The Diving Bell and the Butterfly

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 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.

Bathtime

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.