Jean-dominique Bauby (5 page)

Through a Glass, Darkly

Hunched in my wheelchair, I watch my children surreptitiously as their mother pushes me down the hospital corridor. While I have become something of a zombie father, Théophile and Céleste are very much flesh and blood, energetic and noisy. I will never tire of seeing them walk alongside me, just walking, their confident expressions masking the unease weighing on their small shoulders. As he walks, Théophile dabs with a Kleenex at the thread of saliva escaping my closed lips. His movements are tentative, at once tender and fearful, as if he were dealing with an animal of unpredictable reactions. As soon as we slow down, Céleste cradles my head in her bare arms, covers my forehead with noisy kisses, and says over and over, “You’re my dad, you’re my dad,” as if in incantation.

Today is Father’s Day. Until my stroke, we had felt no need to fit this made-up holiday into our emotional calendar. But today we spend the whole of the symbolic day together, affirming that even a rough sketch, a shadow, a tiny fragment of a dad is still a dad. I am torn between joy at seeing them living, moving, laughing, or crying for a few hours, and fear that the sight of all these sufferings—beginning with mine—is not the ideal entertainment for a boy of ten and his eight-year-old sister. However, we have made the wise collective decision not to sugarcoat anything.

We install ourselves at the Beach Club—my name for a patch of sand dune open to sun and wind, where the hospital has obligingly set out tables, chairs, and umbrellas, and even planted a few buttercups, which grow in the sand amid the weeds. In this neutral zone on the beach, a transition between hospital and everyday life, one could easily imagine some good fairy turning every wheelchair into a chariot. “Want to play hangman?” asks Théophile, and I ache to tell him that I have enough on my plate playing quadriplegic. But my communication system disqualifies repartee: the keenest rapier grows dull and falls flat when it takes several minutes to thrust it home. By the time you strike, even you no longer understand what had seemed so witty before you started to dictate it, letter by letter. So the rule is to avoid impulsive sallies. It deprives conversation of its sparkle, all those gems you bat back and forth like a ball—and I count this forced lack of humor one of the great drawbacks of my condition.

But we can certainly play hangman, the national preteen sport. I guess a letter, then another, then stumble on the third. My heart is not in the game. Grief surges over me. His face not two feet from mine, my son Théophile sits patiently waiting—and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe, warm body tight against me. There are no words to express it. My condition is monstrous, iniquitous, revolting, horrible. Suddenly I can take no more. Tears well and my throat emits a hoarse rattle that startles Théophile. Don’t be scared, little man. I love you. Still engrossed in the game, he moves in for the kill. Two more letters: he has won and I have lost. On a corner of the page he completes his drawing of the gallows, the rope, and the condemned man.

Meanwhile, Céleste is doing cartwheels on the sand. Perhaps some compensatory mechanism is at work, for ever since the act of blinking became the equivalent of weight lifting for me, she has turned into a genuine acrobat. With the flexibility of a cat, she does a back flip, a handstand, a somersault, and a whole series of daring leaps and twists. She has recently added tightrope walker to the long list of professions she envisions for her future (after schoolteacher, supermodel, and florist). With the onlookers at the Beach Club won over by her display, our budding entertainer now launches into a song-and-dance act, to the great dismay of Théophile, who more than anything else hates drawing attention to himself. As shy and reclusive as his sister is outgoing, he wholeheartedly hated me the day I sought and obtained permission to ring the school bell for the first day of class. No one can predict whether Théophile will be happy; but it is certain that he will live in the shadows.

I wonder how Céleste has managed to accumulate such a repertoire of sixties songs. Johnny Hallyday, Sylvie Vartan, Sheila, Clo-Clo François, Françoise Hardy—all the stars of that golden era. Alongside universally familiar numbers, Céleste sings forgotten hits that trail clouds of nostalgia in their wake. Not since I was twelve, when I endlessly played it on my record player, have I heard the Clo-Clo François 45-rpm “Poor Little Rich Girl.” Yet as soon as Céleste begins it—somewhat off-key—every note, every verse, every detail of backup and orchestration, comes back to me with startling precision, right down to the sound of the sea that filters through the opening bars. Once again I see the album cover, the singer’s photo, his striped button-down shirt. I longed for a shirt like his, but for me it was unattainable: my mother considered it tacky. I even relive the Saturday afternoon when I bought the record. My father’s cousin kept a tiny record store in the lower level of the Gare du Nord. He was a good-natured giant with a yellow Gitane cigarette dangling eternally from the corner of his mouth. “Poor little rich girl, alone on the beach, alone and so rich…” Time marches on, and people have since disappeared. Mama died first. Next, Clo-Clo François was electrocuted. Then my father’s gentle cousin, whose business had gone downhill, gave up the ghost, leaving an inconsolable tribe of children and animals behind. My closet is now full of button-down shirts, and I believe the small record store now sells chocolates. Since the Berck train leaves from the Gare du Nord, perhaps one day I shall ask someone to check on the way through.

