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.

Start your day with The Independent, sign up for daily news emails
ebooks
ebooksA special investigation by Andy McSmith
  • Get to the point
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

Ashdown Group: HR Assistant (Events business) - Central Manchester - £20K

£18000 - £20000 per annum + Benefits: Ashdown Group: HR Assistant (Events busi...

Recruitment Genius: Project Engineer

Negotiable: Recruitment Genius: This privately-owned company designs and manuf...

Recruitment Genius: Human Resources Officer

£22000 - £25000 per annum: Recruitment Genius: An opportunity has arisen at th...

Ashdown Group: HR Manager - London - £40,000 + Bonus

£36000 - £40000 per annum + Bonus: Ashdown Group: HR Manager (Generalist) -Old...

Day In a Page

Timeless drama of Championship race in league of its own - Michael Calvin

Michael Calvin's Last Word

Timeless drama of Championship race in league of its own
Where the spooks get their coffee fix: The busiest Starbucks in the US is also the most secretive

The secret CIA Starbucks

The coffee shop is deep inside the agency's forested Virginia compound
Revealed: How the Establishment closed ranks over fallout from Loch Ness Monster 'sighting'

How the Establishment closed ranks over fallout from Nessie 'sighting'

The Natural History Museum's chief scientist was dismissed for declaring he had found the monster
One million Britons using food banks, according to Trussell Trust

One million Britons using food banks

Huge surge in number of families dependent on emergency food aid
Excavation at Italian cafe to fix rising damp unearths 2,500 years of history in 3,000 amazing objects

2,500 years of history in 3,000 amazing objects

Excavation at Italian cafe to fix rising damp unearths trove
The Hubble Space Telescope's amazing journey, 25 years on

The Hubble Space Telescope's amazing journey 25 years on

The space telescope was seen as a costly flop on its first release
Did Conservative peer Lord Ashcroft quit the House of Lords to become a non-dom?

Did Lord Ashcroft quit the House of Lords to become a non-dom?

A document seen by The Independent shows that a week after he resigned from the Lords he sold 350,000 shares in an American company - netting him $11.2m
Apple's ethnic emojis are being used to make racist comments on social media

Ethnic emojis used in racist comments

They were intended to promote harmony, but have achieved the opposite
Sir Kenneth Branagh interview: 'My bones are in the theatre'

Sir Kenneth Branagh: 'My bones are in the theatre'

The actor-turned-director’s new company will stage five plays from October – including works by Shakespeare and John Osborne
The sloth is now the face (and furry body) of three big advertising campaigns

The sloth is the face of three ad campaigns

Priya Elan discovers why slow and sleepy wins the race for brands in need of a new image
How to run a restaurant: As two newbies discovered, there's more to it than good food

How to run a restaurant

As two newbies discovered, there's more to it than good food
Record Store Day: Remembering an era when buying and selling discs were labours of love

Record Store Day: The vinyl countdown

For Lois Pryce, working in a record shop was a dream job - until the bean counters ruined it
Usher, Mary J Blige and Will.i.am to give free concert as part of the Global Poverty Project

Mary J Blige and Will.i.am to give free concert

The concert in Washington is part of the Global Citizen project, which aims to encourage young people to donate to charity
10 best tote bags

Accessorise with a stylish shopper this spring: 10 best tote bags

We find carriers with room for all your essentials (and a bit more)
Paul Scholes column: I hear Manchester City are closing on Pep Guardiola for next summer – but I'd also love to see Jürgen Klopp managing in England

Paul Scholes column

I hear Manchester City are closing on Pep Guardiola for next summer – but I'd also love to see Jürgen Klopp managing in England