Jean-dominique Bauby

by Diving Bell;the Butterfly

  So I did not have time to commit this crime of lèse-majesté. As a punishment, I would have preferred to be transformed into M. Danglars, Franz d’Épinay, the Abbé Faria, or, at the very least, to copy out one thousand times: “I must not tamper with masterpieces.” But the gods of literature and neurology decided otherwise.

  Some evenings I have the impression that Grandpapa Noirtier patrols our corridors in a century-old wheelchair sadly in need of a drop of oil. To foil the decrees of fate, I am now planning a vast saga in which the key witness is not a paralytic but a runner. You never know. Perhaps it will work.

  The Dream

  As a rule, I do not recall my dreams. At the approach of day their plots inevitably fade. So why did last December’s dreams etch themselves into my memory with the precision of a laser beam? Perhaps that is how it is with coma. Since you never return to reality, your dreams don’t have the luxury of evaporating. Instead they pile up, one upon another, to form a long ongoing pageant whose episodes recur with the insistence of a soap opera. This evening, one such episode has come back to me.

  In my dream, thick snow is falling. It lies a foot deep over the automobile graveyard my best friend and I are walking through, numb with cold. For three days, Bernard and I have been trying to get back to a France paralyzed by a general strike. We ended up in an Italian winter-sports resort, where we found a small local train heading for Nice. But at the French border a strikers’ picket line interrupted our journey and bundled us out of the train and into this desolate landscape, without overcoats and wearing thin city shoes. A lofty overpass straddles the junkyard, as if vehicles falling from the bridge one hundred fifty feet above our heads have piled up here, one on top of another. Bernard and I have an appointment with an influential Italian businessman who has installed his headquarters in one massive pillar of the viaduct, far from prying eyes. We knock at a yellow steel door with the sign “Danger: High Voltage” and an instruction chart for treating electric shock. The door opens. The entrance is reminiscent of a garment-district outlet: jackets on a mobile rack, piles of trousers, boxes of shirts rising to the ceiling. I recognize the surly watchman who admits us by his shock of hair: Radovan Karadzic, leader of the Bosnian Serbs. “My friend is having trouble breathing,” Bernard tells him. Laying down his machine gun, Karadzic performs a tracheotomy upon me on a hastily cleared table. Then we walk down ornate glass stairs to a study in the cellar. Its walls are lined with tan leather; deep armchairs and muted lighting give it the feel of a nightclub. Bernard confers with the owner, a clone of Fiat’s elegant former chairman Gianni Agnelli, while a hostess with a Lebanese accent sits me down at a small bar. Instead of glasses and bottles, rows of plastic tubes dangle floorward like oxygen masks in an aircraft in distress. A barman motions me to put one in my mouth. I comply, and an amber ginger-flavored fluid begins to flow, flooding me with warmth from my toes to the roots of my hair. After a while I want to stop drinking and get down off my stool. Yet I continue to swallow, unable to make the slightest move. I look frantically at the barman to attract his attention. He responds with an enigmatic smile. Around me, voices and faces become distorted. Bernard says something to me, but the sound emerging in slow motion from his mouth is incomprehensible. Instead I hear Ravel’s Bolero. I have been completely drugged.

  Eons later, I become aware of an alarm sounding. The hostess with the Lebanese accent hoists me on her back and climbs the staircase with me. “We have to get out: the police are on their way.” Outside, night has fallen and the snow has stopped. An icy wind takes my breath away. The dazzling beam of a searchlight mounted on the overpass probes the forlorn automobile carcasses.

  “Give up, you’re surrounded!” blares a loudspeaker. We manage to get away, and I wander about, utterly lost. I long to escape, but every time the chance arises, a leaden torpor prevents me from taking even a single step. I am petrified, mummified, vitrified. If just one door stands between me and freedom, I am incapable of opening it. Yet that is not my only terror. For I am also the hostage of a mysterious cult, and I fear that my friends will fall into the same trap. I try desperately to warn them, but my dream conforms perfectly with reality. I am unable to utter a word.

