Sunday 28 August 2011

19. Jean-Dominique Bauby - The Diving Bell and the Butterfly


A short story this week by Jean-Dominique Bauby. He's the famous French Vogue editor-in-chief who suffered from the Locked-In syndrome when he was around 40 years old. He had a stroke and he fell into a coma. When he woke up all his brain function was intact but physically he couldn't do anything any more. He could only move his left eyelid.

In The Diving Bell and the Butterfly Bauby describes what life is like when you can still think and hear and see, but you can't do any thing yourself; he can't even breath or swallow without machines. He describes the frustration of having to be around his kids without being able to touch them or talk to them, while he has so much to say to them. 

The book isn't a literary masterpiece. It is however an emotional masterpiece. He wrote this book together with Claude, a specialised nurse. She pointed at letters that were sorted by popularity and he blinked when he wanted to use that letter. The book isn't long but if you can even imagine how much effort it much have cost him, it is quite impressive. You would expect a robotic story but it isn't at all, the way Stephen Hawking speak for example. It is a beautifully worded summary of what it is like to live a year locked-in with only your thoughts.

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