Alive but locked inside the body

Jean-Dominique Bauby (April 23, 1952 – March 16, 1997) was an author and editor-in-chief of French ELLE magazine. On December 8, 1995 at age 43, Bauby suffered a massive stroke. When he woke up 20 days later, he found he was entirely speechless; he could only blink his left eyelid. This rare condition is called Locked-in Syndrome, a condition wherein the mental faculties are intact but the entire body is paralysed.

Despite his condition, he wrote the book The Diving Bell and the Butterfly (French, Le scaphandre et le papillon) by blinking when the correct letter was reached by a person slowly reciting the alphabet over and over again.

Bauby composed and edited the book entirely in his head, and conveyed it one letter at a time. To make dictation more efficient, Bauby’s interlocutor read from a special alphabet which consisted of the letters ordered in accordance with their frequency in the French language. The book was published in France in 1997. Bauby died just 10 days later of pneumonia.


The Diving Bell and the Butterfly
Jean-Dominique Bauby

Prologue

Through the frayed curtain at my window, a wan glow announces the break of day. My heels hurt, my head weighs a ton, and something like a giant invisible diving bell holds my whole body prisoner. My room emerges slowly from the gloom. I linger over every item: photos of loved ones, my children’s drawings, posters, the little tin cyclist sent by a friend the day before the Paris-Roubaix bike race, and the IV pole hanging over the bed where I have been confined these past six months, like a hermit crab dug into his rock.

No need to wonder very long where I am, or to recall that the life I once knew was snuffed out Friday, the eighth of December, last year.

Up until then, I had never even heard of the brain stem. I’ve since learned that it is an essential component of our internal computer, the inseparable link between the brain and the spinal cord. I was brutally introduced to this vital piece of anatomy when a cerebrovascular accident took my brain stem out of action. In the past, it was known as a “massive stroke”, and you simply died. But improved resuscitation techniques have now prolonged and refined the agony. You survive, but you survive with what is so aptly known as “locked-in syndrome”. Paralysed from head to toe, the patient, his mind intact, is imprisoned inside his own body, unable to speak or move. In my case, blinking my left eyelid is my only means of communication.

Of course, the party chiefly concerned is the last to hear the good news. I myself had twenty days of deep coma and several weeks of grogginess and somnolence before I truly appreciated the extent of the damage. I did not fully awake until the end of January. When I finally surfaced, I was in Room 119 of the Naval Hospital at Berck-sur-Mer, on the French Channel coast – the same Room 119, infused now with the first light of day, from which I write.

An ordinary day. At seven the chapel bells begin again to punctuate the passage of time, quarter hour by quarter hour. After their night’s respite, my congested bronchial tubes once more begin their noisy rattle. My hands, lying curled on the yellow sheets, are hurting, although I can’t tell if they are burning hot or ice cold. To fight off stiffness, I instinctively stretch, my arms and legs moving only a fraction of an inch. It is often enough to bring relief to a painful limb.

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 out for Tierra del Fuego or for King Midas’s court.

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, discover Atlantis, realise your childhood dreams and adult ambitions.

Enough rambling. My main task now is to compose the first of these bedridden travel notes so that I shall be ready when my publisher’s emissary arrives to take my dictation, letter by letter. In my head I churn over every sentence ten times, delete a word, add an adjective, and learn my text by heart, paragraph by paragraph.
Seven-thirty. The duty nurse interrupts the flow of my thoughts. Following a well-established ritual, she draws the curtain, checks tracheotomy and drip feed, and turns on the TV so I can watch the news. Right now a cartoon celebrates the adventures of the fastest frog in the West. And what if I asked to be changed into a frog? What then?

Four Oscar nominations

Feb. 23, 2008, PARIS: The quietly stunning film of Jean-Dominique Bauby’s phenomenal memoir, The Diving Bell and the Butterfly, is nominated for four Oscars this year. They include directing by Julian Schnabel – an honour he won for the film at the Cannes Film Festival and Golden Globes – and best adapted screenplay by Ronald Harwood. The Diving Bell and the Butterfly is also nominated for cinematography and editing, and has won numerous awards in film festivals across the world.

Contents

The Diving Bell & the Butterfly book & DVD