Author: Jean-Dominique Bauby
Translator: Jeremy Leggatt
Publisher: Fourth Estate Ltd
Publication date: 1997
Sinopsis: ‘Locked-in syndrome: paralysed from head to toe, the patient, his mind intact, is imprisoned inside his own body, unable to speak or move. In my case, blinking my left eyelid is my only means of communication.’
In December 1995, Jean-Dominique Bauby, editor-in-chief of French ‘Elle’ and the father of two young children, suffered a massive stroke and found himself paralysed and speechless, but entirely conscious, trapped by what doctors call ‘locked-in syndrome’. Using his only functioning muscle – his left eyelid – he began dictating this remarkable story, painstakingly spelling it out letter by letter.
"The Diving-Bell and the Butterfly" is one of those books you can't help but recommend to everyone around you. A bookworm friend of mine (David from “Ramblings on my bookshelves”) encouraged me to discover it, and now I’m the one writing this review in order to convince you all to read it without fail.
I'm pretty certain that Jean-Dominique Bauby’s work has earned a place among my favourite books. It's around 100 pages long, but believe me as I tell you that you'll need time to digest each short chapter, which Bauby dictated with his left eye. Due to a stroke, the journalist and editor-in-chief of "Elle" magazine was completely paralyzed at the age of 43 (victim of the so-called "locked-in syndrome") and could only communicate through blinking.
p.27 «E S A R I N T U L O M D P C F B V H G J Q Z Y X K W
The jumbled appearance of my chorus line stems not from chance, but from cunning calculation. More than an alphabet, it is a hit-parade in which each letter is placed according to the frequency of its use in the French language. That is why E dances proudly out front, while W labours to hold on to last place. B resents being pushed back next to V, and haughty J which begins so many sentences in French - is amazed to find itself so near the rear of the pack. Roly-poly G is annoyed to have to trade places with H, while T and U the tender components of "tu" rejoice that they have not been separated. All this reshuffling has a purpose: to make it easier for those who wish to communicate with me.
It is a simple enough system. You read off the alphabet (ESA version not ABC) until with a blink of my eye, I stop you at the letter to be noted.»
Claude Mendibil was the one in charge of transcribing Bauby's story, and -as she told The Guardian in 2008- it was a life-changing experience. «When I first arrived and the speech therapist showed me the alphabet, it was extremely difficult. I would be looking at the letter but forget to look at his eye, so I couldn't tell if he'd blinked or not. He'd have to keep his eye open and I was so slow that it got to the point where he'd have to blink and it would be the wrong letter. He could tell I was struggling because the first thing he dictated to me was "Don't be scared”» .
It took Bauby 200,000 blinks to complete his book, a brilliant work full of reflections, flaishbacks, and anecdotes from the moment he awoke from his coma and was aware of his new reality. The pages are full of life, determination, tragedy, frustration, sarcasm, irony... I couldn't help but wonder as I read "How can you laugh at yourself and make me laugh with you?" What language proficiency, wonderful metaphors and poignant social criticism...
p.89 «The city, that monster with a hundred mouths and a thousand ears which knows nothing but says everything, had written me off. In the Cafe de Flore, one of the base camps of Parisian snobbery which sends up rumours like flights of carrier pigeons, some close friends of mine overheard a conversation at the next table.
The gossipers were as greedy as vultures who have just discovered a disembowelled antelope. "Did you know that Bauby is now a total vegetable?" said one. "Yes I heard. A complete vegetable." came the reply.
The word 'vegetable' must have tasted sweet on the know-it-all's tongue, for it came up several times between mouthfuls of Welsh rarebit. The tone of voice left no doubt that henceforth I belonged on a vegetable stall and not to the human race. France was at peace. One couldn't shoot the bearers of bad news. Instead I would have to rely on myself if I wanted to provethat my IQ was still higher than a turnip's.»
Jean-Dominique Bauby shows us that happiness is in the little things and that we aren't aware of what we have. The mere fact of being able to hug a loved one, or get out of bed every morning is a gift we don’t appreciate. How much wisdom, hope, and love lie in his words!
In March 1997, "The Diving-Bell and the Butterfly" was released and the 25,000 copies of the first edition were sold out in 24 hours. Two days later, Bauby died of pneumonia. «I think perhaps he felt he'd completed what he had set out to do.» said Claude Mendibil. «He could let go.»
Trailer of Julian Schnabel's film based on Bauby's memoir. It won awards at the Cannes Film Festival, the Golden Globes, the BAFTAs, and the César Awards, and received four Oscar nominations.