We've all got our idiosyncrasies when it comes to writing--a special chair we have to sit in, a certain kind of yellow paper we absolutely must use. To create this tremendously affecting memoir, Jean-Dominique Bauby used the only tool available to him--his left eye--with which he blinked out its short chapters, letter by letter. Two years ago, Bauby, then the 43-year-old editor-in-chief of Elle France, suffered a rare stroke to the brain stem; only his left eye and brain escaped damage. Rather than accept his "locked in" situation as a kind of death, Bauby ignited a fire of the imagination under himself and lived his last days--he died two days after the French publication of this slim volume--spiritually unfettered. In these pages Bauby journeys to exotic places he has and has not been, serving himself delectable gourmet meals along the way (surprise: everything's ripe and nothing burns). In the simplest of terms he describes how it feels to see reflected in a window "the head of a man who seemed to have emerged from a vat of formaldehyde."


From Library Journal
On December 8 1995, Elle magazine editor-in-chief 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 left eye. Bauby had Locked-in-Syndrome, a rare condition caused by stroke damage to the brain stem. Eye movements and blinking a code representing letters of the alphabet became his sole means of communication. It is also how he dictated this warm, sad, and extraordinary memoir. Bauby's thoughts on the illness, the hospital, family, friends, career, and life before and after the stroke appear with considerable humor and humanity. Actor Rene Auberjonois's narration adds to the poignancy of the story. Sadly, Bauby died of his condition in 1997. This is a fine companion to works like Lucy Grealy's Autobiography of a Face (LJ 7/94). For all audio collections.?Stephen L. Hupp, Univ. of Pittsburgh at Johnstown Lib.Copyright 1997 Reed Business Information, Inc.


From The New England Journal of Medicine, September 17, 1998
The locked-in syndrome is a complication of a cerebrovascular accident in the base of the pons. The patient is alert and fully conscious but quadriplegic, with lower-cranial-nerve palsies. Only vertical movements of the eyes and blinking are possible. At the age of 43, Jean-Dominique Bauby, who was editor of Elle and a robust bon vivant, suffered such a stroke. After 20 days in a deep coma, he gradually regained consciousness. His right eyelid was sutured shut to prevent corneal ulcerations, he was fed through a gastric tube, he drooled uncontrollably, he breathed through a tracheostomy tube, his urine drained from a catheter, and his bottom was wiped by others. He felt as if he were trapped in a diving bell, but his mind was free as a butterfly. Bauby wrote The Diving Bell and the Butterfly solely by blinking his left eye in response to the reading of an alphabet, arranged according to the frequency with which each letter occurs in French (E, S, A, R, I,... W). A friend read off the letters, pausing when Bauby blinked. Letters laboriously became words, and then sentences. I brought this book along on an airplane that took me to a meeting in a distant city. Reading it made me hope that air traffic would delay our arrival. It is a remarkable tribute to the human spirit -- a book that will inspire any physician, medical student, nurse, or patient. There is no self-pity and no thought of physician-assisted suicide. The tone is as ironic and dry as perhaps only the French can be. In a seaside hospital, Bauby, imprisoned in his paralyzed body, recounts his days. He notes that a stroke such as his is usually fatal, but "improved resuscitation techniques have prolonged and refined the agony." Now, instead of directing one of France's leading fashion magazines, he is strapped in a wheelchair, completely dependent on others for the simplest demands of life: shut the door, roll me over, fluff up a pillow. "A domestic event as commonplace as washing can trigger the most varied emotions." And then there was the boor who, with a conclusive "Good night," turned off the Bordeaux-Munich soccer game at halftime and left. Bauby's attendants dressed him not in hospital garb, but in his own clothes ("Good for the morale," according to the neurologist). Bauby comments, "If I must drool, I may as well drool on cashmere." He is, as he says, a "voiceless parrot" who has made his nest in a dead-end corridor of the neurology department. When the stretcher-bearer who returns him to his room leaves with a hearty "Bon appetit!" the effect on Bauby is the same as "saying `Merry Christmas' on August 15." Fed by two or three bags of brownish fluid instilled into a gastric tube, Bauby recalls his culinary skills -- boeuf en gelee and homemade sausage -- and melon, red fruit, and oysters, but above all, sausage. He imagines spending a day with his children, lying in bed beside his lover, and flying to Hong Kong, and he dreams that Radovan Karadzic, leader of the Bosnian Serbs, is performing a tracheotomy on him. In the Cafe de Flore, noxious gossip from the lower depths of Parisian snobbery poisons the air: "Did you know that Bauby is now a total vegetable?" Bauby, "to prove that my IQ was still higher than a turnip's," begins a remarkable correspondence, not by pen but by blinks. "The arrival of the mail [had] the character of a hushed and holy ceremony." Every sentence of this arduously written book is a jewel burnished by a rare disease and still rarer intelligence. Bauby died only two days after the publication of his book in France. Reviewed by Robert S. Schwartz, M.D.
Copyright © 1998 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.


