursement than with the care of suffering.  Against this disenchantment, the films present themselves as remoralization projects.  But then the gestalt shifts and the films themselves can be viewed as rides.  Matt Damon wins his law suit; at least among the jury, a righteous sense of disenchantment has a cash value.  When Helen Hunt’s son eventually gets the best medical care, his breathing problems disappear; he’s transformed.  His former illness disappears as an unnecessary glitch in an otherwise workable system.  With Jack Nicholson’s economic clout behind him, he could be fixed.

Viewed in this second gestalt, both The Rainmaker and As Good As It Gets are disenchanting in their view that suffering is accidental, a mere moment in some larger scheme of things.  Some accidents are brutal, but all prove fixable to some degree.  The films thus presume the understanding that is implicit in any ride: bad things only seem to happen or only happen for awhile; really, riders understand, it’s all under control.  Jack Nicholson may ask the psychiatrist’s waiting room of patients—and by implication the audience—whether they dare consider that their present lives might be as good as it gets, but the film’s message is that life gets a lot better.  Anybody’s life can be changed, and in both films money is a primary medium of change.  Or, almost anybody’s life can be changed.  In both films those who have no insurance at all, and thus no one to sue, effectively disappear.  The ride often includes a disappearing act.  Vivian Bearing disappears into research data to the oncologists who neglect her Do Not Resuscitate order and call a code because, as one exclaims, “She’s Research!” (Edson 1999: 64).  Robillard, as an identity to whom one might speak, disappears to his nurses, who are swept along in the images on their screens just as the films’ viewers are swept along by its images.

                In a second scene of medical disenchantment, illness has disappeared entirely.  Getting off a plane in Nashville, I was attracted by a high-resolution, back-lit billboard.  At first I thought it must be advertising some nearby resort: I saw pictures of plush hotel rooms and landscaped grounds.  I thought it odd that one side of the billboard was dominated by a close-up of a man who must be the hotel manager, but that didn’t surprise me.  As I got closer I realized the man was a cosmetic surgeon and the billboard was advertising his spa.  The facilities were designed for longer stays so that patrons would be able to recuperate in comfort and not risk going back into public while the marks of surgery were still visible.

                If the intensive care monitor images claim to show the truth of how the patient actually is, and the films show the destitute ill-insured patients that audiences do not want to be, the billboard’s ride is promising its viewers how they could be, or at least how they could look.  The surgeon had surrounded himself with Greco-Roman busts, which apparently signified classical perfection and as images were blank enough to allow any viewer to project on them his or her own face and body.  The ride to becoming that face and body seemed to require only paying the price.

                Yet everybody has a story.  In Kathy Davis’s (1995) study of cosmetic surgery, women who are choosing (a recurring verb in the interviews) surgery speak for themselves, and their choices are embedded in stories about who they are.  In the lives that Davis interrogated, surgery becomes part of a complex personal story.  Davis’s interpretation of her respondents’ stories is contested (Bordo 1998), and in that contest the gestalt constantly switches.  First it’s a ride: the foreground is medicine as commodity, and patients are consumers pursuing a commodified image.  Then the foreground becomes stories of individual decisions to have surgery not in a spa and at considerable sacrifice.  Then the stories can be interpreted as rooted in internalized beauty ideals that articulate capitalism with patriarchy, and cosmetic culture is a ride again.  This instability does not make the contest between the ride and the story less real.  The women Davis interviewed are making moral decisions consequential both for themselves and, if their accounts become legitimated, for medicine and society.

                The ethos of medical overservice is nicely articulated in a third scene that—at least at present—departs from medicine.[1]  In a recent interview a British cybernetics expert, Kevin Warwick, described experiments in which he has a computer chip implanted under his skin.  The chip allows him to control appliances, such as doors and lights, simply by moving in certain directions.  Warwick’s work is part of what many see as the ultimate goal of computerization—the computer working in and through the body.  The premise of the ride is best expressed in Warwick’s explanation of why he undertakes this work: “I was born human.  But this was an accident of fate—a condition merely of time and place.  I believe it’s something we have the power to change” (Warwick 2000: 145).  For Warwick, being born human is inherently disenchanting; the ride is changing this accident. 

