Jean-dominique Bauby (2 page)

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.

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.

The Alphabet

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).

The Empress

Not many places in France still pay homage to Empress Eugénie. In the main hall of the Naval Hospital, a vast echoing space in which gurneys and wheelchairs can advance five abreast, a stained-glass window depicts the wife of Napoléon III, the hospital’s patroness. The two chief curiosities of this mini-museum are a white marble bust, which restores her to the glory of her youth, and the letter in which the deputy stationmaster of Berck’s railroad depot describes to the editor of the
Correspondant Maritime
the brief imperial visit of May 4, 1864. Through his words we clearly see the special train pull in carrying the troupe of young ladies of Eugénie’s retinue, the joyful procession through the town, and the introduction of the hospital’s little patients (Berck began life as a children’s hospital) to their illustrious protectress. For a while I seized every chance I had to pay my respects to these relics.

A score of times I read the railwayman’s account. I mingled with the chattering flock of ladies-in-waiting, and whenever Eugénie progressed from one ward to another, I followed her hat with its yellow ribbons, her silk parasol, and the scent of her passage, imbued with the eau de cologne of the court perfumer. On one particularly windy day, I even dared to draw near and bury my face in the folds of her white gauzy dress with its broad satin stripes. It was as sweet as whipped cream, as cool as the morning dew. She did not send me away. She ran her fingers through my hair and said gently, “There, there, my child, you must be very patient,” in a Spanish accent very like the neurologist’s. She was no longer the empress of the French but a compassionate divinity in the manner of Saint Rita, patroness of lost causes.

And then one afternoon as I confided my woes to her likeness, an unknown face interposed itself between us. Reflected in the glass I saw the head of a man who seemed to have emerged from a vat of formaldehyde. His mouth was twisted, his nose damaged, his hair tousled, his gaze full of fear. One eye was sewn shut, the other goggled like the doomed eye of Cain. For a moment I stared at that dilated pupil, before I realized it was only mine.

Whereupon a strange euphoria came over me. Not only was I exiled, paralyzed, mute, half deaf, deprived of all pleasures, and reduced to the existence of a jellyfish, but I was also horrible to behold. There comes a time when the heaping up of calamities brings on uncontrollable nervous laughter—when, after a final blow from fate, we decide to treat it all as a joke. My jovial cackling at first disconcerted Eugénie, until she herself was infected by my mirth. We laughed until we cried. The municipal band then struck up a waltz, and I was so merry that I would willingly have risen and invited Eugénie to dance, had such a move been fitting. We would have whirled around miles of floor. Ever since then, whenever I go through the main hall, I detect a hint of amusement in the empress’s smile.

Cinecittà

The Naval Hospital must be a striking sight to the noisy light aircraft that buzz across the Berck shoreline at an altitude of three hundred feet. With its massive, overelaborate silhouette and the high redbrick walls typical of northern France, it seems to have foundered on the sands between the town and the gray waters of the Channel. On the facade of its most imposing annex, as on the front of schools and public baths in the French capital, are the words “City of Paris.” Created during the Second Empire for sick children in need of a climate healthier than that of Paris’s hospitals, the annex has retained its extraterritorial status.

For while cold reality places us in the Pas de Calais region, as far as the medical bureaucracy is concerned we are still on the banks of the Seine.

Linked by endless corridors, the hospital buildings form an authentic maze, and one routinely runs into patients from Ménard hopelessly lost in Sorrel—wards named after eminent surgeons. Like children who have wandered from their mothers, these unfortunates mutter “I’m lost!” as they wobble about on their crutches. Being what the stretcher bearers call a “Sorrel,” I am more or less at home here, but the same cannot be said of newcomers. I could try to signal with my eyes whenever my wheelchair is pushed in the wrong direction, but I have taken to looking stonily ahead. There is always the chance that we will stumble upon some unknown corner of the hospital, see new faces, or catch a whiff of cooking as we pass. It was in this way that I came upon the lighthouse, on one of my very first expeditions in my wheelchair, shortly after swimming up from the mists of coma. As we emerged from an elevator on the wrong floor, I saw it: tall, robust, and reassuring, in red and white stripes that reminded me of a rugby shirt. I placed myself at once under the protection of this brotherly symbol, guardian not just of sailors but of the sick—those castaways on the shores of loneliness.

