Illness Narrative 2022, Unconcluded

The series of blogs I started in early March, when I was beginning to teach the seminar on illness narratives in the Narrative Medicine program at Columbia, seems to call for some conclusion—what’s new or changing? I should have written this post two months ago in early May, but my life was overtaken in ways that sort of fit the topic of the seminar. First, I got Covid, which thanks to vaccination was what I think is called “a mild case”, although I wouldn’t want to have anything worse. Then I had to spend about six weeks in Connecticut—my first visit since Covid travel restrictions—literally putting my father’s house in order, including changes to his home care and medical care. Although, when it’s your own parent’s house, literal putting in order can’t avoid taking on metaphorical overtones, even Freudian ones. In the course of all this, I’ve had some time to think about what I learned in the illness narrative seminar. I’m not sure the interval has helped. As much as I’d like to offer the sense of an ending, I can’t. If anything, I become less sure I should.

From my perspective, which has by now become a particular one, our seminar readings split between those narratives that were published when I wrote The Wounded Storyteller in 1994 (when I was actually writing it) and those published in the last five years. Among the recently published, I found another division between writing that showed a self-consciousness of participating in an established genre and writing that presented itself as if nobody had written about illness experience before. Anne Boyer’s The Undying exemplifies the self-conscious contemporary narrative; thus she writes: “The silence around breast cancer that [Audre] Lorde once wrote into is now the din of breast cancer’s extraordinary production of language” (p. 8). That quotation is, for me, a sort of epigraph to one sort of contemporary writing. Although I should be clear that for Boyer, the “din” is not so much narratives like Lorde’s; rather it’s the Internet din of too much information; could we call it narrative overload? Still, Boyer writes with a need to measure a distance between herself and earlier writing like Lorde’s.

By contrast, Rana Awdish’s In Shock expresses no awareness of participating in the considerable tradition of physicians writing about their own illnesses and contrasting what they knew as a doctor from what they learned by becoming a patient. I think Awdish’s book is valuable for any ill person to read, and even more valuable as something every clinician-in-training should read. The title of the German translation gives a better sense of her cause: “I am not a case. I am a person.” At a moment when Awdish at her most vulnerable, she watches a physician who’s treating her and fears—because her life depends on it—that she’s “becoming a case” for him. She believes that detachment could be fatal for her. Later, after returning to medical practice, she makes the same point about a junior colleague’s case presentation: “What was missing, I realized, in his reporting of her case, seemed to be any acknowledgment of the absolute shattering horror of this particular sequence of events. They didn’t see her as a person. She was a case to them” (p. 119).

For anyone who has been reading illness narratives for a while, there’s nothing new in what Awdish notices or in her eminently sensible proposals to make clinicians more attentive—or, maybe just attentive at all—to “the existential nature” (p. 146) of what their patients face. That’s been the message all along. Yet that message seems to require being said over again, in order to remain as hearable as it ever is, and I become less sure how hearable that is. So I’m not criticizing Awdish; on the contrary, I’m recommending her book. But I am noticing what Awdish either doesn’t know or chooses to leave out of her narrative, which is the considerable problem of why these same problems need to be restated, over and over.

Boyer’s awareness of the tradition in which she writes brings its own problems. “I do not want to tell a the story of cancer in the way that I have been taught to tell it,” she writes (p. 115). Multiple sources have taught her how to tell her story: previous narratives including Lorde’s, Internet support groups, and clinical directions of what to feel and in what narrative to interpret that. On my reading Boyer does manage to tell it differently, but that has a cost. An Amazon review (note: for me, the words of the prophets are no longer written on subway walls, as Paul Simon once told us, but now can be found in Amazon reviews, at least occasionally) praised the book but said it wasn’t something that people who are recently diagnosed or in treatment should read. Fair enough, I say. Nor does it have to be that sort of book. But if you refuse narrative closure, then your narration tends to fragment. That’s the place where I find myself these days when I think about illness and its narration. Rereading The Wounded Storyteller for our seminar, I felt nostalgic for when I believed two things. First, I believed, without giving it much thought, that thirty years later I wouldn’t be reading the same things being said about the clinical and social non-recognition of how illness affects what Awdish calls the whole person; I thought something might be learned, and it has, but that learning is still widely distrubuted. Second, I believed that offering some commentary, like my three types of narrative, could help move things along. Now, I’m not so sure of either.

As to the non-recognition of illness as existential crisis, let me first be clear that Boyer would be happy if she could have gotten at least one night being cared for in the hospital after her mastectomy, instead of being turfed the same day as surgery; how about pain control and understanding risk management as more than the hospital’s potential liability? As to Awdish’s more ambitious desire—recognition of the person as more than a case—I see our collective inability to do that reflected in Covid news stories. I shake my head at the phrase “getting back to normal”, as if Covid was going to end, full-stop. And, I’m fascinated at how much news coverage there is about new vaccinations, but how little interest there is in changing the conditions that made the pandemic predictable, as we should remember it was. Which recollects what Audre Lorde said, forty+ years ago, about cancer and our collective unwillingness to look at what causes it in the first place.

As to commentaries on illness narratives, whether based in social science methods or literary, my worry—and I say this with some guilt—is that they risk distracting from what matters most, which is engaging the voice of the person who suffers immediately. Commentary mediates that voice; it puts experience at a distance by making it knowable through some analytic device—that’s what academic researchers do. As much as I tried to quote illness narratives themselves, I inevitably contained those voices in my writing; I put them in a framework, which is a word I now use with reservations. The problem is how to help the first-person voice remain uncontained, unframed, unfiltered: not organized into categories geared to professional accessibility. The Wounded Storyteller may remain a wilder book that those few written since on the same issues, but for me, it’s still not wild enough, by half.

One reason (among several) why I prefer to write about literary fiction these days is that the work of art seems to have greater potential to mediate the horror without losing its quality of dread, angst, that which makes us tremble. “I have told you what I have seen and heard, but faintly, nothing like the image and horror of it”, says Edmund to Edgar in King Lear (1.2.151-53). At that point in the story, he’s lying; any horror is what he creates through his words. Later, we will see something like the image and horror of it, and as that happens on Shakespeare’s stage, we will be able to witness it, to stay with it. How much of “the image and horror of it” can a first-person narrative ask its readers to witness, and when does it have to tell “but faintly”? And how can anything written about such narratives avoid becoming a form of distancing between the writers of such narratives and those readers who need, for different reasons, to affirm what the narrator needs to show them? 

Responding to Anatole Broyard

Anatole Broyard died before I had a chance to meet him, and that gives my reading a particular regret. I’m not sure why I would have liked to have met him, whether that involves resolving some question or gaining some approval. I think part of his success as a critic was his ability to make authors want, even need him to approve. The first chapter in his book, “Toward a Literature of Illness,” appeared in the New York Times just before my book At the Will of the Body was available in bound galleys for prepublication review. Broyard died much sooner than he hoped or anticipated. 

