In 1995, Elle editor Jean-Dominique Bauby had a stroke that left him with locked-in syndrome, a condition in which he was unable to speak, swallow, or even breathe without assistance. His mind, however, was unaffected. His only method of communication with the world was a flicker of his left eyelid. A companion recited the alphabet, and he blinked when she arrived at the correct letter; in this painstaking way he conveyed thoughts, held conversations, and, in the end, dictated and edited an entire book.
I read this book on a recommendation from a student, who had seen the French film starring Mathieu Amalric and Marie-Josée Croze. I’m not sure what I was expecting — short stories, perhaps? The book surprised me by being a collection of brief essays, mostly about Bauby’s experience of paralysis (the “diving-bell” metaphor is his.) He talks eloquently, or as eloquently as possible under the circumstances, about his isolation (even other doctors and patients avoid him as a “hopeless case”), the pain of not being able to talk to his children, the effect of the letters he receives from the outside world. His tone is sometimes wistful, but much more often sardonic or even mischievous — something I found remarkable.
Other essays are the “papillons” of the title, ways in which Bauby’s mind can roam outside his frozen body. He talks of visiting faraway places, times in the future and the past, his own childhood, and his dreams. Perhaps the most touching essay, to me, is the one entitled “Le saucisson” (“The sausage”), because it is so purely French. Unable to eat or swallow on his own, fed through a tube, Bauby spends hours fantasizing about the perfect meal:
If it’s at a restaurant, no need for a reservation. If I’m cooking, it’s always a success. The bourguignon is unctuous, the aspic translucent, and the apricot tart has just the right tanginess. According to my mood, I have a dozen escargots, a choucroute garnie, and a golden bottle of Gewurtztraminer “Cuvee vendanges tardives,” or perhaps I relish a simple soft-boiled egg, accompanied by toast with salted butter. What a feast!
Perhaps the thing that comes through these short essays most clearly is the shift in priorities that comes with severe illness. Bauby is aware of just a few things: the urgent needs of his body, trapped in the diving bell, and the equally urgent needs of his spirit, the butterfly. For someone with a remarkably full life before the stroke — not only was he the editor of Elle, but he drops significant hints about his complicated personal life — this drastic reduction in priorities must have provided a painful clarity.
Bauby wrote this book about six months after his stroke. He died not quite a year after completing it. It’s a remarkable work in its way.
Note: I read this book in French, and the translation is mine. It is, however, available in English, translated by Jeremy Leggatt.