The Diving Bell and the Butterfly

by Jean-Dominique Bauby

I was brutally introduced to this vital piece of anatomy when a cerebrovascular accident took my brain stem out of action. In the past, it was known as a “massive stroke,” and you simply died. But improved resuscitation techniques have now prolonged and refined the agony. You survive, but you survive with what is so aptly known as “locked-in syndrome.” Paralyzed from head to toe, the patient, his mind intact, is imprisoned inside his own body, unable to speak or move. In my case, blinking my left eyelid is my only means of communication.

“Want to play hangman?” asks Théophile, and I ache to tell him that I have enough on my plate playing quadriplegic. But my communication system disqualifies repartee: the keenest rapier grows dull and falls flat when it takes several minutes to thrust it home. By the time you strike, even you no longer understand what had seemed so witty before you started to dictate it, letter by letter. So the rule is to avoid impulsive sallies. It deprives conversation of its sparkle, all those gems you bat back and forth like a ball—and I count this forced lack of humor one of the great drawbacks of my condition.

a floor waxer sends out an auditory foretaste of hell.

Sunday. If the TV is turned on, it is vital to have made the right decision. It is almost a matter of strategy. For three or four hours are likely to go by before the return of the kindly soul who can change channels. Sometimes it is wiser to forgo an interesting program if it is followed by a tearful soap opera, a silly game show, or a raucous talk show. Violent applause hurts my ears. I prefer the peace of documentaries on art, history, or animals. I watch them without the sound, the way you watch flames in a fireplace.

Our boss, known variously to his supporters as Geronimo, Louis XI, and the Ayatollah, regularly hosts luncheons in order to “take stock,” as he puts it. It is here on the top floor of the magazine, in the biggest executive dining room, that our generalissimo offers his subjects clues about where they stand in his affections. His remarks range from praise couched in velvet tones to the most lacerating of rebukes, and he possesses a whole repertoire of gestures, scowls, and beard scratchings, which over the years we have learned to decipher.