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Knopf Doubleday Publishing Group
Diving Bell and the Butterfly / Edition 1

Diving Bell and the Butterfly / Edition 1

by Jean-Dominique Bauby
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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.

Product Details

ISBN-13: 2900375701213
Publisher: Knopf Doubleday Publishing Group
Publication date: 06/28/1998
Series: Vintage International Series
Edition description: Reprint
Pages: 144
Product dimensions: 6.00(w) x 1.25(h) x 9.00(d)

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.

Read an Excerpt

PrologueThrough 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 PhotoThe 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.

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The Diving Bell and the Butterfly 4.3 out of 5 based on 0 ratings. 117 reviews.
Anonymous More than 1 year ago
I could really relate to him, I had a brain stem stroke 6 years ago and went through the LOCK IN state. I think anyone could benifit from reading this book. You never know!
BostonAustin More than 1 year ago
Jean-Dominique Bauby was a lively editor for Elle magazine in 1995 when he suffered a massive stroke that left him in a coma for twenty days. When he finally emerged from his coma, he found out he had fallen victim to ¿locked-in syndrome¿. His body was almost fully paralyzed, except for some slight head and eye movements, while his mind continued to function. With the use of only one of his eyes, he blinked to a translator who recorded letters to make words, sentences, and eventually this whole memoir. It took the pair nearly ten months to write at four hours a day. Although Bauby¿s condition was grim, his spirits were high and he never lost his wonderful humor and fascinating imagination. This book takes us through Bauby¿s experience of being a quadriplegic and his euphoric journey through a lifetime of memories. The anecdotes of his life serve to show how thankful Bauby was that he was still alive after such a horrific event and how not being able to move was not going to stop him from creating something great and sharing the best moments of his life. Bauby¿s style is unique, especially for someone in his situation. His witty sense of humor and use of irony add to the lighthearted tone, even though there is an underlying feeling on self-pity and regret. Although Bauby is confined to his body like a ¿diving bell¿, his mind is still free to fly like a ¿butterfly¿. This memoir speaks to the fact that the strength of the human spirit is undeniable and life is worth living.
Zeisinator More than 1 year ago
After living a normal life with a successful career and all the freedoms of motion, paralysis is an extremely devastating blow to anyone. Jean Dominique Bauby experienced a complete loss of his lifestyle after a stroke that left him with only the physical ability of blinking. Despite his bodily degradation, he was able to patiently author a memoir that reveals the thoughts of someone deeply isolated from the world, only connected through a communication system based on blinking. The Diving Bell and the Butterfly is a true story that never slows down for a moment. Since his communication was very limited, he does not focus on a single aspect of his life, but jumps around from scene to scene. While this style would seem choppy in most cases, Bauby's endless list of anecdotes flows together smoothly. The memoir does not leave out imagery and symbolism, but rather it uses these tools to make a string of stories fit together. With such a unique story, Bauby faces the huge task of making his situation understandable to readers. With no ability to physically do anything worthwhile, the only things he has left are memory and imagination; however, he is able to recall memories he can no longer experience with as much detail as if had just experienced them again. In one chapter, he recalls the time he helped shave his unable father and then uses this image to describe himself. His ability to explain unusual circumstances in a way that anyone can understand makes his memoir all the more interesting. One of the most obvious, yet important, symbols is the diving bell. Bauby uses the image of the diving bell to present the ideas of isolation and separation. As he is very limited in his communication, this symbol fits well; however, he also refers to "the tiny opening of my diving bell", which is his blinking communication system and only link to the world. The imagery of the diving bell gives a better perspective of his feelings of isolation. One of the most captivating parts of the memoir is that it makes the reader pity Bauby, yet Bauby himself does not spend his time pettily seeking pity. While he is often disappointed from recalling his past abilities, he tends toward a more hopeful spirit. When his kids come to visit him for a day at the beach, he finds joy in their lives, as if he is living through them. He misses the physical part of being their father, but he still realizes that he is their father and cares for them dearly. When he describes his thoughts at the beginning of his sufferings, he is almost in denial of his disability. Over time, however, he accepts his fate and tries to adjust to the less active life. He makes up for his physical inability by writing this memoir, reflecting on memories-a huge part of the memoir-and imagining things. Ultimately, The Diving Bell and the Butterfly is not the most cheerful story, but it presents Bauby's life with a positive aura and manipulates emotions. It is a very unique opportunity to look into circumstances that are indescribable except for the person who has experienced them.
