I used to feel sorry for myself because a neurological disorder robbed me of coordination in my left hand, making it difficult to type. An alert mind in a
paralyzed bodyEfforts to create at the computer keyboard became exercises in frustration as my clumsy hand forced me to go back and correct every other letter I typed. My thoughts raced ahead of my fingers.
I whined about it a lot until a year ago, when I read about Jean-Dominique Bauby. He was the editor in chief of Elle magazine in Paris until 1995, when he was downed in his prime by a monstrous stroke of the brain stem that left him in a nightmare world with a fully alert mind trapped inside a paralyzed body. Doctors have one of their cold-but-descriptive names for it -- "Locked-in Syndrome."
Bauby's first memory out of his coma was of a doctor sewing shut his right eyelid because the eye wasn't irrigating properly. His left eye was the only part of his body that still worked. It was his tiny window on the world and his only means of communicating.
We know this because Bauby wrote a remarkable book about his life after the stroke. He called it "The Diving Bell and the Butterfly" -- the diving bell for the inert hulk with the puny window that represented his body and the butterfly that represented his mind flying free. The book recently was released in English.
For obvious reasons, there's little on record about what goes on in the minds of people in Bauby's condition. We see the poor souls slumped in their wheelchairs and look away, assuming they've gone quietly insane in there.
Bauby took it upon himself to correct that assumption. In 150 eloquent and moving pages, he invited us to join him in his diving bell.
He took us with him as he revisited in his mind the many exotic places he had been in his life, remembering every detail.
Ignoring the tube that fed his body some awful brown fluid, he carefully prepared exquisite meals in his mind, paying close attention to the seasonal availability of vegetables, fruits and wines. He savored every scent.
He took us on his wheelchair tours of the hospital, which he had mapped out in his mind like a medieval castle. He invented personalities for the cast of characters who saw to his daily needs.
Bauby shared his rawest emotions without shame or inhibition. He saw all too clearly the bitter ironies of his situation. But even through the pain, he was often able to find moments of humor. He projects a powerful dignity.
Most incredible was the way he wrote his book. He winked it out one letter at a time.
Bauby would spend his mornings composing his thoughts and sentences in his mind. He'd play with his verbs and polish his adjectives until he had it memorized just as he wanted.
An assistant would take his dictation. She'd hold up a chart of the alphabet arranged in order of each letter's frequency in the French language. She'd point to the letters one by one. When she got to the letter Bauby wanted, he'd wink and she'd start the process again.
WINK by wink, letter by letter, word by word, Bauby wrote his book. He died shortly after finishing the mammoth effort.
I don't whine any more about my uncooperative left hand. I've reverted to my old two-fingered typing style and can manage reasonable speed and accuracy. If only I had the unsinkable will to write with half the clarity and commitment of Jean-Dominique Bauby.
Get this book. Your window on the world will change forever.
David Shapiro is managing editor of the Star-Bulletin.
He can be reached by e-mail at editor@starbulletin.com.
Volcanic Ash runs every Saturday in the Star-Bulletin.
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