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A Writer’s Spirit Soared With a Blink of His Eye

TIMES STAFF WRITER

In the darkest depths of adversity, some men and women are able to reach into the recesses of their characters and find astonishing reserves of strength and courage.

Jean-Dominique Bauby, 45, was one of them. Although a stroke in December 1995 left him unable to speak or move or even to eat without assistance, the French journalist, who had been editor in chief of the fashion magazine Elle, wrote a book.

Lying inert on his hospital bed, he dictated by blinking his left eyelid, his only means of communicating with the outside world.

The book, “Le Scaphandre et le Papillon” (“The Diving Suit and the Butterfly”), already has 146,000 copies in print in France only a week after publication, and foreign translations are coming soon.

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“I can’t compare it to anything I’ve seen in my life as a publisher,” said Antoine Audouard, a friend of Bauby and general director of Robert Laffont, the book’s Paris-based publisher, referring to the demand for the work.

Bauby died Sunday. On Friday, in a program planned before his death, France’s leading television show on cultural affairs, “Bouillon de Culture,” featured Bauby and his book. French filmmaker Jean-Jacques Beineix, who made the cult favorite “Diva,” presented his documentary about the determined author.

In his book, Bauby reflects on his sudden transition from an “earthling in perfect working order” to what his friends termed “a vegetable.” (He preferred to think of himself as a “mutant.”)

Doctors diagnosed the editor’s affliction as “locked-in syndrome,” a rare condition in which the brain stem, the living link between the brain and the rest of the body, has been destroyed after a “cardiovascular accident.”

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His mental faculties were unhampered, and he was fully conscious of the world around him after coming out of a 3-week-long coma that followed the stroke. But, paralyzed from the neck down, his body no longer responded to the commands he sent it.

Hooked to an intravenous drip, fed through a probe implanted in his stomach and breathing thanks to a tracheotomy, Bauby learned to communicate with his eyelid. First it was a single blink for “yes” and two for “no.” Then he learned to use a special alphabet.

It was like an extended game of “hangman” or “Wheel of Fortune.” Bauby’s speech therapist would begin reciting or pointing to a hit parade of letters as they occur in French: from E, S, A, R and the other most frequent letters to the rarest. When she reached the letter Bauby wanted, he would blink or arch his eyelid.

“We recommence the same maneuver for the following letters, and, if there is no mistake, we quickly enough get a whole word, then segments of sentences that are nearly intelligible,” Bauby wrote, using his eyelid.

His very first sentence, Audouard said, was, “I have chestnuts in my mouth.”

That was a clear sign that Bauby’s intelligence and sense of humor were intact, the publisher said.

Even before his infirmity, Bauby, then editor of France’s premier fashion magazine, had signed a contract to write a book, which he conceived as a remake of Alexandre Dumas’ “The Count of Monte Cristo.” In the hospital, the project changed to “a series of postcards, or letters, to explain what life was like on the planet where he now was,” Audouard said.

Last summer, Bauby would wake each morning about 5 in his ward at a hospital in Berck on France’s northern coast and mentally compose the text he wanted to dictate. Around noon, Claude Mendibil, an editorial assistant furnished by the publisher, would arrive. They would then work for three to five hours, as long as Bauby’s strength held out.

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It took him about 200,000 blinks to write the book of slightly more than 100 pages, Mendibil calculated.

A sort of telepathic complicity occurred between Bauby and the young woman, and it was captured in Beineix’s film. As the two became accustomed to each other, it was sometimes enough for Bauby to dictate a single letter for Mendibil to guess the entire word.

The book has been warmly received by critics for its precise and richly imaged style, and the initial press run of 25,000 sold out on the first day. In it, Bauby describes his paralyzed existence as if he were trapped in an old-fashioned deep-sea diving suit while the “butterflies” of his thoughts, memories and daydreams flitted freely.

He recalls meals, a horse race, his life and work as an editor, his struggle in his hospital bed to twitch his nose when a fly lands on it.

“From this hell comes a great message of life and hope,” said Audouard, his voice thickening.

Before he died, Bauby was told of the great success his book was having, the publisher said.

“I think that having accomplished what he set out to do, he departed,” Audouard said.

Bauby left behind a son, 10, and daughter, 8. He had been separated from his wife.

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Bauby also helped create and was president of an association for fellow victims of “locked-in syndrome,” intending, he said, to guarantee that they would be “fully fledged citizens” of the 21st century.

Ironically, “The Count of Monte Cristo,” the 19th century saga that Bauby wanted to update, contains a character who is paralyzed and can communicate with the outside world only by blinking.

In “The Diving Suit and the Butterfly,” Bauby jokes that his condition might have been punishment from Dumas for his having dared toy with one of French literature’s classics.


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