(2 of 2)
The book is not, of course, all playful ruminations. Bauby writes movingly of the suffering and depression his condition induced. He describes painful bedsores, and flies walking with impunity across his face. He tells of his 93-year-old father's phone calls to "a son he knows too well will not reply." Most agonizing are the moments when Bauby realizes that his loved ones will never feel his affection again. During one Father's Day visit from his children, he relates the unbearable feeling of being sealed in his bubble: "Theophile, my son, is calmly sitting there, his face 20 inches from my own, and I, his father, do not have the simple right to touch his thick hair...to hold tight his warm little body...Suddenly, that fact begins killing me."
But Le Scaphandre et le Papillon underlines Bauby's determination to deny locked-in syndrome total victory. His condition may have defined the rules, but he was still able to play the game. And play he did. Not content to wink out one book, he proposed other book projects before his death, founded an association for victims of locked-in syndrome and their families and participated in a film aired on French TV last week about his struggle. "He loved life, and he lived it intensely--both before and after his accident," says Susanna Lea, a spokeswoman for Laffont who worked with Bauby. "He has left a legacy that will not be soon forgotten." French readers certainly don't seem ready to forget. The book's initial run of 25,000 copies has sold out, and it seems certain to land near the top of France's best-seller list. An English-language translation has been commissioned, and negotiations for U.S. publication are under way.
In the end, Bauby's spirit proved stronger than his heart. He died as he lived: with dignity, on his own terms and in accord with his own words. "Is there a key out in the cosmos that can unlock my bubble?" Bauby asks at the end of his book. "A currency valuable enough to buy my freedom? I have to look elsewhere. I'm going there."