It’s true, as Daudet says, that words aren’t of “use” to the ill person: They can’t capture pain. But words help us in a subtler way—they save us from the isolation of illness and mortality. I don’t mean anything as reassuring as “they make us less alone” (they don’t, really). But they do give form to an experience that is otherwise shapeless, and in so doing they make us less estranged from ourselves. Writing shapes us even as we try to shape it. In writing about illness I found myself changing—I was trying to capture the experience, but it was capturing me. I no longer felt that “I wasn’t myself” or that I wasn’t a person. I felt I had become, instead, a person who happened to be sick, with news to bring from what Susan Sontag called “the kingdom of the sick” in her essay Illness As Metaphor. It is news we need: we will all hold “dual citizenship,” she points out, in the realms of the well and the unwell.
Life is an ongoing detonation of the idea that we have control. My inability to voice what I couldn’t understand, my search for words that weren’t there, was a kind of schooling. In one essay I wrote, “The sick body is always having speech seized from it”—meaning by others who don’t listen. But the sick body also seizes speech from it itself. Seizing speech back, even fragmented, impoverished, “useless” speech—well, that remains the task of the writer.