AlissaH More than 1 year ago
As one who values a unique perspective, this memoir is the epitome of beauty and perfection. With enchanting language, painstakingly constructed, Bauby's writing transcends my capabilities of description. Written literally by blinking, this short story tells of his experience with Locked-In Syndrome, an unfortunate condition where your entire body is paralyzed while your mind is perfectly in tact. Straightforward and honest, without becoming too depressing or overly optimistic, The Diving Bell and the Butterfly is a literary jewel that will be the treasure of your library.
Anonymous 9 months ago
itadakimasu on LibraryThing More than 1 year ago
When I first heard about this story, I was blown away that he had dictated this entire book by blinking one eyelid. This is one of those rare times that I have seen a movie adaptation prior to reading the literary version. I was interested to find out, but not surprised, that there was much more allusion to sexuality and sexual fantasies in the movie version than I read in the book. I found the complexity of the sentences and the insightful, humorous and beautiful stories that he wove in the book incredible, as he would have painstakingly had to create them one letter at a time over long periods of sitting with his assistant. I was most struck by the sense of painful, wistful nostalgia for the limbed life he once led, vs. the vivid imagination he had while exploring new worlds and sensations that he had never experienced before. I found the book informative, inspiring and touching.
jiles2 on LibraryThing More than 1 year ago
As this book was written by blinking with one eye, I was struck not by the words as they were written, but the process of the event. It helps that Bauby was a journalist in his life prior to near-total paralysis. Regardless of my thoughts on the quality of writing (above-average but not mind-blowing), I feel that each time this book is read, it makes this man's last days that more human. Hopefully each reader will view people in their own lives through a similar lens.
msimelda on LibraryThing More than 1 year ago
Simply fascinating what humans are capable of surviving and overcoming.
kerryflory on LibraryThing More than 1 year ago
Short book written by a paraplegic about his life.
novelcommentary on LibraryThing More than 1 year ago
My daughter had to read this for school so I thought I would as well. It is amazing in it's testament for the need to communicate. Jean Bauby tells his story by blinking his left eye as someone reads through the French alphabet. His recent stroke has placed him in a state where only his left eye and his mind are functioning. This is called Locked in Syndrome. Despite this disability Bauby is able to provide for us insights into his life and dreams. I found the extraordinary process of trying to write this a bit more interesting that the actual words. There are memories and anecdotes that are at times interesting, but overall the most involving of stories was that this was actually produced. Ironically or tragically he died just after this project, which makes this even more telling - perhaps the quest of communication was what was keeping him alive.
cestovatela on LibraryThing More than 1 year ago
At the age of 42, Jean-Dominique Bauby suffered a catastrophic stroke that left him able to move only his left eyelid. The Diving Bell and the Butterfly is the memoir he dictated by blinking. Bauby's days are spent in a hospital bed, barely able to communicate with the doctors and nurses who care for him, isolated from other patients and tormented by mundane noises like the television and floor waxing machine. And yet, in spite of his tremendous disability, Bauby is vibrantly alive. "So many things to do today," he says at the beginning of chapter 2 before describing mental voyages through famous cities, favorite restaurants and childhood fantasies. What makes him so admirable is that he doesn't sugarcoat the mental and physical anguish of his condition; he acknowledges it simply and honestly, then moves on. Bauby's prose is spare and elegant. Not a word is wasted and not a drop of cheesiness creeps into the narrative. The words "triumph of the human spirit" are bandied about so often they've become almost meaningless, but this book truly deserves that title.
mike22ml on LibraryThing More than 1 year ago
When every word requires effort to communicate to the page, they are chosen very carefully. The writing is beautiful in its simplicity and careful use of words, not to mention its deep and introspective story of gradually losing the interaction with one's own life. When all he can do is think about life and no longer actively live it, Bauby crafts a stirringly beautiful (and short) book. One of the few times I saw a movie and then sought out the book afterwards.
realbigcat on LibraryThing More than 1 year ago
It's hard to say this is a good book when it deals with such tragic matter. If you are having a bad day and feeling down on yourself just read this book. I can't imagine a more horrible problem than "locked in syndrome." The courage and determination that Jean Bauby had in writing this book is incredible. To translate every letter of every word by blinking his eye is just unbelievable. The best thing is that thru his efforts on this book he gave a voice to those that suffer this fate. His family and everyone should be extremely proud of the grace and dignity in which he handeled this infliction. It's a quick read and I would highly recommend it.
