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.

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