The Diving Bell and the Butterfly: A Memoir of Life in Death

THE DIVING BELL AND THE BUTTERFLY (1997) got a lot of press when it was adapted for the screen in 2007. I remember reading about it then, but I have not seen the film, and now, having read the book, I can't figure out how they made a movie from it. Because at just 43 years old, author Jean-Dominique Bauby (editor of the French ELLE magazine) was totally paralyzed, a quadriplegic, when he "wrote" it, following a massive stroke and a lengthy coma. He awoke to find an ophthalmologist sewing his right eye shut to prevent damage to the cornea. His only method of communication came later, with the help of an understanding speech therapist. Together they devised an alphabet code with Bauby blinking his left eye, painstakingly spelling out show more words one letter at a time, telling us bits of his life, about his children, his aged father, his girlfriend (he had recently divorced), and the seaside hospital which has become his home. I found it especially poignant that there is no bitterness or anger to be found in any of these short vignetes - of his prayers, dreams, non-progress toward recovery, being bathed and handled, a short outing by wheelchair to the beach, visits from family and friends and more. The diving bell of the title is the body that imprisons him, and the butterfly is his mind, still very much alive and functioning, flitting about between hopes, memories and what is happening to him in his present, hopeless state.

I read this slim volume in just a few hours, but it's not an easy read. What happened without warning to this previously healthy, vigorous young man is almost too much to contemplate. Bauby died just two days after this book was published. I will hesitantly recommend it, primarily because the fact that it got written at all is a triumph of the human spirit - of mind over (inert) matter.

The book was dedicated to his children, and to Claude Mendibil, the woman-therapist who worked out his alphabet code and tirelessly transcribed, letter by letter, word by word, the story found here. Bravo to her too, for her selfless dedication. And Godspeed, Monsieur Bauby.

- Tim Bazzett, author of the memoir, BOOKLOVER show less

Imagine the unimaginable if you will.

You are completely paralyzed. You cannot speak and the only part of your body you can move by yourself is one of your eyelids. Yet your mind is as sharp as ever and as you lie on your hospital bed, you are all too aware of the world around you and your condition.

This is what happened to Jean-Dominique Bauby, who tells his story in The Diving-Bell and the Butterfly.

Yes, you read that right. Bauby dictated his story letter by letter, blinking as the letter he wants is read out from a chart by his bed.

How hard must that have been - mentally composing each passage, and having to hold it in his head, a flood of words that can only drip one letter at a time.

Bauby was the editor in chief of Elle magazine, show more and suffered a massive stroke at the age of 42 which left him trapped inside his body with "locked-in syndrome". He died two years later.

His writing is often moving, sometimes surprisingly humourous, but never self-pitying as he describes the hospital routines and his visitors, revisits his past and sheds the cocoon of his useless body to allow his mind free flight.

"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, realize your childhood dreams and adult ambition."

And yes ... if this poor soul with one working eyelid can write a book this good, what excuse do the rest of us have? show less

A fascinating peek behind the veil of locked-in syndrome to the soaring spirit of the imprisoned poet. Bauby is witty, vulnerable, and vivid as he narrates his mind’s journeys. In a word, he is alive. He is persistently and resiliently alive. And, he is complicated. He writes about three separate love interests, having left his children’s mother for another woman just months before his coma. An intriguing story without resolution, he himself stands as a tragic poem.

Perhaps if Jean-Dominique Bauby's story of "locked-in syndrome" - a rare cerebrovascular condition in which the mind ("The Butterfly") is vibrant and wide awake, while the body ("The Diving Bell") is a slumbering mass of perpetual immobility and inertia (a very personal prison cell comprised of his own flesh and blood) - were fictive rather than so terribly true, I'd of more so savored each of his spare sentences. For each sparkling sentence is a story or a truth unto itself.

"But to keep my mind sharp, to avoid descending into resigned indifference, I maintain a level of resentment and anger, neither too much nor too little, just as a pressure cooker has a safety valve to keep it from exploding."

Chew on that lyrical gem a bit. Words to show more live by, even if your body, unlike Bauby's, is not permanently paralyzed.

Perhaps if this poor man, victim of a massive and usually lethal stroke at 43 that left him in a coma for two months, weren't dead right now, and hadn't died so soon after completing what could be considered the most concentrated (and certainly shortest) tome ever written, or had I not known these horrible facts while reading the book, I could say then, and only then, that I enjoyed it, the book. I greatly enjoyed the poetic, philosophic writing, the sardonic humor despite his heartfelt and unfathomable (for someone not trapped in his godawful situation) psychological suffering and loss, and even the occasional, understandable, bitter barbs of incisive wit he let loose, I liked too (i.e., an insensitive, gruff doctor asks Bauby, "Do you see double?", and Bauby, internally, replies, "Yes, I see two assholes, not one."). But how can I honestly say I enjoyed this story? I suppose I did enjoy it - the storytelling, that is - but I likewise didn't enjoy poor Jean-Dominique Bauby's tragic story. A story that just as easily could be anyone's story at any time, should Fate or God or The Cosmos or Whatever determines to do to you what it determined so abruptly and brutally - fatally - for Bauby.