The New York Times Book Review, Thomas Mallon
His startling book from Berck-sur-Mer is best experienced by remaining mindful of having the luck to be reading it between the many blinks of one's eyes. I myself read most of Bauby's words during an uncomfortable train ride, astonished and finally humbled that he should be relieving my feelings of confinement.


From AudioFile
In 1995 the editor-in-chief of the French version of ELLE magazine suffered a debilitating stroke of the brain stem, which left him a paraplegic, able to communicate only by slight facial expressions. Painstakingly, Bauby dictated this journal--one letter at a time--of what it's like to have "locked-in syndrome." As eloquent as Bauby's phrases is Rene Auberjonois's performance of them. The slightest tinge of a French accent brings to life the author's lyrical language now made silent by a freak tragedy. Auberjonois also relays Bauby's somber emotions and memories, switching tone effortlessly to express the witty anecdotal reflections that make this an inspiring audio production. R.A.P. (c)AudioFile, Portland, Maine


From Booklist
On December 8, 1995, at the very beginning of a weekend with his 10-year-old son, Bauby, editor-in-chief of the world's most famous fashion magazine, Elle, suffered a massive stroke. When he emerged from coma more than a month later, his mind was perfectly clear, but he could move only his left eyelid. So he remained until his death on March 9, 1997. In the interim, however, with the help of an alphabet arranged in the order of the letters' frequency in French (e occurs most frequently and so appears first) and recited until Bauby signaled the desired letter with a blink, Bauby dictated, letter by letter, the 28 tiny personal essays of this book. They demonstrate indisputably Bauby's irrepressible love of life. Although trapped as if in a diving bell by his situation, "my mind takes flight like a butterfly," he says, and he ranges through memories, dreams, and reflections, keeping his wits sharp. Never maudlin or religiose, his observations become inspirational, in the manner of much literature about enduring physical adversity, only after they have impressed us--just like good "regular" literature--with their author's strength, affability, curiosity, and gusto. They are a best-seller in France, and with a 100,000-copy first printing, Knopf hopes they will do as well here. Ray Olson


From Kirkus Reviews
``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.'' Thus begins the remarkable testimony of Bauby, who was editor-in-chief of French Elle when he was felled by a stroke in December 1995. The stroke left every inch of his body paralyzed- -except for his left eyelid, which he could blink. But his mind was fully alive, capable of the whole range of thought and feeling from dry wit to sadness to tenderness, and by blinking in response to letters recited by an amanuensis, he dictated ``these bedridden travel notes'' about being locked inside his body. It shows that his rich heart, too, was alive and beating, but it finally gave way in March of this year, two days after the French publication of his book. (First printing of 100,000) -- Copyright ©1997, Kirkus Associates, LP. All rights reserved.


