In 1995, Jean-Dominique Bauby, the 42-year-old editor of the French edition of Elle, sustained a brainstem stroke. On recovering from a 20-day coma, he was diagnosed with locked-in syndrome, conscious but aphasic and incapable of purposeful voluntary movements apart from the use of his left eye. An ingenious communication scheme was devised in which a rearranged alphabet of letters was read to Bauby, who would blink each time the letter he had in mind was said, eventually spelling out words. Over 2 months, Bauby “dictated” an autobiography, The Diving Bell and the Butterfly. The scale of this accomplishment cannot be understated. Each morning, without the benefit of a pen and paper—his tools as an editor—Bauby had to compose, memorize, and edit tracts of writing that he would then “dictate” later that day. The book—published 2 days after his death in 1997—became a sensation, selling more than 1.2 million copies. It has now been adapted into an award-winning film. Back in the limelight 11 years after its initial publication, are the book and the current movie the triumphs they have been heralded as?
Le Scaphandre et le Papillon (The Diving Bell and the Butterfly). JAMA. 2008;300(24):2922-2927. doi:10.1001/jama.2008.873