I was sent the bound galleys of Broyard’s Intoxicated by My Illness for review about a year after my book was published. I was obsessed with illness narratives; they were all I could read, beside the social theory I was teaching in my day job. Many of Broyard’s aphoristic lines have been my constant companions for three decades: the idea of illness as “a great permission” (23), the recognition that “It may not be dying we fear so much, but the diminished self” (25), and “I want to be a good story for him” (45). These lines helped me to understand how to turn the memoir I had written into an expanded project. Broyard articulated an agenda for me: how to offer ill people a permission that could stave off the diminishment of self; how to help people to become good stories both to others and to themselves, because as Broyard realizes, we can embrace our story only if others give it their recognition.

Years later I read with curiosity but surprisingly little surprise Henry Louis Gates’s chapter on how Broyard spent his life passing as white. Later I read reviews of the book by Bliss Broyard, Anatole’s daughter, in which she traces her family’s tangled history and deals with her own racial identity, as that had been obscured in deceptions. I realized how deeply Broyard had hurt people by how he had lived. Knowing all that changes how I read lines like: “I’m making my own narrative here and now … my performance” (42). When Broyard writes that what he likes about emergency departments is how they are “a continual improvisation” (57), we can now hear him projecting a quality of his own life.

Knowing what Gates discovered affects how we read the first line of the essay: “I want to begin by confessing that I’m an impostor” (33). We read differently Broyard’s desire expressed throughout the essay to be known. I appreciate how, for Gates and many others, Broyard’s life exemplifies a lie, and his book is tainted by that. My own relationship with Broyard is closer to narratives in which a lost child is treated kindly by a stranger who, the child discovers later, is a criminal. But what continues to count most for that child, now an adult, is the memory of the kindness that made such a consequential difference. Broyard helped me; he still does.

What remains for me—others may feel differently—is the agenda set by Broyard’s text. How is narrative medicine the work of forestalling the danger of illness that Broyard articulates: “When your soul leaves, the illness rushes in” (40). Although, what I would inscribe over hospital doors to remind everyone what is truly at stake is the converse: When illness rushes in, your soul leaves, unless someone helps you hold onto it. Broyard writes that once upon a time, priests “perhaps understood the scope of what you were saying” (42)—scope is the key word for me—and on his account, physicians inherit the possibility of filling that need. He speaks to their reluctance to do so. Narrative medicine, on the physician side, seems to be about learning how to encounter and to work with the scope of what ill people are often not yet able to say—the scope of the unsaid. What Broyard wants in a doctor is what I wanted during my illnesses: one who could “imagine the aloneness of the critically ill” (42). How could I repudiate an author who knows, and expresses, the aloneness I still felt so keenly in 1992, when I was I struggling to live with endless false positives in my follow-up examinations that perpetuated having cancer.

* * *

Broyard’s wife Alexandra, in her Prologue, describes him as a “superb storyteller”. Actually, Broyard doesn’t tell many stories in these writings. Arguably the only stories in “The Patient Examines the Doctor” involve Broyard’s confusion over which doctor’s office he’s in, and later, the physician disrupting the wedding that Broyard had arranged for a dying friend (51). This latter narration is properly a story, in the sense of beginning with a trouble—the need for the marriage under unusual circumstances—and then proceeding through escalating “complicating actions” (William Labov’s term): first the rabbi’s reluctance and then the physician’s unwarranted intrusion. Finally there is an evaluation, which makes the story into a fable of medical shortcoming: the physician first not knowing enough about the patient, and then acting disruptively, as actions based on too little knowledge inevitably end up being.

Such stories are exceptions to Broyard’s usual style which is to create settings that are complicated by imminent troubles—medical settings. What carries his narration are not subsequent events, but rather aphorisms, often expressing a desire for a relationship in which the doctor as other allows him to be … what illness compels him to seek to discover. Or, Broyard seeks a relationship that at least enables him to sustain his performance, because his self and what we can call his dignity depend on that performance being sustained. Broyard’s complaint, in one of the rare moments when he directly criticizes medicine, is that doctors “discourage our stories” (52). For me, now as much as in 1992, that message: Don’t let them discourage your story is crucial. Find your own way to “turn our lives into good or bad stories” (53), because although we have always needed to do that, throughout our lives, illness makes the need immediate, compelling, or in the word Susan Sontag preferred, necessary. If you’re lucky, someone trained in narrative medicine might be able to help, or at least not discourage you.

* * *

Broyard gives us a beautifully simple description of narrative medicine in his metaphor of the physician as landlord who takes seriously “how he could make the premises more livable” (43). Such a good doctor never forgets that the clinician’s routine is their patient’s crisis of a lifetime (43). I didn’t need Broyard to point out that disjunction to me, but he confirmed my sense that it’s a central barrier to the provision of what deserves to be called care.

More demanding is Broyard’s call for clinicians, especially but not exclusively physicians, to be comfortable with the ever-present reversal of perspectives: “he is my patient also and I have my diagnosis of him” (45; cf. 53). Doctors and nurses, in my experience, are seriously disturbed by the idea that their patients are watching them, noting, discussing. Even though the internet has facilitated people making public their appraisals of clinicians, I don’t see clinicians having gotten used to that. The clinical gaze still imagines itself as one-way. Broyard’s reversal—the patient is also examining the doctor—aspires to a mutuality I’d call dialogue: “There should be a place where our respective superiorities could meet and frolic together” (45). Is narrative medicine the creation of such spaces, striving to understanding what it is to meet and why Broyard chooses the verb frolic? What counter-narrative does that word express?

Broyard does not put all the weight on physicians; responsibility is always mutual. The patient’s responsibility is expressed in that great line, “I want to be a good story for him” (45). But then, clinicians must be ready to hear that story. More than ready: the clinician must know their life depends on hearing patients’ stories, because in that openness, “the doctor may talk himself back into loving his work” (57). Broyard’s recognition of necessary reciprocity remains vital thirty years later, because it remains unachieved. How can two people, clinician and patient (the ill person who is now in the clinic) help each other to talk themselves back into loving themselves, as their respective conditions have diminished them?

* * *

Reading Broyard today reminds me of what I have tried to do for half my life. His phrases became my constant sources of reorientation, whenever I lost the plot of the narrative I was making. He reminds me of what within myself I need to retain contact with, and who I write for: “I was not so much a patient,” Broyard says of his experience in an emergency department, “as a needy person coming in from the street” (57). That’s fundamental medicine: a person in need, coming in, finding not only treatment but hospitality. How can we hold onto the simplicity of that ideal?

Prefaces to a Study of Narrative Medicine

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.

Responding to Illness Narratives, 2022

This post is written directly to students in the narrative medicine seminar that I’m co-teaching, but I hope it may interest others. Since the late 1990s certainly a third of my publications have been about how to respond to first-person narratives of illness. The mid-term essay assignment in our seminar instructs students to write an “analytic” paper. That’s university broilerplate and not my chosen word. I would say: write an essay in which you struggle to find a way to respond to people struggling to tell stories about illness; how do you respond so as not to diminish either the storyteller or yourself? That’s also a way of phrasing the problem of clinical care.

