Monthly Archives: February 2014

What It’s Like to Be Locked-In

Jean-Dominique-Bauby

I need to feel strongly, to love and to admire, just as desperately as I need to breathe. A letter from a friend, a Balthus painting on a postcard, a page of Saint-Simon, give meaning to the passing hours. But to keep my mind sharp, to avoid descending into resigned indifference, I maintain a level of resentment and anger, neither too much nor too little, just as a pressure cooker has a safety valve to keep it from exploding.

-Jean-Dominique Bauby, The Diving Bell and the Butterfly, p. 52

As I mentioned in this post my latest research project involves the measurement of consciousness in patients with brain damage, including the rare case of Locked-in Syndrome. I recently finished reading Bauby’s memoir about being in the locked-in state, The Diving Bell and the Butterfly where Bauby takes you inside what he called his “diving bell”, submerged in the depths of his useless body peering out at the world through the tiny window of his left eye. The memoir is nothing less than riveting, a powerful demonstration of the indefatigable human will.

Bauby dictated the entire book to an assistant with only the use of his left eye. The assistant would read off letters in the alphabet in a pre-established series arranged by frequency in the French language and Bauby would blink when the assistant spoke the correct letter; then they would start from the beginning for the next letter, and so on. You can imagine how laborious this would be. Yet the book reads beautifully, revealing an active, curious, intelligent mind trapped inside a bodily shell.

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