Have you heard of locked-in-syndrom?

I don’t think I actually had until I read this book.  “Locked-In syndrome is a condition in which a patient is aware and awake, but cannot move or communicate due to complete paralysis of nearly all voluntary muscles in the body”

Okay, first and foremost, the amazing thing about this book:

This guy wrote the book by using one eyelid – flicking it for letter recognition so people can understand him.   An amazing feat. I mean I can’t even imagine… an even more complicated type of braille to learn.

You could tell the author was a writer, as the words flowed very well together, and it was interesting to see his side of the story about hospital workers and how they treat him, and his conclusion after several months on the month.  That being said…

As much as I wanted to appreciate this work more, I found it incredibly sad that a man reduced to nothing but a shell and left to blink wrote his memories that were hardly worth writing down.  I wouldn’t call it memoirs… the recollection of his last few days, with some bizarre dreams thrown in.   And I note, that he was a famed editor, but the book doesn’t talk much about that, nor does it discuss in length much about his family, or any passion in general.  I mean no disrespect for the man, but is this the legacy he’s left for the world? For his children?

When I am dead and gone, the last thing I want  is for someone to read about me excessively complaining and hope that they will find encouragement and strength in my last words…  If I was writing my last few months of life on earth, I would be making sure my family knew how much they meant to me, and that my God was in charge of it even if I didn’t understand… but if Jean was that sort of man, this book didn’t portray it. I’m actually quite sad to even write that because I feel for his children, if that’s what they have left of their fathers work… I pray there was more than what he wrote down there in their relationships and such.

He barely mentions what actually happened to him  -the last chapter only.  And I am left wondering, how his son dealt with it?  Was he actually married and than divorced? And what happened to his current girlfriend? Did she even attempt to see him?

While I am left in awe of his ability to communicate, I am saddened such a dreary outlook on life…I am aware that I don’t want to waste my life on the unimportant things…

Would I recommend this book?  I think you’d find this interesting if  you are a fan of biographies, you may enjoy this.  If you are amazed by the concept of a person communicating with only the use of their eye, you may enjoy this.  It is a short, quick read, and a modern day miracle of communication.

*definition taken from http://en.wikipedia.org/wiki/Locked-In_syndrome

3 Responses to “The Diving-Bell and the Butterfly”