The Diving-Bell and the Butterfly. Jean-Dominique Bauby
spasms, but I was too devastated by this brutal downgrading of my future hopes to take much notice. They had to place a special cushion behind my head: it was wobbling about like the head of one of those African women upon removal of the stack of rings that has been stretching her neck for years. ‘You can handle the wheelchair,’ said the occupational therapist with a smile intended to make the remark sound like good news, whereas to my ears it had the ring of a life-sentence. In one flash I saw the frightening truth. It was as blinding as an atomic explosion and keener than a guillotine blade. They all left.
As three orderlies laid me back down, I thought of movie gangsters struggling to fit the slain informer’s body into the boot of their car. The wheelchair sat abandoned in a corner, with my clothes tossed over its dark-blue plastic back-rest. Before the last white coat left the room I signalled my wish to have the TV turned on low. On screen was my father’s favourite quiz show, Letters and Numbers. Since daybreak an unremitting drizzle had been streaking the windows.
ODDLY ENOUGH, THE shock of the wheelchair was helpful. Things became clearer. I gave up my grandiose plans, and the friends who had built a barrier of affection around me since my catastrophe were able to talk freely. With the subject no longer taboo, we began to discuss locked-in syndrome. First of all, it is very rare. It is small consolation, but the chances of being caught in this hellish trap are about as likely as those of winning the lottery. At Berck, only two of us were locked in, and my own case was not classic. I am perverse enough to be able to swivel my head, which is not supposed to be part of the clinical picture. Since most victims are abandoned to a vegetable existence, the evolution of the disease is not well understood. All that is known is that if the nervous system makes up its mind to start working again, it does so at the speed of a hair growing from the base of the brain. So it is likely that several years will go by before I can expect to wiggle my toes.
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 could 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 endlessly flooding my mouth. Even before first light I am already practising sliding my tongue towards 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 globetrotting 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 a mantra 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 good will of Africa’s gods: I have assigned him my right eye. For my hearing problems I rely on the warm relationship that my devout mother-in-law enjoys with 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 closing 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 physiotherapist 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 contrasts 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 lollypop 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 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 wallowings 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, manoeuvring 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 trolley as comfortable as a bed of nails. I must be fully dressed by ten thirty and ready to go to the rehabilitation centre. 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 clothes 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 centre of the television screen, vowels and consonants dance 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.
ESARINTULOMDPCFBVHGJQZYXKW
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 labours 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. Roly-poly 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 manoeuvre 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. But the truth is that some visitors fare better than others. Because of nervousness, impatience or obtuseness,