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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.
Anonymous
Posted August 10, 2012
Beasty
BostonAustin
Posted November 28, 2011
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.
Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.My_Bell
Posted November 28, 2011
This book gave a lot of insight into what the author was feeling in his condition. What it was like to be trapped inside your head. What he thought when he saw himself after the accident for the first time. How hospital visitors are perceived by someone with a long-term stay. How hospital workers treated him because he couldn't speak.
It definitely wasn't a story or a novel in the traditional sense, more like a collection of his thoughts, memories and experiences.
But it was more than enough to remind me to be thankful for every day with friends and family. Especially since his condition seemingly random and brought on suddenly.
I didn't love the book, but I'm glad I read it. I liked it.
Anonymous
Posted March 21, 2011
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!
Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.Lovey_Dovey_Kiss_Kiss
Posted September 27, 2010
For me, books are traditionally either hit or miss, but "The Diving Bell and The Butterfly" didn't disappoint in that I was left with mixed emotions. If author Jean-Dominique Bauby's purpose was to evoke deep thought and introspection, it was certainly successful; however if his purpose was to create something of literary merit, it is in this reader's humble opinion that it was nothing special.
I will preface the critical review of the novel by saying that regardless Bauby should be applauded for the feat of even writing the book. For those who are unfamiliar with his story, at age 43 Bauby, the editor of Elle Magazine, suffered a paralyzing stroke, leaving him in a vegetative state (commonly referred to in the book as "locked-in syndrome"). After devising a code using intricate combinations of blinking with his speech therapist, he was slowly able to painstakingly communicate letters, words, phrases, and ultimately the book.
The title, "The Diving Bell and The Butterfly", is a metaphor referring to how he feels in his locked-in status. He feels trapped, as one in a diving bell would, but free as a butterfly in thought. He alludes back to these many times throughout the book. I did like that he stayed very real and raw throughout the novel. While there is much room for him to play himself up as the hero, he gives us a very accurate view of how his life was before the accident, not brushing over details in order to make himself more appealing. Although he is in a hellish and trapped situation, Bauby maintains a generally positive attitude towards his situation, often using irony and sarcasm to find humor and cast a light on his dark and morbid scenario. I felt like he was trying to evoke pity from the reader in many different areas of the novel, but deservedly so, and inevitably he brought it back to a bright and optimistic tone.
My qualms with the book were few, but ran deep. Firstly, I felt like it was very scattered in terms of its' organization. While some would argue that it is too high of an expectation for him to have written a coherent memoir given his status, I still felt that it was very difficult to follow at times. Also, I was surprised to see so many issues (such as concepts of faith) go unwritten, only to be substituted with a very unnecessary descriptions such as two page description of food. A very well written bit it my have been, but I felt like it detracted from potential pages that could have given more character development or plot.
All that being said, Bauby definitely provides an in depth and well written insight to a very unique situation. His combination of humorous anecdotes and serious worldly insights makes for a very entertaining read that goes by in the blink of an eye.
Zeisinator
Posted September 24, 2010
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.
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.
Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.Sometimes life can change for some in....a blink of an eye! But, rarely does one find themself trapped with only a blink of an eye to communicate with. The author and main charecter, Bauby, describes life limited to the sole mobility of communicating by blinking. I found that aspect of his life profound.
This book was chosen by my book club as a Book Club read. Had it not been selected, I would not have choosen to read a book like this. I find myself recommending this book other book clubs.
A haunting, beautiful memoir of a victim of "locked-in" syndrome, written with exquisite detail and insight by the late author, who was an editor-in-chief for French Elle before a stroke rendered him unable to move, with the exception of his left eye. Using only that eye to blink in alphabet code, this book was transcribed. Amazing.
Was this review helpful? Yes NoThank you for your feedback. Report this reviewThank you, this review has been flagged.I read this book in about 2 hours. I couldn't put it down. Granted, the chapters are usually one to three pages, but they're more likely to make you curious as to what the next chapter holds than annoy you that they're so short.<BR/><BR/>Loved this book. I can't believe it took me so long to read it.
