In December 1995, Jean-Dominique Bauby, the 43-year-old editor of French Elle, suffered a massive stroke that left him permanently paralyzed, a victim of "locked in syndrome." Once known for his gregariousness and wit, Bauby now finds himself imprisoned in an inert body, able to communicate only by blinking his left eye. The miracle is that in doing so he was able to compose this stunningly eloquent memoir.
In a voice that is by turns wistful and mischievous, angry and sardonic, Bauby gives us a celebration of the liberating power of consciousness: what it is like to spend a day with his children, to imagine lying in bed beside his wife, to conjure up the flavor of delectable meals even as he is fed through at tube. Most of all, this triumphant book lets us witness an indomitable spirit and share in the pure joy of its own survival.
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Knopf Group E-Books
November 19, 2007
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Excerpt from The Diving Bell and the Butterfly by Jean-Dominique Bauby
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 cocoon 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. That day 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 last time I saw my father, I shaved him. It was the week of my stroke. He was unwell, so I had spent the night at his small apartment near the Tuileries gardens in Paris. In the morning, after bringing him a cup of milky tea, I decided to rid him of his few days' growth of beard. The scene has remained engraved in my memory.
Hunched in the red-upholstered armchair where he sifts through the day's newspapers, my dad bravely endures the rasp of the razor attacking his loose skin. I wrap a big towel around his shriveled neck, daub thick lather over his face, and do my best not to irritate his skin, dotted here and there with small dilated capillaries. From age and fatigue, his eyes have sunk deep into their sockets, and his nose looks too prominent for his emaciated features. But, still flaunting the plume of hair --- now snow white --- that has always crowned his tall frame, he has lost none of his splendor.