Jean-dominique Bauby

by Diving Bell;the Butterfly

  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.

  The Sausage

  After every day’s session on the vertical board, a stretcher bearer wheels me from the rehabilitation room and parks me next to my bed, where I wait for the nurse’s aides to swing me back between the sheets. And every day, since by now it is noon, the same stretcher bearer wishes me a resolutely cheerful “Bon appetit!”—his way of saying “See you tomorrow.” And of course, to wish me a hearty appetite is about the same as saying
“Merry Christmas” on August 15 or “Good night” in broad daylight. In the last eight months I have swallowed nothing save a few drops of lemon-flavored water and a half teaspoon of yogurt, which gurgled noisily down my windpipe. The feeding test—as they grandly called this banquet—was not a success. But no call for alarm: I haven’t starved. By means of a tube threaded into my stomach, two or three bags of a brownish fluid provide my daily caloric needs. For pleasure, I have to turn to the vivid memory of tastes and smells, an inexhaustible reservoir of sensations. Once, I was a master at recycling leftovers. Now I cultivate the art of simmering memories. You can sit down to a meal at any hour, with no fuss or ceremony. If it’s a restaurant, no need to call ahead. If I do the cooking, it is always a success. The bœuf bourguignon is tender, the bœuf en gelée translucent, the apricot pie possesses just the requisite tartness. Depending on my mood, I treat myself to a dozen snails, a plate of Alsatian sausage with sauerkraut, and a bottle of late-vintage golden Gewürztraminer; or else I savor a simple soft-boiled egg with fingers of toast and lightly salted butter. What a banquet! The yolk flows warmly over my palate and down my throat. And indigestion is never a problem. Naturally, I use the finest ingredients: the freshest vegetables, fish straight from the water, the most delicately marbled meat. Everything must be done right. Just to make sure, a friend sent me the recipe for authentic homemade sausage, andouillette de Troyes, with three different kinds of meat braided in strips. Also, I scrupulously observe the rhythm of the seasons. Just now I am cooling my taste buds with melon and red fruit. I leave oysters and game for the autumn—should I feel like eating them, for I am becoming careful, even ascetic, in matters of diet. At the outset of my protracted fast, deprivation sent me constantly to my imaginary larder. I was gluttonous. But today I could almost be content with a good old proletarian hard sausage trussed in netting and suspended permanently from the ceiling in some corner of my head. A knobby Lyons rosette, for example, very dry and coarsely chopped. Every slice melts a little on your tongue before you start chewing to extract all its flavor. The origin of my addiction to sausage goes back forty years. Although still at an age for candy, I already preferred delicatessen meats, and my maternal grandfather’s nurse noticed that whenever I visited the gloomy apartment on the Boulevard Raspail, I would ask her in a beguiling lisp for sausage. Skilled at indulging the desires of children and the elderly, she eventually pulled off a double coup, giving me a sausage and marrying my grandfather just before he died. My joy at receiving such a gift was in direct proportion to the annoyance the unexpected nuptials caused my family. I have only the vaguest picture of my grandfather: supine and stern-faced in the gloom, resembling Victor Hugo’s portrait on the old five-hundred-franc notes in use at the time. I have a much clearer memory of that sausage lying incongruously among my Dinky Toys and picture books.

  Guardian Angel

  The identity badge pinned to Sandrine’s white tunic says “Speech Therapist,” but it should read “Guardian Angel.” She is the one who set up the communication code without which I would be cut off from the world. But alas! while most of my friends have adopted the system, here at the hospital only Sandrine and a female psychologist use it. So I usually have the skimpiest arsenal of facial expressions, winks, and nods to ask people to shut the door, loosen a faucet, lower the volume on the TV, or fluff up a pillow. I do not succeed every time. As the weeks go by, this forced solitude has allowed me to acquire a certain stoicism and to realize that the hospital staff are of two kinds: the majority, who would not dream of leaving the room without first attempting to decipher my SOS messages; and the less conscientious minority, who make their getaway pretending not to notice my distress signals. Like that heartless oaf who switched off the Bordeaux-Munich soccer game at halftime, saying “Good night!” with a finality that left no hope of appeal. Quite apart from the practical drawbacks, this inability to communicate is somewhat wearing. Which explains the gratification I feel twice daily when Sandrine knocks, pokes her small chipmunk face through the door, and at once sends all gloomy thoughts packing. The invisible and eternally imprisoning diving bell seems less oppressive.

