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The Diving Bell and the Butterfly: A Memoir of Life in Death, 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.
- Sales Rank: #106373 in Books
- Published on: 1997-05-13
- Released on: 1997-05-13
- Ingredients: Example Ingredients
- Original language: English
- Number of items: 1
- Dimensions: 8.00" h x 4.75" w x .75" l,
- Binding: Hardcover
- 131 pages
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
Two days after this remarkable book was published in France to great acclaim, its author died of heart failure. What caused such a stir was the method Bauby used to write it. For in December 1995, the 44-year-old former editor-in-chief of the French Elle magazine had suffered a severe stroke that left his body paralyzed but his mind intact, a condition known as "locked-in syndrome." Able to communicate only by blinking his left eyelid, he dictated this book letter by letter to an assistant who recited to him a special alphabet. The result is a marvelous, compelling account of Bauby's life as a "vegetable," full of humor and devoid of self-pity. Although he was trapped in the diving bell of his body, Bauby's imagination "takes flight like a butterflyy....You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court." His celebration of life against all odds is highly recommended. [Julia Tavalro, who suffers from the same condition, has also written an excellent account, Look Up for Yes, LJ 2/1/97.?Ed.]?Wilda Williams, "Library Journal.
-?Wilda Williams, "Library Journal"
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.
Most helpful customer reviews
63 of 66 people found the following review helpful.
Stunningly beautiful glimpse into a nightmare.
By Amazon Customer
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.
1 of 1 people found the following review helpful.
A Review of: The Diving Bell and The Butterfly, by Jean-Dominique Bauby
By Amazon Customer
A Review of: The Diving Bell and The Butterfly, by Jean-Dominique Bauby
Jean-Domique Bauby suffered a stroke which left him paralyzed with locked-in syndrome at the age of 43. He wrote the book for his two children with the help of Claude Mendibil. Bauby’s intention for this memoir was to give readers a view into what life after such a tragic event entails. He truly captivated both the positive and negative feelings which he frequently felt throughout the novel. For this review the chapters are summarized and reviewed, note some chapters are discussed as one.
Wheelchair. Bauby spoke of his wheelchair in both his terms and what the professionals surrounding him provided him with. They thought of the wheelchair as progress while Bauby saw his life sentence.
Prayer. Once he learned of what his new life would entail, Bauby let go of his large future plans that felt no longer attainable. Throughout this chapter he focused on the victories he could overcome, such as, swallowing the excess saliva that sits in his mouth. This chapter was meaningful in how Bauby was able to convey to the reader that he struggled with the idea of letting go his plans and making new ones.
Bath time. Bauby describes his daily routine which includes a bath. He channels the reader into the harsh double edged sword that was this time in his days. On one end he would relish in the pure joy of taking the bath, reminding him of how relaxing his used to be. On the other, the nostalgia brings pain in knowing that this will never be the same feeling.
The Alphabet. In this chapter Bauby discusses his communication system. He goes into detail the different types of communicators he encounters and how each one reacts to his form of communication. He discusses his preferences and how some make the communication harder as a result of not wanting to be wrong or disappoint Bauby.
The Empress. Bauby lets us in to see his own appearance. He talks of the patroness of the hospital being Empress Eungenie and his imagination flourishes.
Tourists. Bauby describes the different long term patients that are in the hospital. He makes a point to also discuss the patients who are there short-term and will return to their homes. Bauby makes a point to describe the way they laugh and joke to pass time but turn away from him.
Guardian Angel. This chapter and the three to follow of it talk of his relationships. Bauby refers to his Speech Therapist as his guardian angel. She is the one who allows him to communicate through his communication board. He talks of his father and his daughter both of whom he calls while his guardian angel is there. Bauby tells us that he wishes the other professionals would communicate with him using his communication board instead of just ignoring his attempts.
Our Very Own Madonna. Bauby speaks of his trip in Lourdes with Josephine. It gave a look into his life before the accident. They went to the Madonna and their trip was full of confrontations between the two of them, but love seemed to prevail.
The Vegetable. Bauby tells us a way he copes with his locked in syndrome. He writes a newsletter to friends and associates to help them gain a better understanding of his condition and so that they do not just write him off.
Outing. This chapter discusses how there are two different people that others know of Bauby. The way he was before his accident and the way he is now.
Twenty-One. Bauby explains what his friend and colleague Vincent is like and how he is different from other visitors in the sense that he treats Bauby like he always has. He also tells of his own hearing, he is completely blocked in one ear and the other amplifies all sounds from the hallways.
Sunday. This chapter gives us a look into what the days are like when there is no one around. Bauby relies on his caretakers to break up his days and on Sunday’s they are not around.
A Day in the Life. Bauby delves into the day of his stroke. He talks of how his day went normally and he had planned to see a play with his son, Theodile. When his stroke was happening he thought he would just be find after a rest and that is when he slipped into a coma.
Season of Renewal. The last chapter of the novel. It showed a sense of hope for the future. Bauby describes the change of season into autumn and how he has progressed. He states that he has made significant improvements since his time at Berck Hospital. The ending of the book was perfection.
The beginning of the book was hard to get into. It was confusing the way it jumped into describing how he was feeling about being in the hospital. I didn’t understand some of the metaphors or if he was talking about reality or fantasy. I did not give up on the prologue and first paragraphs as I reread them to gain a better understanding of what he was describing. Throughout the rest of the novel it was so eloquently written and Bauby’s style of writing was imaginative and intriguing.
