80 of 83 people found the following review helpful:
5.0 out of 5 stars
My Daughter's Condition Mirrors Author's, May 15, 2001
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.
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278 of 309 people found the following review helpful:
5.0 out of 5 stars
life worth living, September 30, 2000
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+
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55 of 58 people found the following review helpful:
5.0 out of 5 stars
"My mind takes flight like a butterfly.", August 9, 2004
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.
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