eembooks on LibraryThing More than 1 year ago
A tragic story of a man with devastating stroke who only can blink one eye. This situation certainly makes you appreciate your own life. Had no interest in seeing such tragedy in film.
kiravk on LibraryThing More than 1 year ago
Out of everything I've ever read, I have never encountered a book quite as poignant and touching as The Diving Bell and the Butterfly. 43-year-old Jean Paul Bauby is on top of the world as the editor-in-chief of French Elle. He has two children and a dynamic career, but his plans for the future are shattered when a stroke to the brain sends him into a coma. Twenty days later, he wakes to a body that no longer works. He is a "mind in a jar"---completely paralyzed, mute, and half-deaf, but cursed with a fully functioning brain. For all the damage that has been done, one seemingly insignificant piece of control remains: Bauby is able to blink his left eye. By blinking to select letters of the alphabet as they are recited to him, one by one, he communicates his thoughts in vivid prose. You might think that a 131 page book written in this fashion would be a clunky read. Instead, this autobiography is, at the risk of sounding trite, absolutely beautiful. His words dance off the page. There is no pretension, no bitterness or self pity. His descriptions of the past and present are observant and often witty (¿ If I must drool, I may as well drool on cashmere"), while other parts are heart wrenching. For all the optimism Bauby attempts to muster, there is no avoiding the cruelty of his condition. ¿ Today is Father¿s Day,¿ he writes. ¿ Until my stroke, we had felt no need to fit this made-up holiday into our emotional calendar. But today we spend the whole of the symbolic day together, affirming that even a rough sketch, a shadow, a tiny fragment of a dad is still a dad. I am torn between joy at seeing them living, moving, laughing or crying for a few hours, and fear that the sight of all these sufferings---beginning with mine---is not the ideal entertainment for a boy of ten and his eight-year-old sister.¿ Ultimately, this book isn¿t so much about locked-in syndrome as it is a testimony to the resilience of the human spirit. Bauby¿s extraordinary attitude will leave you thinking about life, and the simple, mundane tasks we take for granted, long after you finish the last page. If you read only one book this year, it needs to be this one.
alspray on LibraryThing More than 1 year ago
To the best of my knowledge, rarely has a so much been send in so few words. It makes me wonder why other memoirs need so many of them. This book reads more like a poem, each word precisely chosen and lovingly placed. I do not yet know if Bauby's story horrifies me or brings me great peace.
stixnstones004 on LibraryThing More than 1 year ago
This was an amazing book (as well as an amazing movie). Not only was the book in itself magnificent, the way in which it was written is nothing less than awe-inspiring. The author of the autobiography, Jean Dominique Bauby was the victim of something called locked-in syndrome, in which he was completely paralyzed. The only way he could communicate was by blinking one eye. With the help of a couple of speech and psychotherapists, Bauby was able to come up with a language: the entire alphabet was spoken in order of the most used in the french language, and when the speaker came to the next letter in Bauby's sentence, he blinked. It was through this painstakingly slow method that Bauby wrote his novel of what it meant to be trapped inside one's own body. A very quick read, but also an unbelievably poignant one. It makes you grateful to be able to blink both eyes, twitch your fingers, or even swallow. The imagery in the book is enchanting. I recommend this novel to anyone and everyone.
emcnellis16 on LibraryThing More than 1 year ago
Jean-Dominique Bauby is a victim of 'Locked-In Syndrome." At the age of 43, he suffered a massive stroke that left him unable to move or speak. His only means of communication -- his left eyelid. Bauby spent weeks painstakingly dictating this memoir -- letter by letter.I read this book in one sitting, it was that captivating. Through short vignettes, Bauby manages to describe the minute intimacies of his life in astonishing detail. From his first experience in a wheelchair, to bath-time, and finally through the development of his communication 'code' - Bauby's emotions touch on both anger and sadness without becomings desperate or hopeless.There are also times of hope and, ultimately, love -- when he describes the visits of his children or memories of this father. Throughout the book, I was struck by Bauby's ability to be thankful for small things -- the ability to move his limbs a fraction of an inch, sitting in the Cinecitta, and the the ability of his mind to fly away like a butterfly.It is not until the end of the book that Bauby describes his last day as a 'perfectly functioning earthling.' This most important day in his life is detailed with very little emotion. This makes the catastrophic details all the more haunting.This is one the most poignant memoirs that I have ever read, and one of my favorite books of 2008.
artistlibrarian on LibraryThing More than 1 year ago