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Posted October 7, 2008
I really enjoyed the book. I can't believe he wrote it by blinking his eye. After I was done reading it, I went online and tried to find more information about him. I read some interviews of his friends and his daughter and it really made it even more interesting. I also found his son on facebook! I feel the movie is altered by the children's mother and I hope the kids will know not to base their views on the movie, as the movie is a movie and fabricated 'lightly based on the book' to entertain moviegoers.
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Posted June 30, 2008
I saw the film and had to read the book, it is so profound, it altered my whole outlook. I have never written a review before about any book!
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Posted March 29, 2008
This memoir stirs the unimaginable struggle of living in your body and not being able to communicate in the traditional way. It is a short yet moving account of his survival after suffering a stroke. The title beautifully illustrates how this successful man feels each day and how he uses his mind, his memories to live out the rest of his days. It will reduce your ability to complain about the trivial, daily inconveniences we experience.
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Posted May 8, 2006
The Diving Bell and the Butterfly (New York, 1997: Knopf) probes the delicate, sometimes permeable, line between a meaningful life and the meaning of life. Author Jean-Dominique Bauby, whose brain survived a cerebrovascular accident--a massive stroke--dictates the story to his amanuensis six months after the catastrophe. In the blink of an eye, he lost the life he knew and loved in thousands of blinks of his left eye¿the only part of his body that still functions normally¿he reclaims the beauty of his life and of life itself. By blinking, Bauby indicates the letters that make up the words that make up the story that describes the meaning of a meaningful life. Bauby communicates in this way because he suffers from locked-in syndrome, the result of a rare stroke to the brainstem. After 20 days in a coma following the stroke, Bauby awoke to find that his rich mind, his wit, and his passion for life survived intact inside an immobilized body¿a diving bell or carcass, by his own account. He is fed by a feeding tube and lives at the mercy of the hospital staff and the attention of loved ones and friends who make their way to Berck, a seaside town disconnected from the highway system to Paris. He is isolated in many ways, but he knows how to isolate himself even further. When his emotions overcome him, he can disguise the tears that flow as a mere watering of the eye. On one day, a small reminder of his life before the stroke can bring him to tears, but on another, he could laugh at it. His emotions are as distorted as his perceptions sometimes. The mere scrape of a shoe on the floor in the corridor can be deafening to him, but who can know that? The sight of his disfigured face reflected in window glass can horrify him, but who can know that? The indignity of being jostled about like a side-show freak for a quick sponge batch can depress him, but who can know that? The editor-turned-author introduces the reader to his passion for life early in the book when he describes each new day: '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 off for Tierra del Fuego, or for King Midas Court.' Bauby,44, had been the well-traveled editor-in-chief of the French edition of the international fashion magazine Elle when he suffered the stroke in December 1995. More than that, he had been the father of a 10-year-old Theophile and 8-year-old Celeste, the connoisseur of fine food and high-end automobiles, the son of an adoring elderly father. For all that, though, much of Bauby's story--what he calls 'bedridden travel notes'--reminds the reader that ordinary things make life meaningful: loved ones' patient attendance to our needs, the respect of the people around us, a change of scenery now and again, a trip to the beach, the opportunity to read a good book, the smell of French Fries. Life is in many ways an illusion--or a sequence of illusions. The Diving Bell is a sequence of 28 vignettes that capture Bauby's frustration with his condition and weave in details of his life before the stroke. He was about to have a 'man-to-man' talk with Theophile about his moving out of the family home, to help the child understand the brokenness of their familylife, but then he suffered the stroke. In this moment Bauby brings the reader face-to-face with the unfinished business of his life--unresolved hurts, misunderstandings, confusion, dreams. reflections, memories. He is aware these things will stay in the amber with him. The reader sees, too, that life is in the hospital, the wheelchair, and nowhere else, as Bauby points out in the final chapter. There is no indication of the lithe, dark-haired woman¿s being present in his life, though she occupies pride of place in the prologue. There is the hope, though, that friends returning from vacation will return to him with stories or send him letters. That his place in the world he knew i
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Posted January 9, 2006
I don't know how many times I've read this book, and each time I read it I learn something from it... Everyone should read this book!!!
