D. T. Max on the Mysteries of Sickness and Death

At the October 2014 edition of Narrative Medicine Rounds, which drew more than 100 people, New Yorker staff writer and author D. T. Max discussed his book The Family That Couldn’t Sleep (Random House, 2006), the title of which refers to the effect Fatal Familial Insomnia, a genetic prion disease, has had on a family in Italy for generations.

In her introduction of Max, Danielle Spencer, faculty for Columbia University’s Narrative Medicine master’s program, noted, “In our work in narrative medicine, we seek to do what Daniel describes in The Family That Couldn’t Sleep – face our shared mortality and to improve the capacity of those who care for the sick to face it as well.”

Max confirmed, “Narrative medicine is sort of what I’ve been trying to do all along. Admittedly I didn’t have the degree to do it. But that’s what The Family that Couldn’t Sleep is really about. It’s about an attempt to take narration and, through narration, ... explicate the mysteries of sickness and death.”

Although the family eventually gained the courage to come forward for medical testing, shame was one reason the genetic condition went unnoticed by a larger audience for hundreds of years, Max noted. “Consciousness and a willingness to deal with disease and fight disease come slowly in a family. [You need] reasons why you’re going to present yourself for the kind of difficult analysis that takes place in neurology or a sleep clinic,” he said. He added, “[Y]ou could say that they did not want the narration that came with their disease.”

During the Q&A, Spencer asked Max about the responsibility of a writer to tell another person’s story. He replied that in both The Family and Every Love Story Is a Ghost Story, his biography of the author David Foster Wallace, he strove “to be a sympathetic, open-minded listener – the kind of person who says relatively little but keeps his or her ears open. That’s always how I’ve tried to write.”

Asked about the connection between the subjects of his two books, Max said, “I don’t think any of these stories is about a diagnosis so much as it is about a journey.” The Italian family did not cower or welcome death but led lives “very similar to our own,” he said, while Wallace fought his diagnoses of bipolar disorder because he “didn’t want to have this sentence on him.”

Listen to a recording of D. T. Max’s entire talk and other editions of Narrative Medicine Rounds at iTunes U. Narrative Medicine Rounds, held the first Wednesday of each month, September through May, are free and require no RSVP. View a schedule of Narrative Medicine events here.