The truth about "The Diving Bell and the Butterfly"

Family and friends of Jean-Dominique Bauby speak out about how Julian Schnabel's Oscar-nominated film honors and defames Bauby's real story.

By Beth Arnold

Read more: Movies, Neurology, Arts & Entertainment, Arts & Entertainment Features

Feb. 23, 2008 | PARIS -- The quietly stunning film of Jean-Dominique Bauby's phenomenal memoir, "The Diving Bell and the Butterfly," is nominated for four Oscars this year. They include directing by Julian Schnabel -- an honor he won for the film at the Cannes Film Festival and Golden Globes -- and best adapted screenplay by Ronald Harwood, who won an Oscar in 2002 for his adaptation "The Pianist." "The Diving Bell and the Butterfly" is also nominated for cinematography and editing, and has won numerous awards in film festivals across the world.

There is every reason for the film's success. It recounts the remarkable life of Bauby, the debonair editor of French Elle magazine who in 1995 suffered a massive stroke. He slipped into a coma that lasted 20 days and awoke to find himself paralyzed from head to toe. He was diagnosed with a rare neurological disorder called locked-in syndrome.

A prisoner inside his useless body, Bauby, 43, could think and reason, smell and hear (though not well). With the only part of his body that he could move -- his left eye -- he could see and later learn to express himself. His speech therapist and later his friends would read him an alphabet, and Bauby would blink at the letter he wanted. He formed words, phrases and sentences, and ultimately, over the course of two months, working with ghostwriter Claude Mendibil, who took down word for word what he said, he completed his memoir.

The evocative title comes from Bauby's notion that while his body was submerged and weighted down -- impossible to move -- his imagination and memory were still free and as light as a butterfly's wings: "My cocoon becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court." A few days after the book was published to rave reviews in March 1997, Bauby died of an infection.

Released last spring, the film is a visual knockout. Schnabel draws on Bauby's fantasies to blast moviegoers with a kaleidoscope of dreamy images -- some subtle, some banging loud -- and an array of captivating music and sounds. The wonderful script takes the point of view of Bauby himself. The fourth wall between the audience and film has fallen away and the audience experiences the world through his eyes.

The film is said to be "based on a true story," which, of course, is from Bauby's book. The problem is that mixing his factually accurate journey through locked-in syndrome with a personal life that has been fictionalized for film has affected real people who were intensely involved in Bauby's life before and after his accident. Now some of his closest friends feel the movie may forever obscure the truth of his life. They fear this collision between art and reality has created a revisionist history that is accepted by filmgoers around the world, and that this is what will remain in the collective cultural memory. For the first time, they are speaking publicly about it. As one of Bauby's friends says, "There's the Real Story. The Film. And the New Real Story."

The Real Story

When books are made into screenplays, dramatic action takes first seat to writerly fluff or facts. In this case, there are minor differences between the book and the film that don't change the meaning or spirit of Bauby's life and text. He had two children instead of three. Sylvie de la Rochefoucauld, Bauby's partner of 10 years and mother of their two kids, Théo and Céleste, says Schnabel liked all three child actors and couldn't make a decision of whom to cast. He called her and asked if it was OK to use them all, and she said yes.

In the movie, Bauby feels guilty when his friend "Roussin" (Jean-Paul K in the book) comes to see him. Roussin was captured and held hostage in Beirut, Lebanon, after Bauby had given up his airline seat to him. Jean-Paul K was captured but it wasn't when Bauby gave him his seat. If Jean-Paul K did come to see him, Bauby didn't write about it. What Bauby says in the book is that he felt guilty for never having seen Jean-Paul K after his release. The movie captures his guilt by dramatically inserting the character into Bauby's hospital life. And in the last section of the film, Bauby is driving through the boulevards of Paris and green countryside to de la Rochefoucauld's house to pick up his son. In real life, a chauffeur was driving him. Which is more cinematic?

But the biggest difference between Bauby's book and the film is the story of the women in his life. The movie shows Bauby, known to his friends as Jean-Do, as an invalid babe magnet and the women surrounding him as vying for his attention. Bauby doesn't write about this or anything like it in his book, although friends describe him as having been very charming with a great sense of humor -- quick and sometimes biting. He was a bon vivant and engaging. One friend portrayed him as having power in his silence once he became ill.

The major difference between book and film is that the mother of Bauby's children -- this is how he refers to her in the film as he points out that they were never married -- pays him saintly visits day after day, despite the fact he doesn't love her, and the girlfriend he is in love with never shows up at the hospital at all. In the most devastating scene of the movie, Bauby's girlfriend tells him on the phone that she can't come visit him because she cannot bear to see him like that. He painfully spells out his response to the mother of his children so that she can interpret it to his girlfriend. Bauby's touching reply is that each day he waits for her. At that point, his wounded former partner slams the phone down, and the audience withers with the pain of her rejection.

In real life, this scene never happened. His girlfriend, Florence, was at the hospital day after day spending time with him. (De la Rochefoucauld was at that point his ex.) In the book, de la Rochefoucauld is only mentioned in one bittersweet chapter in which she brings the children to the hospital to celebrate Father's Day for the first time, and they experience a wonderful day on the beach together.

Florence is mentioned several times, including an indelible memory of her on the day of his accident: "I pressed my forehead against the windowpane to gauge the temperature outside. Florence softly stroked the nape of my neck. Our farewells were brief, our lips scarcely brushing together. I am already running down stairs that smell of floor-polish. It will be the last of the smells of my past."

Bauby also writes: "And here I had no problem identifying the watchers on either side of the bed: they were members of the personal bodyguard that spontaneously sprang up around me immediately after the disaster." They include Florence; Bernard Chapuis, a writer and his best friend; Anne-Marie Périer, his boss at Elle, and her husband, Michel Sardou; and Patrick McClellan, his cousin.

With affection, he writes about the rest of his close gang: his other best friend, photographer Brice Agnelli; and his old buddy, editor Vincent Lalu, with whom he had worked as an accomplished journalist for many years before editing Elle. Florence, Chapuis, McClellan and Agnelli drove the 300 kilometers to the hospital at least once or twice a week. These were the frontline troupers throughout the ordeal.

As for the women in the hospital who were important, Chapuis says there were three: 1) Bauby's speech therapist, Sandrine Fichou (called Henriette in the film), who set up the communication code, which became his silent voice. He called Sandrine his guardian angel in his book. 2) Mendibil, who transcribed the book, which is dedicated to her and his children. 3) Florence.

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