  Voice Offstage

  I have known gentler awakenings. When I came to that late-January morning, the hospital ophthalmologist was leaning over me and sewing my right eyelid shut with a needle and thread, just as if he were darning a sock. Irrational terror swept over me. What if this man got carried away and sewed up my left eye as well, my only link to the outside world, the only window to my cell, the one tiny opening of my diving bell? Luckily, as it turned out, I wasn’t plunged into darkness. He carefully packed away his sewing kit in padded tin boxes. Then, in the tones of a prosecutor demanding a maximum sentence for a repeat offender, he barked out: “Six months!” I fired off a series of questioning signals with my working eye, but this man—who spent his days peering into people’s pupils—was apparently unable to interpret a simple look. With a big round head, a short body, and a fidgety manner, he was the very model of the couldn’t-care-less doctor: arrogant, brusque, sarcastic—the kind who summons his patients for 8:00 a.m., arrives at 9:00, and departs at 9:05, after giving each of them forty-five seconds of his precious time. Disinclined to chat with normal patients, he turned thoroughly evasive in dealing with ghosts of my ilk, apparently incapable of finding words to offer the slightest explanation. But I finally discovered why he had put a six-month seal on my eye: the lid was no longer fulfilling its function as a protective cover, and I ran the risk of an ulcerated cornea.

  As the weeks went by, I wondered whether the hospital employed such an ungracious character deliberately—to serve as a focal point for the veiled mistrust the medical profession always arouses in long-term patients. A kind of scapegoat, in other words. If he leaves Berck, which seems likely, who will be left for me to sneer at? I shall no longer have the solitary, innocent pleasure of hearing his eternal question: “Do you see double?” and replying—deep inside—“Yes, I see two assholes, not one.”

  I need to feel strongly, to love and to admire, just as desperately as I need to breathe. A letter from a friend, a Balthus painting on a postcard, a page of Saint-Simon, give meaning to the passing hours. But to keep my mind sharp, to avoid descending into resigned indifference, I maintain a level of resentment and anger, neither too much nor too little, just as a pressure cooker has a safety valve to keep it from exploding.

  And while we’re on the subject, The Pressure Cooker could be a title for the play I may write one day, based on my experiences here. I’ve also thought of calling it The Eye and, of course, The Diving Bell. You already know the plot and the setting. A hospital room in which Mr. L., a family man in the prime of life, is learning to live with locked-in syndrome brought on by a serious cerebrovascular accident. The play follows Mr. L.’s adventures in the medical world and his shifting relationships with his wife, his children, his friends, and his associates from the leading advertising agency he helped to found. Ambitious, somewhat cynical, heretofore a stranger to failure, Mr. L. takes his first steps into distress, sees all the certainties that buttressed him collapse, and discovers that his nearest and dearest are strangers. We could carry this slow transformation to the front seats of the balcony: a voice offstage would reproduce Mr. L.’s unspoken inner monologue as he faces each new situation. All that is left is to write the play. I have the final scene already: The stage is in darkness, except for a halo of light around the bed in center stage. Nighttime. Everyone is asleep. Suddenly Mr. L., inert since the curtain first rose, throws aside sheets and blankets, jumps from the bed, and walks around the eerily lit stage. Then it grows dark again, and you hear the voice offstage—Mr. L.’s inner voice—one last time:

  “Damn! It was only a dream!”

  My Lucky Day

  This morning, with first light barely bathing Room 119, evil spirits descended on my world. For half an hour, the alarm on the machine that regulates my feeding tube
has been beeping out into the void. I cannot imagine anything so inane or nerve-racking as this piercing beep beep beep pecking away at my brain. As a bonus, my sweat has unglued the tape that keeps my right eyelid closed, and the stuck-together lashes are tickling my pupil unbearably. And to crown it all, the end of my urinary catheter has become detached and I am drenched. Awaiting rescue, I hum an old song by Henri Salvador: “Don’t you fret, baby, it’ll be all right.” And here comes the nurse. Automatically, she turns on the TV. A commercial, with a personal computer spelling out the question: “Were you born lucky?”

