Jean-Dominique Bauby: The Diving Bell and the Butterfly

In fact, it is in my respiratory passages that I can hope for improvement. In the long term, I can hope to eat more normally: that is, without the help of a gastric tube. Eventually, perhaps I will be able to breathe naturally, without a respirator, and muster enough breath to make my vocal cords vibrate.

But for now, I would be the happiest of men if I could just swallow the overflow of saliva that endlessly floods my mouth. Even before first light, I am already practicing sliding my tongue toward the rear of my palate in order to provoke a swallowing reaction. What is more, I have dedicated to my larynx the little packets of incense hanging on the wall, amulets brought back from Japan by pious globe-trotting friends. Just one of the stones in the thanksgiving monument erected by my circle of friends during their wanderings. In every corner of the world, the most diverse deities have been solicited in my name. I try to organize all this spiritual energy. If they tell me that candles have been burned for my sake in a Breton chapel, or that a mantra has been chanted in a Nepalese temple, I at once give each of the spirits invoked a precise task. A woman I know enlisted a Cameroon holy man to procure me the goodwill of Africa's gods: I have assigned him my right eye. For my hearing problems I rely on the relationship between my devout mother-in-law and the monks of a Bordeaux brotherhood. They regularly dedicate their prayers to me, and I occasionally steal into their abbey to hear their chants fly heavenward. So far the results have been unremarkable. But when seven brothers of the same order had their throats cut by Islamic fanatics, my ears hurt for several days. Yet all these lofty protections are merely clay ramparts, walls of sand, Maginot lines, compared to the small prayer my daughter, Céleste, sends up to her Lord every evening before she closes her eyes. Since we fall asleep at roughly the same hour, I set out for the kingdom of slumber with this wonderful talisman, which shields me from all harm.

At eight-thirty the physical therapist arrives. Brigitte, a woman with an athletic figure and an imperial Roman profile, has come to exercise my stiffened arms and legs. They call the exercise “mobilization,” a term whose martial connotations contrast ludicrously with the paltry forces thus summoned, for I've lost sixty-six pounds in just twenty weeks. When I began a diet a week before my stroke, I never dreamed of such a dramatic result. As she works, Brigitte checks for the smallest flicker of improvement. “Try to squeeze my hand,” she asks. Since I sometimes have the illusion that I am moving my fingers, I focus my energy on crushing her knuckles, but nothing stirs and she replaces my inert hand on its foam pad. In fact, the only sign of change is in my neck. I can now turn my head ninety degrees, and my field of vision extends from the slate roof of the building next door to the curious tongue-lolling Mickey Mouse drawn by my son, Théophile, when I was still unable to open my mouth. Now, after regular exercise, we have reached the stage of slipping a lollipop into it. As the neurologist says, “We need to be very patient.” The session with Brigitte ends with a facial massage. Her warm fingers travel all over my face, including the numb zone, which seems to me to have the texture of parchment, and the area that still has feeling, where I can manage the beginnings of a frown. Since the demarcation line runs across my mouth, I can only half-smile, which fairly faithfully reflects my ups and downs. A domestic event as commonplace as washing can trigger the most varied emotions.

One day, for example, I can find it amusing, in my forty-fifth year, to be cleaned up and turned over, to have my bottom wiped and swaddled like a newborn's. I even derive a guilty pleasure from this total lapse into infancy. But the next day, the same procedure seems to me unbearably sad, and a tear rolls down through the lather a nurse's aide spreads over my cheeks. And my weekly bath plunges me simultaneously into distress and happiness. The delectable moment when I sink into the tub is quickly followed by nostalgia for the protracted immersions that were the joy of my previous life. Armed with a cup of tea or a Scotch, a good book or a pile of newspapers, I would soak for hours, maneuvering the taps with my toes. Rarely do I feel my condition so cruelly as when I am recalling such pleasures. Luckily I have no time for gloomy thoughts. Already they are wheeling me back, shivering, to my room, on a gurney as comfortable as a bed of nails. I must be fully dressed by ten-thirty and ready to go to the rehabilitation center. Having turned down the hideous jogging suit provided by the hospital, I am now attired as I was in my student days. Like the bath, my old clothes could easily bring back poignant, painful memories. But I see in the clothing a symbol of continuing life. And proof that I still want to be myself. If I must drool, I may as well drool on cashmere.

I am fond of my alphabet letters. At night, when it is a little too dark and the only sign of life is the small red spot in the center of the television screen, vowels and consonants dance for me to a Charles Trenet tune: “Dear Venice, sweet Venice, I'll always remember you…” Hand in hand, the letters cross the room, whirl around the bed, sweep past the window, wriggle across the wall, swoop to the door, and return to begin again.

ESARINTULOMDPCFB

VHGJQZYXKW

The jumbled appearance of my chorus line stems not from chance but from cunning calculation. More than an alphabet, it is a hit parade in which each letter is placed according to the frequency of its use in the French language. That is why E dances proudly out in front, while W labors to hold on to last place. B resents being pushed back next to V, and haughty J—which begins so many sentences in French—is amazed to find itself so near the rear of the pack. Rolypoly G is annoyed to have to trade places with H, while T and U, the tender components of tu , rejoice that they have not been separated. All this reshuffling has a purpose: to make it easier for those who wish to communicate with me.

It is a simple enough system. You read off the alphabet (ESA version, not ABC) until, with a blink of my eye, I stop you at the letter to be noted. The maneuver is repeated for the letters that follow, so that fairly soon you have a whole word, and then fragments of more or less intelligible sentences. That, at least, is the theory. In reality, all does not go well for some visitors. Because of nervousness, impatience, or obtuseness, performances vary in the handling of the code (which is what we call this method of transcribing my thoughts). Crossword fans and Scrabble players have a head start. Girls manage better than boys. By dint of practice, some of them know the code by heart and no longer even turn to our special notebook—the one containing the order of the letters and in which all my words are set down like the Delphic oracle's.

Indeed, I wonder what conclusions anthropologists of the year 3000 will reach if they ever chance to leaf through these notebooks, where haphazardly scribbled remarks like “The physical therapist is pregnant,” “Mainly on the legs,” “Arthur Rimbaud,” and “The French team played like pigs” are interspersed with unintelligible gibberish, misspelled words, lost letters, omitted syllables.

Nervous visitors come most quickly to grief. They reel off the alphabet tonelessly, at top speed, jotting down letters almost at random; and then, seeing the meaningless result, exclaim, “I'm an idiot!” But in the final analysis, their anxiety gives me a chance to rest, for they take charge of the whole conversation, providing both questions and answers, and I am spared the task of holding up my end. Reticent people are much more difficult. If I ask them, “How are you?” they answer, “Fine,” immediately putting the ball back in my court. With some, the alphabet becomes an artillery barrage, and I need to have two or three questions ready in advance in order not to be swamped. Meticulous people never go wrong: they scrupulously note down each letter and never seek to unravel the mystery of a sentence before it is complete. Nor would they dream of completing a single word for you. Unwilling to chance the smallest error, they will never take it upon themselves to provide the “room” that follows “mush,” the “ic” that follows “atom,” or the “nable” without which neither “intermi” nor “abomi” can exist. Such scrupulousness makes for laborious progress, but at least you avoid the misunderstandings in which impulsive visitors bog down when they neglect to verify their intuitions. Yet I understood the poetry of such mind games one day when, attempting to ask for my glasses ( lunettes ), I was asked what I wanted to do with the moon ( lune ).