Note: What follows are notes that I started in February and have kept on revising. The revision process is not at all finished, but I feel a need to make the notes available, especially as the seminar I’m co-teaching reaches its ending. This post is maybe my longest, but it can be read in fragments, as it is written.
At the end of the last episode of the long-running television medical drama House, the title character, who is a master diagnostician and someone dangerous to himself and others, and his oncologist best-friend Wilson are about to take a motorcycle trip to Mexico. They planned the trip years ago, but then couldn’t go. Now, it may be a one-way trip for both of them. For Wilson, that’s because he has untreatable cancer. For House, it’s because his misadventures have led him to lose his very identity—everyone believes he’s dead. Wilson points out that by House going to Mexico, rather than clearing up the mess, he will never practice medicine again. House chooses to go with Wilson.
As they get ready to ride off, Wilson asks House what they will do when the cancer gets worse. House flashes his most endearing grin and replies: “Cancer is boring.” That’s outrageous as a response to what Wilson anticipates, but it’s said in the context of absolute commitment to a friendship. House is a divided self: a sociopath who also has moments of genuine compassion. His character forces us to sort out what part of what he says is true, in what sense of truth. Is “Cancer is boring” House’s version of a Zen master whacking the sleepy student with a stick? Is he summoning Wilson to wake up to what cancer might dull him into forgetting? I realize how much I wish, when I was diagnosed, someone had said to me, “Remember, Art, cancer is boring.” That would have helped me stay awake. It would have been a great permission.
How is boredom, seldom acknowledged, a dilemma for the writer of an illness narrative? How is naming the boredom a refusal of the medical narrative? Wherein lies the boundary between boredom and what is not boring? What is the relation between boredom and pain, or fear?
Friendship is not boring. Ever since Gilgamesh, great narratives have friendship at their core, friendship and death, paired. If I ever write another illness narrative myself, I would like it to be the story of a friendship, as affected by illness.
What is the relationship between being ill, as what we call an experience, and writing an illness narrative, or reading one, as engagements in the work of narration? How does participation in narrative enable participating in life, just as having lived through something enables narration? And because narration, as an offering of one person’s experience to another, requires framing experience according to the anticipated response of the Other, how is experience always already a form of dialogue, never ours alone? Narration depends on a decision with whom to be in dialogue. Whose anticipated responses do we want to have shape the narrations in which we shape what we know as our experience?
For those who write about their experience, these questions are not so much asked as they are enacted. Asking them requires the luxury of remove.
Here is a possible understanding of narrative medicine. It’s not, I think, how faculty at Columbia understand NM, or how I understand NM, but it’s worth paying attention to. In Philip Davis’s Reading for Life, he interviews a British physician whom he calls Clive. Clive is a careful reader; he and Davis discuss some 19C novels that Clive appreciates. Then, directly relevant to medicine, they talk about John Berger’s nonfiction account of rural practice, A Fortunate Man. Davis writes:
“One form [Clive] says he sometimes dislikes, however, is what has been called ‘narrative medicine’, even though it comes from the same humanizing movement that looks back to John Berger. He is referring to the common belief that people must be able to have access to their own story, that they suffer without it, and that one way to realize it is by telling it to their physician who won’t otherwise recognize their individual depth. The doctor in him recognizes the value of all this but often as the relating of the story goes on, Clive complains, he finds people losing their initial insight, thinking it down into a more conventionally normalized and stereotyped account of their lives. He knows he must listen hard and try to interpret the ostensibly banal, but he is waiting for the flashes and discontinuities of insight. ‘I want the clue of the lyric glimpse, the vestige or the fragment to begin from, not the self-conscious spelling out of an over-clear narrative’, he says.” (144)
There’s a lot to consider in that excerpt, which deserves to be understood within Davis’s whole chapter, especially the more detailed conversation about Berger. Here are four initial observations: First, what Davis, channeling Clive, calls the “more conventionally normalized and stereotyped account of their lives” points toward what I would call a narrative, in the sense of culturally shared expectations about how a story ought to go. It’s difficult to tell a story without relying on a narrative, although you can also play against the expected narrative, disrupting it. Clive reminds us that narratives can go beyond being the enabling conditions for stories; narratives try to take over stories.
Second, I want to question whether people start with an “initial insight” that gets diffused or distorted in the narrative, or whether narratives are what people need, not only to make themselves understood to others, but also as a resource for telling the story to themselves. “Insight” is what people get to, in the course of hearing themselves tell their story, feeling the inadequacy of what they hear, and then struggling to say more.
