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SANIB-SINAG
1 February 15, 1998
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What if you lost both hands?
The human spirit often finds a way. The Irish writer Cristy Brown wrote with his left foot. Physicist Stephen Hawkings, his face and body twisted, wrote the brilliant A Brief History of Time from his wheelchair.
Jean-Dominique Bauby wrote with his left eye.
Fate smashed Bauby on the road to the French countryside. Bauby had a quick temper, taste for good food, loved books, was the father of a 10-year-old boy and an 8-year-old girl and the editor-in-chief of the popular French fashion magazine, Elle.
On Dec. 8, 1995, he was 43 and driving his son to what would have been their weekend together, at the same time test-driving a new BMW he was planning to buy, when he suffered a cerebrovascular accident that knocked his brain stem out of action.
"In the past," Bauby later wrote, "it was known as a massive stroke and you simply died. In his case, the latest resuscitation methods worked and he survived "with what is so aptly known as 'locked-in syndrome'."
He was paralyzed from head to toe, but his mind remained intact. He could not speak or move. He could blink only his left eye; the useless right eye was sewn shut to avoid laceration.
In short, Bauby, in the prime of his life, suddenly found himself locked inside his own body. He was alive but only barely. He was trapped, he falt, inside a "diving bell" but he could "hear" like a butterfly. The quieter it was the sharper his mind's ear became.
The Diving Bell is Bauby's memoir, written from and despite the cruel confines of his deadened body, and it is a most unusual memoir. One reviewer calls it "the most remarkable memoir of our time."
The way this little book was created is certainly most remarkable. Using his left eye, Bauby wrote, was a painful, deafening and funny process that took several months. He used the same single eye to communicate.
"It is a simple enough system," he wrote. "You read off the alphabet until, with a blink of my eye, I stop you at the letter to be noted. This maneuver is repeated for the letters that follow, so that fairly soon, you have a whole word, and then fragments of more or less intelligible sentences.
"That," he said, "at least, is the theory."
The actual "dictation" was something else. It was frustrating, sometimes laughable, because of the assortment of people who, with only the best of intentions, tried to communicate with him. The nervous ones made mistakes, the impatient tried to guess his words before he could complete them; the simply obtuse could not understand at all.
"Crossword fans and scrabble players have a head start," he wrote. "Reticent people are difficult. If I ask them 'how are you?' (remember that Bauby was blinking one letter at a time to express this simple greeting) they answer 'fine,' immediately putting the ball back on my court."
One day, he attempted to ask for his "Glasses" (lunettes in French). He was asked what he wanted to do with the "moon" (lune).
Bauby retained his wit and humor although he was often in pain and always helpless. "If I must drool," he said, "I may as well drool on cashmere," because he refused the hospital's joging suit and preferred his own collge clothes.
Bauby had bouts of bitterness and self-pity, despite his quick wit. He wrote of his son: "His face not too feet from mine, my son sits waiting -- and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe, warm body tight against mine."
Filled with love but unable to show
it, Bauby's heart was suddenly flooded with self-revuslion. "My condition
is monstrous, iniquitous, revolting, horrible.
But that stab of bitterness pales against the blinding
flashes of hope and the healthy humor in this wonderful life-filled book,
which should be read not because of the amazing way in which it was produced,
but because of these very virtues.
At the end, Bauby said: "Does the cosmos contain keys for opening up my diving bell?... A currency strong enough to buy freedom back? We must keep looking. I'll be off now."
Two days after The Diving Bell was in France early last year, Jean-Dominique Bauby died. Free at last, his spirit lives on in this book that is ultimately about freedom.
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