A person may benefit from this book if they have recently suffered a similar traumatic event in their own lives, in a family member’s life, or will be working with this population. It provides excellent insight into how all aspects of Bauby’s communication and daily life struggles are handled and how he feels personally about them.
1 of 1 people found the following review helpful.
The Prayer references the prayers for recovery that Bauby finds to be a waste of what little energy he has
By Amazon Customer
Following a massive stroke in 1995, Jean-Dominique Bauby found himself trading a life of galas and yachts to one of isolation and hospital rooms. Having suffered a traumatic brain stem injury, Bauby is a prisoner in his own body courtesy of locked-in syndrome. The subsequent themes of fear, impotence, and, eventually, the triumph of one’s own desire to maintain independence are explored in striking detail throughout the autobiography.
The opening chapter, The Wheelchair, begins by painting the image of Jean’s dependency on others, his helplessness screaming off of the pages. The Prayer references the prayers for recovery that Bauby finds to be a waste of what little energy he has. Shifting gears from the spiritual to the physical, Bathtime and The Alphabet recount Bauby’s complete reliance on the staff tending to him. It is here we learn that there is a small chance his nervous system will start working again, but if it were to happen, the process would be extremely slow.
The Empress, Cinecitta, and Tourists focus on Bauby’s life and neighbors at the hospital. Since his mental state in tact, he is able to recognize other patients and their needs, Empress Eugénie being one in particular. He thinks fondly of her and her compassion towards him, often offering comfort. This comfort is fleeting, though; upon wandering around the hospital, Bauby realizes the gravity of his condition: “exiled, paralyzed, mute, half-deaf, deprived of all pleasures, and reduced to the existence of a jellyfish” (26). Cinecitta conveys the frustration of not being able to express his wants and needs, viewing the hospital as a maze he mindlessly wanders through, while The Tourists derides the ability of hospital visitors to come and go as they please, demonstrating avoidance behavior all the while.
The Sausage, Guardian Angel, and The Photo paint a portrait of his daily therapy. Knowing he may never eat orally again, Bauby retreats into mental “banquets,” dreaming a world of culinary delights where the beef is always tender and the fish is fresh from the sea. Though a tragic reminder of lost physical abilities, the richness of the chapter’s descriptions highlight the importance of his speech therapist, Sandrine: Without her, Bauby would never been able to develop the eye movement-based dictation through which this memoir was written.
Yet Another Coincidence, The Dream, and Voice Offerings are painfully honest chapters. After a brain injury a person’s sense of reality may never return; as such, Bauby chooses not to remember his current dreams, but instead hold onto his past memories. Adding to his plight, we discover that an optical irrigation issue has forced Bauby’s doctors to sew one of one of his eyes shut. With the loss of sight he creates “productions” of the room’s goings-on; a mental show to keep himself entertained.
My Lucky Day, Our Very Own Madonna, and Through a Glass Darkly, Paris come next. My Lucky Day is brief, recalling his experience as the TV channel ironically asking if it is his “lucky day.” Later, we’re introduced to Josephine, his former lover and mother to his two children. This cements feelings of inadequacy, and it’s here that Bauby gives us his memoir’s titular metaphor: “Yet since taking up residency in my diving bell, I have made two brief trips to the world of Paris medicine to hear the verdict pronounced on me from the diagnostic heights”, (77) going on to say “Nothing was missing, except me. I was elsewhere” (79). The Vegetable and Outing follow. It had been close to sixth months since the stroke, and, underestimated by the hospital staff, Beaudry determined he “would have to rely on myself if I wanted to prove that my IQ was still higher than a turnip’s” (82). In one memorable anecdote, he finds brief respite from the dreary hospital world on a trip to the beach, reminded of the “intoxicating” aroma of French fries (88).
Twenty to One, The Duck Hunt, and Sunday give more glimpses of Bauby’s past, introducing us to his former colleague Vincent. This reminder of his former life leads him to conclude “Today it seems to me that my whole life was nothing but a string of those small near misses: a race whose result we know beforehand but in which we fail to bet on the winner” (94). The Duck Hunt refers to a duck he was gifted to indicate when someone entered the room. He had a severe hearing loss that made it difficult to recognize subtle sounds such as a door opening. “Far from such din, when blesses silence returns, I can listen to the butterflies that flutter inside my head” (97): He claims he must have butterfly hearing despite its constant deterioration. Continuing his life of routine, Bauby recounts how on Sundays the bell tolls, the TV is turned on, and he contemplates the small library on his windowsill (101).
The Ladies of Hong Kong, The Message, At the Wax Museum, and The Mythmaker add to his recollection of and longing for travel, food, and desire to leave a note on the typewriter across his room. While his body is preserved, these memories are what keep Baudry from emotionally expiring within the dull hospital walls. Finally, A Day in the Life and Season of Renewal close out the memoir and summarize Bauby’s continued dreams, the memories that live on, and the future that lies ahead.
Though the prose itself is beautifully constructed, the memoir occasionally blurs the line between past and present, dream and reality. As such, it may have been helpful if Bauby had more cohesively grouped the chapters together according to timeframe and level of fantasy. Given the nature of his condition, though, it’s understandable that portrayals of his thought process are at times free-flowing.
Given its central theme of self-preservation in the face of physical adversity and, in particular, Bauby’s triumph in communication, this memoir would resonate with Speech Language Pathologists on personal, professional, and emotional levels, poetically shedding light on the “invisible” side of a devastating syndrome.
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