Third, I worry about the equation between listening “hard” and trying “to interpret the ostensibly banal”. Who gets to define what is banal, and how does interpretation risk becoming an assumption of mastery. Is it useful to imply a relation between a speaker who is always losing their initial insight, understood by the physician who interprets what is getting lost in the banal? Which is not to deny that in stories about illness I hear a good deal that I consider banal; but when I have that reaction, what should I then be questioning?
Fourth, I value Clive’s phrases “the lyric glimpse … the fragment to begin from”. What I consider banal is health research that reduces living dialogue to interview “data” and then distills those dats into some number of themes, identified and validated by a coding procedure. Such research retains and values only what multiple participants say. Thus it systematically excludes “the lyric glimpse”, which is considered a one-off eccentricity of a single speaker.
Clive’s understanding of narrative medicine, which I find both limited and insightful, is worth keeping as a partner in dialogue over the question of what narrative medicine ought to be.
I hate the usage of pathography to refer to first-person narratives of illness; I hate it in the way Susan Sontag hated using cancer as a metaphor. When I started doing this work, if you entered pathography in a medical search engine, you found articles in which physicians proposed retrospective diagnoses of historical figures, whose behaviour makes better sense if we understand them through a contemporary medical lens not available in those people’s own time. I recall one article analyzing Joan of Arc hearing voices as a symptom of then undiagnosable mental illness. That’s pathography: biography as retrospective recognition of pathology, claiming the authority to interpret a life; interpretation claiming authority as diagnosis.
To call a personal illness narrative pathography is an act of appropriation that claims the narrative as territory belonging to medicine. No ill person I’ve ever met talked about wanting to write his or her pathography; the term presumes the perspective of medicine, and that’s the point of its usage. I’m reminded of Bruno Bettelheim’s critique of Freud’s English language translators choosing to render his ordinary vernacular German Es, Ich, and Über-ich in Latin as Id, Ego, and Super-ego, instead of using English vernacular It, I, and (more difficult to translate), Over-I. The translators’ project was to present psychoanalysis as a medical specialization, appropriate for and restricted to physicians. Proper medicine employs Latin terminology, another claim to authority.
Reading an illness narrative begins with respecting the writer’s language, and also seeking to understand the terms in which that writer wants to be read, by whom. What sort of respect is required when reading a text for which you are not an intended reader? Can physicians as readers take off the white coat?
As opposed to pathography, consider this statement by the psychoanalyst D.M. Black, in his Commentary to his translation of Dante’s Purgatorio. “We know that those who have suffered unverbalizable trauma … may be unable to surrender their sense of sadness and grievance, even though they have no conscious understanding of what it’s about and are unable to tell any adequate story to account for it” (450).
People write narratives of their illnesses in order to tell an “adequate story” that may not “account for it”—there is no accounting for many diseases—but as Black writes elsewhere, can at least contain what happened in verbalized form. And they write so that others, hearing their story, might be able to verbalize what has happened to themselves.
But, to understand illness narratives this way requires acknowledging the “sense of sadness and grievance”—what deserves to be called trauma—that medicine not only cannot take away, but that treatment of illness often contributes to, by omission or commission. For clinician readers, far safer to know such writings through the label of pathography, in which the words become symptoms of something within the patient, diagnosable at a distance, which was the original medical intention of pathography, to diagnoses retrospectively, at an historical distance.
Memoirs—illness narratives—purport to recount what actually happened, but what actually happened then gets tangled in words, and memoirist are variously reflective about that. Two passages from Graham Swift’s novel Mothering Sunday express my views better than I could have said it myself:
“A word was not a thing, no. A thing was not a word. But somehow the two—things—became inseparable. Was everything a great fabrication? Words were like an invisible skin, enwrapping the world and giving it reality. Yet you could not say the world would not be there, would not be real if you took away the words. At best it seemed that things might bless the words that distinguished them, and that words might bless everything.” (128-29)
“She quite liked the word “narrative,” it was a sober, dependable-sounding word, but she didn’t see why one thing should be called a narrative and other things just stories. The word she most liked in those days was “tale”—and she was glad to find out that [Joseph] Conrad often preferred it too. There was something more enticing about calling something a tale rather than a story….” (165)
On my account, people use narratives as resources to make up their tales. Ill people tell tales, and those tales play with, and often against, the narratives that the storyteller, like everyone else, started off expecting.
