The Diving Bell and the Butterfly

H

ow had I never heard of or read about The Diving Bell and the Butterfly, a book that was published in France in 1997 –Le Scaphandre et le Papillon, really surprises me. Some time ago, Joared at Along the Way, mentioned it to me and a couple of weeks later, I received a mail asking me if I had read it or seen the movie. So I looked it up and found that I was probably the only French person not having at least heard of it.
The Diving Bell and the Butterfly is a memoir by French Elle magazine editor-in-chief, Jean-Dominique Bauby, who had a massive stroke and found himself with the locked-in syndrome, totally conscious of what was going on around him, but unable to communicate, except by blinking one of his eyelids.
And blinking one of his eyelids was the way he dictated The Diving Bell and the Butterfly.

Letter by letter.

When thinking of a possible stroke, most people immediately fear the idea of becoming a vegetable. But this is much worse as Bauby knows exactly what is happening to him.

While I have become something of a zombie father, Théophile and Célest are very much flesh and blood, energetic and noisy. I will never tire of seeing them walk alongside me, just walking, their confident expressions masking the unease weighing on their small shoulders. As he walks, Théophile dabs with a Kleenex at the thread of saliva escaping my closed lips. His movements are tentative, at once tender and fearful, as if he were dealing with an animal of unpredictable reactions. As soon as we slow down, Céleste cradles my head in her bare arms coers my forehead with noisy kisses and says over and over, “You’re my dad, you’re my dad,” as if in incantation.

And of course, you want to stop reading, you find it almost unbearable, and yet, this book is written with such gusto, such humour and self-derision that even though you know pretty much how it is going to end, you just read on.

Speech therapy is an art that deserves to be more widely know. You cannot imagine the acrobatics your tongue mechanically performs in order to produce all the sounds of a language. Just now I am struggling with the letter l , a pitiful admission for an editor in chief who cannot even pronounce the name of his own magazine. On good days, between coughing fits, I muster enough energy and wind to be able to puff one or two phonemes. On my birthday, Sandrine managed to get me to pronounce the whole alphabet more or less intelligibly. I could not have had a better present.

A movie, starring Mathieu Amalric, was made, by Arthur Schnalbel, a movie I missed when it was released in France, last June, but here’s the trailer

I’ll be looking for the DVD.
But do read the book. Incidentally, I read it in English and it’s an excellent translation by Jeremy Legatt.

1. A review of the movie at Ripple Effects

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