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? 

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