Where I differ from most colleagues who do “narrative analysis” is that I love tales and embrace calling them that. For academics, narrative is the more sober, dependable-sounding word.
Here’s a caution for narrative medicine, including my own work on storytelling. The writer Zadie Smith begins her memorial to Joan Didion first quoting and then commenting on one of Didion’s most famous, aphoristic sentences: “We tell ourselves stories in order to live. A sentence meant to be an indictment has transformed into a personal credo.” Smith continues, writing that Didion was “exceptionally alert to the words or phrases we use to express our core aims or beliefs. Alert in the sense of suspicious.”
When hearing someone tell a story, marked as their story, of what ought we to be suspicious, while recognizing that suspicion can be another form of denial, a way of not hearing what’s obviously being said by insisting the real truth must be below its surface? The evil genius of the idea of transference in psychoanalysis is that it renders anything the analysand says about the analyst not about the analyst, but rather a manifestation of the transference; that is, feelings about someone else, now projected onto the analyst. We’re called to recognize transference as both a genuine insight and an extraordinary professional convenience, depending on how the idea is deployed.
I seek to be suspicious of how institutional discourse works its way into ordinary speech, making people prematurely confident that the story they’re telling is helping them to live. To vary David Bowie’s lyric, people do but also don’t know quite well what they are going through. Much of the difference lies in where they’ve borrowed their language from (not if, but where).
Walter Benjamin, from “The Storyteller”: “the wisest thing—so the fairy tale taught mankind in olden times, and teaches children to this day—is to meet the forces of the mythical world with cunning and high spirits.” Which is fine, as long as your body can sustain it. I never understood Merleau-Ponty until I had chemotherapy. As the drugs took apart my body’s stability, I came apart.
The moments I love and admire most in illness tales are when someone whose body has every right to have given up still manages to meet the forces of the mythic world with cunning and high spirits. Or at least tell a tale later in which they do.
What The Wounded Storyteller got right: there is an affinity between embodiment—as the sedimentation of how people have used their bodies and had those bodies used—and the stories people tell. Stories depend on narrative resources, and these are finite within any socio-cultural milieu. But despite, and sometimes because of, the finitude of resources giving people’s stories a sameness, there remains an irreducible testimonial value: the I was here, and this happened demand of the story, to see the world as where these thing happen.
The problem is that people want and need to see other people as types; it reduces complexity. Thus it’s too easy to translate narrative resources into a kind of personality diagnostic schema. Narrative medicine is a perpetual struggle against forms of typification. The tale begins where the medical chart leaves off.
The poet Mary Jo Bang, in the introduction to her translation of Dante’s Purgatorio, writes:
“In Camera Lucida, Roland Barthes argues that when looking at photographs taken in the past, there are two possible reactions: one, studium, an intellectual curiosity about the historical, or two, a state of punctum, a piercing recognition of likeness so profound it is sometimes perceived as physical.” (xx)
I’ll call this the Barthes/Bang distinction. I find it useful as a description of the attitudes in which people read illness narratives. In phenomenology, an attitude refers to how consciousness is prepared to receive its perceptions of the world. Our reactions depend upon the attitude in which we experience. Both reactions, as Bang calls studium and punctum, have a claim. The problem is when one crowds out the other.
The biggest problem writing The Wounded Storyteller was balancing studium and punctum. Both clinical professionals and social scientists read illness narratives in an attitude of studium, treating them as data on the thinking and feelings of these Others, the patients. The studium reading looks for causal relationships; it seeks to categorize. It then compares studies, looking for overlaps and disjunctions in what researchers found, a significant verb. That isn’t bad, but its danger is simplification of any individual case—reducing particularity to a type—and ignoring that things happen for more reasons than causation can encompass. For some work, that attitude can be useful, even essential, in the sense that Newtonian physics is apparently adequate to get you to the Moon, but if you go further, it leads you off course. So, how far are you committed to going?
