Locked in but free as a butterfly

I stayed up all night last night to read The Diving Bell and the Butterfly by Jean-Dominique Bauby, former editor-in-chief of French ELLE magazine. The book was so superbly-written, so motivating that my first reaction was to think of friends who must be notified, so that they, too, die-die must read. But then I remember most of them don't really give two hoots about books. They would listen politely as I talk about the delights and inspiration I found in a particular book, period. I hate such people because they only pretend to listen but don't really care what you say.

Out of the blue, I received a mobile phone text message from Lili Koh (working in DHL): "Hi francis, any interesting books to read?" What serendipity! She has to be the next reader of The Diving Bell and the Butterfly.

The author, Jean-Do (as he was fondly called) was 43 years old in 1995 when he suffered a massive stroke. His mind remained clear, alert and active, but it was completely locked inside his totally paralysed body. The only way he could communicate was by blinking his left eyelid.

Incredibly, by blinking when the correct letter was reached by a person slowly reciting the alphabet over and over again, he managed to write a complete book describing his condition and experience, like a butterfly sealed inside a diving bell.

The book was published in 1997. A few days after publication, Jean-Do died.

For over 10 years I have always wanted to read the book but never got around to it. Last month, I saw the DVD edition of a newly-released movie based on the book. I bought the DVD, watched it (in French, with English subtitles) and decided to get the book from Borders. The movie depicts vividly the experience of a mind locked in the body although portions of it are different from the facts stated in the book.

Reading the book gives me a deeper understanding and appreciation than watching a movie. First, the language is lyrical without being verbose or fanciful. In a few clear, yet poetic sentences, Jean-Do was able to describe his locked-in syndrome:

“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.”

But his mind remained free:

“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.”

To me, one of the most moving chapters was his description of spending a day with his father in the week just before his own stroke:

“In the morning, after bringing him a cup of milky tea, I decided to rid him of his few days’ growth of beard. The scene has remained engraved in my memory.

“Hunched in the red-upholstered armchair where he sifts through the day’s newspapers, my dad bravely endures the rasp of the razor attacking his loose skin. I wrap a big towel around his shriveled neck, daub thick lather over his face, and do my best not to irritate his skin, dotted here and there with small dilated capillaries. From age and fatigue, his eyes have sunk deep into their sockets, and his nose looks too prominent for his emaciated features. But, still flaunting the plume of hair – now snow white – that has always crowned his tall frame, he has lost none of his splendour.

“All around us, a lifetime’s clutter has accumulated; his room calls to mind one of those old persons' attics whose secrets only they can know – a confusion of old magazines, records no longer played, miscellaneous objects. Photos from all the ages of man have been stuck into the frame of a large mirror. There is Dad, wearing a sailor suit and playing with a hoop before the Great War; my eight-year-old daughter in riding gear; and a black-and-white photo of myself on a miniature-golf course. I was eleven, my ears protruded, and I looked like a somewhat simpleminded schoolboy. Mortifying to realise that at that age I was already a confirmed dunce.

“I complete my barber’s duties by splashing my father with his favourite aftershave lotion. Then we say goodbye; this time, for once, he neglects to mention the letter in his writing desk where his last wishes are set out. We have not seen each other since. I cannot quit my seaside confinement. And he can no longer descend the magnificent staircase of his apartment building on his 92-year-old legs. We are both locked-in cases, each in his own way: myself in my carcass, my father in his fourth-floor apartment. Now I am the one they shave every morning, and I often think of him while a nurse's aide laboriously scrapes my cheeks with a week-old blade...”

I wish I have read the book years ago. Who knows what change it might have wrought in my thinking and my attitude towards life, family and people around me.