The Diving Bell and the Butterfly

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The Diving Bell and the Butterfly Page 5

by Jean-Dominique Bauby


  We were inseparable. We lived, ate, drank, slept, and dreamed only of and for the paper. Whose idea was that afternoon at the racetrack? It was a fine winter Sunday, blue, cold, and dry, and the horses were running at Vincennes. Neither of us was a racing fan, but the track correspondent valued us highly enough to treat us to lunch at the Vincennes restaurant and to give us the password to the Aladdin’s cave of racing: a tip. Mithra-Grandchamp was a sure thing, he told us, a guaranteed winner, and since the odds on him were twenty to one, a fat little profit—much better than municipal bonds—seemed likely.

  Now Vincent is on the outskirts of Berck and—like all my visitors—is wondering what the hell he is doing here.

  We had eaten an enjoyable lunch that day in the restaurant overlooking the racetrack. The large dining room was frequented by gangsters in their Sunday suits, pimps, parolees, and other shady characters who gravitate naturally to horse racing. Sated, we puffed greedily on long cigars and awaited the fourth race. In that hothouse atmosphere, criminal records bloomed like orchids all around us.

  Reaching the seafront, Vincent turns and drives along the promenade. The throng of summer visitors eclipses his winter memories of a frigid, deserted Berck.

  At Vincennes, we lingered so long in the dining room that the race came and went without us. The betting counter slammed shut under our noses before I had time to pull out the roll of banknotes the people back at the paper had entrusted to me. Despite our attempts at discretion, Mithra-Grandchamp’s name had made the rounds of the newspaper. Rumor had turned him into a mythic beast, and everyone was determined to bet on him. All we could do was watch the race and hope…At the last turn, Mithra-Grandchamp began to pull away. Entering the final stretch, he had a lead of five lengths, and we watched in a dream as he crossed the finish line a good forty yards ahead of his closest pursuer. Back at the paper, they must have been going wild around the TV screen.

  Vincent’s car slips into the hospital parking lot. Brilliant sunshine. This is where my visitors, hearts in mouths, need fortitude to brave the few yards that separate me from the world: the automatic glass doors, elevator number 7, and the horrible little corridor leading to Room 119. All you can see through the half-open doors are bedridden wretches whom fate has cast to the far edge of life. Some visitors probably stand for a moment outside my room so that they can greet me with firmer voices and drier eyes. When they finally come in, they are gasping for air like divers whose oxygen has failed them. I even know of some who turned tail and fled back to Paris, their resolve abandoning them on my very threshold.

  Vincent knocks and enters soundlessly. I have become so inured to the look on people’s faces that I scarcely notice the transient gleam of fear. Or in any case, it no longer shakes me quite so much. I try to compose features atrophied by paralysis into what I hope is a welcoming smile. Vincent answers this grimace with a kiss on my forehead. He hasn’t changed. His crest of red hair, his sullen expression, his stocky physique, his habit of shifting from one foot to the other, give him the look of a Welsh shop steward visiting a mate injured in a mine explosion. Vincent bobs forward like a prizefighter in the tough lightweight division. On Mithra-Grandchamp day, after that disastrous win, he had simply muttered: “Idiots! We’re complete idiots! When we get back to the office we’ll be history!” His favorite expression.

  Frankly, I had forgotten Mithra-Grandchamp. The memory of that event has only just come back to me, now doubly painful: regret for a vanished past and, above all, remorse for lost opportunities. Mithra-Grandchamp is the women we were unable to love, the chances we failed to seize, the moments of happiness we allowed to drift away. Today it seems to me that my whole life was nothing but a string of those small near misses: a race whose result we know beforehand but in which we fail to bet on the winner. By the way, we managed to pay back all our colleagues.

