The Diving Bell and the Butterfly

"The Diving Bell and the Butterfly" by Jean-Dominique Bauby

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

Acclaim forJean-Dominique Bauby's "The Diving Bell and the Butterfly"

"The sentences soar, unburdened by self-pity or despair, and the progression of short, lyrical chapters begin to resemble the beating of wings."

— The New Yorker

"An admirable testament to the unkillable self, to the spirit that insists on itself so vehemently that it ultimately transcends and escapes the prison of the body."

— Francine Prose, Newsday

"The most remarkable memoir of our time—perhaps of any time."

— Cynthia Ozick

"Shattering eloquence…. The real glory here is Bauby himself, whose spirit asserts itself again and again in the words that survive him."

— Miami Herald

"To read this most extraordinary of narratives is to discover the luminosity within a courageous man's mind…. Incomparable."

— Sherwin B. Nuland, M.D.

"Mesmerizing."

— Newsweek

"Read this book and fall back in love with life…. The prose…is as light as the sprightliest humor, as pungent as the scent of cooking apricots, as vigorous as the step of a young man setting out on a first date."

— Edmund White

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About the Author

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.