Book Description
In 1995, Jean-Dominique Bauby was the editor-in-chief of French Elle, the father of two young childen, a 44-year-old man known and loved for his wit, his style, and his impassioned approach to life. By the end of the year he was also the victim of a rare kind of stroke to the brainstem. After 20 days in a coma, Bauby awoke into a body which had all but stopped working: only his left eye functioned, allowing him to see and, by blinking it, to make clear that his mind was unimpaired. Almost miraculously, he was soon able to express himself in the richest detail: dictating a word at a time, blinking to select each letter as the alphabet was recited to him slowly, over and over again. In the same way, he was able eventually to compose this extraordinary book.By turns wistful, mischievous, angry, and witty, Bauby bears witness to his determination to live as fully in his mind as he had been able to do in his body. He explains the joy, and deep sadness, of seeing his children and of hearing his aged father's voice on the phone. In magical sequences, he imagines traveling to other places and times and of lying next to the woman he loves. Fed only intravenously, he imagines preparing and tasting the full flavor of delectable dishes. Again and again he returns to an "inexhaustible reservoir of sensations," keeping in touch with himself and the life around him.Jean-Dominique Bauby died two days after the French publication of The Diving Bell and the Butterfly. This book is a lasting testament to his life.


Language Notes
Text: English, French (translation)


From the Publisher
"Was it Hemingway who defined grace under pressure? No matter who said it, the words have never been more pertinent than in speaking of this heroic book, dictated against the worst imaginable adversities. Although every word cost the author a superhuman effort, the prose is not sickbed telegraphese but rather as light as the sprightliest humor, as pungent as the taste of cooking apricots, as vigorous as the step of a young man setting out on a first date. Read this book and fall back in love with life."
-- Edmund White"To read this most extraordinary of narratives is to discover the luminosity within a courageous man's mind. Locked into his own world but not locked out of ours, []Jean-Dominique Bauby[] explores images, memories and an entire landscape of fantasy and love. His incomparable final gift to us is a heartbreaking and yet glorious testament to the wrenching beauty of the human spirit."
-- Sherwin B. Nuland, M.D."As riveting as a narrative from an explorer of deep space, this communication from a mind imprisoned in an unresponsive body is remarkable for its utter lack of self-pity or sentimentality. Though 'locked in' the author's consciousness freely roams through worlds of memory, fantasy, sense, impression, and contemplation of the human condition. An unforgettable read."
-- Andrew Weil"This heartbreaking story by a uniquely gifted writer is about transforming pain into creativity, human despair into literary miracle."
-- Elie Wiesel


From the Inside Flap
In 1995, Jean-Dominique Bauby was the editor-in-chief of French Elle, the father of two young childen, a 44-year-old man known and loved for his wit, his style, and his impassioned approach to life. By the end of the year he was also the victim of a rare kind of stroke to the brainstem.  After 20 days in a coma, Bauby awoke into a body which had all but stopped working: only his left eye functioned, allowing him to see and, by blinking it, to make clear that his mind was unimpaired. Almost miraculously, he was soon able to express himself in the richest detail: dictating a word at a time, blinking to select each letter as the alphabet was recited to him slowly, over and over again. In the same way, he was able eventually to compose this extraordinary book.

By turns wistful, mischievous, angry, and witty, Bauby bears witness to his determination to live as fully in his mind as he had been able to do in his body. He explains the joy, and deep sadness, of seeing his children and of hearing his aged father's voice on the phone. In magical sequences, he imagines traveling to other places and times and of lying next to the woman he loves. Fed only intravenously, he imagines preparing and tasting the full flavor of delectable dishes. Again and again he returns to an "inexhaustible reservoir of sensations," keeping in touch with himself and the life around him.

Jean-Dominique Bauby died two days after the French publication of The Diving Bell and the Butterfly.

This book is a lasting testament to his life.


About the Author
Jean-Dominique Bauby was born in France in 1952. He attended school in Paris. After working as a journalist for a number of years, Bauby became the editor-in-chief of Elle magazine in Paris in 1991.

On December 8, 1995 he had a stroke which left him with the condition known as locked-in syndrome. Bauby died on March 9, 1997. He was the father of two children, Theophile and Celeste.


From the Hardcover edition.


Excerpt. © Reprinted by permission. All rights reserved.
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 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 Photo

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.