“Well done, Céleste!” cries Sylvie. “Maman, I’m bored,” Théophile at once complains. It is 5:00 p.m. The hospital chimes, which usually strike me as cheerful, assume funereal tones as the time for farewells draws near. Wind begins to whip up the sand. The tide has gone out so far that swimmers look like tiny dots on the horizon. The children run to stretch their legs on the beach once more before leaving, and Sylvie and I remain alone and silent, her hand squeezing my inert fingers. Behind dark glasses that reflect a flawless sky, she softly weeps over our shattered lives.

We return to my room for the final leave-taking. “How do you feel, Pop?” asks Théophile. His pop’s throat is tight, his hands are sunburned, and his bottom hurts from sitting on it too long, but he has had a wonderful day. And what about you kids, what will you carry back from this field trip into my endless solitude?

They have left. The car will already be speeding toward Paris. I sink into contemplation of a drawing brought by Céleste, which we immediately pinned to the wall: a kind of two-headed fish with blue-lashed eyes and multicolored scales. But what is interesting in the drawing is its overall shape, which bears a disconcerting resemblance to the mathematical symbol for infinity. Sun streams in through the window. It is the hour when its rays fall straight upon my pillow. In the commotion of departure, I forgot to signal for the curtains to be drawn. A nurse will be in before the world comes to an end.

Paris

I am fading away. Slowly but surely. Like the sailor who watches the home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memory.

Yet since taking up residence in my diving bell, I have made two brief trips to the world of Paris medicine to hear the verdict pronounced on me from the diagnostic heights. On the first occasion, my emotions got the better of me when my ambulance happened to pass the ultramodern high-rise where I once followed the reprehensible calling of editor in chief of a famous women’s magazine. First I recognized the building next door—a sixties antiquity, now scheduled to be demolished, according to the billboard out front. Then I saw our own glass facade, airily reflecting clouds and airplanes. On the sidewalk were a few of those familiar-looking faces that one passes every day for ten years without ever being able to put a name to them. When I thought I glimpsed someone I actually knew, walking behind a woman with her hair in a bun and a burly man in work clothes, I nearly unscrewed my head to see. Perhaps someone had caught sight of my ambulance from our sixth-floor offices. I shed a few tears as we passed the corner café where I used to drop in for a bite. I can weep quite discreetly. People think my eye is watering.

The second time I went to Paris, four months later, I was unmoved by it. The streets were decked out in summer finery, but for me it was still winter, and what I saw through the ambulance windows was just a movie background. Filmmakers call the process a “rear-screen projection,” with the hero’s car speeding along a road that unrolls behind him on a studio wall. Hitch-cock films owe much of their poetry to the use of this process in its early, unperfected stages. My own crossing of Paris left me indifferent. Yet nothing was missing—housewives in flowered dresses and youths on roller skates, revving buses, messengers cursing on their scooters. The Place de l’Opéra, straight out of a Dufy canvas. The treetops foaming like surf against glass building fronts, wisps of cloud in the sky. Nothing was missing, except me. I was elsewhere.

The Vegetable

“On June 8 it will be six months since my new life began. Your letters are accumulating on the dresser, your drawings on my wall, and since I cannot hope to answer each one of you, I have decided to issue these samizdat bulletins to report on my life, my progress, and my hopes. At first I refused to believe that anything serious had happened. In my semiconscious state following the coma, I thought I would shortly be back in my Paris stamping grounds, with just a couple of canes to help me along.”

Those were the first words of the first mailing of my monthly letter from Berck, which I decided in late spring to send to my friends and associates. Addressed to some sixty people, that first bulletin caused a mild stir and repaired some of the damage caused by rumor. The city, that monster with a hundred mouths and a thousand ears, a monster that knows nothing but says everything, had written me off. At the Café de Flore, one of those base camps of Parisian snobbery that send up rumors like flights of carrier pigeons, some close friends of mine overheard a conversation at the next table. The gossipers were as greedy as vultures who have just discovered a disemboweled antelope. “Did you know that Bauby is now a total vegetable?” said one. “Yes, I heard. A complete vegetable,” came the reply. The word “vegetable” must have tasted sweet on the know-it-all’s tongue, for it came up several times between mouthfuls of Welsh rarebit. The tone of voice left no doubt that henceforth I belonged on a vegetable stall and not to the human race. France was at peace; one couldn’t shoot the bearers of bad news. Instead I would have to rely on myself if I wanted to prove that my IQ was still higher than a turnip’s.

