FRANCE’S PARIS MATCH NEWS EDITOR Chris Laffaille was reluctant to visit his old colleague Jean-Dominique Bauby. Like many other friends and acquaintances, he thought his presence might make Bauby uncomfortable. A stroke in December 1995 had left the then chief editor of French Elle magazine unable to talk, breathe, even swallow on his own. Who could imagine that, lying in a hospital bed 130 miles from Paris—where the bon vivant had been known for his love of fast cars, good food and clever banter—Bauby was “still so much himself,” as Laffaille puts it. “If I had known, I would have gone to visit him with my English tabloids, read him stories so we could have a good laugh together. But I didn’t know, and I didn’t dare go see him like he was.”
Now he will never have the chance. On March 10, Bauby, 44, died of complications from an infection—but not before letting the world know that he was, in fact, still every bit himself. Two days before his death, Bauby published his memoir, The Diving Bell and the Butterfly, chronicling his life within a lifeless body. Critics have heralded the book, which was an instant sellout in France and has just been released in the United States, as a literary triumph. But most astonishing is the fact that Bauby “wrote” the text at all. Robbed of the use of nearly every body part except his left eyelid, he dictated his tale, letter by letter, with some 200,000 blinks of his eye.
“It is impossible to find an equation to explain this remarkable book,” says director Jean-Jacques Beineix, whose documentary on Bauby aired in France in March. “For years he’d thought about writing a novel,” adds one close friend, “but he said he couldn’t find the time. In a weird way his accident gave him that time.”
Bauby’s paralysis was not, of course, caused by an accident but by a cruel twist of fate. Separated from his wife, Sylvie de la Rochefoucauld, the father of two—Théophile, now 11, and Céleste, 9—was out for a drive on Dec. 8, 1995, when he starting seeing double. Immediately taken to a clinic near Paris, he fell into a coma. When he awoke three weeks later, he was on life support in Paris’s Lariboisière hospital, paralyzed by a rare condition called locked-in syndrome, caused by a stroke-induced trauma to the brain stem.
Keeping a bedside vigil, Bauby’s best friend, Bernard Chapuis (former editor of Vogue Hommes), and two others first saw signs of life in Bauby’s left eye. “We asked him to blink if he recognized us,” says Chapuis, “and he did.” Hope for physical improvement, however, was slight, and Bauby was sent for long-term care to the Maritime hospital in Berck, a three-hour drive from Paris. There, speech therapist Sandrine Fichou taught him to communicate through the so-called Alphabet of Silence: She called out letters, arranged by frequency of use, and he made sentences by opening his eye wide on the desired letter.
Last June, Bauby wrote a hello note that was photocopied and sent to friends, including Antoine Audouard, a book editor at the publisher Robert Laffont. Eventually, Audouard was inspired by Bauby’s desire to write an account of his locked-in life—but their initial visit in March of 1996, says Audouard, was tough: “The first 10 minutes were terrible. Somebody who’d been so alive, telling jokes all the time, and then you see this tortured body with tubes everywhere.” Four months later, when Audouard sent editor Claude Mendibil to Berck, she at first struggled to communicate with Bauby; ironically, she says, it was he who set her at ease, telling her, “Don’t panic.”
For the next few months, Mendibil spent three hours six days a week taking dictation. Through her, Bauby gave voice to the “butterflies” of his mind. “One can fly in space and time, set out for Tierra del Fuego or King Midas’s court,” he wrote. Trapped in his body, however, he also knew intense sadness. “Théophile, my son, is sitting [here], his face 20 inches from my own,” Bauby wrote, “and I, his father, do not have the simple right to touch his thick hair…. Suddenly that fact begins killing me.”
Despite the pain, says his girlfriend of two years, Elle beauty-and-health writer Florence Ben Sadoun, Bauby’s spirit did not die. Twice a week, when Ben Sadoun, 36, made the long trip from Paris to visit him, he rewarded her with affection, jokes—and grumbling if her hair and makeup didn’t suit him. “He liked me to look nice,” she says with a smile. “He was the man I loved. I never saw him as anything else. We stayed in love. We even had fights. It’s what kept us both alive.”
Indeed, when death arrived, it found many of Bauby’s friends unprepared. Ben Sadoun had been hoping to travel with him. Audouard was talking of a second book. Instead of celebrating the success of The Diving Bell with Bauby, Chapuis had the task of taking his children to see their father the day after he died. “It wasn’t easy,” he says, “but they were so good. They said goodbye.” As did Chapuis, who, with hundreds of other mourners, buried Bauby in Reebok sneakers and a favorite Ralph Lauren sweater. “We had moments of despair in the beginning,” Chapuis says of Bauby’s ordeal. “We held each other and cried, and I’d talk to him, trying to find the right words. The miracle is that we succeeded.”
KAREN S. SCHNEIDER
CATHY NOLAN in Paris