                What Robillard learns in intensive care is that the body is no accident; when bodies are reduced to digital images there is no interaction.  Time and space are not “mere” conditions but are necessary for dialogue between persons: “The institutionalized, naturalized, socially consensual order of conversation has a rhythm, a time order, that assumes an intersubjective coordination of physical human bodies” (Robillard 1999: 63).  On Robillard’s account of the embodied prerequisites of interaction, Warwick’s ride will end in profound disenchantment because it deprecates time, space, and the body as mere accidents to be changed.

                One of the many issues Warwick raises is how much of the ride any of us want to refuse.  I find it easy to be derisive of Warwick’s chip implants because I can perfectly well turn on the lights and open the door without them.  I have to acknowledge that I appreciate having lights to turn on and doors to open, and these devices once transformed the natural (darkness, cold) into accidents of time of day, climate, and season.  As clear as the difference seems to be between Robillard’s project of embodied conversation and Warwick’s project of the computerized body, the line between the ride and the story is never easily drawn—but again, that difficulty does not render the moral choice of how to live any less pressing.

The need to make practical decisions about which rides to get on and which stories to tell is perhaps clearest when the ride proclaims an end to disenchantment as its political project.  Former Delaware governor Pete Du Pont now chairs a “non-partisan, public policy research institute.”  Du Pont’s op-ed column, ‘Wealth Creation Benefits Society” (1999), immediately puts its readers on a ride that recalls a succession of other rides:

The pace of change is accelerating.  We are in the midst of a digital revolution, and, let’s admit it, we are in a new era.

            One innovation follow another—personal computers, fibre-optic cables, fax machines, the Internet, cell-phones, CDs, DVD players…the wonders never cease.  And the best technologies are yet to come.

            Big social changes often occur under the radarscope but are equally important.  For example: almost one in two U.S. households own individual stocks or mutual funds today….Wealth creation for many market participants has been spectacular in the 1990s. 

                Du Pont’s “new era” epitomizes the ride; his “wonders” are the toys of the electronics warehouse store.  Du Pont’s language attempts to generate a sense of charismatic change: revolution, new era, innovation, wonders, big social changes, the best yet to come.  The “spectacular” ride is “wealth creation,” and here the ride shows its politics.  Citizens have become “market participants” and the fruits of their participation are commodities: computers, fax machines, music and video players.  Most of these “wonders” are media for the advertisement of other commodities, and many require an additional chain of commodities for their operation (software; music, game, and video disks).

                Du Pont’s prose does not give its reader time to think about whether his or her life is better as a result of being permeated by commodities already defined as wonders.  Instead Du Pont or his speech writers create a discursive ride that sweeps the reader along.  When Du Pont gets to his political agenda—cut taxes, privatize Social Security, eliminate health insurance by instituting medical savings accounts, benefit the “growing investor class”—the reader is not expected to question how those policies would actually work, just as she or he was never offered space to question whether having a computer, fax machine, and cell phone has actually made his or her life better. 

A significant indicator of our cultural preoccupations is that Du Pont’s most specific recommendation addresses health.  “Most individuals would accumulate tens of thousands of dollars in medical savings accounts over their lifetimes,” he writes, “a fund to provide for their medical care in old age and an estate for their heirs.”  This ride to medical affluence never says who would need less medical care and/or at what lower price, thus generating any new wealth in society as a whole.  Du Pont’s ride—and the logic of medical savings accounts—offers itself to people who expect to have good health and not to need significant medical care before old age, when unspent deductible payments will have compounded.[2]  The ill are tacitly placed outside the ride; they have no admission to Du Pont’s theme park of electronic gadgetry and market-generated affluence.  Like the other one in two households who do not own stock and have not been part of the 1990s wealth creation, they have no voice or visibility. 