  Our Very Own Madonna

  When friends jokingly ask whether I have considered a pilgrimage to Lourdes, I tell them I’ve already made the trip. It was the end of the seventies. Joséphine and I were in a relationship that was a little too complicated to weather a traveling vacation together. It turned out to be one of those unstructured holidays that contain as many germs of potential discord as a day has minutes. We set out in the morning without knowing where we would sleep that night (and without knowing how we would reach our unknown destination). For two people to get along on such a trip requires a high degree of tactfulness. Joséphine was the kind of person who was prepared to do what it takes to get her own way. I tend to be like that too. For a whole week, her pale-blue convertible was the theater of an ongoing mobile domestic crisis. I had just finished a hiking trip in Ax-les-Thermes—an incongruous interval in a life devoted to everything except sport! The hike concluded at the Chambre d’Amour, a little beach on the Basque coast where Joséphine’s uncle had a villa. From there, we made a tempestuous and magnificent crossing of the Pyrenees, leaving behind us a long trail of remarks on the order of “First of all, I never said any such thing!”

  The prime bone of this quasi-marital contention was a fat book six or seven hundred pages long, with a black-and-white cover and an intriguing title. Trail of the Snake told the tale of Charles Sobraj, a kind of wayfaring guru who charmed and robbed Western travelers between Bombay and Kathmandu. The story of Sobraj, the half-French, half-Indian “snake” of the title, was true. Apart from that, I am quite unable to provide the slightest detail; it is even possible that my summary is inaccurate. But what I recall perfectly is the spell Charles Sobraj cast over me. On the way back from Andorra, I was still willing to lift my nose from the book to admire a landscape, but by the time we reached the Pic du Midi, in southern France, I refused point-blank to leave the car long enough for the stroll to the observation point. To be fair, a dense yellowish fog had rolled in over the mountain, reducing visibility and the attractions of such a stroll. Nevertheless, Joséphine dumped me there for a couple of hours while she sulked alone among the clouds. Was it to exorcise the serpent’s spell that she insisted on a detour to Lourdes? Since I had never been to this world capital of miracles, I readily agreed. In any case, to my fevered brain, Charles Sobraj had blended into Bernadette, and the waters of the Adour River had mingled with those of the Ganges.

  The next day, after having crossed a mountain pass on the Tour de France route whose incline struck me as exhausting even by car, we rolled into Lourdes. The heat was suffocating. Joséphine was driving; I sat beside her. And Trail of the Snake, swollen and dog-eared, was relegated to the backseat. I had not dared lay a finger on it since morning, Joséphine having decided that my passion for the exotic saga masked a lack of interest in her. It was the height of the pilgrimage season, and the city was jam-packed. Still, I undertook a systematic hunt for a hotel room, only to encounter—depending on the caliber of the hotel—dismissive shrugs or murmurs of “We’re really sorry.” Sweat had glued my shirt to my ribs, and the prospect of a fresh quarrel was looming by the time the receptionist at the Hôtel d’Angleterre—or d’Espagne, or des Balkans, or whatever—informed us of a cancellation, in the portentous tones of a lawyer announcing to a group of heirs the unexpected demise of a rich uncle. Yes, they had a vacancy. I refrained from saying “It’s a miracle,” for instinct told me that in Lourdes you did not joke about such things. The elevator, designed to accommodate stretchers, was vast, and in the shower ten minutes later, I realized that our bathroom was also equipped for the handicapped.

  While Joséphine took her turn in the bathroom, I pounced, clad only in a towel, on that supreme oasis of the thirsty: the minibar. First I downed a half-bottle of mineral water at one swallow. Divine bottle, never will I forget the touch of your glass neck on my parched lips! Then I poured a glass of champagne for Joséphine and a gin and tonic for myself. Having thus performed my barman duties, I was furtively considering a strategic withdrawal to the adventures of Charles Sobraj. But instead of the hoped-for sedative effect, the champagne restored all Joséphine’s tourist zeal. “I want to see the Madonna,” she said, jumping up with her feet together, like François Mauriac in a famous photo.

