The Diving-Bell and the Butterfly Book

On December 8, 1995, Jean-Dominique Bauby's life was forever altered when a part of his body he'd never heard of--his brain stem--was rendered inactive. The Diving Bell and the Butterfly, his exquisitely painful memoir, is neither a triumphant account of recovery nor a journey into the abyss of self-pity. Instead, it is a tender testament to the power of language and love. At 43, Bauby was defined by success, wit and charisma. But in the course of a few bewildering minutes, the editor-in-chief of French Elle became a victim of the rare locked-in syndrome. The only way he could express his frustration, however, was by blinking his left eye. The rest of his body could no longer respond. Bauby was determined to escape the paralysis of his diving bell and free the butterflies of his imagination. And with the help of ESA, "a hit parade in which each letter is placed according to the frequency of its use in the French language," Bauby did so. Visitors, and eventually his editor, would read each letter aloud and he would blink at the right one. Slowly--painstakingly-- words, sentences, paragraphs and even this graceful book emerged.

Bauby relays the horrors and small graces of his struggle, which range from awaking one day to discover his right eye being sewn shut to realising the significance of Father's Day, a holiday previously absent from his family's "emotional calendar": "Today we spent the whole of the symbolic day together, affirming that even a rough sketch, a shadow, a tiny fragment of a dad is still a dad." The author makes it clear that being locked in doesn't kick open the doors of perception, but The Diving Bell and the Butterfly is nonetheless a celebration of life. Jean Dominique-Bauby died of a heart attack on March 9, 1997, two days after his book was published in France.

'Locked-in syndrome: paralysed from head to toe the patient his mind intact is imprisoned inside his own body unable to speak or move. In my case blinking my left eyelid is my only means of communication.' In December 1995 Jean-Dominique Bauby editor-in-chief of French 'Elle' and the father of two young children suffered a massive stroke and found himself paralysed and speechless but entirely conscious trapped by what doctors call 'locked-in syndrome'. Using his only functioning muscle - his left eyelid - he began dictating this remarkable story painstakingly spelling it out letter by letter. His book offers a haunting harrowing look inside the cruel prison of locked-in syndrome but it is also a triumph of the human spirit. The acclaimed 2007 film adaptation directed by Julian Schnabel won Best Director at Cannes and was nominated for the Palme d'Or.

The Diving-bell and the Butterfly : Paperback : HarperCollins Publishers : 9780007139842 : 0007139845 : 07 May 2002 : The diary of Jean-Dominique Bauby who, with his left eyelid (the only surviving muscle after a massive stroke) dictated a remarkable book about his experiences locked inside his body. A masterpiece and a bestseller in France, it is now a major motion picture directed by Julian Schnabel.