  The Duck Hunt

  On top of the various discomforts that accompany locked-in syndrome, I suffer from a serious hearing disorder. My right ear is completely blocked, and my left ear amplifies and distorts all sounds farther than ten feet away. When a plane tows an ad for the local theme park over the beach, I could swear that a coffee mill has been grafted onto my eardrum. But that noise is only fleeting. Much more disturbing is the continuous racket that assails me from the corridor whenever they forget to shut my door despite all my efforts to alert people to my hearing problems. Heels clatter on the linoleum, carts crash into one another, hospital workers call to one another with the voices of stockbrokers trying to liquidate their holdings, radios nobody listens to are turned on, and on top of everything else, a floor waxer sends out an auditory foretaste of hell. There are also a few frightful patients. I know some whose only pleasure is to listen to the same cassette over and over. I had a very young neighbor who was given a velveteen duck equipped with a sophisticated detection device. It emitted a reedy, piercing quack whenever anyone entered the room—in other words, twenty-five times a day. Luckily the little patient went home before I could carry out my plan to exterminate the duck. I am keeping my scheme in readiness, though: you never know what horrors tearful families may bestow on their young. But the first prize for eccentric neighbors goes to a woman who emerged demented from a coma. She bit nurses, seized male orderlies by their genitals, and was unable to request a glass of water without screaming “Fire!” At first these false alarms had everyone dashing into action; then, weary of the struggle, they let her screaming fill all hours of the day and night. Her antics gave our neurology section a heady “cuckoo’s nest” atmosphere, and I was almost sorry when they took our friend away to yell “Help! Murder!” elsewhere.

  Far from such din, when blessed silence returns, I can listen to the butterflies that flutter inside my head. To hear them, one must be calm and pay close attention, for their wingbeats are barely audible. Loud breathing is enough to drown them out. This is astonishing: my hearing does not improve, yet I hear them better and better. I must have butterfly hearing.

  Sunday

  Through the window I watch the reddish-yellow hospital buildings light up under the sun’s first rays. The brickwork takes on exactly the same shade of pink as the Greek grammar book I had in high school. I wasn’t a brilliant Hellenist (to put it mildly), but I love that warm, deep shade: it still conjures up for me a world of books and study, in which we consorted with Alcibiades’ dog and the heroes of Thermopylae. “Antique pink” is what hardware stores call it. It has absolutely no resemblance to the cotton-candy pink of the hospital corridors. And even less to the mauve that coats the baseboards and window frames in my room, making them look like the wrapping on a cheap perfume.

  Sunday. I dread Sunday, for if I am unlucky enough to have no visitors, there will be nothing at all to break the dreary passage of the hours. No physical therapist, no speech pathologist, no shrink. Sunday is a long stretch of desert, its only oasis a sponge bath even more perfunctory than usual. On Sundays the nursing staff is plunged into gloomy lethargy by the delayed effects of Saturday-night drinking, coupled with regret at missing the family picnic, the trip to the fair, or the shrimp fishing on account of the Sunday duty roster. The bath I am given bears more resemblance to drawing and quartering than to hydrotherapy. A triple dose of the finest eau de toilette fails to mask the reality: I stink.

  Sunday. If the TV is turned on, it is vital to have made the right decision. It is almost a matter of strategy. For three or four hours are likely to go by before the return of the kindly soul who can change channels. Sometimes it is wiser to forgo an interesting program if it is followed by a tearful soap opera, a silly game show, or a raucous talk show. Violent applause hurts my ears. I prefer the peace of documentaries on art, history, or animals. I watch them without the sound, the way you watch flames in a fireplace.

  Sunday. The bell gravely tolls the hours. The small Health Department calendar on the wall, whittled away day by day, announces that it is already August. Mysterious paradox: time, motionless here, gallops out there. In my
contracted world, the hours drag on but the months flash by. I can’t believe it’s August. Friends, their wives and children, have scattered to the summer winds. In my thoughts I steal into their summer quarters—never mind if doing so tugs at my heart. In Brittany, a pack of children returns from the market on bikes, every face radiant with laughter. Some of these kids have long since entered the age of major adolescent concerns, but along these rhododendron-lined Breton roads, everyone rediscovers lost innocence. This afternoon, they will be boating around the island, the small outboards laboring against the current. Someone will be stretched out in the bow, eyes closed, arm trailing in the cool water. In the south of France, a burning sun drives you to seek the cool depths of the house. You fill sketchbooks with watercolors. A small cat with a broken leg seeks shady corners in the priest’s garden, and a little farther on, in the flat Camargue delta country, a cluster of young bulls skirts a marsh that gives off a smell of aniseed. And all over the country, activities are under way for the great domestic event of the day. I know mothers everywhere are tired of preparing it, but for me it is a legendary forgotten ritual: lunch.

