Memoir Narrated Whilst Suffering Locked in Syndrome – Overcoming Adversity


Jean Dominique Bauby was a well-known French editor of the fashion magazine Elle. Born in France on 23 April in 1952, he had two children with his partner Sylvie de la Rochefoucauld. With no warning he became a paraplegic and completely speechless at the age of 44.

The Accident

It was one December evening in 1995 when Bauby was driving with his nine year old son, when he suddenly suffered a cerebrovascular seizure, a type of stroke. The stroke disconnected his brain from his spinal cord leaving him paralysed but his mental faculties intact, the condition is also known as locked in syndrome. Bauby lapsed into a coma and on waking up after 20 days, he was unable to walk or perform basic functions. His only functionality was blinking his left eyelid.

Narrating the Story by Blinking One Eyelid

Despite his debilitating illness, Bauby used his journalistic skills to narrate his story ‘The Diving Bell and the Butterfly’ giving compelling insight into what his life was like before the stroke and after living with locked in syndrome. Writing a story or novel under normal circumstances can be painstakingly difficult yet Bauby managed to narrate his story one letter at a time over a period of ten months, just blinking his left eyelid. One word took an average of two minutes, an assistant transcribing for four hours per day. This task would require immense patience and dedication but Bauby was not deterred.

“The struggle you’re in today is developing the strength you need tomorrow.” anon

For many a debilitating illness such as this would send us spiralling into depression, anger, resentment or even frustration. However, Bauby made the most of what capabilities he had – a blinking eyelid to communicate and narrate to the world what it was like to be living with locked in syndrome. He may have been limited physically but he was unbelievably determined to live fully in his mind. Recounting vivid descriptions of an array of emotions, the loneliness, powerlessness and joyous experiences of the past to provide a glimpse of what was to the suffering now. Unlike other illnesses there was no forewarning or preparation for Bauby, the onset of locked in syndrome was immediate.

Bauby died from pneumonia on 9th March 1997 two days after the publication of his book, never knowing that his book was an international bestseller and that the movie adaptation of his book would be nominated for several awards.

You Are Not Defined by Your Circumstances

Clearly Bauby was not limited by his circumstances despite being paralysed with the exception of his blinking eyelid, his mind was superbly intact thus giving him the power to narrate his memoir. So insightful was his book that for many it provided a rare and telling glimpse of what to expect living with locked in syndrome. Bauby could have resigned to his fate, yet he chose to consume his time in a constructive and meaningful manner utilising his literary skills. Bauby was undeterred.

“Don’t quit when you encounter an obstacle. Adapt a new strategy to conquer it.” Lailah Gifty Akita

In life we can either allow our challenges to dominate or allow the possibilities to flourish when we choose to focus on what is possible. The decision is ours alone, so choose wisely.