A Triumph of the Spirit

A paralyzed French journalist dies just days after the publication of his memoir celebrating life.

If the 1995 stroke that paralyzed Jean-Dominique Bauby was cruelly premature, at least death had the courtesy to wait until the 45-year-old French journalist finished his last assignment. Less than 72 hours after readers and critics alike praised his memoir of living with locked-in syndrome—a state of virtually total paralysis that leaves the victim, in Bauby's words, "like a mind in a jar"—the former editor in chief of French Elle magazine died. Bauby's book Le Scaphandre et le Papillon (The Bubble and the Butterfly) is a celebration of life written by a man incapable of speech or movement.

A career journalist whose wit, talent and savoir vivre became personal trademarks, Bauby saw his fast-paced life come to an abrupt end on Dec. 8, 1995, with the stroke that left him paralyzed. Though Bauby was dependent on hospital staff and machinery for all his bodily functions, his brain remained in perfect condition. He soon discovered that the only muscle still under his control was his left eyelid. By telegraphing a series of blinks, Bauby let his nurses know that his mind was alive and well inside its immobile frame. They responded by reciting a special alphabet to him with the understanding that Bauby would blink at letters he wanted written down. Repeating the process resulted in words, sentences and entire discussions.

In June 1996, Bauby blinked out a letter to some 60 friends and associates to reassure them that his state was not vegetative. Editors at French publisher Robert Laffont, who had worked with Bauby before his stroke, were so impressed that they proposed he use the method to write a book about his condition. Bauby accepted and, composing and editing his prose before dawn, dictated entire sections of the book from memory, letter by letter, to Laffont employee Claude Mendibil.

The result is a remarkable 137-page account of the tedium and difficulties—and sometimes even joys—of the locked-in life. Complaining about his fruitless "physical rehabilitation" sessions, for example, Bauby writes, "I would be the happiest man in the world if I could just properly swallow the saliva that permanently invades my mouth." He lets his readers know that his celebrated wit survived the stroke by pointing up the ironic aspects of his condition. Bauby recalls a contract he signed before his illness to write an updated version of the Alexandre Dumas classic The Count of Monte Cristo—a tale involving a paralyzed individual who communicates by blinking. "The gods of literature and neurology decided otherwise," Bauby laments, adding a twist. "To reverse the decrees of fate, I now have in mind a story whose main character is a runner instead of a paralytic. Who knows? It might work."

The book is not, of course, all playful reflections. 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 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 US 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."