A voice reaches us, crying out from the depths of a profound silence: "I am alive, I can think, and no one has the right to deny me these two realities . . ."
The words were conveyed by a flicker of the left eyelid and come from a truly extraordinary book, Le Scaphandre et le papillon ("The Deep-sea Diver and the Butterfly") by a former journalist, Jean-Dominique Bauby. He worked for journals like the Quotidien de Paris and Paris Match and for four years until December 1995 was the very successful chief editor of Elle.
Then the unthinkable happened. A cardiovascular accident paralysed him and sent him into a deep coma, from which he emerged 20 days later in the Hopital Maritime at Berck, on the north-east coast of France, his brain intact, but able only to blink his left eyelid. He was diagnosed as suffering from the rare disease called "Locked-in Syndrome", unable to breathe, swallow or eat without assistance.
In this inert body, the brain was working furiously, with a mixture of rage, exasperation and wild humour, trying to make people understand what he was thinking. With the help of a specialised nurse, Claude Mendibil, despatched by the publisher Robert Laffont, he was able to write his book, using only his ability to blink at the most frequently used letters of the alphabet - E, S, A, R, I, N, T and so on, while Mendibil pointed to them on a screen: one blink for "yes", two blinks for "no".
He would spend most of the night editing his thoughts and composing sentences, which he memorised so that when Mendibil arrived in the morning he could dictate the latest instalment to her in a succession of blinks. The man's courageous spirit and the passionate tracking of a good story were combined in this supreme journalistic effort to produce a book whose vivid title describes the immobile state of his body (the deep-sea diver in one of those heavy old-fashioned diving suits) and the state of his mind, fluttering like a rare butterfly from letter to letter, from word to word, page to page to the end of a book of just over 100 pages.
One would expect from this process a stiff factual report, but that is not the case. The book reads in flowing images that illuminate his predicament and enlighten our own darkness in the face of this mystery. The style is clear and fresh, and not without elegance, imagination and shafts of humour. One of the beauties of the book is the portrait that emerges of the attentive speech therapist who does her best to teach him to re-learn letters and syllables. There are bleak pictures of the wintry beach at Berck Plage, a melancholy symbol of his own sense of desertion. In his hypersensitive condition, each sound becomes unbearable, meaningless noise, and when his two sons come to visit him their capers have to be endured with saintly patience.
He is also in search of past time, of memory itself, of the books he has read, the poems he learnt by heart; even more sad, he thinks of all the books he wanted to read and hadn't done so. He has to listen to someone else reading them to him. He remembers a bet he lost at a racetrack, one of the many flashes of wry humour in his book. Above all, he remembers his life as a journalist, as an editor, with its agonies and disappointments, his sense of being exploited by the media, yet his desire, in his post as editor of Elle, to do something for the rights of women, to help them free themselves from various tyrannies.
All this is admirably conveyed in a documentary about Bauby's last year made with scrupulous care and great sensitivity by Jean-Jacques Beineix, already programmed before his death to be shown on the weekly literary television programme Bouillon de Culture, directed by Bernard Pivot. Guests are journalist friends of Bauby, the film director himself, the doctor and his assistant Mendibil at Berck. Beineix' title is significant, and ironic: Assigne a residence ("House Arrest"). He says Bauby became a real actor, eager to make the film work perfectly.
Bauby's determination to overcome difficulties that would send most of us into irretrievable depths of despair are expressed in the words: "I have decided to carry on my fight against fatality by setting up the first association in the world for people suffering from Locked-In Syndrome." So he created ALIS (Association du Locked-In Syndrome) and became its first president, stating his objectives thus: "To collect all the present information about the syndrome, to allow sufferers to communicate better with one another, to create means of breaking the solitude and isolation, and to make them true citizens of the 21st century." Already many famous people have become sponsors.
The address of ALIS is: 38 boulevard Jean-Jaures, 92100 Boulogne, France (telephone/ fax 00331 4604 3338).
Jean-Dominique Bauby, journalist and writer: born Paris 1952; married (one son, one daughter); died Garches 9 March 1997.
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