Paralyzed Writer Found Way To Soar

France is a nation in love with daring exploits such as sailing around the world or trekking alone across Antarctica. But the achievement of Jean-Dominique Bauby, who died Sunday night, has inspired awe even here.

Bauby, a well-known journalist who had been editor in chief of Elle magazine, was left entirely paralyzed in December 1995 by a rare form of stroke that severed the connection between his brain and his body. He was unable to speak, breathe, eat or move anything except his left eyelid.

With that eyelid, he wrote a book.

By blinking his eyelid in code more than 200,000 times, as counted by his stenographer, Bauby dictated from his hospital bed the 130-page “The Diving Suit and the Butterfly,” which appeared in French bookstores only last week.

He died of heart failure in a nursing home here, at the age of 44, just before a series of planned celebrations of his achievement. A film about him by director Jean-Jacques Beineix was scheduled for French television Friday evening. A spokesperson for the France 2 network said it still will be aired and a planned panel discussion, of it and Bauby, will go on.

His doctor, Christian de Maricourt, said Bauby’s condition, known as “locked-in syndrome,” is not always fatal. Some patients die quickly, others live a few years with the aid of a respirator and other life-support devices, others go on for decades, he said.

The book’s title was chosen because Bauby’s image was of his motionless body encased in a diving suit while his spirit could “fly around like a butterfly.” The book is mostly anecdotal, written with a touch of humor and a dollop of sarcasm.

Noting that some of his former friends in Paris were describing him as a “vegetable,” Bauby wrote: “It was hinted that only a philistine could ignore the fact that I was more part of the produce market than of the company of man…. If I was going to prove my intellectual potential had remained superior to that of a radish, I could only count on myself.”

Other passages are vivid and moving. He describes Father’s Day with his young children (he was estranged from his wife) and of hearing his elderly father’s voice on the telephone, telling his son the news of the day while knowing he would hear no answer. His father could not visit because he was too frail to leave his apartment.

“We are both in “locked-in syndrome,’ each in his own way, me in my carcass, he on his third floor,” Bauby wrote.

The idea for the book came from letters Bauby wrote and had mass-mailed to dozens of his friends, including Antoine Audouard, the editor for the book Bauby was working on when he had his stroke. Between the two, they hatched the idea of changing the book’s subject a bit. The planned book, it happens, was a modern reworking of Alexandre Dumas’ “The Count of Monte Cristo,” in which one of the characters is paralyzed and communicates by blinking his eyes. “He told me later he was afraid it was Dumas’ revenge,” Audouard said.

To write the letters, and ultimately the book, Bauby spent painstaking hours each day with Claude Mendibil, a representative of his publisher. Mendibil would read aloud the letters of the alphabet, not in traditional order but in what Bauby called a “hit parade” - the most commonly used letter, “e,” coming first, followed by the second-most commonly used, and so on.

When Mendibil reached the right letter, Bauby would blink. Misunderstandings could be cleared up by a simple code: Bauby would blink once for yes, twice for no. At first, he could dictate just a half-page a day in this manner, but toward the end he was “writing” nearly three pages a day.

The only difficulty came in one of the final chapters, the one in which Bauby described the last day of mobile, pre-stroke life. The chapter is entitled “A Day in the Life,” in English after the Beatles song, and Bauby’s stenographer kept running words together when he would dictate lines from the song in English.

Audouard, the editor for this book, said with clear emotion in his voice that Bauby’s disability “made him a better writer.”

“What he teaches us is the value of words,” he said. “When you have nothing but words, every word counts.”

The book “was his reason for living,” Audouard continued. “It made him very happy to be judged as a writer. Like many of his friends, I would have liked him to enjoy more of his success, but I’m happy to see he lived to see the book and see that it was well received.”

De Maricourt, Bauby’s doctor, said that at the time of his death, Bauby still had many projects he wanted to pursue, including forming an association for victims of locked-in syndrome and their families - an effort that will continue.

“The impression he made was one of pure spirit,” de Maricourt said. “He put his body aside. With this eye, he seduced us all.”

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