April 23 1952 – March 9, 1997
Disability: Locked-in Syndrome
Jean-Do was a well-known French journalist and author and editor of the French fashion magazine ELLE. In 1995 he suffered a massive heart attack causing him to go into a coma for 20 days. After coming out of the coma he found himself with a very rare neurological disorder called Locked-in syndrome, in which the mental state is perfectly normal and stable but the body is paralyzed from Head to Toe. In the case of Jean-Do he was able to move only his left eyelid. 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. Bauby had to compose and edit the book entirely in his head, and convey it one letter at a time. To make dictation more efficient, Bauby’s interlocutor, Claude Mendibil, read from a special alphabet which consisted of the letters ordered in accordance with their frequency in the French language. The book was published in France on 7 March 1997. Bauby died just two days after the publication of his book.
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