The Diving-Bell and the Butterfly by Jean-Dominique Bauby

I was aware of this book from lists where people had proposed books that must be read and I have to say that this is most assuredly true of this one – it is a book that must be read.

Jean-Dominique Bauby is the author and he is paralysed as the result of a massive stroke. He is only in his forties with two young children; a man with a successful career, vibrant and funny; a world traveller at the forefront of magazine publishing and advertising. This book is written by him in his paralysed state – he is unable to move, except his head slightly and he can blink one of his eyes. It is with this eye that he communicates with others. He “dictates” this book using an alphabet system which enables him to signal letter by letter his thoughts and ideas to a lady who then records them. That is how the book came to light. What an arduous process it must have been.

I can’t say that I loved this book but it touched me very deeply while I was reading it and I was rapt in my reading of it. It is difficult to fathom how it must feel to have a lived a life of dynamism in an industry where words matter and find that that is no longer open to you; that you have been significantly reduced to an immobile object, silent and contained, with no real means to contribute to the lives of those that you love. Bauby talks about one-sided conversations that he has on the phone, hearing what is being said to him but unable to reciprocate with witticisms and commentary. I often asked myself whilst reading this book, as one who loves to communicate, to make people laugh and engage in stimulating debate, “How would I feel if this was me?” and the resulting empathetic feeling was one of discomfort and entrapment.

But this is not a book of self-pity. There is acceptance here as well as hope and Bauby’s voice, despite the time it must have taken to compose this book, is as clear and poetic and humorous as I imagine it must have been when he had more immediate control over it. The shortness of the chapters belies the difficulty in their composition but the book has great depth and I would encourage you to read it.