I ask myself–and this question is already uncomfortable, or it should be–who does the author/storyteller want or expect me to be, and how far do I accept or refuse being positioned as that reader? To respond, we have to first have a sense of who responds; in Shakespeare’s repeated question, “Who’s there?” But that includes who the storyteller wants or needs me to be, wherever there is. It’s a dialogical question, in which identities are interdependent.

My own best short and generic answer–because each story demands a slightly different answer–is that I’m there to be a witness to testimony. Testimony is one genre of storytelling. Among its characteristics are claims, first, to truth learned through first-hand experience and, second, an often tacit understanding that those who hear this truth must respond to it, if they claim to be persons worth calling themselves moral. Conversely, or tautologically, I understand moral as hearing the testimony and, in whatever way, doing some measure of what it calls for.

My best short and generic answer to what I feel called upon to do in response to stories is to amplify them and connect them. I amplify stories by retelling them, albeit in fragmented form. I try to fragment the stories with as little damage as possible when I retell them, but stories, I believe, lend themselves to being retold; they even want retelling. I try to remember that I’m there to amplify the story, rather than the research stance that the story is there to be my data for analysis. One way to amplify stories is to connect them: to show convergences. Thus individual stories become what the biographer Robert Richardson, writing about William James’s “method” in Varieties of Religious Experience, called a chorus of voices. Each of James’s voices, by itself, tells a weird and suspect tale. But when these tales are connected, something undeniable emerges.

Amplifying and connecting is more modest than what I was trying to do in The Wounded Storyteller. There, I wanted to help people gain a greater reflective appreciation of the narrative resources they were having to work with when they told their stories. Types, including types of narratives, are on the one hand useful and even necessary to think with. On the other hand, they reduce the particularity of the individual instance to the generality of the type. Thinking in types rounds off the edges, and the edges are often where you find what most needs to be acknowledged, taken on board, responded to. Types are fine, until we reify them and forget that we ourselves created them to help us negotiate our own problems of living and working.

That’s a beginning, but let me go a bit further and offer two sets of questions. I was once talking to a colleague who kept using the word narratology. That word is used to cover multiple understandings, so I asked what he meant by it. He seemed a bit surprised but then said that narratology was interested in who’s trying to tell what story and what gets in their way. That might sound a bit short of most scholarly definitions, but sometimes greater utility is found in simplicity. Ill people, I’ve always argued, find others claiming to tell their story for them: medical others, family others, third parties in different capacities. An illness narrative has always seemed to me to be a work of reclaiming the right to tell it yourself. But a lot gets in the way of that reclaiming: other people’s expectations and feelings can get in the way, and a paucity of narrative resources can get in the way. Conventions of that about which people remain silent can get in the way, and what Anne Boyer calls “the din of breast cancer’s extraordinary production of language” also gets in the way–a din often has the function of keeping some things in silence. “I do not want to tell the story of cancer in the way that I have been taught to tell it,” Boyer writes. That’s a storyteller struggling with what gets in the way. The struggle to tell is itself a significant part of the story.

Those two questions about a storyteller–what story are they trying to tell, and what gets in their way–are also questions for the reader. What’s getting in my way of hearing the kind of story the storyteller needs to tell? Too much “narrative analysis” lacks reflection on how its method filters out what’s uncomfortable to hear, including how much of a struggle it is for the storyteller to tell, and the ways that their telling is, despite their best efforts, derailed by what does somehow stop them. What I believe most gets in the way of listening is our commitment to certain boundaries of our own involvement. We have to hear the story in a way that keeps those boundaries intact; otherwise, we’re not as nice people as we thought we were, or our profession isn’t as caring as we claim, or the system we work in is more violent and predatory.

My penultimate point in these notes–which are only suggestions about how think about a loosely bounded sort of story–is that I find it useful to keep in mind the two genres of storytelling that are most proximately antecedent to illness narratives: spiritual autobiographies and narratives of former slaves. Spiritual autobiographies go back to Augustine; among slavery narratives, I find the multiply revised autobiographies of Frederick Douglas to be most provocative. In both genres, the narrative arc moves from lack to radical change to the struggle to define and hold to a new sense of purpose. The lack may be literal enslavement or spiritual enslavement to false gods or illusions. The change may be emancipation or conversion to the true faith. The sense of purpose varies even more, but it usually includes a responsibility to those who have not undergone a similar change.

Let me emphasize here that I’m writing as a narratologist. That is, I’m not comparing different kinds of suffering that is evoked in these stories. I am comparing the narratives that storytellers find themselves first to be stuck with, as cultural resources and listener expectations, and then storytellers elaborate these received narrative forms, giving them new twists that enlarge their potential for what can be told. Frederick Douglas adds the twist of talking about having to resist telling in the “Plantation” mode that his Abolitionist sponsors wanted him to adopt; he sounds a lot like Anne Boyer, refusing to tell the story the way she had been taught to tell it. Narrative resources are people’s possibility, but never their limit.

What’s at issue in slavery narratives, spiritual autobiographies, and illness narratives is telling truths that are too often suppressed and repressed. The task of responding is to join the chorus of voices that recognizes this truth and calls for responding to it, which may mean changing how we think, or how we organize institutions, or what we assent to or refuse. In spiritual autobiographies, the truth is of a self that is unable to know itself until it finds a new alignment with the divine or spiritual. In slavery narratives, the truth is the sheer brutality of a system of extracting value from human bodies by dehumanizing those bodies. Illness narratives mix both truths of selves and system, in varying combinations.

Finally, when I hear a story, I remind myself to think of Walk Whitman’s line “I contain multitudes”, recently taken up by Bob Dylan, who had earned being able to repeat it as his own, containing Walt Whitman among his multitudes. Mikhail Bakhtin’s term is polyphonic: each voice contains multiple voices. Anne Boyer’s voice contains Audre Lorde’s, and her voice contains … and so on. What other voices does anyone’s voice contain? How is any single voice already a chorus of voices? How, in responding to the voice of the storyteller, do we join that chorus? Because that what the voice asks, no less.

Reassembling the Self

I want to talk about three quotations that I admire and consider right in one sense, but that have implications that raise problems. Pursuing these problems leads, eventually, back to illness narratives, why they seem necessary, and at least some of the problems of both writing and receiving such narrations. I am trying to work something out for myself and for those interested in following the process—I don’t begin from a completed thought, and I what I get to…you can judge for yourselves. I apologize in advance that this process is going to involve referring to a lot of authors; this is one of my more scholastic posts. I think that way, when I have to.

