Jean-Dominique Bauby (1952–1997)

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 show more 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 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 show more 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, 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.

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 show more 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 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