If you’re Jean-Dominique “Jean-Do” Bauby, you dictate the contents of your life story.
In December 1995, Jean-Do was the editor-in-chief of Elle magazine. He was not a nice man. Fabulously well-connected, he had a wife he treated poorly and regularly humiliated by his affairs with models, children he ignored, and a mistress he actually loathed and suffered. Jean-Do was successful but wretched. One fine day, he was felled by a debilitating stroke and lost complete control over his entire body, becoming a human vegetable with the extremely rare condition of “locked-in syndrome”. He could not speak, feed or relieve himself, or move, but he could take in his entire surroundings and he could do just one thing … blink his left eyelid. The best analogy was that of a diver, locked in an old-fashioned diving-bell suit, unable to communicate to home base, breathing, but doing nothing else while caged in that physical constraint.
A speech therapist designed a method of communicating with Jean-Do. She developed a chart displaying all of the letters in their order of frequency of use, and not alphabetically. Using this chart, Jean-Do could “spell out words”. All he had to do was to blink at the letter he wanted when it was presented, the therapist or attending nurse would stop, and they start at the beginning of the chart again until he got to the next letter. With this unorthodox methodology, Jean-Do “spelled” out commands and his wishes and “dictated” stories and memories into what became his autobiography, The Diving-Bell and the Butterfly. The slim memoir was an instant best-seller and adapted into Julian Schnabel’s award-winning French-language film in 2007.
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Nevertheless, although the film was not a major box office success, it received very high reviews and such accolades as BAFTA, Golden Globe and Cesar Awards, Best Director honours at the Cannes Film Festival, and four Academy Award nominations. It is consistently ranked amongst the top 250 highest-rated films on the Internet Movie Database.
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The speech therapist's chart |
It is a film that tells it story from its self-pitying protagonist’s point of view. Visually, the camera is planted to show surroundings exactly as Jean-Do sees them. When he first wakes from a long coma and attempts to answer his attending physician’s questions, and the doctor states that the patient could not speak, Jean-Do screams in his head but slowly comes to the horrifying realization that he has lost the ability to communicate. Even more terrifying is the sequence where the doctor, in order to save his non-functioning right eye from drying out permanently, sews it shut using a surgical needle and thread, seen from the operating patient’s point of view, and there’s nothing in the world he could do to stop it. The situation is helpless, insulting, humiliating and frightening.
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"Dictating" his memoirs |
Bauby does not spend his time narrating or bemoaning his death. In his mind, he is urging for a woman’s sensual touch, the orgasmic gastronomic pleasure of a meal in his favourite restaurant, and simply absorbing the ability of moving about. When he is wheeled about the hospital and catches the reflection of his deformed face, he exclaims to himself, "God, who's that?" What does he say next? "I look like I came out of a vat of formaldehyde." In other words, his personality survived, and he’s still the dryly witty rascal he was before his stroke. He may be robbed of all other dignities in life, but his mind is his final refuge and no one can penetrate that fortress. There are fantasy sequences involving the seduction of historical figures and Nureyev dancing about the hospital corridors.
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Presenting the published "dictated" memoir to Jean-Do |
''My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do.'' – Jean-Dominique Bauby, The Diving-Bell and the Butterfly