The Diving-bell and the Butterfly - Jean-Dominique Bauby

...or breathe without medical assistance. The stroke had also left him with impaired hearing, painfully amplifying and distorting many of the sounds around him, and the ability to still feel pain in the body that confined him (''my hands, lying curled on the yellow sheets, are hurting, although I can't tell if they are burning hot or ice cold''). Bauby was forced to concede that his former high-living Paris life was over, now as unreachable as the objects ...
...had not been impaired by the stroke by blinking his left eye. He had soon established a communication system with his visitors and hospital staff, whereby they recited the alphabet - this soon developed into a French language frequency ordered alphabet, for efficiency - and Bauby blinked to select each letter of the word he wanted. This system, however, worked better with some people than others. ''It is a simple enough system,'' he explains. ''You ... more

In December 1995, French journalist and editor-in-chief of Elle magazine Jean-Dominique Bauby seemed to have it all. He was a happy and healthy father of two with a successful career and many friends, a man known for his wit, style and love of life. However, on an outing with his young son not long before Christmas, he was suddenly taken ill and needed to be rushed into hospital with breathing difficulties, where he soon lost consciousness. After 20 days in a coma, Bauby awoke to find that he had suffered a catastrophic stroke in his brain stem, which had left his mind fully functioning but trapped in a body he could no longer control, depriving him of movement and speech. This rare condition, appropriately known as "locked-in syndrome", left him with conscious control over his left eye, but unable to move any other muscles in his body; he couldn't even swallow or breathe without medical assistance. The stroke had also left him with impaired hearing, painfully amplifying and distorting many of the sounds around him, and the ability to still feel pain in the body that confined him (''my hands, lying curled on the yellow sheets, are hurting, although I can't tell if they are burning hot or ice cold''). Bauby was forced to concede that his former high-living Paris life was over, now as unreachable as the objects on the other side of his room in the hospital complex at Berck-sur-mer. He was just 44.

With some effort, Bauby managed to communicate with those around him that his mind had not been impaired by the stroke by blinking his left eye. He had soon established a communication system with his visitors and hospital staff, whereby they recited the alphabet - this soon developed into a French language frequency ordered alphabet, for efficiency - and Bauby blinked to select each letter of the word he wanted. This system, however, worked better with some people than others. ''It is a simple enough system,'' he explains. ''You read off the alphabet . . . until, with a blink of my eye, I stop you at the letter to be noted. The manoeuvre is repeated for the letters that follow, so that fairly soon you have a whole word. Fairly soon! Less soon when the amanuensis anticipates and makes mistakes. One day when, attempting to ask for my glasses (lunettes), I was asked what I wanted to do with the moon (lune).'' While this system may seem a remarkable way for someone to communicate their basic needs - to ask that the TV be turned down or the curtains drawn, for instance - what is almost miraculous is that Bauby used it to dictate his book, "The Diving Bell and the Butterfly" (referring to the author's body, which traps him like a diving bell, and his mind, which is as free as a butterfly). The book took about 200,000 blinks to write, and each word about two minutes to dictate; he had to compose and edit the book entirely in his head, rehearsing whole sections so he could dictate it word perfectly to his assistant Claude Mendibil when she arrived to transcribe it over the summer of 1996.

I first heard of "The Diving Bell and the Butterfly" in an article in the "Readers' Digest" shortly after the book first came out. This intrigued me at the time, but it was not until I saw another article about the book quite recently that I was reminded of it and felt motivated enough to pick up a copy from the library. The book is only small (132 pages) and I read it easily over the course of a weekend, yet it is a strongly written and powerful work for all its brevity. The book is arranged in a series of short chapters, each covering a different theme or idea, as Bauby describes what life is like for someone with locked-in syndrome, his everyday experiences, his thoughts and ideas, and experiences from before he suffered his stroke. While he admits that his ''communication system disqualifies repartee,'' it did allow him to elegantly describe a range of physical and emotional experiences for his readers, some witty, others nostalgic, and a few capturing the tragedy of his situation. There are scenes in Bauby's narrative - his discovery, on seeing himself reflected in a windowpane, that he is not just ''reduced to the existence of a jellyfish'' but is ''also horrible to behold'' - that you might be inclined to describe as unbearably sad, if ''unbearable,'' thanks to this book, were not a word you will never again use quite so loosely. On a lighter note, we experience why Bauby describes his mind as a butterfly, as he indulges his imagination to cope with his situation and occupy the long empty hours when he is without visitor, physiotherapist, nurse or doctor at his bedside. He dreams of lying with the woman he loves, of spending time with his children, of cooking and enjoying his favourite meals especially, now that he can no longer eat solids and is fed through a tube.

Throughout the period when he was dictating the book, Bauby's prognosis was uncertain. The author mentions what he has been told by his doctors: that while full recovery from locked-in syndrome was virtually impossible, there was a chance that in the long term he might recover sufficient use of his muscles to allow him to breathe without the aid of machines, and possibly even to speak and eat again. By the time he comes to the end of his dictation, he has managed to regain a small amount of movement in his head and describes his joy at being able to now see a greater amount of his room than he could when he first awoke there. While "The Diving Bell and the Butterfly" ends on what seems like a hopeful note for the future, we the readers know that Bauby suffered sudden heart failure just a few days after his novel - which sold 150,000 copies in its first week and became a number 1 bestseller across Europe - was released in France in March 1997 (N.B. this is hardly a spoiler; it was on the back cover of the edition I borrowed). This short but startling book is well worth reading, but is best approached mindful of the fact that we are very lucky to be reading it in between many blinks of our own eyes. It is an astonishing, humbling, at times uncomfortable read, but one that is rightly regarded as something of a modern classic.

Recommended.

Original Title: Le scaphandre et le papillon
Translation: Jeremy Leggatt
Pages: 132
Price: £3.49, paperback, new, on Amazon.co.uk 

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