Like most of my library, I bought this book used and its lingering smell of stale cigarettes left me leaving it on the shelf unread. However, I finally reopened it, wanting a short and quick read. I am disappointed in myself for waiting so long.Bauby suffers a massive stroke in which he is alive, but without any physical movement - except his left eyelid. The entire text is his, written through a complex transcription system of blinking. That the text is in any way merry is astonishing; Bauby makes you laugh and enjoy living as he clearly details his own suffering. It is a small work of genius.
StoutHearted on LibraryThing More than 1 year ago
How can one properly criticize this book knowing the extreme challenges that were put to Jean-Dominique Bauby in writing it? Once the vibrant head of French "Elle" magazine, he suffered a debillitating stroke that left him with locked-in syndrome, his only means of communication his one remaining functional part: a blinking eye. Through the collaboration of his speech therapist, who invented a system of reciting letters of the alphabet out loud for Bauby to choose with a blink, Bauby was able to make known the daily life, pain, and challenges of one whose brain is still first-rate, but whose body is rendered useless. We see his joys in his active imagination, where he can go anywhere and do anything. But more powerful are his challenges: the hospital employees who ignore or mistreat him, the inability to hold his children, the loss of hope for independant life.The book is short and I would have loved to have been given more. But, as I noted earlier, it feels callous to demand more when you realize just how much effort went into getting one sentence down, let alone over one hundred pages. The film deals with this by exploring the friction in the dynamics between Bauby, his ex-wife, and his current lover. The book has little such character development, and the mother of his children is but a blip in the novel. Instead, we are focused squarely on Bauby and his struggles, which provides more than enough meat for a discussion.Sadly (or mercifully?), Bauby passed away days after his book was published. His legacy is hopefully the insight that greater compassion and understanding is necessary for those dismissed as "vegetables."
MarcusH on LibraryThing More than 1 year ago
This is an empowering story about strength over adversity and a testament to the human condition. After suffering a devastating stroke, Jean-Dominique Bauby's life goes from elite magazine editor to a completely paralyzed, "locked-in," patient. The story details Bauby's struggles to learn how to communicate by blinking his left eye and how he connects with the people around him. It's a sad story, but it is uplifting as well.
taletreader on LibraryThing More than 1 year ago
This book reminded me a lot of "Johnny Got His Gun," but more gentle. I can personally relate because of an autoimmune disorder where I constantly feel "locked-in," and being bedridden and going through the routine of so many doctors and hospitals, I felt like I was actually experiencing what Jean-Dominique was describing. Speaking of descriptions, Jean-Dominique's writing is as beautiful as the story told within them: "Hunched in my wheelchair, I watch my children surreptitiously as their mother pushes me down the hospital corridor. While I have become something of a zombie father, Theophile and Celeste are very much flesh and blood, energetic and noisy. I will never tire of seeing them walk alongside me, just walking, their confident expressions masking the unease weighing on their small shoulders. As he walks, Theophile dabs with a Kleenex at the thread of saliva escaping my closed lips. His movements are tentative, at once tender and fearful, as if he were dealing with an animal of unpredictable reactions. As soon as we slow down, Celeste cradles my head in her bare arms, covers my forehead with noisy kisses, and says over and over, 'You're my dad, you're my dad,' as if in incantation. Today is Father's Day."
PennyAnne on LibraryThing More than 1 year ago
I read this book in the couple of hours before I went to sleep - it had been sitting on my shelves for years and I thought it was about time I tried it. It is the amazing memoir of a man who suffered a major stroke and woke from his coma to find that he was suffering from 'locked in syndrome' and that while his mind was intact the only part of his body that he could move was his left eyelid (he dictates this memoir by blinking when his helper says the correct letter in the alphabet). This is an incredible story, I cannot imagine dealing with his situation with the good grace and humour apparent in the book. The saddest part is that he died two days after the the book was published.
bookczuk on LibraryThing More than 1 year ago
This has been on my wishlist since I first heard about it in the first weeks I was on BookCrossing. I refused to see the movie because I wanted to read the book first. This copy was purchased at a Friends of the Library sale in Rabun County, Georgia. The picture on the label in the book is from a mural that graced the walls at Redux in 2010.Beautiful, heart-wrenching, terrifying, illuminating, magnificent, hopeful, and oh so sad...I am terrified of illnesses and accidents that destroy minds, or that keep brains from expressing themselves.If one of my friends wants it, I'll send it to them, otherwise, I'll find someone who has it on their wishlist and pass it along as a RABCK. I waited 7 years for a copy. Maybe I can lessen someone else's wait.
stephenmakin on LibraryThing More than 1 year ago
This is a book written by a man with locked in syndrome. He communicates entirely with one eyelid. Before his stroke he was a editor of a woman's magazine - which comes through in the excellent qualitiy of his writting. He takes you on his dreams and into his world.