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.

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