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The Diving Bell & The Butterfly by Jean-Dominique Bauby

— feeling too sad
The Diving Bell and the Butterfly: A Memoir of Life in Death by Jean-Dominique Bauby 1st (first) Edition [Hardcover(1997/5/13)] - Jean-Dominique Bauby

In  1995, Jean-Dominique Bauby suffered a stroke to the brainstem. This left him with locked-in syndrome. Basically, all his mental faculties were functioning but his body was not. He had a functioning left eye and, with physical therapy, eventually could shake his head a bit and move his tongue enough to swallow food and utter a few sounds.

Using eye blinks, Bauby could indicate one letter at a time to a person holding up a placard of the alphabet (modified to have most common used letters first). In this manner, he dictated this book, which is a collection of short chapters about his life before and after the stroke. I can only imagine the patience it took for him  to compose this book and then eyeblink it out to a transcriber. On the other hand, it was probably a little bit of a relief to have such a goal.

This book is a fascinating look into the life of Bauby. Much of it is serious and poignant, though there are moments of amusement and tenderness. It was very interesting to see what he found of importance when so much had been stripped from him. As the reader, you don’t learn the circumstances of his life in which the stroke struck until the very end. Of course, you can always cheat and go read the wikipedia entry, but I think this book has much more impact.

This is one of those books that is pretty short and yet gives the reader much to think on. While I was reading it, I kept wanting to transport Bauby forward in time to a period where the technology could immerse his mind in a virtual world, if not repair the brainstem. If the entertainment industry doesn’t drive us to total immersive virtual worlds, then locked-in syndrome should!