Reading for what Bang/Barthes calls punctum participates in the world of Emmanuel Levinas: here we experience the recognition of shared humanity in the face of the other, and the demand that face makes, a demand that exceeds recognizing. I must act in response to the need of the other; that need commands my action. Empathy seems to me a weak word to describe this “piercing recognition of likeness” that feels physical. A narration read in the attitude of punctum precipitates recognitions that exceed any categorization. Seeing the utter singularity of the person before me, I cannot respond in the manner prescribed by a template. My response must be as singular as the face of the other. Entitlements of professional status become as irrelevant as whatever entitlements the Other enjoyed before illness. Knowing and being known are inextricably mutually dependent. This is the moment of being for the Other, consumed in that relation. I believe Simon Critchley is correct to call such ethics an impossible demand. I can neither stay long in such moments, nor can I be fully human without such moments.
Institutions like hospitals cannot tolerate their workers viewing the patient/client/products in an attitude of punctum. The disruption of workflow would be unsustainable. Therein lies the problem for remaining human in such institutions, in whatever capacity one is there.
One of my most cited articles is cited, I suspect, mostly because of its title: “Can We Research Suffering?” Research seeks findings. Suffering is in its elusiveness: its shape-shifting refusal to be specified, either in a cause, locus, or level of intensity. Narrative medicine might do well to spend less time rehashing Susan Sontag’s Illness as Metaphor and instead reread her early essay, “Against Interpretation.” She concludes in the rhetoric of manifesto: “In place of a hermeneutics we need an erotics of art” (1964; I first read it about five years later). In place of research on suffering, we need a reconnection to the mytho-poetics of suffering. Humans have been rendering suffering as tales ever since the epics of Inanna and Gilgamesh. A task for narrative medicine: to connect someone’s present suffering, and the words that enwrap it, to a narrative tradition in which they can feel no longer alone.
An illness narrative is, among many things, a display of grace under pressure. In texts of witness, what is said is secondary to the act of saying it. Can we keep constantly in mind what it is costing the person to write? Especially those who write in the imminence of death. The difficulty is to get beyond admiring them—and far beyond analyzing them. The point is to take what they are giving us into our lives, to make its gift live within us. To allow the text to save us from our pettiness, our neglect, our sense of entitlement to life.
If House, the TV doctor, is right and cancer is boring (if also terrifying, but calling it boring helps tone down the terror, putting it in its place), what is not boring for me—and we each must find this for ourselves—is the relationship between experience, narration, and dialogue. Experience is how we remember and understand what happened to us and its effects on us. Narration is how we tell others what happened; tales are one form of narration and reciting vital signs is another. Dialogue is narration taking place in a relationship that acknowledges an extensive responsibility to the Other with whom I speak; this responsibility can be called ethical. In dialogue, I am open to the possibility of the Other understanding my narration differently than I intend it; I expect the Other’s understanding to affect my own understanding. In dialogue, we change together, mutually, and we keep changing. At least that’s a beginning of dialogue—which I expect never to understand fully; again, sustaining openness is crucial.
I understand these three—experience, narration, and dialogue—in a relation that defies diagramming and is most like the game of rock, paper, scissors. Players extend one hand, simultaneously, with the fingers signing rock (a fist), paper (all fingers extended), or scissors (two fingers extended). Rock breaks scissors, scissors cut paper, and paper wraps rock. It’s not a perfect metaphor, but it upsets putting experience, narration, and dialogue into either a chronology, a hierarchy, or a Venn Diagram. Each needs the others and turns back onto them. In their mutual relation, none is stable. Those who wish to fix things—which often seems to require making something stand still—will be frustrated by this way of thinking, and vice versa. The world does not exist as it does for the convenience of those who need to study it or act upon it to pre-given ends. We study movements that include mutual effects, and we ourselves are affected. There is no standing outside, or standing still.
I was once asked, as a question after a lecture I’d given, what single idea of Mikhail Bakhtin was most valuable to me. I answered his commitment to the unfinalizability of any person, exemplified by an author treating characters as unfinalizable. For Bakhtin, the dialogical author never claims any last word on a character, but always grants that character space, possibility, potential. The author writes with anticipation of being surprised by what the character may yet do, and in that sense the dialogical novel doesn’t really end. The Brothers Karamozov just sort of stops, at a turning point in the action, but not with any sense of a final ending. The characters will continue to do unexpected things.
Yet I think today, I might instead answer that it’s Bakhtin’s idea of answerability, comprising both each character recognizing how they are answerable to other characters, but also the reader taking on a task that is never resolvable: how to be answerable to the text, whether that means characters, or a tale, or an argument. Reflection on how we are responding, especially worry about how our responses might be evasions—that’s where our fate lies.