My title adapts Bruno Latour’s Reassembling the Social (2005), in which he argues that “the social” is not a thing or substance. Instead, the social refers to multiple processes of reassembling: putting together and holding together together different sorts of groups and affiliations: families, clans, clubs, congregations, and nations. Human life consists in perpetually claiming and reclaiming the social; it takes work, in Harold Garfinkel’s sense, but I won’t pursue the genealogy of Latour’s useful conceptualization. I want to think of selves the way he imagines the social, as on-going works of reassembling.

My first quotation is the title of Judith Butler’s 2005 book, Giving an Account of Oneself. Butler doesn’t begin with the idea of the self; she doesn’t seem much interested in the self until fairly late in the book, when she’s talking about Foucault. Butler’s discussion proceeds by nuances. I want to say something simpler. My problem with this phrase, giving an account of oneself, is that it implies there already is something called a self that “one”—you and I, each of us—is in at least tenuous possession of, and we then give accounts of it. At least that’s how I think many people would hear Butler’s title, because it’s how many people experience themselves, as having a self. We readily observe people making frequent use of reflexive pronouns and stock phrases that presuppose having a self of one’s own.

I want to reverse Butler’s title phrase. I want to consider how giving various accounts is the work of claiming a sort of self, or more radically, bringing a self into existence, albeit an existence that is never more than processes, or work, of perpetual reassembling. Foucault remains behind what I’m saying: self-claiming subjects must use discourses that are available according to their historical positioning. But I’m more influenced by Erving Goffman, who never chose to clarify just what he meant by the self that is presented in everyday life. 

Goffman’s self is constituted in reciprocally dependent acts of displaying demeanour to others and claiming others’ deference. Demeanour comprises acts that include grooming, appropriate manners, wearing uniforms and insignia, and utilizing distinctive speech. My writing as I have been doing, casually assuming that everyone knows who Butler, Foucault, and Goffman are, is work of scholastic demeanour. Writing this way displays me as a certain sort of person, who knows how to throw those names around and expects others to recognize what that ability entitles me to, which is their deference. 

Deference comprises acts in which we give others their due, recognizing what their demeanour entitles them to. At some point, demeanour and deference become difficult to disentangle; each depends on the other. For my purposes, displaying demeanour and claiming deference are ground-zero of reassembling the self. The original accounts of the self are presented in the media of bodily posture, how the arms and legs are positioned and moved, and perhaps most of all, facial expression. My key point is that giving these originally embodied accounts, later elaborated in verbal accounts, is the initial assembling and then perpetual reassembling of the self. What we talk about and what we experience as our self comes to be and is maintained in works of reassembling. Those works include giving what Butler, following numerous others, calls accounts.

The second quotation is one I read only recently, although I now find out that it’s well enough known to be available on a tee-shirt, if you want to get one. In a 1961 interview (the full text of which I have not been able to recover; it was with Tom Driver and appeared in The Columbia Forum, 4:3, Summer, 21-24), Samuel Beckett said: “To find a form that accommodates the mess, that is the task of the artist now”. Here I’ll finally get to illness narratives. The problem of narrating an illness is that mess is central to what we’d call experiencing illness, whereas, narrative cleans up by ordering mess in multiple ways: temporal, spatial, causal, moral, existential. But—to give form to the mess is to lose what’s messy, which is to lose the essence of the experience being represented—to lose its truth. That problem of ordering the mess is shared by healthcare workers and ill people, mutually. Among various healthcare workers, I’ll focus on, or pick on, physicians. 

For me—on my account—physicians solve the problem of the mess not wisely but too well; their institutional placement requires that of them, often at considerable cost to themselves. Physicians get paid to reduce the mess to diagnoses, treatment plans, standards of care, and other textual devices that do give the mess a form. But in cleaning up the mess, physicians (as the well if not best paid front-persons for the medical-industrial complex) frustrate their patients, who feel the denial of what makes their experience so difficult, which is all the mess that cannot be cleaned up, that falls outside medical narrations and finds no acknowledgement in institutional medicine. For one expression of patients’ alienation, here’s Anne Boyer writing about surviving cancer: “and if I live another forty-one years to avenge what has happened it still won’t be enough” (The Undying, 167).  [Guilty note to self: does The Wounded Storyteller go too far, without sufficient self-qualifying cautions, in cleaning up the mess of how illness is narrated? Does healthcare research generally follow medicine too far in cleaning up whatever mess is the subject of its research, reducing that mess to the coherence of so many themes, or causal associations, or types of whatever as required by granting councils and scholarly journals?]

Here’s another understanding of the theme of this series of blogs: narrative medicine seeks to acknowledge the mess and give it a recognizable place within healthcare practice, an honoured place. Narrative medicine seeks to empower ill people to express the messiness of their lives, without having to give that form. Narrative medicine seeks to give healthcare workers the multiple capacities needed to acknowledge their own mess and even go so far as to share its anguish with patients. That’s a big ask. 

Here’s a quotation to place in juxtaposition with Beckett. “The common struggle gets pushed through the sieve of what forms we have to make its account, and before you know it, the wide and shared suffering of this world is narrowed and gossamer, as thin as silk and looking as special as the language it takes to tell it” (Anne Boyer, The Undying, p. 129). Beckett’s principal solution to the problem he expresses is what we now call theatre of the absurd, exemplified in his greatest hit, Waiting for Godot. It’s a theatrical form that calls attention to life’s more essential formlessness, written in language that continually deconstructs its referential capacity. I don’t think it’s right to call The Undying narrative-of-the-absurd, but Boyer is always aware of the sieve that she’s pushing her experiences through—both the absolute necessity and the irreparable danger of that sieve. Boyer’s sieve is a neat metaphor for what Foucault described as the effects of discourses. A discourse (medical, spiritual; generally institutionally backed for Foucault) is a sieve, and discourses become dangerous to the extent people treat what the sieve filters out as if it didn’t exist, or at least didn’t matter. The work I’d call critical is reclaiming recognition of what preferred sieves filter out.

My third quotation is from Dante, near the end of the Purgatorio, after the poet/pilgrim has climbed the mountain and been at least provisionally cleansed of his sins (he will have to return later, after his death, for full purgation). He encounters Beatrice, who instigated his journey to save his soul, and she prescribes the work he must do upon his return to life, as witness: “Once back there, make yourself write what you see” (Mary Jo Bang, translation, XXXII, 105). That is the self-assigned task of the writer of an illness narrative: once back in a condition of sufficient health, make yourself write what you have seen. 

I understand the task that Beatrice assigns Dante as having two complementary goals: first, he must write so that he continues to live with the memory of a journey that he must work to hold in memory, if it is to save his soul. Second, by Dante’s telling what he has seen, others might share this journey and participate in its effect. In my preferred language, The Divine Comedy is a work of reassembling the soul: in reading it and living with it, we acquire what Dante seems to assume is already there by divine gift, whatever is called soul. Going through Purgatory is the ultimate version of giving an account of oneself/soul. For Dante, I think, the soul that already is is purified on the mountain; for me, by going up the mountain, the traveler becomes a soul. I don’t think Dante would find that right, but I live in different times from his, with different presuppositions.

