How a ‘Locked-in’ Man Dictated a Bestseller Using Only One Eyelid

Trapped in a body that almost overnight became a brittle shell of its former state, unable to move due to sudden complete paralysis. Such was the fate of French writer Jean-Dominique Bauby, who managed to carry on living and creating with only the blink of an eye as his means to communicate.
Jean-Dominique Bauby with his wife Silvie before the stroke.

We’ve all heard the idiom ‘blink and you’ll miss it’, but for Bauby the opposite was the case. On December 8, 1995, the dapper and engaging editor-in-chief of Elle magazine and author of The Diving Bell and the Butterfly (Le Schaphandre et le Papillon) was being driven home by his chauffeur while his 12-year old son Théo sat next to him. During that car ride Bauby suffered a massive stroke, one so serious it severed his spinal cord from his brain. It left him in a coma for 20 days, and upon regaining consciousness had him able to move his left eyelid, nothing else. Blinking became Bauby’s only means of communicating with the world around him.

Bauby and his two children, Théo and Céleste.

Only 43 at the time of the stroke and a well-known figure in Paris, Bauby, the father of two young children and happily in love with his girlfriend of two years, Florence Ben Sadoun, became a mute quadriplegic who would spend the rest of his life in either a wheelchair or hospital bed.

Jean-Do, as he was lovingly referred to by those closest to him, was officially suffering from a condition known as Locked-in Syndrome (LiS), a debilitating neurological disorder that leaves its sufferers with respiratory issues, varying degrees of paralysis, and loss of the motor skills that make verbal communication possible. They do retain the ability to be aware of their environment, hence the ‘locked-in’ branding (much easier to remember than its official title, cerebromedullospinal disconnection).

It is the same chronic ailment that afflicts physicist Stephen Hawking as a result of his having ALS (Lou Gehrig’s disease), but unlike Hawking’s access to groundbreaking communication system technology Bauby had to do all of his talking-and writing-the old-fashioned way.

In a screen capture from the adaptation of The Diving Bell and the Butterfly, actress Marie-Josée Cruz holds a sign used as part of the Silent Alphabet dictation system. Photo courtesy of Miramax.

Questions could be posed to Bauby and answered with a simple ‘one blink for yes, two blinks for no’ arrangement. For more detailed interactions, a system called the Silent Alphabet was used, with friends and family reciting the alphabet for him and Bauby blinking at the letter he needed to spell out what he was trying to say. His was also a wicked sense of humour, and the time it took for him to dictate a thought (sometimes two minutes for a single word) was always worth the effort for all involved.

As he would eventually write in his memoir, “If I must drool,” he spelled out one day, “I may as well drool on cashmere.” During a 2008 interview with The Guardian Ben Sadoun relates how Bauby, never at a loss for words even when unable to vocalize them, would comment (sometimes disapprovingly) about her outfits or her makeup on her frequent visits to him in northern France’s Berck-sur-Mer Hospital.

“He was the man I loved. I never saw him as anything else.” she said, noting they would act as you would expect any couple to, disagreements and all.

Bauby on his bed, writing by blinking his eye.

While Bauby was always excited for visits from Ben Sadoun and his children (he also has a daughter, Céleste), relations with their mother, Sylvie de La Rouchefoucauld, were strained. The couple had been together for 10 years but had had never married, and de La Rouchefoucauld rarely made the trek or took the time to sit with Bauby, and Ben Sadoun made every effort to avoid her.

Despite the drama in his personal life and traumatic events in hospital (including a doctor sewing his right eye shut in the hopes of avoiding it becoming infected), inside Bauby’s head there was a story desperate to get out. A publisher arranged for writer Claude Mendibil to sit with Bauby three hours a day, seven days a week, and using a speech therapist’s specially designed alphabet that arranged letters by the frequency of their use what would become The Diving Bell and the Butterfly was written over a two-month time period.

It took 200,000 blinks, but the 130-page memoir that was Bauby’s own assessment and musings about what his life had become as a result of his stroke became an immediate success, selling out its first run of 25,000 copies in just one day. It was published March 7, 1997, and two days later on March 9, Bauby passed away from complications from pneumonia.

In 2007, the French-language film adaptation of The Diving Bell and the Butterfly was released to world-wide critical acclaim. The title, a metaphor for Bauby’s condition (his body being the diving bell, his mind, imagination, and memory being the butterfly), was a fixture during that year’s awards season.

Those close to Bauby distanced themselves from the film, however, since by the time the story found its way onto the silver screen numerous major changes had been made (including Bauby having three children and the de La Rouchefoucauld character being a doting wife). Regardless, a thought from a mind that refused to ever rest sums up the man who was Jean-Dominique Bauby: “I need to feel strongly, to love and to admire, just as desperately as I need to breathe.”