                Many people are swept along on Du Pont’s ride, but like any ride it is not hegemonic.  The distinguished lay ethnographer Dave Barry provides a compelling countervision to Du Pont’s utopia:

The other essential tool of the “information economy” is the cellular telephone, which enables businesspeople, wherever they are, to attempt unsuccessfully to return each other’s voicemails….As far as I can tell, none of these people has ever actually reached the person he or she wanted to talk to.  But they keep trying!  They are in the airport right now, pacing and shouting to nobody.  This kind of productivity would be impossible without information technology.

                And it’s just the beginning.  Some day, our economy will become so advanced, so purely informational, that we won’t even walk around.  (Barry 2000)

At first I feel reassured that if as popular a humorist as Barry can laugh at Du Pont’s future, the hegemony of rides cannot be taken too seriously.  But the same people who laugh with Barry can also support Du Pont’s politics.  Rides are not hegemonic, but neither do the stories that are told within rides necessarily undo the real power of those rides to condition people’s sense of possibilities and of moral action.[3]  Robillard could transform the monitors in the intensive care unit into a story, but he could not get his nurses to talk to him.  That talk is the core of my other trope for moral being and acting, the story.

 

THE STORY

 

Sooner or later, the ride wants from us.  Rides want us to consume them for someone else’s profit, and as Ritzer (1996) has shown with reference to fast-food restaurants, consumption involves increasing amounts of work.  The ride not only wants our money and our effort; it wants our assent to its world: Du Pont wants his readers to accept his reality as their own and vote accordingly.  Du Pont claims to want for his readers, but all he wants for them is to become capable of consuming more.  Consumption is fueled by disenchantment, which it claims to remedy, and the ride’s ultimate disenchantment is with various accidents of being born human, as Warwick says.  On the ride these accidents can all be fixed, at least for some, and the others are rendered invisible.  Riders seem invariably if tacitly isolated from their invisible fellow creatures, producing the isolation Robillard experiences.[4]

A story also wants assent to its world, but how assent is achieved and what it requires differ from the ride.  Whereas the ride wants from us, the story wants for us.  The story wants for us in relation to others; thus the scope of “us” expands through the medium of the story.  The story wants what Robillard wants in intensive care: conversation based in a mutual recognition of identity. 

                Here are five premises that seem to guide the story, and again my specific stories are about illness and trauma.[5]  The first premise is expressed by Charles Taylor, writing about the emergence of the distinctly modern sense of self, which he argues was a new idea in the late eighteenth century. 

There is a certain way of being human that is my way.  I am called upon to live my life in this way, and not in imitation of anyone else’s.  But this gives a new importance to being true to myself.  If I am not, I miss the point of my life, I miss what being human is for me. (Taylor 1991: 28-29) 

Taylor is well aware that this idea of the self entails a risk of self-enclosure, so it must be immediately complemented by a second idea.

                Taylor, like Robillard though in a different idiom, understands human life as being valuable because of its “fundamentally dialogical character.”  “We define [our identity] always in dialogue with, sometimes in struggle against, the identities our significant others want to recognize in us” (1991: 33).  Thus the point of our unique lives, which we seek not to miss, lies beyond those lives themselves: “So the ideal of self-choice supposes that there are other issues of significance beyond self-choice” (1991: 39).  Thus for Taylor it’s not sufficient to say that the point of your life is being on the ride, because rides present themselves as self-choices.  When rides are taken, they should be used as occasions for dialogical recognition, a good deal of which occurs in Erving Goffman’s (1961) famous ethnography of merry-go-round riding.