All around us, a lifetime's clutter has accumulated; his room calls to mind one of those old persons' attics whose secrets only they can know --- a confusion of old magazines, records no longer played, miscellaneous objects. Photos from all the ages of man have been stuck into the frame of a large mirror. There is dad, wearing a sailor suit and playing with a hoop before the Great War; my eight-year-old daughter in riding gear; and a black-and-white photo of myself on a miniature-golf course. I was eleven, my ears protruded, and I looked like a somewhat simpleminded schoolboy. Mortifying to realize that at that age I was already a confirmed dunce.

I complete my barber's duties by splashing my father with his favorite aftershave lotion. Then we say goodbye; this time, for once, he neglects to mention the letter in his writing desk where his last wishes are set out.

We have not seen each other since. I cannot quit my seaside confinement. And he can no longer descend the magnificent staircase of his apartment building on his ninety-two-year-old legs. We are both locked-in cases, each in his own way: myself in my carcass, my father in his fourth-floor apartment. Now I am the one they shave every morning, and I often think of him as a nurse's aide laboriously scrapes my cheeks with a week-old blade. I hope that I was a more attentive Figaro.


Every now and then he calls, and I listen to his affectionate voice, which quivers a little in the receiver they hold to my ear. It cannot be easy for him to speak to a son who, as he well knows, will never reply. He also sent me the photo of me at the miniature-golf course. At first I did not understand why. It would have remained a mystery if someone had not thought to look at the back of the print. Suddenly, in my own personal movie theater, the forgotten footage of a spring weekend began to unroll, when my parents and I had gone to take the air in a windy and not very sparkling seaside town. In his strong, angular handwriting, dad had simply noted: Berck-sur-Mer, April 1963.


From the Hardcover edition.

FROM OUR EDITORS

This memoir was literally composed with a blind of an eye. By turns mischievous, angry, and wistful, the former editor French Elle shares the joys and sadness that crept over him when he became afflicted with a disease that left his entire body paralyzed -- except for his left eye, which he learned to use with a blinking alphabet to communicate with the rest of the world. The Diving Bell and the Butterfly is an unforgettable account of Bauby's own determination to live as fully in his mind as he had been able to in his body.

FROM THE PUBLISHER

In 1995, Jean-Dominique Bauby was the editor-in-chief of French Elle, the father of two young childen, a 44-year-old man known and loved for his wit, his style, and his impassioned approach to life. By the end of the year he was also the victim of a rare kind of stroke to the brainstem. After 20 days in a coma, Bauby awoke into a body which had all but stopped working: only his left eye functioned, allowing him to see and, by blinking it, to make clear that his mind was unimpaired. Almost miraculously, he was soon able to express himself in the richest detail: dictating a word at a time, blinking to select each letter as the alphabet was recited to him slowly, over and over again. In the same way, he was able eventually to compose this extraordinary book.

By turns wistful, mischievous, angry, and witty, Bauby bears witness to his determination to live as fully in his mind as he had been able to do in his body. He explains the joy, and deep sadness, of seeing his children and of hearing his aged father's voice on the phone. In magical sequences, he imagines traveling to other places and times and of lying next to the woman he loves. Fed only intravenously, he imagines preparing and tasting the full flavor of delectable dishes. Again and again he returns to an "inexhaustible reservoir of sensations," keeping in touch with himself and the life around him.

Jean-Dominique Bauby died two days after the French publication of The Diving Bell and the Butterfly.

This book is a lasting testament to his life.

FROM THE CRITICS

Kirkus Reviews

'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.' Thus begins the remarkable testimony of Bauby, who was editor-in-chief of French 'Elle' when he was felled by a stroke in December 1995. The stroke left every inch of his body paralyzed—except for his left eyelid, which he could blink. But his mind was fully alive, capable of the whole range of thought and feeling from dry wit to sadness to tenderness, and by blinking in response to letters recited by an amanuensis, he dictated 'these bedridden travel notes' about being locked inside his body. It shows that his rich heart, too, was alive and beating, but it finally gave way in March of this year, two days after the French publication of his book.

WHAT PEOPLE ARE SAYING