THE DIVING BELL AND THE BUTTERFLY
Jean-Dominique Bauby Harper Perennial NZ$20

Over the space of the last three or four weeks three different friends independently expressed surprise that I had not read this book. Off I went and bought a copy and on this just past dull and showery Sunday I stretched out on the sofa and began to read.

Here are the first few paragraphs:

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 cocoon 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. That day I was brutally introduced to this vital piece of anatomy when a cerebro-vascular 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." Paralyzed 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.

Two hours later I finished the book, and I was stunned.

Stunned by the staggering piece of work the book represents, stunned by the author’s bravery and courage and generosity, stunned by the sheer beauty of his text and the total absence of self pity, and stunned and saddened to read in the publisher’s footnote that Jean-Dominique Bauby died two days after the book’s publication in France. It has since been translated into 23 languages and sold over 1.5 million copies world-wide.

At the time that disaster struck him Bauby was the highly successful chief editor at ELLE magazine, married and the father of two young children, and by all accounts a charming and gregarious fellow.

With the help of a specialized nurse, Claude Mendibil, supplied by his publisher, he was able to “write” this book using his ability to blink with his left eye to the most frequently used letters of the French alphabet – E, S, A, R, I, N, T,U, L, O and so on – as Mendibil pointed to them on a screen he would blink once for yes and twice for no.
It took two months for Bauby to complete, one can only imagine the effort and determination and organization needed. A staggering achievement. Apparently the book took about 200,000 blinks to write and each word took approximately two minutes. No wonder Claude Mendibil is honoured in the author’s dedication.

This quite slender book is an inspiring masterpiece that everyone should read; I shall never forget it.