In December 1995, editor of the French Elle magazine Jean-Dominique Bauby suffered a huge stroke aged only 43, which left him with a rare illness called locked-in syndrome.
Locked-in syndrome is a condition in which the patient experiences paralysis of almost every voluntary muscle, leaving them unable to move or to speak. The patient is effectively “locked in” their own body, as their brain usually continues to function ‘normally.’ If the patient has use of their eyes, as in many cases of the illness, they may be able to communicate through movement or blinking, such as in Bauby’s case, where he communicated through use of blinking according to a special alphabet.
[For anyone who has experienced sleep paralysis, the symptoms are somewhat similar for sufferers of locked-in syndrome, who unfortunately experience them permanently.]
- Taken from the film adaptation, an example of the alphabet used by Bauby to communicate.
I am currently studying a module called Life Writing in my final term in which I study various life writing texts, often referred to as autobiographies or biographies.
It’s in this module that I was introduced to the book The Diving Bell and the Butterfly by Bauby who spent 4 hours a day for 10 months using his left eyelid to dictate the book.
Bauby tells of his experience following his stroke, giving readers an insight into his condition and how it affects him. Bauby uses the title of his book as a metaphor for his condition – he feels trapped in his body as though he is in a diving suit, though his mind is as free as a butterfly.
His condition allows him to use his imagination to create a beautifully poetic insight into his mind following the stroke, and although it allows readers to familiarise themselves with such a cruel condition, the book is also somewhat uplifting. Despite its sadness, Bauby’s use of light humour creates a strong sense of spirit, and is truly inspiring.
The book has moments of absence, loneliness and frustration, though remarkably there is little sense of self-despair or anger, as well as a lack of a “woe is me” attitude, further creating a sense of respect felt by the reader towards Bauby himself. One thought seems to flow creatively into the next, and once you start to read the book it is hard to put it down – luckily, it is a very short story and can be completed without much distraction.
I really enjoyed the book, and I also enjoyed the 2007 film adaptation by Julien Schnabel which was equally both inspiring and uplifting. However, there are claims of inconsistencies in the film version, as Bauby’s lover Florence Ben Sadoun is airbrushed from the film in favour of Bauby’s former partner, Sylvie de la Rouchefoucauld, who is portrayed as somewhat of a Madonna figure, despite the fact that Florence is said to have remained faithfully by Bauby’s side until his death in 1999. The film is arranged so that Syvlie, named as Celine, is pitied and adored by audiences, whereas Florence, named as Ines, refuses to appear by Bauby’s side and features as the cruel, self centred mistress who cannot face her once-handsome husband in his unrecognisable state. Additionally, the film includes three children, whereas Bauby himself only had two.
The movie is arguably a lot darker than the book as it creates a stronger sense of isolation felt by its character of Bauby, who expresses a wish to die to one of the nurses (this is absent from the book). Presented as though through the eye of Bauby, the film depicts just how powerless and claustrophobic living with such a condition would be.
All in all, the book is definitely worth a read if you have a couple of spare hours and wish to indulge in some beautifully poetic and uplifting literature.