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Posted March 16, 2005
This is a book that you can read over and over again. It poetically tells about loss, hope and acceptance in poignant vignettes.
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Posted June 7, 2003
When I strarted reading the book, I was thinking of its cosmic and spiritual implications. What if this happened to me? How would I handle it.?...Then I relaxed and just enjoyed it. He is very funny. And amazing. Just lighten up. He did. An extraordinary person and writer
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Posted April 10, 2002
This memoir is a tale of charm, wit, and beauty. The passions expressed were poignant, with the author's mind reliving his past in order to contain his sanity in the present. His descriptives were superb - his strength inspiring. To have the world in the palm of your hand on one day and the next day, you are virtually a prisoner, locked inside your own body. His despair was masked with humor and wit and never once did he feel sorry for himself to the point of anguish. Would I have been as courageous as he in the same situation? This is quick read, divided into numerous chapters, each a little tale in its own. You will laugh and you will cry - to realize that life as you know it can be taken from you in a heartbeat and you will be forever changed. His beauty expresses itself through his prose as the reader can see his mind is totally intact, alas, it is his body that binds him. One's compassion is elevated as his sensitivity shines though as well, masking the sadness of the knowledge of death slowly making its way to his door. An excellent book that will tug at your heart. It will also heighten your sensitivity to the fact that despite his disabilities, he still needed the comfort and love of friends and family. The realization that some 'friends' could not accept his condition and chose not to visit touched me deeply. He needed love around him more than ever. Incredible book!
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Posted July 24, 2000
This is an amazing book. The bn.com review above says it was done with the 'blind of an eye'. It was actually done with the BLINK of an eye. Mr. Bauby was paralyzed, but he could blink his left eye. As explained in one of the poignant yet witty chapters, a person would read off the letters of the alphabet (in French, because this all was in France, by the way) in the order that the letters were most used. So they'd say, 'E, A, S...' and when they said the letter that Mr. Bauby wanted, he'd blink his eye. In this manner, Mr. Bauby composed a thought-provoking 132-page book called 'The Diving Bell and the Butterfly'. The title comes from Mr. Bauby's feelings. The diving bell is mentioned sometimes when he feels oppressed. The butterfly is mentioned also when Mr. Bauby is feeling optimistic. I was in awe from the very first page. The style of writing that Mr. Bauby uses is so unique that I feel as though I know his hardships and joys firsthand. An interesting part about the name of this book is that the page inside that says the title again says this underneath: 'A Memoir of Life in Death'. I am actually worried that you people reading this review will not consider purchasing this book. I know that you will not be making an online purchase just because I recommended it. BUT! There are non-virtual Barnes and Noble stores, and I hope you go there to skim through this book. I bought this book, and I will now type up excerpts from this book in hopes of gettting you to buy this book: *'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 diving bell becomes less oppressive, and my mind takes flight like a butterfly... *One day... I can find it amusing, in my forty-fifth year, ot be cleaned up and... have my bottom wiped and swaddled like a newborn's. I even derive a guilty pleasure from this total lapse into infancy. But the next day, the same procedure seems... unbearably sad, and a tear rolls down through the lather a nurse's aide spreads over my cheeks... *I had been toying with the idea of writing a modern, doubtless iconoclastic, version of [The Count of Monte Cristo]. Vengeance, of course, remained the driving force of the action, but the plot took place in our era, and Monte Cristo was a woman. So I did not have time to commit this crime of lese-majeste. As I punsihment, I would have preferred to be transformed into M. Danglars, Franz d'Epinay, the Abbe Faria, or, at the very least, to copy out 1000 times: 'I must not tamper with masterpieces.' But the gods of literature and neurology decided otherwise... To foil the decres of fate, I am now planning a vast saga on which the key witness is not a paralytic but a runner. You never know. Perhaps it will work.' I would type up all of my favorite parts, but then I'd have the whole book here! Thank you for reading this long review. If you read the book, you'll discover that this review was not long enough to sing sufficient praise for it. Please read 'The Diving Bell and the Butterfly'. Hey, and e-mail me if you do! PS: Sorry for any spelling typos.
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Posted November 3, 2008
No text was provided for this review.
Overview
In a voice that is by turns wistful ...