On December 8, 1995, the editor-in-chief of Elle magazine, Jean-Dominique Bauby, suffered a stroke and lapsed into a coma. He awoke 20 days later, mentally aware of his surroundings but physically paralyzed with the exception of some movement in his head and eyes (one of which had to be sewn up due to an irrigation problem).
In his nearly immobile state, Jean-Dominique Bauby wrote a book by communicating by blinking his left eyelid. A transcriber repeatedly recited a French language frequency-ordered alphabet (E, S, A, R, I, N, T, U, L, etc.), until Bauby blinked to choose the next letter.
The book took about 200,000 blinks to write and an average word took approximately two minutes. He did this for four hours a day and it took about 10 months. The book chronicles everyday events for a person with locked-in syndrome.
Bauby died of pneumonia two days after the book was published.
Here are the first 15 pages to give you a taste. It’s an amazing read.
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 Pairs-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 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 direction, 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?
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 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 downgrading 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 sentences. 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 informers 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.
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 around 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 was 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. Al 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 wandering.
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 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 hwen seven brothers of the same order had their throats cut by Islamic fanatics, my earrs 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.
That was wonderful, no? I think you should find the used version of this book or watch the movie. The movie is pretty sad but it’s inspiring in its strange ways. It helps you appreciate life. So go out there and LIVE WHILE YOU CAN. 🙂