                These first two premises—ways of thinking about the self and its relation to other selves—say nothing specific about illness.  The illness story begins when life suffers a disruption (Becker 1997) that renders its previous “point” either forgotten or no longer viable.  What is disrupted are not only one’s plans but, more fundamentally, the basis of the self that Taylor—following the interactionist tradition—grounds in the self’s need for others’ recognition.  The ill and disabled are typically denied this recognition.  Robillard argues that this denial goes beyond fear of the condition that the ill person represents.  He offers particular insight into others’ reactions to his own body, paralyzed by what he prefers to call motor neuron disease:

I surmise that in the perception of others one sees the full range of bodily instrumentalities and potential instrumentalities, calling out and institutionalizing, moment by moment, one’s own capacities and instrumentalities; the sight of the paralyzed, the crippled, the lame is a sharp denial of this commonsense, reciprocal knowledge. (Robillard 1999: 72; see also 63) 

Those whose disrupted lives fall outside others’ commonsense, reciprocal knowledge must use stories to establish new terms of common sense and new relations of reciprocity within a community that affords recognition.

                The fourth premise is that the interactional dynamics of this withdrawal of social recognition are part of a more extensive political economy of censorship.  In one of Jean Baudrillard’s early works he describes how the logic of consumer capitalism guarantees every desire its respective object of satisfaction.  Baudrillard ([1970] 1998: 177) writes that “all the things which do not fit into this positive vision are rejected, censored by the satisfaction itself…and, no longer finding any possible outlet, crystallize into a gigantic fund of anxiety” (emphases omitted).  Kirby Farrell (1998) describes this fund of anxiety as “post-traumatic culture,” which is simultaneously obsessed with life’s horrors but also seeks to contain these as exceptional and avoidable instances.  As Good As It Gets and The Rainmaker both can be seen as products of posttraumatic culture, obsessed with trauma but containing it within plot structures where it can be fixed.

                My fifth point is the story itself.  The story expresses the teller’s particular call of suffering—the disrupted life that finds no interpersonal recognition.  Storytelling is a form of ethical action because it joins those who suffer to those who feel called to respond to this suffering.  Although there is considerable philosophical support for this idea (Levinas 1989), I prefer to make the point with a story.  Eduardo Galeano describes a physician, Fernando Silva, working late on Christmas Eve in the hospital in Managua.  On his last rounds he hears footsteps behind him, turns, and finds a child he is caring for. 

In the half light he recognized the lonely, doomed child.  Fernando recognized that face already lined with death and those eyes asking for forgiveness, or perhaps permission.  Fernando walked over to him and the body gave him his hand.

                Tell someone,…” the child whispered.  Tell someone I’m here.” (Galeano 1991: 72)

The story, as the trope I oppose to the ride, gives voice to what is censored by the logic of satisfaction.  Stories tell those things that defy commonsense, reciprocal recognition yet seek to be heard, seen, and recognized.  “I had known the pain,” wrote Audre Lorde (1980: 16) about cancer, “and survived it.  It only remained for me to give it voice, to share it for use, that the pain not be wasted.”  Not wasting the pain becomes the point of Lorde’s life, at the moment when that pain threatens her sustaining what has been the point of her life.  The story is always marked by pain, compounded by censorship of that pain.  Stories call to be heard through that pain and censorship.

Another recent film, Life Is Beautiful (1997), offers a story about stories.  The hero’s happy life is disrupted when he and his young son are sent to a Nazi camp.  Immediately he knows the point of his life is not only to keep his son alive but also to turn the experience into a story that his son will be able to live with.  So he works to maintain the illusion that the whole camp is a big game—a ride—in which it’s possible to score points and the winner gets a tank, because his son’s favorite toy had been a tank.  The death camp becomes an occasion for this man to achieve the point of his life, which is to make possible a life for his son.  He not only makes it possible for his son to survive, he also gives him memories—a story of what his father did—that will allow him to live in a post-Holocaust world and still believe that life can be beautiful.  The hero’s character is contrasted with a doctor he has known before the war.  The doctor colludes with the Nazis, is unable to hear the hero’s plea for help, and eventually goes mad.  The doctor misses the point of his life.