The lighthouse and I remain in constant touch, and I often call on it by having myself wheeled to Cinecittà, a region essential to my imaginary geography of the hospital. Cinecittà is the perpetually deserted terrace of Sorrel ward. Facing south, its vast balconies open onto a landscape heavy with the poetic and slightly offbeat charm of a movie set. The suburbs of Berck look like a model-train layout. A handful of buildings at the foot of the sand dunes gives the illusion of a Western ghost town. As for the sea, it foams such an incandescent white that it might be the product of the special-effects department.

I could spend whole days at Cinecittà. There, I am the greatest director of all time. On the town side, I reshoot the close-ups for
Touch of Evil.
Down at the beach, I rework the dolly shots for
Stagecoach,
and offshore I re-create the storm rocking the smugglers of
Moonfleet.
Or else I dissolve into the landscape and there is nothing more to connect me to the world than a friendly hand stroking my numb fingers. I am the hero of Godard’s
Pierrot le Fou,
my face smeared blue, a garland of dynamite sticks encircling my head. The temptation to strike a match drifts by, like a cloud. And then it is dusk, when the last train sets out for Paris, when I have to return to my room. I wait for winter. Warmly wrapped up, we can linger here until nightfall, watch the sun set and the lighthouse take up the torch, its hope-filled beams sweeping the horizon.

Tourists

After devoting itself to the care of young victims of a tuberculosis epidemic after the Second World War, Berck gradually shifted its focus away from children. Nowadays it tends to concentrate more on the sufferings of the aged, on the inevitable breakdown of body and mind; but geriatrics is only one part of the picture I must paint to give an accurate idea of the hospital’s denizens. In one section are a score of comatose patients, patients at death’s door, plunged into endless night. They never leave their rooms. Yet everyone knows they are there, and they weigh strangely on our collective awareness, almost like a guilty conscience. In another wing, next door to the colony of elderly and enfeebled, is a cluster of morbidly obese patients whose substantial dimensions the doctors hope to whittle down. Elsewhere, a battalion of cripples forms the bulk of the inmates. Survivors of sport, of the highway, and of every possible and imaginable kind of domestic accident, these patients remain at Berck for as long as it takes to get their shattered limbs working again. I call them “tourists.”

And to complete the picture, a niche must be found for us, broken-winged birds, voiceless parrots, ravens of doom, who have made our nest in a dead-end corridor of the neurology department. Of course, we spoil the view. I am all too conscious of the slight uneasiness we cause as, rigid and mute, we make our way through a group of more fortunate patients.

The best place to observe this phenomenon is the rehabilitation room, where all patients undergoing physical therapy are congregated. Garish and noisy, a hubbub of splints, artificial limbs, and harnesses of varying complexity, it is an authentic Court of Miracles. Here we see a young man with an earring who suffered multiple fractures in a motorbike accident; a grandmother in a fluorescent nightgown learning to walk after a fall from a stepladder; and a vagrant whose foot was somehow amputated by a subway train. Lined up like a row of onions, this human throng waves arms and legs under minimal supervision, while I lie tethered to an inclined board that is slowly raised to a vertical position. Every morning I spend half an hour suspended this way, frozen to attention in a posture that must evoke the appearance of the Commendatore’s statue in the second act of Mozart’s
Don Giovanni.
Below, people laugh, joke, call out. I would like to be part of all this hilarity, but as soon as I direct my one eye toward them, the young man, the grandmother, and the homeless man turn away, feeling the sudden need to study the ceiling smoke detector. The “tourists” must be very worried about fire.