Narrative medicine, in the account I’m trying to cobble together from these fragments, is the work of finding in the scene of illness, people’s capacity for reassembling their selves in ways we can begin by called responsible, in the sense of reflectively chosen. Student doctors are given white coats, and patients are told to put on hospital gowns. Putting those costumes creates the risk of irresponsible, or at least a-responsible, accounts of self. The costumes risk being inauthentic, in what I think Sartre’s use of that word implies: those clothes mark acceptance of a system of demeanour and deference; or in Foucault’s terms, we’re inserting ourselves into a discourse, and assuming that discourse as our mode of speech. But what we put on is from elsewhere, a default solution and thus a-responsible, which is how institutions want people, either as workers or clients: docile bodies, in Foucault’s sense.

But Foucault always recalls that we are never outside discourses, never auto-nomos in what we think, speak, or claim. Any authenticity is a mirage, always receding. There are only degrees of inauthenticity, and that’s how life is, its tension or dilemma. Or, instead of Foucault, read Sophocles, especially Antigone. Whose dress does Rosalind puts back on at the end of As You Like It? At the end of Twelfth Night, there’s a problem finding Viola’s proper clothes; that is problem.

The problem that Butler, Beckett, and Dante all point to—with a supporting cast including Goffman, Anne Boyer, and Foucault—is that narrations can and will reassemble a self, but what self is that? Is it the self we have defaulted into, or can it be a self worth calling, in the most tenuous and even contradictory way, never entirely our own, never fully chosen but aspiring to being, responsible?

Audre Lorde, Thirty Years Later

Our seminar readings this week include Audre Lorde’s The Cancer Journals. I’ve written about that book many times. Here are my current thoughts.

I feel like writing “Dear Audre”, because her/your work speaks to me directly, as a dialogue. Lorde’s writing makes Anatole Broyard’s Intoxicated by My Illness seem like a performance—a brilliant performance and one he desperately needs to believe it—but still a performance. Broyard needs his audience in a way that Lorde doesn’t. She’d like to move us, sometimes, and other times to persuade us, but she doesn’t need us. She knows who she is in a way that leaves me wondering whether Broyard really does. He knows who he’d like to be, and he mostly pulled off being that, but the quality of work in his writing differs from hers.

To go back to the beginning of my relationship to this book, simply getting a copy of The Cancer Journals wasn’t straightforward in the early 90s. I’d heard about the book a long time before I found a small feminist independent bookstore in downtown Calgary that would order it for me. The publisher, spinsters/aunt lute, had limited distribution. Holding a copy, when it finally arrived, felt like a hard-won treasure. 

My reading was continually interrupted by my compulsion to run to wherever my wife was and read a passage to her. She’d stop and look at me, hearing it, and we both felt like somebody out there had experienced cancer the way we had. That connection is what illness narratives, memoirs, are.

The line that spoke to us first was: “Your silence will not protect you” (20). There had been so many silences during my cancer, and even more during the months between my mother-in-law coming out of her last remission and her death. So many silences, and far from anyone being protected, relationships were so fractured by those silences. Some finally were repaired, others never were or have been. On our account Lorde could have said: Your silence will corrupt you, impairing your life worse than the effects of disease itself.

The work of memoir truly is “reclaiming of that language which has been made to work against us” (22). Has anyone since Lorde ever claimed, so compellingly, her right to speak, to fill the silences with her need to use language to speak of what happens truly? The question she raises is crucial: what are the languages that work against ill persons and their families? We need a list, possibly beginning with medical languages, then extending to all sorts of evocations of health.

When I read The Cancer Journals, the memoir I had written, At the Will of the Body, had had some success (if not the sales that the publisher imagined in his dreams), but I was unsure what followed. Alongside what Lorde said about silence, what she said about work was crucial to me. Her most non-rhetorical question, “because I am myself, a black woman warrior poet doing my work, come to ask you, are you doing yours?” (21), went straight into me. Thirty years later, it’s what I still ask myself: am I doing the work that I, given who I am, can do?

Cancer on Lorde’s account is not an experience, as in “the patient experience”. It’s a calling to a work. Are you doing yours? Albert Schweitzer wrote, after his own critical illness following World War I, of the fellowship of those who bear the mark of pain. Lorde would, I think, have understood that phrase, and Schweitzer would have understood what she meant by work.

Broyard observes that doctors discourage our stories. Lorde would the expand the scope and raise the intensity of that. The point of her most specific stories—especially the nurse who demands she wear a prosthesis, a “form” (58-9)—is that medicine demands that patients participate in enacting a particular narrative, which I later called the restitution narrative. For Lorde, that narrative legitimates the demand to consider breast cancer as a problem of public appearance, and one that is readily solved with the proper prosthesis. “Her message was, you are just as good as you were before, because you look exactly the same” (42). That’s written about the Reach for Recovery volunteer, whom Lorde sort of likes personally, but who represents a toxic narrative. The nurse is more explicit when she tells Lorde, “Otherwise [not wearing a form] is bad for the morale of the office” (59). Never have I read such a clear example of how healthcare workers impose their needs on patients, redefining those as the patients’ needs. The nurse’s speech is language being made to work against Lorde, from which she needs to reclaim a language of her own. I have sociological reservations how far any language can ever be ‘our own’, but Lorde sweeps those aside; she compels me to believe she speaks for herself.

What I’ve said–what she says–crystallizes a tension that needs to be kept alive when we place illness narratives under the rubric of medical humanities or some such. What’s the work that such rubrics imply? Reading Lorde, the work seems to be this: How do we help ill people’s narratives do their work of reclaiming experience in the person’s own terms, which is often reclaiming from institutional medicine? I imagine how Lorde might have spoken at some of the healthcare conferences where I’ve given plenary lectures. I feel the guilt of wondering whether I was doing my work.

How far is it possible, I’ve asked myself for years in multiple contexts, for healthcare to recognize the dimension of illness that lies beyond the disease, what Lorde calls “the whole terrible meaning of mortality as both weapon and power” (53). Doctors don’t just discourage stories. The whole healthcare complex is organized to blunt the weapon and power that Lorde is pointing toward. That blunting is enacted in the nurse’s demand to wear a prosthesis. It’s the point of waiting rooms: not only to optimize physicians’ time by having patients always ready, but to induce passivity in those patients by wearing them down, teaching them to devalue their time, to be the supporting actors who sometimes come on stage to be a foil to the lead, but mostly sit waiting in the wings.

Lorde’s line, “In order to keep myself available to myself” (65) is for me a found version of a Zen koan. What does it mean, to be available to yourself? Lorde recognizes this complexity early in her book when she asks herself: “And which me was that again anyway?” (24). There is never a singular self, transparently self-knowing. But, that doesn’t mean that people should cease asking whether they are available to themselves, and what is the currency of that availability? For Lorde, it seems to be a currency of friendship in life as she lives it among women, and writing, as her work. I hope that circle can then expand to others of us who ask her questions, seeking to participate in her work.

