Just before getting captured by The Barn Dance (I did that book in one evening, getting back up at midnight to finish the 2nd half of it by 3am and finally back to sleep – now that’s the mark of a really engaging book, no?), I had ordered something I found intriguing from long ago, but I couldn’t recall where that original interest came from that past.  It was a true story of a man who wrote this book with the blink of his eye!  So seeing it again recently, I did my usual 1-click ordering from Amazon.com and ordered the used paperback book ($0.01 + s/h),  The Diving Bell and the Butterfly, and on a whim, added the DVD of the movie of the same title to that order (equally cheap in used).

The Diving Bell and the Butterfly

Book: The Diving Bell and the Butterfly

I really didn’t know what this was all about, but sometimes that’s the fun of it – a serendipity decision that leads to interesting education and life experience. When it arrived, I found a quick read of this short book, written by a Frenchman who suffered a stroke and came out of it finding himself locked in his body without movement or speech – a rare condition known as “locked in syndrome” – in which it turns out he can see out of one eye and hear in one ear (however much too loudly even with sounds from a distance!).  I was fascinated by the fact that this was true life and that he was able to record what his life was like in writing the book.  Seems he could blink that one eye, and with the patience of the nursing staff and eventually an assistant who took his dictation as they read off an alphabet and he indicated the next letter with that blink of his eye – just imagine that, not only communicating with the world that way, but writing a whole book one letter/blink at a time!  In fact, despite that fascination, the book left me a little disappointed, but I wanted to see how they captured it in the movie version.

“Wow!” – the movie blew me away and I strongly recommend it to your viewing and your thoughts after watching life from within that “diving bell” limits of his frozen body with a fully active mind.  He connected with a concept I myself have given some thought to over time, a concept he relates to in his “butterfly” analogy.  My thought had been that the ultimate freedom was if you were frozen in your own body, that you would still be free to go virtually anywhere using your imagination, no longer limited as we all are by our physical constraints of time and place.  You would almost be living in another dimension, but after reading this story I realized you would still be limited by your experience and your memories, a point that is made clear in the unusual situation describe in that other book, The Barn Dance.  This patient, locked in his body as described above, finds the freedom to do just that, living in a fantasy world when he wants to , one without limits, and that makes for some very interesting (and erotic at times) scenes in the movie version.

Something I hadn’t noticed as being very unique in the viewing, but brought out in the DVD’s Special Features (which I highly recommend to your viewing), is that the movie takes the audience inside the patient’s body, mostly viewing the world he finds himself in from that one eye that is still working and except for sound, his sole connection to the outside world.  It really is a very thought provoking movie to watch, and from my perspective (the special features bring out some controversy over the movie’s taking liberty from his real story) seems very true to the book.  From within we are able to hear his “speaking” (his thoughts) even though those around him cannot since he can’t speak in the making sounds sense.  I found myself coming away from this reading/watching combo experience with some very interesting insights into our own life and how we communicate with the world around us.

It also left me humbled in that I have been so slow in writing this new book of mine (really, “ours”) with weeks and months going by without finding time to add even a sentence to it, when in contrast I see this author writing his book one letter (eye blink) at a time, and only when someone can sit and recite the alphabet for him to pick out that one letter with that blink of his eye.  It is almost funny to see his visitors who are introduced to this limited way of communicating with him, having to read that alphabet (arranged in order of a letter’s frequency of use, not your normal “A, B, C…” order we all know so well) from a card and thus not being able to look up at his eye to catch that blink at the same time – how frustrating both to him and the visitor as they catch themselves missing his clue.

Seriously, if you are up to a really interesting read and viewing, try The Diving Bell and the Butterfly.  It will change the way you look at the world around you, I promise.  And when you do, please come back and add your own comments to this blog entry.

PS: The movie is in French with English subtitles (done that way to add to the reality of the story since the patient was French, but it was done by an English production company) and I found that those subtitles became second nature to the viewing shortly after getting into the story, so not a distraction for me.

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