Obituary: Jean-Dominique Bauby

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).

James Kirkup

Jean-Dominique Bauby, journalist and writer: born Paris 1952; married (one son, one daughter); died Garches 9 March 1997.

Latest stories from i100
Have you tried new the Independent Digital Edition apps?
Independent Dating
and  

By clicking 'Search' you
are agreeing to our
Terms of Use.

iJobs Job Widget
iJobs People

Project Manager (HR)- Bristol - Upto £400 p/day

£350 - £400 per annum + competitive: Orgtel: Project Manager (specializing in ...

HR Business Partner (Maternity Cover 12 Months)

£30000 - £34000 Per Annum 25 days holiday, Private healthcare: Clearwater Peop...

Project Manager (Procurement & Human Resources)

Unpaid: Cancer Research UK: If you’re a professional in project management, lo...

Geography Teacher

£85 - £140 per day: Randstad Education Cheshire: We require a teacher of Geogr...

Day In a Page

Save the tiger: The day America’s love of backyard tigers led to a horrific bloodbath

The day America’s love of backyard tigers led to a horrific bloodbath

With only six per cent of the US population of these amazing big cats held in zoos, the Zanesville incident in 2011 was inevitable
Samuel Beckett's biographer reveals secrets of the writer's time as a French Resistance spy

How Samuel Beckett became a French Resistance spy

As this year's Samuel Beckett festival opens in Enniskillen, James Knowlson, recalls how the Irish writer risked his life for liberty and narrowly escaped capture by the Gestapo
We will remember them: relatives still honour those who fought in the Great War

We will remember them

Relatives still honour those who fought in the Great War
Star Wars Episode VII is being shot on film - and now Kodak is launching a last-ditch bid to keep celluloid alive

Kodak's last-ditch bid to keep celluloid alive

Director J J Abrams and a few digital refuseniks shoot movies on film. Simon Usborne wonders what the fuss is about
Once stilted and melodramatic, Hollywood is giving acting in video games a makeover

Acting in video games gets a makeover

David Crookes meets two of the genre's most popular voices
Could our smartphones soon be diagnosing diseases via Health Kit and Google Fit?

Could smartphones soon be diagnosing diseases?

Health Kit and Google Fit have been described as "the beginning of a health revolution"
Ryanair has turned on the 'charm offensive' but can we learn to love the cut-price carrier again?

Can we learn to love Ryanair again?

Four recent travellers give their verdicts on the carrier's improved customer service
Billionaire founder of Spanx launches range of jeans that offers

Spanx launches range of jeans

The jeans come in two styles, multiple cuts and three washes and will go on sale in the UK in October
10 best over-ear headphones

Aural pleasure: 10 best over-ear headphones

Listen to your favourite tracks with this selection, offering everything from lambskin earmuffs to stainless steel
Commonwealth Games 2014: David Millar ready to serve up gold for his beloved Scotland in the end

Commonwealth Games

David Millar ready to serve up gold for his beloved Scotland in the end
UCI Mountain Bike World Cup 2014: Downhill all the way to the top for the Atherton siblings

UCI Mountain Bike World Cup

Downhill all the way to the top for the Atherton siblings
Save the tiger: The animals bred for bones on China’s tiger farms

The animals bred for bones on China’s tiger farms

The big cats kept in captivity to perform for paying audiences and then, when dead, their bodies used to fortify wine
A former custard factory, a Midlands bog and a Leeds cemetery all included in top 50 hidden spots in the UK

A former custard factory, a Midlands bog and a Leeds cemetery

Introducing the top 50 hidden spots in Britain
Ebola epidemic: Plagued by fear

Ebola epidemic: Plagued by fear

How a disease that has claimed fewer than 2,000 victims in its history has earned a place in the darkest corner of the public's imagination
Chris Pratt: From 'Parks and Recreation' to 'Guardians of the Galaxy'

From 'Parks and Recreation' to 'Guardians of the Galaxy'

He was homeless in Hawaii when he got his big break. Now the comic actor Chris Pratt is Hollywood's new favourite action star