Here’s a tentative definition of the work of memoir: As the author makes themselves available to themselves, the effect is to allow readers greater availability to themselves. In hearing Lorde’s stories, we can reclaim our own, as weapons that are a source of power. Lorde’s chosen words, weapons and power, would not be my choice of metaphors; for me, weapons especially have too many other connotations and memories. But Lorde reminds me, all these decades later, what it was about, what the work should be, and what remains.

On Scarcity

I want to add a brief addendum to my last post, which was itself an addendum to my 2013 article on the importance of social theory for medical education. At the end of that article, I describe what I call the scarcity loop. By that I mean an assumption or presupposition that underlies so much thinking about healthcare policy, limiting what is able to be thought. In briefest terms, the scarcity loop imposes on our thinking the parameter that there is never enough: never enough money in the healthcare budget, never enough space in the hospital, never enough time in clinical education curricula or in encounters between clinicians and patients. Thinking that proceeds on the basis of the scarcity loop is always already adversarial: the individual healthcare worker is pitted against the relevant scarcities that delimit possibilities of offering care; the patient confronts a system that constantly betrays its own promises of “the best possible care” and continually appeals to the scarcity imposed on it.

The scarcity loop is especially relevant to narrative medicine (or, so-called “narrative medicine”, remembering I use this as a term of convenience). The prime objection to narrative medicine is that it demands time that is already in too-short supply: either curricular time or clinical time. Narrative medicine is framed, as a physician once complained to me (or maybe he was being ironic) as “one more thing” to do. That phrase itself reflects the scarcity loop: clinicians are conditioned to see that work as a checklist of items to be ticked off before the day or night’s work is … never done but accountably completed. Patients are fragmented into to-do lists–I remember one medical resident showing me his daily matrix of assigned patients and tasks to be completed. People who, as patients, are subjected to this fragmentation internalize it. Being ill turns into regimes of self-care that fragment one’s sense of self and its possibility.

Here’s another way to understand narrative medicine: thinking, being, experiencing outside the scarcity loop; seeing the moment as sufficient. Eventually, knowing the moment as even abundant, although that takes time, and I’m certainly not there myself.

How to do this? How to make the refusal of scarcity one’s practice? I suggest beginning small, with the least possible demand. When I used to be in a teaching relationship with clinicians, I suggested beginning by taking nothing more than a few seconds with only one or two patients a day, and at some point during the clinical encounter, simply be silent, doing nothing except being with that patient. And then let those moments, starting with literally 10 seconds a day, grow. We know from studies of conversation that a one or two second pause is hearable, noticeable as a pause; the other person expects talk to continue, and in even a couple of seconds, reflection begins on why the other is silent, what’s going on? Here we get to the part that’s beyond language: projecting your sense of being with the other, so that the other person feels it. I don’t think that’s complicated. I think it just happens; we’re wired for it to happen. But it has to be willed to happen, sought, desired.

In my imagination, narrative medicine as a clinical practice begins before any narrative in the sense of narration in symbolic form. It begins in silence. It begins the clinician sharing silence and so cueing the patient to experience their own silence, which the organization of hospital and clinic care discourages with its pace and noisiness.

The conditions that the scarcity loop responds to are real, and recognizing that reality is crucial to getting out of the loop as a limited way of thinking. There really isn’t enough money, or space, or time, but conditions of lack are made worse in their consequences when the “best possible care” mantra requires not acknowledging that what’s on offer isn’t the best. What I’m recommending are moments that cannot make those real scarcities go away or become less harmful, but these moments of intentional silence can open up the totalization of the scarcity loop, the sense that’s all there is or can be, tasks without end. Fracturing the totalization of a way of thinking enables dealing with it productively, instead of perpetual defensive reactions.

That sounds awfully advice-giving, so please understand that I write this to give advice to myself. I’m at a moment in my life when I’m caught in my own scarcity loop. It’s Sunday, and tomorrow, when offices open, I have more to do that I’m sure I can get done; demands exceed supply, which defines scarcity. Those demands are real, as is the finite nature of time. But on Sunday, I’m trying to convince myself that I do have a choice how I experience Monday’s demands. Perhaps by writing this, I can convince myself. If I’m a little bit convinced, maybe I can do my tasks in ways that don’t enlist others in my sense of scarcity. That’s what narrative medicine seeks to do, either in the classroom or the clinic: refuse to draw others into the scarcity loop; instead, open a space outside it. Breathe, and feel no need to do anything.

Narrative Medicine as Power

In the seminar that I’m co-teaching, we’re reading an article I published in 2013, “From sick role to practices of health and illness” (J of Med Education, 47:18-25). It’s more than a decade since I actually wrote that article, and my moment of satisfaction at how well I think it holds up was superseded immediately by a sense of fear at how well it’s held up. The article starts in an academically neutral way, reviewing for non-social scientists the core ideas of four theorists whose work informs healthcare research: Talcott Parsons, Harold Garfinkel, Michel Foucault, and Pierre Bourdieu. I offer a dense but, I hope, accessible version of their ideas, in briefest form. Then things get scary, at least for me rereading.

I frame the discussion within a definition of theory as the work of relating the observation of particular scenes of human activity to what Max Weber called the “fate of our times”. Weber coined that phrase at the end of World War I; to have lived through that war was the fate of his times. Creatures live, inevitably, in times that are fateful, and I understand a crucial task of sociology–maybe the crucial task–to be helping people to reflect upon the fate of their times. That’s one reason why most people instinctively pull away from sociology: one effect of the period of modernity is thinking of ourselves as self-determining, not the playthings of some gods, not subject to history that is fateful. One description of the fate of the present times, the 21st century, is that people have had to go, quickly, from the post World War II luxury of believing they could, within an opportunity structure, live lives of their own choosing, to understanding that a terrorist attack, or a global pandemic, or maybe a war can come along and severely constrain those choices. And as I write, we’re nervously watching a war that’s still elsewhere, and wondering how many people will be caught up in it, at what cost to themselves. None of us–us moderns–likes to think of ourselves as subject to the fate of our times, but we need to live with what we don’t like; it just is.

Without belabouring that further, let me offer three points of recognition about narrative medicine, as I think of it. And in thinking of it, I’m accepting the term narrative medicine even though I would probably have chosen to call it something else. No label is perfect, and maybe a usefulness of the narrative-medicine label is that we’re constantly called to reflect on what’s inadequate about it, what it biases toward and against.

