Contents
Title Page
Dedication
About the Author
Prologue
The Wheelchair
Prayer
Bathtime
The Alphabet
The Empress
Cinecittà
Tourists
The Sausage
Guardian Angel
The Photo
Yet Another Coincidence
The Dream
Voice Offstage
My Lucky Day
Our Very Own Madonna
Through a Glass, Darkly
Paris
The Vegetable
Outing
Twenty to One
The Duck Hunt
Sunday
The Ladies of Hong Kong
The Message
At the Wax Museum
The Mythmaker
“A Day in the Life”
Season of Renewal
Acclaim for Jean-Dominique Bauby’s The Diving Bell and the Butterfly
Copyright
For my children, Théophile and Céleste…
And my deepest gratitude to Claude Mendibil,
whose all-important contribution to these pages
will become clear as my story unfolds
Jean-Dominique Bauby
The Diving Bell and the Butterfly
The editor-in-chief of French Elle, Jean-Dominique Bauby suffered a stroke that resulted in locked-in syndrome when he was 43 years old. He died just two days after the French publication of his book.
Prologue
Through the frayed curtain at my window, a wan glow announces the break of day. My heels hurt, my head weighs a ton, and something like a giant invisible diving bell holds my whole body prisoner. My room emerges slowly from the gloom. I linger over every item: photos of loved ones, my children’s drawings, posters, the little tin cyclist sent by a friend the day before the Paris—Roubaix bike race, and the IV pole hanging over the bed where I have been confined these past six months, like a hermit crab dug into his rock.
No need to wonder very long where I am, or to recall that the life I once knew was snuffed out Friday, the eighth of December, last year.
Up until then, I had never even heard of the brain stem. I’ve since learned that it is an essential component of our internal computer, the inseparable link between the brain and the spinal cord. I was brutally introduced to this vital piece of anatomy when a cerebrovascular accident took my brain stem out of action. In the past, it was known as a “massive stroke,” and you simply died. But improved resuscitation techniques have now prolonged and refined the agony. You survive, but you survive with what is so aptly known as “locked-in syndrome.” Paralyzed from head to toe, the patient, his mind intact, is imprisoned inside his own body, unable to speak or move. In my case, blinking my left eyelid is my only means of communication.
Of course, the party chiefly concerned is the last to hear the good news. I myself had twenty days of deep coma and several weeks of grogginess and somnolence before I truly appreciated the extent of the damage. I did not fully awake until the end of January. When I finally surfaced, I was in Room 119 of the Naval Hospital at Berck-sur-Mer, on the French Channel coast—the same Room 119, infused now with the first light of day, from which I write.
An ordinary day. At seven the chapel bells begin again to punctuate the passage of time, quarter hour by quarter hour. After their night’s respite, my congested bronchial tubes once more begin their noisy rattle. My hands, lying curled on the yellow sheets, are hurting, although I can’t tell if they are burning hot or ice cold. To fight off stiffness, I instinctively stretch, my arms and legs moving only a fraction of an inch. It is often enough to bring relief to a painful limb.
My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas’s court.
You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.
Enough rambling. My main task now is to compose the first of these bedridden travel notes so that I shall be ready when my publisher’s emissary arrives to take my dictation, letter by letter. In my head I churn over every sentence ten times, delete a word, add an adjective, and learn my text by heart, paragraph by paragraph.
Seven-thirty. The duty nurse interrupts the flow of my thoughts. Following a well-established ritual, she draws the curtain, checks tracheostomy and drip feed, and turns on the TV so I can watch the news. Right now a cartoon celebrates the adventures of the fastest frog in the West. And what if I asked to be changed into a frog? What then?
The Wheelchair
I had never seen so many white coats in my little room. Nurses, orderlies, physical therapist, occupational therapist, psychologist, neurologist, interns, and even the department head—the whole hospital had turned out for the event. When they first burst in, pushing the conveyance ahead of them, I thought it meant that I was being ejected to make room for a new patient. I had already been at Berck a few weeks and was daily drawing nearer to the shores of awareness, but I still could not imagine any connection between a wheelchair and me.
No one had yet given me an accurate picture of my situation, and I clung to the certainty, based on bits and pieces I had overheard, that I would very quickly recover movement and speech.