Some argue that the movie compromises too much: the horror of the Holocaust is contained and turned into a ride for the audience.  But if the camp is not shown in all its brutalities, the Nazis are not harmless buffoons either.  The hero has to suffer, endure, and eventually die to sustain the story that is the point of his life.  For me, his death prevents the film from containing disenchantment as rides do.  Instead the film seems an example of remoralization, although the objections to the film show that specific instances of what counts as remoralization and what counts as disenchantment will always be contested.  The story accepts such contests as extending its conversation, while the ride seeks to deny such contests.

Stories are told by a self that has been disrupted out of its place in society’s moral order and seeks a new place, but the story also compels recognition that the moral order itself requires reevaluation.  The story joins these two levels of remoralization; the personal is political.

MUNDANE CHARISMA

 

If the fate of our times is to participate in a contest between the ride and the story, not the least complication of that participation is that we can rarely choose the ride or the story.  There seems little possibility of living in this world and not participating in rides, but to adapt Weber’s terms, we can practice to be on the ride without being of the ride.  We can, while on different rides, listen for the story that is also being told even as people are being swept along.  We can also refuse those aspects of the ride that censor certain stories.  We can seek to recognize “all the things which do not fit”—my version of Weber’s “inconvenient facts”—rather than participate in their (usually tacit) marginalization.

                Everyone has a story, and whether any story is on the ride without being of it will remain contested.  As Taylor (1991: 78) writes, “The nature of a free society is that it will always be the locus of a struggle between higher and lower forms of freedom.”  I would add that the struggle is not only between higher and lower forms; the struggle will be over which are higher and lower forms of freedom.  The distinction of the ride and the story is only one way to conceptualize this struggle over which are higher and which are lower.  Participation in that struggle is part of our fate.

                “We” in the above paragraphs are simultaneously social scientists, politically engaged citizens, and variously suffering, disrupted bodies.  The great Weberian temptation is to lapse into resigned cynicism about living in a disenchanted world.  One antidote to this cynicism is greater recognition of mundane charisma.  My own search for mundane charisma has been among the ill.  Robillard and Lorde exemplify this charisma for me.  Like the dying boy in Galeano’s story, they remind others that the ill and suffering are there—not invisible—and they call on others to recognize what it’s like to be there.  They are living posttraumatic lives, but their trauma becomes the source of their work, and their work becomes a source of community with new possibilities of role taking and common sense. 

                Let me tell a final story.  When I was in the hospital undergoing diagnostic tests to figure out what kind of cancer I had, one test was extracting bone marrow.  I treated the experience as a very unpleasant ride.  The last part of the test involved observing whether certain blood markers has changed after the extraction, so when the physicians had left a technician came in to take blood.  We got to talking about blood taking, tests, and hospitals.  Then she said something extraordinary to me.  “Remember,” she said, “everyone who touches you affects your healing.”

                Rides touch us in one way and stories in another.  Which parts of life are disenchanting and which are remoralizing will remain contested, but the differences are real, and our vocation is the continuing struggle to tell one from the other.

 

REFERENCES

As Good As It Gets  1997.  Directed by James L. Brooks; screenplay by Mark Andrus and James L. Brooks.

Barry, Dave.  2000.  “The ‘Haves’ Know What NASDAQ Is; The ‘Have-Nots’ Are Eating Yak.” Calgary Herald, May 21, p. D14.

Baudrillard, Jean. [1970] 1998.  The Consumer Society: Myths and Structures.  London: Sage.

Becker, Gay.  1997.  Disrupted Lives: How People Create Meaning in a Chaotic World.  Berkeley: University of California Press.

Bordo, Susan.  1998.  Braveheart, Babe, and the Contemporary Body.”  Pp. 189-221 in Enhancing Human Traits: Ethical and Social Implications, edited by Erik Parens.  Washington, D.C.: Georgetown University Press.