First, medical/clinical settings are sites of narrative contest. Here I need to specify what I mean by narrative. (1) Narrative involves privileged and dis-privileged forms of narration. The readiest example of privileged narration is medical trainees learning the rhetorical format of case presentation in rounds: what to include or leave out, passive voice construction, and so on. Most settings have expected forms of narration, and settings differ in rigidity/flexibility in what forms of narration are expected and permitted. (2) Narratives are premised on, and then reinforce, what Pierre Bourdieu calls Illusio, which is who takes what seriously. That again is about what’s included or excluded; inclusions and exclusions express what counts and what ought to count for both teller and listener. Proper, fully accredited participants in a setting are those who know what counts and who act in ways that reinforce that counting, to the exclusion of whatever else. (3) Narratives involve casting of character types, with normative evaluations of different types; that is, good guys, bad guys, and bit players. These types subdivide; for example, trainees may be potential good guys who are, at present, error prone, or, family members who may be well-intentioned but ill informed. In this casting, the nature of narratives is to understand the world as antagonistic relations. That generates drama in storytelling, but it generates conflict as those stories are enacted in life. Finally, (4) any narrative points toward and presumes some “promised end”, to use a phrase at the end of King Lear, when Kent asks, “Is this the promised end?” He means the story he believed in and committed his life to was not supposed to end as it is ending. Being caught up in a narrative is a commitment to a promised end, although that may be more or less articulated. One reason for clinicians not asking patients or families what their goals of treatment are is the unreflected-upon need to avoid making explicit a discrepancy between different players’ sense of the right promised end. Better not to ask that to have to deal with what you don’t want to hear–that’s the line rejected by narrative medicine.

Second, narrative medicine is about power. It seeks a redistribution in relations of power. I’m drawing on both Foucault and Bourdieu here, as their ideas are presented in my 2003 article. At the core of narrative medicine is the claim that stories previously regarded as not counting for medical/clinical purposes are actually of crucial importance in that work. Thus, the ability to tell a different kind of story, a previously untellable and unheard story, and the ability to hear and respond to that story, suddenly has value as forms of capital. That involves a new distribution of capital between the patient as storyteller and the clinician as listener, and a new distribution of power among clinicians, giving listening a new value. Bourdieu’s metaphor of capital is appropriate, because in medical/clinical settings as in law firms, time is money, down to the minute. Allocating time–curricular time in clinical education, clinical time in healthcare practice, research time–is to take time away. There is a zero-sum aspect to this contest, which is what power is, as it is lived as practice.

Third, I get back to the fate of our times. The scariest part of my 2003 article, reading it today, is when I quote Salmon Rushdie, from his 2006 novel, Shalimar the Clown. Rushdie writes: “Everywhere is now part of everywhere else. Our lives, our stories, flowed into one another’s, were no longer our own, individual, discrete. This unsettled people. There were collisions and explosions” (p. 37). That was before right-wing populist politics, before “freedom” convoys and protests, before the insurrection of January 6 in Washington, D.C.

The fate of our times, I would now say, is radical disjunctions in what different groups count as reality–especially what different groups count as trustworthy depictions of what’s real, with the “group” defined by who believes in that reality. This has at least four aspects: (1) intensified individual commitments to particular shared narratives as the foundation of personal identity; (2) reduction of narratives to slogans beyond which people feel no responsibility to think, only adherence by repetition is called for; (3) in the conflict of narratives, the increasing impossibility of any meta-position that might give both sides common ground for dialogue; and (4) to return to Weber, increasing reliance on what he called the “ethic of conviction”, that is, ethical justification of any act based on whether it supports the end demanded by a certain conviction. In the ethic of conviction, collateral damage is perfectly acceptable, even expected; that’s the logic of terrorism.

If you think these points don’t apply to medicine, recall the recent scenes of protests outside hospitals, even including assaults on healthcare workers. In some places in Canada, healthcare workers have been advised not to wear identifiable work uniforms while in public. How could people act like that? Consider my four points, above.

Narrative medicine presents itself both as taking a side in these conflicts, and also as a product of the times that give rise to such conflicts. A very great deal is at stake, and no particular end is promised.

Returning to Illness Narratives

The first iteration of this blog ended an embarrassingly long time ago, two year plus. My focus had been on how to do “vulnerable reading”, with Shakespeare as my exemplary text. At least for me, that series of postings was useful. I quit writing the blog when I began writing the book that is scheduled to be published in August by Oxford, as one title in their new “My Reading” series: King Lear: Shakespeare’s Dark Consolations. I’m now doing final corrections on the galley proofs, which has the effect of making Shakespeare the last thing I want to write about, but … he’s become part of my thinking.

The occasion of the series of blogs that I now start is my participation with my colleague Danielle Spencer teaching the seminar on narratives of illness and disability in Columbia University’s graduate program in Narrative Medicine. I have had various involvements with the program since Rita Charon initiated it, and it’s wonderful to have an opportunity to co-teach this seminar, especially to work with Danielle. But pretty obviously, that means reengaging with writing that I have, mostly kind of, stayed away from for the last few years.

These blog postings will be directed specifically to students in the Columbia seminar and will, after today, refer to reading we’re doing, but I want to write in a way that I hope will interest other readers. The word challenge has become inflated in overuse, but deciding to do the course is a challenge for me. One level of this challenge is whether I still–twenty-seven years after writing The Wounded Storyteller–have something to say about narratives written by people who are a generation younger than I am. Another level of challenge is what first-person stories always confront us with: What’s our tolerance for staying the room, continuing to listen, and opening ourselves to what we often don’t want to hear, because it threatens us. If you don’t feel threatened when you read an illness narrative, either you or the writer isn’t doing their job, and I tend to think it’s me, the reader, who’s failing.

When I began reading illness narratives after my own critical illnesses were (mostly) resolved, the threat in what they described–that bodies unexpectedly and inexplicably fall apart, people have to endure multiple sufferings, many die, and even for those who live on, survivorship is complicated–that threat felt to be a kind of homeopathic remedy. I already felt so threatened that someone else’s trouble helped me get on with my life. In the word I’ve used a lot in the last years, the writers of illness narratives became my companions; we were in this together. Some I eventually met or corresponded with; others died or dropped off my radar. But in their troubles I found ways through my troubles, or at least companionship in troubles there is no way through.

I return to illness narratives with those memories, which may also be expectations, but also as someone who has enjoyed a long period of remarkably (given my age) good health. The metaphor of going home seems inescapable: reading these books is like revisiting a place I once lived and knew well, a place that formed who I am today, but a place I haven’t visited in some years, and it has changed as much as I have. So the challenge is: in what sense is this still home, or where else is it, for me now; what work do I have to do here?

Who’s there? is the famous first line of Hamlet, and it’s a question that characters in King Lear keep asking; it becomes a refrain. In context, speakers of that question literally can’t see who approaches, but that’s the superficial occasion of the question. Characters realize, more or less, that they don’t know each other, and the most interesting characters realize their own uncertainty about who they are themselves. When Lear’s world is falling apart, he cries out: “Does any here know me? This is not Lear. / Does Lear walk thus? Speak thus? Where are his eyes?” (1.4.199-201, RSC edition). When I read illness narratives today, that’s the question I hear the writer asking, and it’s the question that the narrative calls me, as a reader, to ask about myself.