Thus was born a collective correspondence that keeps me in touch with those I love. And my hubris has had gratifying results. Apart from an irrecoverable few who maintain a stubborn silence, everybody now understands that he can join me in my diving bell, even if sometimes the diving bell takes me into unexplored territory.

I receive remarkable letters. They are opened for me, unfolded, and spread out before my eyes in a daily ritual that gives the arrival of the mail the character of a hushed and holy ceremony. I carefully read each letter myself. Some of them are serious in tone, discussing the meaning of life, invoking the supremacy of the soul, the mystery of every existence. And by a curious reversal, the people who focus most closely on these fundamental questions tend to be people I had known only superficially. Their small talk had masked hidden depths. Had I been blind and deaf, or does it take the harsh light of disaster to show a person’s true nature?

Other letters simply relate the small events that punctuate the passage of time: roses picked at dusk, the laziness of a rainy Sunday, a child crying himself to sleep. Capturing the moment, these small slices of life, these small gusts of happiness, move me more deeply than all the rest. A couple of lines or eight pages, a Middle Eastern stamp or a suburban postmark…I hoard all these letters like treasure. One day I hope to fasten them end to end in a half-mile streamer, to float in the wind like a banner raised to the glory of friendship.

It will keep the vultures at bay.

Outing

Stifling heat. But I would like to get out. It has been weeks, perhaps months, since I last left the hospital grounds for my wheelchair ride on the promenade along the shore. Last time it was still winter. Icy gusts whipped up clouds of sand, and the few thickly muffled strollers leaned purposefully into the wind. Today I would like to see Berck in summer attire, to see the beach—which was deserted all winter—packed with carefree July crowds. To reach the street from Sorrel, one has to cross three parking lots, whose rough, uneven surface sorely tries the buttocks. I had forgotten how grueling this route was, with its puddles and its potholes, its cars inconsiderately parked on the sidewalks.

And then at last the sea. Beach umbrellas, sailboats, and a human rampart of swimmers complete the postcard effect. A vacation sea, gentle and unthreatening. Nothing like the steel reflection visible from the hospital terraces. And yet these are the same troughs, the same swells, the same misty horizon.

We thread our way through a moving forest of ice-cream cones and crimson thighs. Easy to imagine licking a drop of vanilla from young, sun-reddened skin…No one pays me any real attention. Wheelchairs are as commonplace at Berck as Ferraris at Monte Carlo, and poor dislocated wheezing devils like me are everywhere. This afternoon, Claude (the young woman to whom I am dictating this book) and Brice are with me. I have known Claude for two weeks, Brice for twenty-five years. It is strange to hear my old partner in crime telling Claude about me. My quick temper, my love of books, my immoderate taste for good food, my red convertible—nothing is left out. Like a storyteller exhuming the legends of a lost civilization. “I didn’t realize you were like that,” says Claude. My present life is divided between those who knew me before and all the others. What kind of person will those who know me now think I was? I do not even have a photo to show them.

We stop at the top of a big stairway that goes down to the beach bar and to a long line of pastel-colored cabanas. The stairs remind me of the entrance to the Porte d’Auteuil metro station in Paris. I used to climb them as a child when returning from the old Molitor swimming pool, my eyes red with chlorine. The pool was demolished a few years ago. As for stairs, they are now just dead ends for me.

“Want to turn back?” asks Brice. I protest, shaking my head vigorously. No question of turning around until we have reached our real goal. We move quickly past an old-fashioned wooden carousel, whose shrieking calliope pierces my eardrums. We pass a well-known hospital character we call “Fangio.” Tall, dark-haired, athletic-looking, Fangio is rigid as a poker. Unable to sit, he is permanently condemned to either a vertical or a horizontal position. He gets about at amazing speed, lying flat on his stomach on a vehicle he operates himself, parting the crowds with yells of “Look out—here comes Fangio!” I know who he is, but who is he really? I have no idea. Finally we reach the farthest point of our journey, the very end of the promenade. I have not insisted on coming all this way just to gaze at the flawless seascape. I have come to gorge on the aromas emanating from a modest shack by the path leading away from the beach. Claude and Brice bring me to a halt downwind. My nostrils quiver with pleasure as they inhale a robust odor—intoxicating to me but one that most mortals cannot abide. “Ooh!” says a disgusted voice behind me. “What a stench!”

But I never tire of the smell of french fries.