Jean-dominique Bauby by Diving Bell, the Butterfly Page A

connection between a wheelchair and me.
    No one had yet given me an accurate picture of my situation, and I clung to the certainty, based on bits and pieces I had overheard, that I would very quickly recover movement and speech.
    Indeed, my roving mind was busy with a thousand projects: a novel, travel, a play, marketing a fruit cocktail of my own invention. (Don’t ask for the recipe; I have forgotten it.) They immediately dressed me. “Good for the morale,” pronounced the neurologist in sententious tones. And in truth I would have been pleased to trade my yellow nylon hospital gown for a plaid shirt, old pants, and a shapeless sweater—except that it was a nightmare to put them on. Or rather to watch the clothes manipulated, after endless contortions, over these uncooperative deadweight limbs, which serve me only as a source of pain.
    When I was finally dressed, the ritual could begin. Two attendants seized me by the shoulders and feet, lifted me off the bed, and dumped me unceremoniously into the wheelchair. I had graduated from being a patient whose prognosis was uncertain to an official quadriplegic. They didn’t quite applaud, but they came close. My caretakers made me travel the length and breadth of the hospital floor, to make certain that the seated position did not trigger uncontrollable spasms, but I was too devastated by this brutal down-grading 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 trunk of their car. The wheelchair sat abandoned in a corner, with my clothes tossed over its dark-blue plastic backrest. Before the last white coat left the room, I signaled my wish to have the TV turned on, low. On the screen was my father’s favorite quiz show. Since daybreak, an unremitting drizzle had been streaking my windows.

Prayer
    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 able to swivel my head, which is not supposed to be part of the clinical picture. Since most victims are relegated 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 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