Product Description

Already being greeted with extraordinary acclaim--the astonishing, profoundly moving memoir of a man afflicted by locked-in syndrome, a state of virtually total paralysis that leaves the victim, in the author's own words, "like a mind in a jar."

In 1995, Jean-Dominique Bauby was the editor in chief of French Elle, the father of two young children, a forty-three-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 brain stem. After twenty days in a coma, Bauby awoke into a body that had all but stopped working: only his left eye functioned, allowing him to see and, by blinking, to make clear that his mind was unimpaired. Almost miraculously, he was soon able to express himself in the richest detail, blinking to select letters one by one as a special alphabet was slowly recited to him, over and over again. In the same way, he was eventually able 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 in his body. He explains the joy, and the 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; 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 his book.

The Diving Bell and the Butterfly is a lasting testament to life.

Read by Rene Auberjonois

Product Details

• Amazon Sales Rank: #1267034 in Books
• Published on: 1997-05-13
• Released on: 1997-05-13
• Format: Audiobook
• Original language: English
• Number of items: 2
• Binding: Audio Cassette

Amazon.com Review
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
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.

Customer Reviews

life worth living
In December of 1995, Jean-Dominique Bauby, 43 year old editor in chief of Elle magazine in France, suffered a stroke which severely damaged his brain stem. After several weeks in a coma, he woke to find that he was one of the rare victims of a condition called "locked-in syndrome" or LIS, which had left his mind functioning but his body almost completely paralyzed. In a perverse sense he actually got fairly lucky because, unlike most victims, he was still able to move one eyelid. This allowed him to work out, with a speech therapist, a system of communication which entailed winking as someone slowly read through the alphabet. By using this code, he could painstakingly spell out words, sentences, paragraphs and, finally, this memoir.

The title of the book refers to the metaphors he uses to describe his situation. The physical paralysis leaves him feeling as if he was trapped within a diving bell, as if there is constant pressure pinning his body into immobility. However, at the same time, his mind remains as free as a butterfly and it's flights are as random. In fact, he calls the chapters of this book his "bedridden travel notes" and, indeed, they eloquently relate his journey through memory.

Although Bauby's situation is obviously unique, this book has universal resonance because his condition is itself an apt metaphor for the human condition. It is the essence of Man's dilemma that our infinitely perfectible minds are trapped within such weak containers of flesh and blood. For most of us, at most times, this frustrating dichotomy, between that which makes us godlike and that which makes us mortal, lurks in the background; but the author has it thrust rudely into the foreground, where it necessarily dominates his existence. This makes it all the more remarkable that Bauby is able to "write" about his life with such great humor and generosity of spirit and with so little bitterness.

Public opinion surveys reveal an interesting contrast in modern opinions on the "right to die." Contrary to the accepted wisdom, the so-called right is favored by those who are young and healthy, but opposed by those who are old and sick. The very premise which underlies such a right is the belief that the quality of life experienced by the aged and the ill is so inadequate that they would willingly choose death instead. In fact, the evidence suggests that--despite the anecdotal horror stories with which all of us are familiar--people generally cling to life even in the face of suffering which seems unendurable to the well.

Bauby's book, for all the horror that we naturally feel at his status, is wonderfully optimistic and life affirming. Sure, there are a few moments of well earned self pity, but they are almost completely drowned out by the author's enduring hopes and dreams and memories. Jean-Dominique Bauby died two days after this book was published, but in it's pages, he left behind one of the great testament's to the splendor and majesty of the human spirit. In these times when people tend to complain about the pettiest matters, he reminds us that even when life is genuinely difficult, it is still quite beautiful and invaluable and well worth living.

GRADE: A+

My Daughter's Condition Mirrors Author's
This is the most remarkable book I have ever read. I make this comment because my own daughter, age 26, was suddenly "locked-in" two years ago due to a stroke from birth control pills. Her condition mirrors the author's. I used his spelling method and shocked the doctors with her communication abilities. (They had told me she was vegetative.) Bauby's little book has changed our lives. I was deeply saddened by his death from a heart attack. He was beginning to do a great wonder for the unfortunate people with this rare syndrome by starting a newsletter and being the subject of a documentary. The Diving Bell and the Butterfly is a clever account of what it's like to be locked-in and a combination of some personal slices of life which ironically relate to the author's terrifying condition.

"My mind takes flight like a butterfly."
In 1995, Jean-Dominique Bauby was a vigorous man of 43 when he suddenly had a massive stroke that left him in a coma for twenty days. When he awoke, Bauby found himself a victim of "locked-in syndrome," a state of paralysis in which a person's mind functions while his body is frozen.

Bauby was the father of two young children and the editor-in-chief of a major magazine. He had traveled extensively and was blessed with many friends. After the stroke, his active and exciting life was no more. As a quadriplegic, Bauby had to be bathed, fed by a gastric tube, and moved by nurses and attendants. He could not speak at all. What was there left to live for?

It turns out that Bauby's mind provided him with the spiritual and emotional fuel to keep him from falling into despair. He did not become bitter or cantankerous, and he never lost his humor, imagination, or the wonderful memories that he cherished. Finally, he began to compose this book in his head, and through a system in which blinks of an eye indicated letters of the alphabet, he "dictated" this book to his secretary.

"The Diving Bell and the Butterfly" is witty, lyrical, and poignant. Bauby notes that since he could no longer eat in the normal way, he had to dine in his head, imagining himself enjoying beef bourguignon, apricot pie, or even a simple soft-boiled egg. Since he could not speak to his ninety-three year old father, Jean-Dominique's father called him on the phone and spoke to him. When he was finally able to sit in a wheelchair, Bauby was taken to the sea where he admired the colorful umbrellas, the beautiful seascape, and the lovely sailboats. He was destined to live the remainder of his life one step removed from reality, but, in his mind, this was better than not living life at all. Jean-Dominique Bauby lived to see his book published before he died in 1997. "The Diving Bell and the Butterfly" is an inspiring testament to the indomitable spirit of a very remarkable man.