Jean-Dominique Bauby: Le Scaphandre et le papillon / The Diving Bell and the Butterfly (1997)

Le Scaphandre et le papillon (translated into English as The Diving Bell and the Butterfly) is a remarkable book by any standard. It was written by a man who had a massive stroke that left him in a coma for weeks and when he awoke found he was a victim of 'locked-in syndrome', being fully conscious but completely paralysed with the exception of his left eyelid. In this autobiographical work, the former journalist expresses his gratitude to his 'guardian angel' Sandrine, the speech therapist who devised an alphabet beginning with the most common letter and ending with the least common, by means of which he could communicate if a third party constantly ran through the alphabet until a blink signified the appropriate letter intended; this is how dictation of the book was achieved, and how Bauby managed to transcend the 'diving suit', or 'space suit', in which he felt trapped in on himself.

Le Scaphandre in part relates the 44-year-old's days at the hospital at Berck-sur-Mer on the Côte d'Opale, Pas-de-Calais (62). It is a succession of visits: doctors, psychologists, nurses, a kinesthesiologist, his children, etc. Most of all it's a series of dreams, fantasies, and memories of his past life told not with self-pity but with great perception and, surprisingly, not a little comic skill.

Bauby died of pneumonia on 9 March 1997, two days after the publication of this book. Due to his efforts, ALIS, the Association du Locked-In Syndrome, was formed the same month.

My post on Jean-Dominique Bauby's grave:

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Jean-Dominique Bauby: Cimetière du Père-Lachaise