In the blink of an eye...

JEAN-Dominique Bauby had everything a man could want, and he was only 43

JEAN-Dominique Bauby had everything a man could want, and he was only 43. As editor-in-chief of Elle magazine, he had risen to the pinnacle of fashion journalism. He enjoyed fine food and wine and the company of beautiful women. On the morning of December 8th, 1995, Bauby woke up "heedless, perhaps a little grumpy, beside the lithe, warm body of a tall dark-haired girl" - his new girlfriend Florence.

The local BMW dealer had lent him a gun-metal grey model to try out for the day with his driver. On his way to the office, Bauby heard the old Beatles song, A Day In The Life on the radio; the final crescendo "like a piano crashing down seven floors" coursed through his brain all day. It was to be, in his words, his last day as a perfectly functioning earthling.

Bauby had just picked up his son Theophile at his estranged wife's house when he felt ill and stopped the BMW. He didn't realise that a cerebro-vascular accident was short-circuiting his brain-stem, which transmits orders from the brain to the body. His last thought, before losing consciousness for three weeks, was that he would have to cancel his theatre tickets for that evening. When he woke up in the old Berck-sur-Mer hospital - on the English Channel, he was not able to breathe, speak, eat or move any part of his body other than his left eyelid.

In the past it was known as a massive stroke and you simply died," Bauby explained in his best-selling new book, The Diving Bell And The Butterfly. "But improved resuscitation techniques have now prolonged and refined the agony. You survive, but you survive with what is so aptly known as `locked-in syndrome'... It is a small consolation, but your chances of being caught in this hellish trap are about those of winning the lottery."

READ MORE

That Bauby was able to "write" na book in this condition is a monument to his determination. When he learned that the Paris rumour-mill was describing him as "a total vegetable", Bauby resolved to prove "that my IQ was still higher than a turnip's". For two months last summer, he awoke before dawn each morning to plan his text. He memorised each word, phrase and paragraph. At 12:30, Claude Mendibil, the woman sent by his Paris publisher, arrived to harvest his prose.

"E,S,A,R,I,N,T Ms Mendibil repeated the alphabet in the order of the frequency that letters are used in French. When she pronounced the letter which Bauby wanted her to note, he signalled this by widening his left eye. Ms Mendibil read completed phrases back to him; one blink of his eye confirmed she had it right. Two blinks meant no, there was an error. A longer closing of the eyelid signified a full stop. It took more than 200,000 blinks to write the book.

French literary critics have lavished praise on the resulting tightly composed, funny, heartrending text; praise that Bauby had just a few days to savour before he died of respiratory failure on March 9th. The Diving-Bell And The Butterfly has stayed near the top of the French best-seller list since it was released in early March. It is selling up to 20,000 copies a day and looks set to become a minor classic; Fourth Estate publishers will release Jeremy Leggalt's translation of the 137-page book in Britain and Ireland on April 17th.

Bauby used metaphors of the deep-sea to convey what it was like to live with locked-in syndrome. "Something like a giant invisible diving-bell holds my whole body prisoner," he wrote in the foreward. But if his body was chained to the miserable sea-bed, his spirit was free: "My mind takes flight like a butterfly. There is so much to do ... " He was intrigued to learn that the 19th-century Empress Eugenie was the patron of his hospital. From his wheelchair, he studied a marble bust of her and fantasised about her visiting the hospital: "I mingled with the chattering flock of ladies-in-waiting, and whenever Eugenie progressed from one ward to another I followed her hat with its yellow ribbons, her silk parasol and the scent of her passage, imbued with the eau de cologne of the court perfumer. On one particularly windy day I even dared draw near and bury my face in the folds of her white gauze dress with its broad satin stripes. It was as sweet as whipped cream, as cool as the morning dew. She did not send me away. She ran her fingers through my hair and said gently, `There, there, my child, you must be very patient ...' She was no longer the empress of the French but a compassionate divinity in the manner of Saint Rita patron of lost causes."

One day, as he admired the bust of Eugenie, Bauby caught his own reflection in the glass showcase: "I saw the head of a man who seemed to have emerged from a vat of formaldehyde. His mouth was twisted, his nose damaged his hair tousled, his gaze full of fear. One eye was sewn shut, the other goggled like the doomed eye of Cain. For a moment I stared at that dilated pupil before I realised it was only mine. Whereupon a strange euphoria came over me. Not only was I exiled, paralysed, mute, half-deaf, deprived of all pleasures and reduced to a jellyfish existence, but I was also horrible to behold."

Jean-Jacques Beineix, the French movie director who made Diva and Betty Blue, filmed Bauby and editor Claude Mendebil writing the book in Bauby's hospital room. Beineix's moving documentary, House Arrest, was broadcast on France 2 television at the time of Bauby's death. Beineix's camera kept being drawn back to Bauby's single, cyclops-like healthy eye; his whole being, all of his emotions, were expressed through its green iris. There was even a hint of flirtation when he asked - through blinks - the pretty dark-haired Mendebil as she was leaving: "What are you doing tonight?"

Mendebil at first had difficulty calling Bauby by the familiar "tu", rather than the formal "vous"; Bauby begged her to say "tu" - it saved him two letters each time he addressed her. "Jean-Dominique made me forget he was paralysed," she said.

Bauby's prose was most powerful when he described his feelings. During a visit from his 10-year-old son, he was overwhelmed by emotion: "His face not two feet from mine, my son Theophile sits patiently waiting - and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck ... There are no words to express it. My condition is monstrous, iniquitous, revolting, horrible. Suddenly I can take no more. Tears well and my throat emits a hoarse rattle that startles Theophile. Don't be scared, little man, I love you."

Eerily, before his stroke Bauby had planned to write a modern version of Alexandre Dumas's Count Of Monte Cristo, in which a character suffered from locked-in syndrome. Bauby was capable of appreciating the irony of "the gods of literature and neurology" who made him so resemble this man: "Described by Dumas as a living mummy, a man three-quarters of the way into the grave, this profoundly handicapped creature summons up not dreams but shudders. He spends his life slumped in a wheelchair, the mute and powerless possessor of the most terrible secrets, able to communicate only by blinking his eye: one blink meant yes; two meant no.

As punishment for tampering with Dumas's masterpiece, Bauby joked, he would have preferred to have been transformed into a different character.

Lara Marlowe

Lara Marlowe

Lara Marlowe is an Irish Times contributor