On 8 December 1995 at the age of 43, Jean-Dominique Bauby (author and editor of the French fashion magazine ELLE), suffered a massive stroke and lapsed into a coma. When he woke up twenty days later, he found he was entirely speechless; he could only blink his left eyelid. Called locked-in syndrome, this is a condition wherein the mental faculties remain intact but most of the body is paralyzed. In Bauby’s case his mouth, arms, and legs were paralyzed, and he lost 27 kilograms (60 lb) in the first 20 weeks after his stroke.
Despite his condition, he wrote the book The Diving Bell and the Butterfly by blinking when the correct letter was reached by a person slowly reciting the alphabet over and over again using a system called partner-assisted scanning. Bauby composed and edited the book entirely in his head, and dictated it one letter at a time. To make dictation more efficient, Bauby’s interlocutor, Claude Mendibil, repeatedly recited a French language frequency-ordered alphabet (E, S, A, R, I, N, T, U, L, etc.), until Bauby blinked to choose the next letter.The book took about 200,000 blinks to write and an average word took approximately two minutes. The book also chronicles everyday events for a person with locked-in syndrome.
The French edition of the book was published in France on 7 March 1997. Bauby died suddenly from pneumonia ten days after the publication of his book, and is buried in a family grave at the Père-Lachaise cemetery in Paris, France.
The Diving Bell and the Butterfly (Le Scaphandre et le Papillon) describes what his life is like after suffering a massive stroke that left him with locked-in syndrome. It also details what his life was like before the stroke. The evocative title comes from Bauby’s notion that while his body was submerged and weighted down — impossible to move — his imagination and memory were still free and as light as a butterfly’s wings: “My cocoon becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas’s court.”