Davis, Kathy.  1995.  Reshaping the Female Body: The Dilemma of Cosmetic Surgery.  New York: Routledge.

Du Pont, Pete.  1999.  “Wealth Creation Benefits Society.” Calgary Herald (Knight Ridder/Tribune News Service), November 11, p. A23.

Edson, Margaret.  1999.  Wit.  New York: Dramatists Play Service.

Farrell, Kirby.  1998.  Post-traumatic Culture: Injury and Interpretation in the Nineties.  Baltimore: Johns Hopkins University Press.

Frank, Arthur W.  1995.  The Wounded Storyteller: Body, Illness, and Ethics.  Chicago: University of Chicago Press.

Frank, Arthur W.  1997a.  “Illness as Moral Occasion: Restoring Agency to Ill People.”  Health 2:131-148.

Frank, Arthur W.  1997b.  “Enacting Illness Stories: When, What, and Why.”  Pp. 31-49 in Stories and Their Limits: Narrative Approaches to Bioethics, edited by Hilde Lindemann Nelson.  New York: Routledge.

Frank, Arthur W.  2000.  “Illness and Autobiographical Work: Dialogue as Narrative Destabilization.”  Qualitative Sociology 23: 135-156.

Galeano, Eduardo.  1991.  The Book of Embraces.  New York: Norton.

Goffman, Erving.  1961.  Encounters: Two Studies in the Sociology of Interaction.  Indianapolis: Bobbs-Merrill.

Kleinman, Arthur.  1988.  The Illness Narratives: Suffering, Healing, and the Human Condition.  New York: Basic Books.

Levinas, Emmanuel.  1989.  “Ethics as First Philosophy.”  Pp. 75-87 in The Levinas Reader, edited by Sean Hand.  Cambridge: Blackwell.

Life Is Beautiful (La Vita è Bella).  1997.  Directed by Roberto Benigni; screenplay by Vincento Cerami and Roberto Benigni.

Lorde, Audre.  1980.  The Cancer Journals.  San Francisco: spinsters/aunt lute.

The Rainmaker.  1997.  Directed and screenplay by Francis Ford Coppola.

Ritzer, George.  1996.  The McDonaldization of Society. Rev. ed. Thousand Oaks, CA: Pine Forge Press.

Robillard, Albert.  1999.  Meaning of a Disability: The Lived Experience of Paralysis.  Philadelphia: Temple University Press.

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[1] In personal communications with medical researchers and entrepreneurs, the most bullish forecast I have heard about chip implantation involves using these to follow up broad-spectrum genetic testing for disease risks.  Implanted chips would monitor protein levels and thus fine tune the risk information from DNA.  Techno-optimists forecast implementation within five years.

[2] Proposals for medical savings accounts differ, since the concept is more proposed than actually implemented.  In general individuals are required to carry private health insurance with high deductible payments, for example $2000.  Thus catastrophic costs are presumably covered.  Individuals then receive the deductible amount each year, either as an employee benefit or a payroll deduction; note that the unemployed are excluded.  Money not spent on medical costs during the year can be kept in a medical savings account.  Thus only good health can lead to what Du Pont predicts, “a fund to provide for their medical care in old age and an estate for their heirs.”  For a critical discussion see Taft and Stewart 2000: 8-9.

[3] This point summarizes Bordo’s (1998) objection to Davis (1995).  Women may be able to tell moving stories about their strategic use of surgery as part of a personal quest, but their actions still affirm the capitalist, patriarchal beauty system that makes such surgery compelling.

[4] Much of Robillard’s frustration with a variety of treatment experiences could be glossed by saying that while he is ostensibly the one on the ride, he eventually realizes the ride is not for him.  Throughout Wit, Vivian Bearing struggles with the realization that she is being used as part of her physicians’ ride; again the line at her death, “She’s Research!”

[5] For specific stories of illness, see Frank 1995, 1997a, 1997b, 2000.