  Sunday. I contemplate my books, piled up on the windowsill to constitute a small library: a rather useless one, for today no one will come to read them for me. Seneca, Zola, Chateaubriand, and Valéry Larbaud are right there, three feet away, just out of reach. A very black fly settles on my nose. I waggle my head to unseat him. He digs in. Olympic wrestling is child’s play compared to this. Sunday.

  The Ladies of Hong Kong

  I loved to travel. Fortunately I have stored away enough pictures, smells, and sensations over the course of the years to enable me to leave Berck far behind on days when a leaden sky rules out any chance of going outdoors. They are strange wanderings: The sour smell of a New York bar. The odor of poverty in a Rangoon market. Little bits of the world. The white icy nights of Saint Petersburg or the unbelievably molten sun at Furnace Creek in the Nevada desert. This week has been somewhat special. At dawn every day I have flown to Hong Kong, where there is a conference for the international editions of my magazine. Note that I still say “my magazine,” despite the misleading nature of the words, as if that possessive pronoun were one of the fragile threads linking me to the living world.

  In Hong Kong, I have a little trouble finding my way, for unlike many of my other destinations, this city is one I have never actually visited. Every time the opportunity arose, a malicious fate kept me from my goal. When I did not fall sick on the eve of a departure, I lost my passport, or a reporting assignment sent me elsewhere. In short, chance always turned me back at the border. Once, I gave up my seat for Jean-Paul K., who at that time had not yet been taken hostage by the Hezbollah. He would spend several years in a darkened Beirut dungeon, endlessly reciting the wines of the Bordeaux Classification of 1855 to keep from going mad. On his return from Hong Kong, he brought me a cordless phone, at that time the very latest thing. I remember his laughing eyes behind their round glasses. I was very fond of Jean-Paul, but I never saw him again after his release from Beirut. I suppose I was ashamed of playing at being editor in chief in the frothy world of fashion magazines while he wrestled with life on its most brutal terms. Now I am the prisoner and he the free man. And since I don’t have the châteaux of the Médoc region at my fingertips, I have had to choose another kind of litany to fill my empty hours: I count the countries where my magazine is published. There are already twenty-eight members in this United Nations of international glamour.

  And where are they now, all my beautiful colleagues who worked so tirelessly as ambassadors of French style? They would stand in the conference rooms of international hotels, fielding a daylong barrage of questions in Chinese, English, Thai, Portuguese, or Czech, as they tried to answer that most metaphysical of questions: “Who is the typical Elle woman?” I picture them now wandering about Hong Kong, walking down neon-bright streets where pocket computers and noodle soup are sold, trotting behind the eternal bow tie of our chief executive officer as he leads his troops to the charge. Part Cyrano, part Bonaparte, he slows his pace only before the highest skyscrapers, and then only to scowl at them as though about to devour them.

  Which way, General? Should we take the hydrofoil and gamble away a handful of dollars in Macao, or should we repair to the Felix Bar in the Peninsula Hotel, decorated by the French designer Philippe S.? Vanity impels me toward the second option. The fact is, my likeness adorns the back of a chair in that lofty luxurious watering hole. I, who hate to have my photo taken, was one of dozens of Parisians whose portraits Philippe S. incorporated into the decor. That photo, of course, was taken some weeks before fate turned me into a scarecrow. I have no idea whether my chair is more or less popular than the others, but if you go there, for God’s sake don’t tell the barman what happened to me. They say that all Chinese are superstitious, and if my true fate were known, not one of those charming little Chinese miniskirts would ever dare sit on me again.

  The Message

  Although my own corner of the hospital has the look of an expensive private school, one would never mistake the cafeteria crowd for members of the Dead Poets Society. The girls have hard eyes, the boys tattoos and sometimes rings on their fingers. There they sit, chain-smoking and talking about fistfights and motorbikes. Their already stooped shoulders seem to bear a heavy cross. Cruel fate has cursed them, and their stay at Berck is just one more stage between an abused childhood and a jobless future. When I am wheeled through their smoke-filled lair, the silence becomes deafening; I see neither pity nor compassion in their eyes.

