on 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.
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.
on March 31, 2004
Wow. This book is beautiful and haunting. You begin the book with the knowledge of Mssr. Bauby's fate. He proceeds to share with us his eloquent and striking observations post-accident. This book is beautifully and concisely written - it's as tight as a drum - and that is a testament more to Bauby's journalistic talents than his impaired condition. An intellectual with a love for opera, music, writing, and food, he comes to life in these pages despite the brevity of the book. We get a decent sense of him prior to his stroke: a man with a full appetite for life. At times, I had to suck in my breath and set the book down to pause, it was so profoundly heartbreaking. He shares with us his deepest, raw thoughts about his daily life, his former lifestyle, his children, the blessings he misses and the pleasures he now looks forward to, as well as the torment he cannot control. A key point, I think, is that throughout the book he sprinkles his persistent sense of humor, and a feeling of hope. It's amazing considering that he is experiencing something we all agree is our worst nightmare. There is no bitterness on these pages, it's more of an honest wistfulness. Like when he says he would have cheerfully killed one of his caretakers for the neglect he suffered at his hands. I will never forget the irony of the photograph from his childhood sent to him by his father; the description of his last day of normal life; the story of Mithra-Grandchamp; the bleakness of his Sundays and how they lend perspective to his other days (and ours); and his trip to smell the French fries. The meaningfulness and importance of the small, everyday events, abilities, and choices we make are cast in a new light after reading this book. But the experience is like having someone open you up and rip out your heart, such is the sympathy we feel for Bauby. In fact, I will likely be haunted by his descriptions of life, both breathtakingly beautiful and immensely sad. What a man. What a book.
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.
on January 26, 2002
I have cared for several "locked-in" patients in my career. I have only barely imagined the inner life of these poor unfortunates. I was fascinated by the author's observations of the medical staff at his hospital, and I can clearly see that they are authentic. Sensitive staff members can feel his pain. Others are detached and even uncaring.
What is remarkable about this man is the life he was capable both before and during his illness. His strength, his humor, and his insight. His book gives us an insight not only into his particular illness, but into the isolation of any serious illness. He describes the fears and frustrations, the loneliness, and the need for inner strength.
I haver recommended this book to all the neurologists I know, and to patients and hospital staff. I feel this book teaches us about being human. You cannot but gain by reading it.
That's the one word that came to mind after reading Jean-Dominique Bauby's, emotionally uplifting memoir. At the age of forty three he suffered a massive stroke that led to his paralysis, a victim of "locked-in syndrome". That is he was perfectly cognizant, but unable to move any part of his body except his left eyelid. Two days after the book was published in France, he died.
The book is truly a testament to the human spirit, and the healing powers of the mind. Far from being a "woe-is-me" feel sorry for myself biography, Bauby rises above that to embrace the life he remembers. A life that sometimes took for granted the simplist of tasks such as shaving, eating, or merely forming a word.
Obviously no one lives their life aware of every minute detail as it passes by (except maybe poets), and in fact it's not until something's taken away that we really appreciate it. However, Bauby's book made me grateful and appreciate what I have, and even if just for a little while forget about what I don't.
on June 22, 2000
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.
A little mini-book from Knopf by the editor of Elle magazine who became a victim of the "locked-in syndrome" after a stroke left him paralyzed except for one eye. You can read it in an hour and yet you might be transformed. This is Johnny Got His Gun for real. Touchingly and beautifully rendered if you can stand it, the poor guy just lying there unable to even scratch an itch...
And yet, and yet, he wrote this book. Of course it is heroic, and of course he does not invite pity or tell his tale to seem heroic. Rather Bauby just wants us to know what it's like being in his position. Since this is who he has become, this is his job, to inform us. He's still working. He's still got something to give to this world.
What we can gain from this is a realization that there are all sorts of levels of existence, and who are we to complain?
Beautifully translated from the French by Jeremy Leggatt.
on 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 is somehow still there. He holds onto that hope despite his awareness that his life is now the hospital and the strangers who work there and who may or may not attend to his needs depending on the degree to which his condition makes them uncomfortable.
This is perhaps one of the hardest truths of his experience, a truth that drives home the agony of his achievement with the speech therapist--his ability to grunt out the lines of a nonsense rhyme about a kangaroo. A miracle on one level, yes. On another, it is absurd, struggling to say words that bear no relationship to the truth of a complex and beautiful soul.
Bauby died two days after the French publication of The Diving Bell in 1997. Perhaps there was no more to say.
on January 30, 2007
Ok, so you've had a "hard day". Your car wouldn't start this morning, your wife or husband ignored you and didn't say "goodbye" or "hello" let alone "I love you", your kids demanded candy and toys and cried "I hate you" when you didn't give in to them, your job is boring, your life is boring, no one likes you let alone loves you, your paycheck was deducted for a traffic ticket and you received 10 utility bills today in the mail, your credit card debt is going up and up every month...and you feel "sorry for yourself"..."Oh, what a hard life I have!" Then, read this book! The writer of the book suffered a massive stroke to his "brain stem" which took away ALL movement except for the ability to wink ONE eye! He can't stand up, he can't move ANY part of his body except for the one eye, he can't speak, his hearing is impaired allowing him to understand voices that are close by while all other noises are distorted and torture him by being too loud, and the list goes on. Sundays are his worst days because no doctors or physical therapists or anyone else visits him so he's basically alone in a hospital bed all day with nothing to do but think about the past, and so forth. So, you THINK you had a "bad day"!!! But, he copes. He can write using his ONE eyelid by blinking when someone says the letters of a word he wants to write. He wrote this book to tell us all what it is like to experience "locked-in syndrome". And it "aint" fun! But, he copes. And he thinks and he remembers and his MIND is like a butterfly that can fly to anywhere he wants it to go! So, he finds solace and "meaning" in his "hospital bed locked- in life". So, you think, "if there's hope for this guy to have a life, what about me who can use all my faculties, am surrounded by interesting things to do and places to go, and can enjoy talking with people and eat ice-cream and do all type of things that this other "locked in" guy can't do." So, you put the book down, you stop feeling sorry for yourself, and you are happier from reading his book! And you are thankful to the writer for giving you some perspective into the "little" things you "suffer" and you feel better thanks to him. So, if you're feeling "down" maybe this book might help you realize all the blessing you, and I, really have.