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The Diving Bell and the Butterfly: A Memoir of Life in Death Paperback – June 23, 1998
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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.
From the Inside Flap
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.
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The 8th of December 1995 began as a relatively unremarkable day for Jean-Dominique Bauby, Editor of Elle magazine in France. That evening, Jean-Dominique would endure a colossal cerebrovascular accident that would leave him with locked in syndrome, resulting in the inability to move and speak. Using a ghostwriter, Claude Mendibil, and only the blinking of his left eye, Bauby gives the reader a glimpse into his current life and thoughts as well as overlooked memories form his past. Jean-Dominique’s use of a diving bell and a butterfly encompass his take on his new life, restricted in body but free in mind to take flight to new and old places. His descriptive telling of the experiences, thoughts and memories Bauby has draws the reader in and reminds us to cherish even the most mundane of experiences. The following paragraphs will highlight some of his experiences in the chapters.
Prologue: The initial introduction to Jean-Dominique’s waking life. The pain he experiences upon waking without the ability to move or sense whether he is hot or cold. It is here the reader first understands what lock in syndrome is and how while it is quite awful, he is able to escape reality by exploring in his mind and creating vivid scenes as well as re-experience memories.
The Wheelchair: A number of white-coated professionals place him in a wheelchair for the first time. He still unsure exactly what his situation is and remains the same after his short lived and unceremonious wheel chair experience when he is left alone once again. This should an eye opener for all professionals that while we are busy individuals we must take time to be present with our patients.
Prayer: This chapter discusses Bauby’s realization of needed to achieve smaller goals rather than grandiose plans. In his mind and prayers, he assigns each spirit a specific healing task that brings a small comfort but little reprieve.
The Alphabet: Bauby uses the French alphabet ordered by frequency to communicate. He discusses the simple yet tedious way he converses with others as well as the differences in communication partners that can be both fatiguing and enjoyable.
Tourists: Bauby describes the rehabilitation room, a place where individuals of various levels of ability work on their recovery. During a particular exercise, he expresses feeling like a statue in a room full of tourists, who cannot acknowledge him.
Guardian Angel: Sandrine, his speech therapist and guardian angel, returned to him the ability to communicate and remain connected with others. Unfortunately, we are also told that many of his caretakers fail to use this communication mode resulting frustrating experiences.
The Photo: This chapter reminisces about his last time spent with his father, one where he was the caretaker for his fail elderly father, prior to the stroke. The contrast between his positions then and now points out how fast situations can change for any one of us.
Voice Offstage and My Lucky Day: Here Jean-Dominique briefly discusses his fears and discontent with medical professionals as well as his own body.
Through a Glass, Darkly: It is Father’s Day, and Jean Dominique writes of the tender love of his children and they way they are have grown into personalities that are influenced by their lives.
Paris: A description of his how his views and feelings towards the city of Paris, Bauby is reminded during his trips to Paris that the city has continued to bustle and time has gone on without him.
The Vegetable: This chapter marks 6 months since the dramatic shift in his life; he now sends monthly letters to family and friends. He receives many in return and feels proud to be able to exert his unwillingness to be called a vegetable, if even not in his presence.
Twenty to One: A now painful memory of a trip to the racetrack with an old friend, where conversation, enjoyment, food and drink resulted in the loss of opportunity to win 20:1 odds on a particular racehorse, one who’s name he struggles to remember. This chapter is full of regret of for opportunities not seized but also of opportunities he will never again experience.
The Duck Hunt: The stroke left him with hearing problems that make everyday noises sometimes unbearable, in this case the incessant quacking of a nearby patient’s movement detection device. He retreats to his mind and listen to butterflies to escape the unbearable noise.
Sunday: His least favourite day of the week. The hospital becomes a ghost town with only minimal staff and visitors. This day is often lonely, particularly since he is unable to adjust the television or read a book by himself.
The Ladies of Hong Kong: Here he describes his mind’s travels from places he a been a number times to others like Hong Kong, where fate has always disallowed him. He also recalls a memory of a friend who was captured and held by the Hezbollah for years and ponders the fact that he now feels imprisoned much as his friend was.
“A Day in the Life”: This second to last chapter is where the read will at least read about the day when his life was forever changed. His description of the day as well as the songs on the radio give the impression that he had no idea what was to come.
Season of Renewal: This final chapter describes some of his progress, his joy of family time, and his acknowledgement of his new life.
My only criticism is that while Jean-Dominique’s descriptions are both eloquent and vivid enough to paint a picture of his experiences, each chapter feels separate from the next, leaving the reader to try and piece together the bigger picture. This does not overly distract from the enormity of the task Bauby completed writing his memoir only blinking his left eye.
Finally, any individual who works in the medical setting will find insight both into patient’s lives and how they can improve their experiences in the smallest of ways. This memoir may also benefit those who have loved ones who have experienced the devastation a stroke can cause by giving them a small glimpse into the mind of someone who is no longer able to communicate as they once were. This book also gives hope that though life may be permanently altered by terrible events, there can be renewal and new joy in the unexpected.
The book is amazing. Bauby is a much stronger and more philosophical person than I am. He has a rich internal life that he uses to sustain himself, along with vivid memories, the love of his family, his children, and his friends.
The book is not a chronological telling of a story. It is a series of thoughts and events, things that stuck in his mind, things that elucidate his condition. They are often touching, frequently depressing, but always enlightening.
The book is a quick read, but not a light one.
I don't have many phobias. That said, the notion that I am trapped in my body with only one blinking eye to communicate ranks right up there. I think I've had nightmares about this sort of thing....being buried alive because no one realizes you are conscious inside your body? Freak. Me. Out. So not only does someone realize that Bauby is in there but in there and communicating....whoa. As if that wasn't enough, the dude dictates this book, in its entirety, by blinking his eye. HELLO. Let that thought sink in a moment. Each letter took how many blinks before the right letter was found?!? The man must have stayed awake all night composing in his head for the next day's blinkfest.
The book Bauby composed is a thing of beauty. It will be read and reread many, many times. What an amazing tribute. I feel honored to have read what he wrote. .