  So off we went, under a heavy, threatening sky, to see the holy site. We passed an unbroken column of wheelchairs led by volunteers who were clearly experienced at shepherding paraplegics. “Everyone into the basilica if it rains!” trumpeted the nun leading the procession, her headgear whipped by the wind, her rosary clasped firmly in her hand. I surreptitiously studied these invalids, their twisted hands, their closed faces, these small parcels of life hunched in upon themselves. One of them caught my eye, and I ventured a smile. He responded by sticking out his tongue, and I felt myself blush stupidly scarlet, as if caught out in some crime. Meanwhile, Joséphine, in pink sneakers, pink jeans, and pink sweatshirt, strode delightedly ahead through the midst of a somber mass (every French priest who still dressed like a priest seemed to have turned up for the occasion). Joséphine was nearly ecstatic when the chorus of robes took up the words “Appear to us, Madonna, we beg you on our knees,” the chant of her childhood years. So fervent was the atmosphere that a casual observer might have thought himself outside Parc des Princes during a European Cup match.

  A queue half a mile long, chanting Ave Marias, wound across the broad esplanade in front of the entrance to the grotto. I had never seen such a queue, except perhaps outside Lenin’s tomb in Moscow.

  “Listen, there’s no way I’m going to wait in this!”

  “Pity,” Joséphine snapped. “It would do a sinner like you a lot of good!”

  “Not at all. It could even be dangerous. What if someone in perfect health happened to be here when the Madonna appeared? One miracle, and he’d end up paralyzed.”

  A dozen heads turned to see who could have uttered these disrespectful words. “Idiot,” muttered Joséphine. Then a rain shower diverted attention from me. At the very first drops, we witnessed the spontaneous generation of a forest of umbrellas, and the smell of hot dust floated in the air.

  We were borne forward into the underground Basilica of St. Pius X, a gigantic prayer barn where Mass is celebrated from 6:00 a.m. to midnight, with a change of priest every two or three services. I had read in the guidebook that the concrete nave could accommodate several jumbo jets. I followed Joséphine to a bay with empty seats beneath one of the countless echoing loudspeakers that transmitted the ceremony. “Glory be to God in the highest…in the highest…in the highest…” At the elevation of the Host, the man next to me, a well-prepared pilgrim, pulled racegoer’s binoculars from his backpack to watch the proceedings. Other believers had makeshift periscopes of the kind you see at parades. Joséphine’s father had often told me how he started out in life selling these kinds of gadgets outside metro stations. This did not prevent him from becoming a giant of broadcasting. Now he made use of his barker’s skills to describe royal weddings, earthquakes, and prizefights for his audience. Outside, it had stopped raining. The air was cooler. “Shopping,” said Joséphine. Anticipating this eventuality, I had already marked out the main thoroughfare, in which souvenir shops jostled one another as intimately as in an Oriental bazaar, offering the most extravagant smorgasbord of devotional objects.

  Joséphine was a collector: old perfume bottles, rustic canvases complete with cattle (singly or in herd
s), plates of make-believe food of the kind that substitute for menus in Tokyo restaurant windows. In short, during her frequent travels she bought everything unspeakably kitsch she could lay her hands on. In Lourdes, it was love at first sight. There she sat in the window of the fourth shop on the left, surrounded by a jumble of religious medals, Swiss cuckoo clocks, decorated cheese platters, and—apparently waiting just for Joséphine—an adorable stucco bust haloed with winking bulbs, like a Christmas tree decoration.

  “There’s my Madonna!” Joséphine exulted.

  “It’s my present,” I said at once, with no inkling of the exorbitant sum the shopkeeper would soon extort from me (alleging that it was one of a kind). That evening, in our hotel room, we celebrated our acquisition, its flickering holy light bathing us and casting fantastic dancing shadows on the ceiling.

  “Joséphine, I think we’re going to have to split up when we get back to Paris.”

  “Do you think I don’t realize that?”

  “But Jo…”

  She was asleep. She had the gift of falling into instant sheltering slumber when a situation annoyed her. She could take a vacation from life for five minutes or several hours. For a while I watched the wall behind our pillows jump into and out of darkness. What demon could have induced people to line a whole room with orange fabric?