  Through the open cafeteria window you can hear the beating of the hospital’s bronze heart: the bell that makes the firmament vibrate four times an hour. On a table cluttered with empty cups stands a small typewriter with a sheet of pink paper stuck in the roller. Although at the moment the page is utterly blank, I am convinced that someday there will be a message for me there. I am waiting.

  At the Wax Museum

  In a dream last night, I visited Paris’s wax museum, the Musée Grévin. It had changed. There was the same entrance, in turn-of-the-century style, the same distorting mirrors, the same chamber of horrors, but the galleries displaying contemporary figures were gone. In the first rooms, the characters on exhibit were in street clothes, and I did not recognize them until I mentally put them in white hospital uniforms. Then I realized that these boys in T-shirts and girls in miniskirts, this housewife frozen with teapot in hand, this crash-helmeted youth, were all in fact the nurses and orderlies of both sexes who took turns appearing morning and night at my hospital bedside. They were all there, fixed in wax: gentle, rough, caring, indifferent, hardworking, lazy, the ones you can make contact with and those to whom you are just another patient.

  At first some of the staff had terrified me. I saw them only as my jailers, as accomplices in some awful plot. Later I hated some of them, those who wrenched my arm while putting me in my wheelchair, or left me all night long with the TV on, or let me lie in a painful position despite my protests. For a few minutes or a few hours I would cheerfully have killed them. Later still, as time cooled my fiercest rages, I got to know them better. They carried out as best they could their delicate mission: to ease our burden a little when our crosses bruised our shoulders too painfully.

  I gave them nicknames known only to me, so that when they entered my room I could hail them in my thunderous inner voice: “Hey, Blue Eyes! Morning, Big Bird!” They of course remained unaware. The one who dances around my bed and strikes an Elvis pose as he asks “How are you doing?” is “David Bowie.” “Prof” makes me laugh, with his baby face and gray hair and the gravity with which he utters the unvarying judgment: “So far, so good.” “Rambo” and “Terminator,” as you might imagine, are not exactly models of gentleness. I prefer “Thermometer” her dedication would be beyond reproach if she did not regularly forget the implement she thrusts under my armpit.

  In my dream, the museum sculptor was not altogether successful in ca
pturing the smiles and scowls of Berck’s hospital personnel, northerners whose ancestors have always lived on this strip of France between the Channel coast and the rich fields of Picardy. They readily lapse into their local patois as soon as they are alone together. To get them right you would need the talent of one of those medieval miniaturists whose magic brush brought to life the folk who once thronged the roads of Flanders. Our artist does not possess such skill. Yet he has managed to capture the youthful charm of the student nurses with their dimpled country-girl arms and full pink cheeks. As I left the room, I realized that I was fond of all these torturers of mine.

  Entering the next exhibit, I was surprised to find myself back in Room 119, apparently reproduced down to the last detail. But as I got closer, the photos, drawings, and posters on my walls turned out to be a patchwork of ill-defined colors. Like an Impressionist painting, it was a pattern intended to create an illusion at a certain distance. There was no one on the bed, just a hollow in the middle of the yellow sheets bathed in pallid light. And here I had no problem identifying the watchers on either side of the bed: they were members of the personal bodyguard that spontaneously sprang up around me immediately after the disaster.

  Michel, seated on a stool and conscientiously scribbling in the notebook where visitors set down all my remarks. Anne-Marie, arranging a bouquet of forty roses. Bernard, holding a memoir of diplomatic life in one hand and with the other executing a theatrical barrister’s gesture that was pure Daumier. Perched on the end of his nose, his steel-rimmed glasses completed the picture of a distinguished courtroom orator. Florence, pinning children’s drawings on a corkboard, her black hair framing a sad smile. And Patrick, leaning against a wall, apparently lost in thought. Looking almost ready to leap into life, the group projected great tenderness, a shared sorrow, an accumulation of the affectionate gravity I feel whenever these friends come to see me.

 

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