Indeed, my roving mind was busy with a thousand projects: a novel, travel, a play, marketing a fruit cocktail of my own invention. (Don’t ask for the recipe; I have forgotten it.) They immediately dressed me. “Good for the morale,” pronounced the neurologist in sententious tones. And in truth I would have been pleased to trade my yellow nylon hospital gown for a plaid shirt, old pants, and a shapeless sweater—except that it was a nightmare to put them on. Or rather to watch the clothes manipulated, after endless contortions, over these uncooperative deadweight limbs, which serve me only as a source of pain.
When I was finally dressed, the ritual could begin. Two attendants seized me by the shoulders and feet, lifted me off the bed, and dumped me unceremoniously into the wheelchair. I had graduated from being a patient whose prognosis was uncertain to an official quadriplegic. They didn’t quite applaud, but they came close. My caretakers made me travel the length and breadth of the hospital floor, to make certain that the seated position did not trigger uncontrollable spasms, but I was too devastated by this brutal down-grading of my future hopes to take much notice. They had to place a special cushion behind my head: it was wobbling about like the head of one of those African women upon removal of the stack of rings that has been stretching her neck for years. “You can handle the wheelchair,” said the occupational therapist, with a smile intended to make the remark sound like good news, whereas to my ears it had the ring of a life sentence. In one flash I saw the frightening truth. It was as blinding as an atomic explosion and keener than a guillotine blade. They all left.
As three orderlies laid me back down, I thought of movie gangsters struggling to fit the slain informer’s body into the trunk of their car. The wheelchair sat abandoned in a corner, with my clothes tossed over its dark-blue plastic backrest. Before the last white coat left the room, I signaled my wish to have the TV turned on, low. On the screen was my father’s favorite quiz show. Since daybreak, an unremitting drizzle had been streaking my windows.
Prayer
Oddly enough, the shock of the wheelchair was helpful. Things became clearer. I gave up my grandiose plans, and the friends who had built a barrier of affection ar
ound me since my catastrophe were able to talk freely. With the subject no longer taboo, we began to discuss locked-in syndrome. First of all, it is very rare. It is small consolation, but the chances of being caught in this hellish trap are about as likely as those of winning the lottery. At Berck, only two of us were locked in, and my own case was not classic. I am able to swivel my head, which is not supposed to be part of the clinical picture. Since most victims are relegated to a vegetable existence, the evolution of the disease is not well understood. All that is known is that if the nervous system makes up its mind to start working again, it does so at the speed of a hair growing from the base of the brain. So it is likely that several years will go by before I can expect to wiggle my toes.
In fact, it is in my respiratory passages that I can hope for improvement. In the long term, I can hope to eat more normally: that is, without the help of a gastric tube. Eventually, perhaps I will be able to breathe naturally, without a respirator, and muster enough breath to make my vocal cords vibrate.
But for now, I would be the happiest of men if I could just swallow the overflow of saliva that endlessly floods my mouth. Even before first light, I am already practicing sliding my tongue toward the rear of my palate in order to provoke a swallowing reaction. What is more, I have dedicated to my larynx the little packets of incense hanging on the wall, amulets brought back from Japan by pious globe-trotting friends. Just one of the stones in the thanksgiving monument erected by my circle of friends during their wanderings. In every corner of the world, the most diverse deities have been solicited in my name. I try to organize all this spiritual energy. If they tell me that candles have been burned for my sake in a Breton chapel, or that a mantra has been chanted in a Nepalese temple, I at once give each of the spirits invoked a precise task. A woman I know enlisted a Cameroon holy man to procure me the goodwill of Africa’s gods: I have assigned him my right eye. For my hearing problems I rely on the relationship between my devout mother-in-law and the monks of a Bordeaux brotherhood. They regularly dedicate their prayers to me, and I occasionally steal into their abbey to hear their chants fly heavenward. So far the results have been unremarkable. But when seven brothers of the same order had their throats cut by Islamic fanatics, my ears hurt for several days. Yet all these lofty protections are merely clay ramparts, walls of sand, Maginot lines, compared to the small prayer my daughter, Céleste, sends up to her Lord every evening before she closes her eyes. Since we fall asleep at roughly the same hour, I set out for the kingdom of slumber with this wonderful talisman, which shields me from all harm.
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.