Who’s there, both as the writer and as the reader–that’s the first question. The second question is how we need each other. Writers, whether writing in a position of current illness, or tenuous survivorship, or anticipation of dying, try to find, in the words, who they are. Reading these stories, readers are called to ask who they are. Zen master Dogēn’s words describe the relation well:

“To study the Buddha Way is to study the self;

to study the self is to forget the self;

to forget the self is to be confirmed by the ten thousand things.”

To study–in a zen sense of engagement–your own illness as a writer, or to study an illness narrative as a reader, is to see yourself looking back at you. Writers see themselves in the words they offer to readers; readers see themselves as they recognize the parameters of how they respond to these words–what response each is capable of. Writers and readers are each is asking, from different but mutually dependent perspectives, Who’s there?

When Lear asks, “Who is it that can tell me who I am?” (1.4.203), the Fool answers: “Lear’s shadow?” That, I believe is the fear of the ill person: am I the shadow of who I was? And it is the challenge to the reader: in my response to this suffering Other, am I a shadow of the person who could respond fully, openly, holding nothing back, defending nothing.

Far be it from me to offer a gloss on Dogēn’s last line, but pretty clearly it recommends that the self can find itself only outside itself, “ten thousand things” being the figure of speech denoting all material presence, without distinction. To write an illness narrative is to bring into being a new thing, call it the ten thousand and first thing. The appropriate zen response to such creation is to bow; how do we read as an act of bowing? To read an illness narrative asks us to give up a sense of threat and feel confirmed, but that’s an immediately inadequate verb, because what is confirmed is that there is no subject to be confirmed. There are only so many things, now present, moving toward absence that is a form of return.

Just as we speak of the fog of war, we should never just say illness, but always instead the fog of illness. We–clinicians, family members, those who are ill, those who hear and read these stories–are all in that fog. We ask, “Who’s there?” and in that question, we always ask about at least two.

Locked Down With Lear

About six weeks has gone by since my last posting, and that’s not the result of my being involved in some big project–quite the contrary. My silence, as I reflect on it, is one of the effects of prolonged withdrawal from face-to-face encounters. I referee journal submissions, I read galley proofs of my own articles, I exchange messages with friends and colleagues. I still engage, but except with my wife and the occasional grocery clerk, it’s all mediated engagement. And I’m realizing how, after some period of almost entirely mediated engagement with other people, some part of me withers, goes into hibernation, whatever metaphor you like.

I’m at one end of a continuum. At the other end are friends whose work has intensified due to Covid; they’re hyper-engaged and suffering that overload. To them, my problems are definitely first-world, or what we might now call virtual-world. So here I am, reestablishing connections but virtually, in this mediated medium.

Who I’m locked down with is Lear, of King Lear. It’s a story about the effects of having really, seriously bad retirement planning; a cautionary tale. Lear consigns his care to two of his daughters, Goneril and Regan. They don’t love him. The daughter who does love him, Cordelia, he exiles for failing to profess how much she loves him. One of Hamlet’s first lines, spoken to his mother and referring to his outward displays of grief for his father, is: “‘Seems’, madam–nay it is, I know not ‘seems'”. It’s one of the most prevalent themes in Shakespeare: the gap between speech and being, language and reality, show and sincerity revealed in action. Characters we recognize as good know not ‘seems’. Cordelia knows not “seems”, but Lear is captivated by flowery language.

When I think about Goneril and Regan with respect to my father, who will be 101 in the next few days, I compare them less to people and more to the institutions that promised in various ways to support him, but when that support is needed, the strictest contractual conditions apply to what’s provided. Parts of that dilemma are distinctly American: how in the US healthcare system, insurance eligibility directs clinical judgment of need. That reversal of priorities has a corrosive, demoralizing effect on healthcare workers who spend their days increasingly taking for granted that way of seeing, as a professional, the patient before you. But we can’t make the issue distinct to the US. I think, with horror, of what the Canadian Forces found in nursing homes after Covid had decimated staffing and the army had to be called in to care for residents. The soldiers had the decency to be appalled. There were detailed stories in the papers about the degradation of those nursing home residents, but since then, nobody is coming forward with plans to change how those homes are run, and how they’re financed. Albeit, they have many fewer residents now.

But with Shakespeare, the story always has another side to it. When Goneril first tells Lear that his knights are wrecking her house–“By day and night he wrongs me: every hour // He flashes into one gross crime or other // That sets us all at odds.”–she’s singing a tune I recognize. In Peter Brook’s landmark 1962 production, the knights literally bust up the furniture; that’s a fair interpretation of the play. One of the foremost tasks in coordinating the many people who make my father’s life possible is not letting him set us at odds with each other–because our being at odds is a bigger risk to my father than Covid. The blunt honesty of King Lear is that Lear does set people at odds with each other. We don’t want to acknowledge that about dependent people, but a vulnerable reading of King Lear allows us to say what can be unspeakable.

Up to a certain point in King Lear, many adult children can feel sympathy for Goneril. The point when that sympathy flips is probably when Lear goes out into the storm, which is the beginning of his madness. But I note, Lear’s daughters do not force him out into the storm. He initiates leaving; it’s a continuation of his rage, which is not unjustified but is disturbing in its violence. His daughters bar the door after he’s left, but it’s Lear who has called for his horses and ridden away. I can’t go along with critics who maintain that in Lear, more than maybe any other of Shakespeare’s plays, the characters are all either very good or very bad.

Shakespeare always leaves you to fill in the backstory, or most of it anyway. In Jane Smiley’s fine novel A Thousand Acres, which sets Lear in Iowa, she makes the Goneril character not just the protagonist but a sort of hero. Smiley’s Lear, Larry, is definitely more sinning than sinned against. Smiley may fill in too much–that’s what a long novel does. But she sends me back to Lear recognizing how little the play actually tells me, and how much I fill in based on what happens later. By the play’s end, the characters are either very good or very bad, but we have to fill in how they got there.

So we go on, with Covid, with our loved ones, and with those we do business with, as we try to distinguish their “seems” from what we can count of them to do. One way to end this rambling reflection is by quoting an article I have in press about the philosopher Simon Critchley. I quote Critchley quoting Samuel Beckett: “I resume, so long as, so long as, let me see, so long as one, so long as he, ah fuck all that, so long as this, then that, agreed, that’s good enough, I nearly got stuck.” It’s so easy to get stuck these days. Thank you, Shakespeare; thank you, Samuel Beckett; thank you, virtually present readers.

Note: I have a chapter, “Socio-narratology and the clinical encounter between human beings”, in Frances Rapport and Jeffrey Braithwaite, editors, Transforming Healthcare with Qualitative Research, just published by Routledge (the copyright date is listed as 2021, so this defines hyper-new). If anyone wants a copy, please send me an email.