It's so much easier to read something deliciously depressing like The Road because it's obviously made up stuff no matter how realistic the author breathes whatever bleak and ruined life into the characters and settings and scenarios he's created, but The Diving Bell And The Butterfly is about as in-your-face, depressingly real as it gets. And it's not depressing necessarily because of anything Bauby said (or how he said it) - though I will wholeheartedly say that Bauby said as much about life - and about death and suffering and how to deal with the latter two as optimistically as possible - I believe, in barely 100 pages (and did so only by blinking his left eye! - you just try communicating and writing anything - let alone what borders on the meaning of life - just by blinking your left eye!), as any existentialist, 19th century Russian masterpiece could say even though it pushed or exceeded a thousand pages.

Bauby indelibly tapped into the primal human horror of having complete consciousness, and yet being so ill-equipped to communicate that consciousness - to connect it - to another human being as to take humanity's innate dread of loneliness and abandonment to levels perhaps previously unrealized in fiction or non-fiction. I've a dear daughter "locked-in" her own isolated interior world of autism, and knowing Bauby through his brief book, helps me understand and recognize more clearly that there's probably a lot more going on beneath the surface with my mostly non-verbal, uncommunicative daughter than I ever realized.

The book, quite simply, is beautifully sad. Hopeful, and yet despairing. Inspiring, yes, but not "joyous," as the dumb publishing blurb on the back, falsely claims. Movie tie-in marketing no comprendo's.

I don't recommend The Diving Bell And The Butterfly, but I think everyone should read it. show less

Suppose a book, written in near-impossible circumstances and universally praised ever since, disappointed you, left you unsatisfied? Would that tell you much about the book itself, or more about you its reader?
   First the facts. In 1995 Jean-Dominique Bauby, editor-in-chief of the magazine Elle, suffered a massive stroke which even a decade earlier would have killed him. Not now though - today medical science can keep you alive...after a fashion. His brain-stem irreparably damaged, the result was locked-in syndrome: gradually emerging from a deep coma weeks later, Bauby found himself in a hospital bed, conscious but trapped inside his own inert body. It is a condition which evokes the same horror as Edgar Allan Poe's Premature show more Burial - waking to find yourself buried alive - and explains this book's title: the paralysed body as a diving bell, a mere rigid container, and trapped within it, fluttering against its windows, the zigzagging butterfly of his mind.
   In fact, locked-in syndrome varies in its severity; Bauby was able to blink his left eyelid and, with time, learned to move his head. And it was with this single eyelid that, after six months in this condition, he began to dictate his book to Claude Mendibil, a freelance editor - composing and memorising paragraphs of text every morning, then spelling them out one letter of the alphabet at a time. Le Scaphandre Et Le Papillon is an account, in twenty-nine short chapters, of the hospital at Berck-sur-mer and his own helpless condition there, memories of his former life, fantasies and even an occasional joke. It's beautifully written, very moving - and all the while, of course, you are reminding yourself of just how it was written; rarely can a book have been drafted in such extremis. And yet...I still came away disappointed.
   I guess different readers will see different things in it. A purely practical mind will wonder about the technology, and whether keeping people alive in such circumstances really is a medical advance or not. Bauby was lucky in one respect at least: able to blink, the outside world realised immediately that he was fully conscious; yet you can't help but picture others, less fortunate, no less conscious but fully "locked-in" and assumed to be insentient, who lie alone and (in Bauby's own appalling phrase) "...abandoned to a vegetable existence..."
   A humanitarian might be spurred into action, into helping these abandoned ones (Bauby himself, in the last year of his life, set up the Association du Locked-In Syndrome from his own hospital bed).
   A moralist, on the other hand, might try to connect Bauby's former life - his love of rich food, wine, good living - with his subsequent "punishment" (unable even to swallow, he is fed sludge through a tube).
   A philosopher might go deeper and see Bauby's predicament as a metaphor: for the hugely restricted lives we are all forced to lead as members of society.
   And there will be some who, while impressed by the prose and sheer courage of its author, still put the book down disappointed. Is that our fault as readers, were we expecting too much, expecting a glimpse of a living hell - only to find that it wasn't? Or were we looking for something a lot more profound which the book couldn't live up to? Moreover, should we feel guilty about having such thoughts (could I have written, well, anything at all in those circumstances?)
   So we are left wondering what prompts us to take a book like this (or books about prison camps, disasters, madness) down from the bookshop shelf in the first place. Pure curiosity, to see what locked-in syndrome looks like from the inside? But if it's only curiosity, why would the book disappoint you? Voyeurism then, a modern version of the carnival freak-show? Or is it inspiration, watching as someone battles almost unimaginable odds? And thus it is, finally, a book which leads you to question your own motives and very character. show less

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 show more 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." show less

This book was haunting, sad, and funny. With wit, charm, graciousness, and humor, Jean-Dominique Bauby brings the reader into his world of "locked-in" syndrome. It's a very rare syndrome. After suffering a stroke, he awakened from a coma to find he could only move his head, and his left eye. His mind was perfectly intact. He likened it to being buried alive. I can see how it would seem like that.

It's a story that can quickly put one's life into perspective. Highly recommended.

*Thank you to J.C. Sasser (author, Gradle Bird) for the gift of this book*