  Speech therapy is an art that deserves to be more widely known. You cannot imagine the acrobatics your tongue mechanically performs in order to produce all the sounds of a language. Just now I am struggling with the letter l, a pitiful admission for an editor in chief who cannot even pronounce the name of his own magazine! On good days, between coughing fits, I muster enough energy and wind to be able to puff out one or two phonemes. On my birthday, Sandrine managed to get me to pronounce the whole alphabet more or less intelligibly. I could not have had a better present. It was as if those twenty-six letters had been wrenched from the void; my own hoarse voice seemed to emanate from a far-off country. The exhausting exercise left me feeling like a caveman discovering language for the first time. Sometimes the phone interrupts our work, and I take advantage of Sandrine’s presence to be in touch with loved ones, to intercept and catch passing fragments of life, the way you catch a butterfly. My daughter, Céleste, tells me of her adventures with her pony. In five months she will be nine. My father tells me how hard it is to stay on his feet. He is fighting undaunted through his ninety-third year. These two are the outer links of the chain of love that surrounds and protects me. I often wonder about the effect of these one-way conversations on those at the other end of the line. I am overwhelmed by them. How dearly I would love to be able to respond with something other than silence to these tender calls. I know that some of them find it unbearable. Sweet Florence refuses to speak to me unless I first breathe noisily into the receiver that Sandrine holds glued to my ear. “Are you there, Jean-Do?” she asks anxiously over the air.

  And I have to admit that at times I do not know anymore.

  The Photo

  The last time I saw my father, I shaved him. It was the week of my stroke. He was unwell, so I had spent the night at his small apartment near the Tuileries gardens in Paris. In the morning, after bringing him a cup of milky tea, I decided to rid him of his few days’ growth of beard. The scene has remained engraved in my memory.

  Hunched in the red-upholstered armchair where he sifts through the day’s newspapers, my dad bravely endures the rasp of the razor attacking his loose skin. I wrap a big towel around his shriveled neck, daub thick lather over his face, and do my best not to irritate his skin, dotted here and there with small dilated capillaries. From age and fatigue, his eyes have sunk deep into their sockets, and his nose looks too prominent for his emaciated features. But, still flaunting the plume of hair—now snow white—that has always crowned his tall frame, he has lost none of his splendor.

  All around us, a lifetime’s clutter has accumulated; his room calls to mind one of those old persons’ attics whose secrets only they can know—a confusion of old magazines, records no longer played, miscellaneous objects. Photos from all the ages of man have been stuck into the frame of a large mirror. There is Dad, wearing a sailor suit and playing with a hoop before the Great War; my eight-year-old daughter in riding gear; and a black-and-white photo of myself on a miniature-golf course. I was eleven, my ears protruded, and I looked like a somewhat simpleminded schoolboy. Mortifying to realize that at that age I was already a confirmed dunce.

  I complete my barber’s duties by splashing my father with his favorite aftershave lotion. Then we say goodbye; this time, for once, he neglects to mention the letter in his writing desk where his last wishes are set out. We have not seen each other since. I cannot quit my seaside confinement. And he can no longer descend the magnificent staircase of his apartment building on his ninety-two-year-old legs. We are both locked-in cases, each in his own way: myself in my carcass, my father in his fourth-floor apartment. Now I am the one they shave every morning, and I often think of him while a nurse’s aide laboriously scrapes my cheeks with a week-old blade. I hope that I was a more attentive Figaro.

  Every now and then he calls, and I listen to his affectionate voice, whi
ch quivers a little in the receiver they hold to my ear. It cannot be easy for him to speak to a son who, as he well knows, will never reply. He also sent me the photo of me at the miniature-golf course. At first I did not understand why. It would have remained a mystery had someone not thought to look at the back of the print. Suddenly, in my own personal movie theater, the forgotten footage of a spring weekend began to unroll, when my parents and I had gone to take the air in a windy and not very sparkling seaside town. In his strong, angular handwriting, Dad had simply noted: Berck-sur-Mer, April 1963.

  Yet Another Coincidence

  If you asked readers which of Alexandre Dumas’s literary heroes they would like to be, they would pick D’Artagnan or Edmond Dantès. No one would dream of choosing Noirtier de Villefort, a somewhat sinister character in The Count of Monte Cristo. Described by Dumas as a living mummy, a man three-quarters of the way into the grave, this profoundly handicapped creature summons up not dreams but shudders. The mute and powerless possessor of the most terrible secrets, he spends his life slumped in a wheelchair, able to communicate only by blinking his eye: one blink means yes; two means no. In fact, dear Grandpapa Noirtier, as his granddaughter affectionately calls him, is literature’s first—and so far only—case of locked-in syndrome.

  As soon as my mind was clear of the thick fog with which my stroke had shrouded it, I began to think a lot about Grandpapa Noirtier. I had just reread The Count of Monte Cristo, and now here I was back in the heart of the book, and in the worst of circumstances. Ironic—but that rereading had not been purely by chance. I had been toying with the idea of writing a modern, doubtless iconoclastic, version of the Dumas novel. Vengeance, of course, remained the driving force of the action, but the plot took place in our era, and Monte Cristo was a woman.