The Diving Bell and the Butterfly
Not only was I exiled, paralyzed, mute, cut off from all pleasures and reduced to the existence of a jellyfish, but I was also horrible to behold. There comes a time when the heaping up of calamities brings an uncontrollable nervous laughter – when, after a final blow from fate we decide to treat it all as a joke.
What does success look like to you? Is it money? Power? Friendship? Health? Freedom? Contribution?
By most definitions, in 1994, Jean-Domenique Bauby was a successful man. The editor in chief of Elle magazine, he lived the life of a bon vivant in Paris. Two beautiful children. A great job. A country house and an apartment in Paris. The best food and wine, enjoyed in the company of the world’s most beautiful people.
At 44, he seemed to have a charmed life.
And in a moment, it all changed.
While driving with his young son one day he was felled by a massive stroke.
He came to consciousness 20 days later in a hospital bed in Berck-Plage on the coast of France.
The last part of his life would be very different from the first.
The only part of his body that could move was his left eyelid.
The stroke left him with a rare disorder called “Locked in Syndrome”, a malady in which the brain is totally functional but the body is not. His active mind was now locked inside a corpse that was almost completely dysfunctional, and, in his own words, hideous.
One moment, eating at the finest restaurants in the world; the next, fed food and oxygen through tubes.
Locked inside a body that would not work, he felt like he was trapped inside a diving bell, stuck in a shell from which he could not escape.
But at the same time he discovered his imagination was unimpaired. His mind could take him anywhere he wanted …
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 King Midas‘ Court. You can visit the woman you love, slide down beside her and stroke her still sleeping face.
It kept him sane, as he travelled like a butterfly in his mind wherever he wished. He discovered the real power of the human mind to conjure up all of his senses and literally transport him. And while his body was broken, his sense of humour was still fully intact.
By means of a tube threaded into my stomach, two or three bags of brownish turn to the vivid memory of tastes and smells, an inexhaustible reservoir of sensations. Once I was a master of recycling leftovers. Now I cultivate the art of simmering memories. You can sit down to a meal at any hour, with no fuss or ceremony. If it’s a restaurant, no need to call ahead. If I do the cooking it’s always a success.
As ridiculous as this may seem, Bauby was lucky. A caring and committed hospital staff realized that his brain was functioning normally. And his amazing therapists devised a way for him to communicate, blinking once for YES and twice for NO.
It was slow and tedious, and incredibly frustrating to communicate any complex thoughts. But it allowed him to communicate.
And then they took it a step further. He would ‘speak’ by spelling words. His therapist would recite the alphabet and he would blink when the letter he wanted was spoken.
(I will do this in English; they were working in French…)
“A-B-C-D-E-F” – BLINK
She would write the letter down – F.
Start again
“A,B,C,D,E,F,G,H,I,J,K,L,M,N,O” - BLINK.
Write it down – O.
Start again
“A,B,C,D,E,F,G,H,I,J,K,L,M,N,O” - BLINK.
Write it down O.
Start again
“A,B,C,D,E,F,G,H,I,J,K,L,M,N,O,P,Q,R,S,T” – BLINK - T.
“F-O-O-T. Foot?”
BLINK FOR YES
“OK. Foot. What about your foot?......”
Start again.
A,B,C,D,E….. ETC
But in this painstakingly difficult manner, he could actually create words.
They reordered the alphabet in order of each letter’s frequency in French to make it more efficient. But still, the frustration was incredible. When his family and friends would visit and try this technique, they would inevitably speed through the alphabet to try and make the process faster, which only made it more difficult for him to blink at the letter he wanted as the alphabet whizzed by.
But on they all struggled, all the while his family dealing with the anguish of seeing their once happy-go-lucky father trapped inside his “diving bell” of a body.
Many people have suffered debilitating strokes. But none have responded quite like Bauby.
Before his stroke, he had been intent on writing a book - a modern version of Alexandre Dumas’ The Count of Monte Cristo. (In an incredible twist of fate or cosmic irony, this book contains the first known fictional character who suffers from locked in syndrome!).
Instead of recreating Dumas’ work, he began his own. In his mind he began to craft the thoughts and sentences. And then, letter by letter, word by word, painstaking sentence after sentence, for hours on end, day after day, he dictated his book to a transcriber.
Those of you who have ever written a book know how difficult it is to order your thoughts and present them clearly and with passion. Imagine if you could not backspace, delete, cut, paste, rewrite, reorder and rethink without incredible difficulty; if even the most simple correction took hours of work to execute, letter by letter.
From Bauby’s eye poured one of the most incredible books you will ever read: Le Scaphandre et le Papillon – The Diving Bell and the Butterfly. The story of a man trapped, anguished, torn between the prison of his body and the freedom of his imagination.
… my son Theophile sits patiently waiting – and I, his father, have lost the right to ruffle his bristly hair, hug his small, lithe, warm body tight against me. There are no words to express it. My condition is monstrous, iniquitous, revolting, horrible. Suddenly I can take no more. Tears well and my throat emits a hoarse rattle that startles Theophile. Don’t be scared little man. I love you.
By turns wistful, mischievous, angry, and witty, Bauby shows 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.
Far from such din, when blessed silence returns, I can listen to the butterflies that flutter inside my head. To hear them, one must be calm and pay close attention, for their wingbeats are barely audible. Loud breathing is enough to drown them out. This is astonishing: my hearing does not improve, yet I hear them better and better. I must have butterfly hearing.
Jean-Domenique Bauby died of pneumonia in 1997, just two days after the publication of his book in French.
In 2007, a film version of his story was released, made by the brilliant director Julian Schnabel.
We’re not in the film and book review business. But watch the film. Then read the book.
Jean-Domenique Bauby’s story will touch your heart and move your soul.
And it will probably make you stop for a moment and think how lucky most of us really are.
