The Diving-Bell and the Butterfly (4th Estate Matchbook Classics)

** spoiler alert ** Sometime in 1995, Jean-Dominique Baube suffered a massive stroke causing the rare "locked in" syndrome where he was aware of his surroundings and condition, but was paralyzed and unable to move or communicate effectively. After his stroke, he went into a coma and several weeks later woke to find that he could move his neck (minimally) and had full control of his left eye. While this story is profoundly sad, it's clear that Baube has made the most of the situation, even dictating this book letter by letter to his nurse who helped him transcribe his left eye blinks into complete words and sentences. At the time of the stroke, Baube was the forty-something editor of the famous fashion magazine "Elle" in Paris, as well as a father to two children who come and go in this book. He gives us a first-hand account of every sensation and thought he was feeling as people come and go, as well as his experiences with the numerous therapy sessions he's had. To his credit, despite the situation and his deep insight into how this has affected him and his family terribly, I found this to be really funny at times. His tongue-in-cheek witty remarks made me laugh out loud at the sheer ridiculousness he grapples with as he tries to make the most of his situation. The book is composed of 28 chapters, though it might be more accurate to say these are 28 short stories, each a memory or in-depth thought process, taking us through the life of Baube, his condition, and back again. This was a short read, but incredibly moving as it is profound yet humorous at the same time. Though this was initially written in French, I don't feel as though anything was really "lost in translation". I'd recommend this book to anyone also interested in the complexities of the brain, who might be curious about the first-hand telling of locked-in syndrome. Other books if you liked this one are "My Stroke of Insight" by Dr. Jill Bolte Taylor and "Brain on Fire: My Month of Madness" by Susannah Cahalan.

✩✩✩✩ "I am fading away. Slowly but surely. Like the sailor who watches the home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more if it is reduced to the ashes of memory."

“The Diving Bell and the Butterfly” é comumente apresentado como romance, mas é de natureza distinta, é mais do tipo documental e biográfico, diria mesmo testamentário. O seu autor, Jean-Dominique Bauby, diretor da revista Elle, escreveu-o com 44 anos, depois de sofrer um acidente vascular cerebral que o deixou totalmente paralisado, sendo apenas capaz de comunicar por via do olho esquerdo e sua pálpebra. Ou seja, Bauby encontrava-se na condição medicamente designada, de “locked-in”, em que a consciência está intacta, mas encerrada num corpo que já não lhe responde. A escrita do livro foi realizada através da exposição a uma sequência de letras que o autor ia escolhendo através do piscar do olho esquerdo. O livro é dificilmente um todo, dada o estado em que se encontrava o autor que dificultou o trabalho de estrutura, composição e revisão. Ainda assim, a organização que é feita numa base de vários capítulos soltos e desconexos, vai-se alicerçando no leitor, permitindo formar uma imagem mais abrangente da pessoa, e da sua condição. De uma forma geral o livro contribui para nos passar a imagem de alguém, que apesar de preso dentro de si, continuava a viajar, através da imaginação e do sonho, fazendo-se valer de um otimismo e um humor impressionantes. Sendo que o cerne está na metáfora, presente desde logo no próprio título do livro, do corpo como escafandro, que nada mais faz do que puxar para o fundo, e a borboleta, inquieta e que deseja continuar a voar, a sua consciência. Bauby descreve algumas das passagens dos seus dias no hospital, sonhos e fantasias, assim como problemas e preocupações, mas eu gostava que ele tivesse ido um pouco mais longe, nomeadamente nas descrições do seu sentir. As descrições são demasiado externas, centradas no mundo exterior, e ficamos a saber muito pouco sobre o modo como ele sentia verdadeiramente todo aquele estado. Uma questão que me interessava muito perceber, era até que ponto existiam alterações emocionais, uma vez que o corpo já não respondia à mente. Até que ponto é que tudo o que ele nos diz é emanado a partir de uma base de dados, os registos de memórias, ou ele continuava verdadeiramente a sentir? Apesar de tudo isto, o livro é um documento único, é uma porta para uma condição que hoje sabemos ser mais comum do que na altura, e que nos obriga a refletir sobre muito daquilo que somos, enquanto seres, corpos e consciência.

The story behind this book is more interesting than the book itself, but crikey, what an interesting look at life.

I should have been able to read this book in just a few hours. Not only is it a very slim book – but the chapters are nice and short and there are even a few blank – or near blank pages. But I could only read Jean-Do’s words for so long before I would have to put the book down and blink both my eyes or straighten my sock or stretch my neck or scratch my nose. The Diving Bell and the Butterfly is the memoir of the former editor of Elle magazine after he has suffered a massive stroke that has left him in a condition known as Locked-in syndrome. The rumors are that he is a complete vegetable – but a speech therapist helps him learn a way to communicate – signaling with his one good eye when she has read a letter that forms a word he wishes to spell to complete a sentence that expresses the incredibly complex thoughts and memories he wants to convey. He composes a letter to squelch the rumors that he has completely checked out of this world. Then announces – or rather blinks – that he wants to write his memoir. He is merely trapped in an iron diving bell, forced to survive with his vivid memory and imagination to escape the torture of not being able to communicate with words or gestures or facial expressions. It is almost like being able to get a glimpse of his soul, ready to discard his useless earthly body and mingle with the hereafter, but is trapped by this body-shell which is unwilling to completely let go.

In 1995, Jean-Dominique Bauby, an editor-in-chief of the French fashion magazine Elle, suffered a massive stroke that sent him into a deep coma. He emerged 20 days later and was diagnosed with a rare disease called "Locked-in Syndrome" in which the patient is awake and conscious but completely paralyzed and speechless. With the help of a transcriber, he was able to dictate this memoir one letter at a time by blinking his left eyelid. Bauby passed away in March 1997 two days after the book was published in France. I always have a hard time reviewing non-fiction especially memoirs. This is a short (with 144 pages) read consists of pieces of Bauby's memories, thoughts, dreams, and imaginations. It can be emotional at times especially when he's talking about his kids and family or the things he'd still want to do in his life. This book, for me, is more like his journal entries and letters to his family and people who know him. This was a unique and very uplifting read despite of the author's condition. It definitely gave me new perspectives on life. I'll definitely watch the movie adaptation of this book.

I expected something more transcendent. It was fine -- lyrical and pleasantly reflective -- but it didn't give me chills, and I sort of expected chills based on how it was described to me. I guess it's not the author's fault I'm a heartless asshole.

This book was incredibly beautiful! I adored the writing style and am impressed by the way the author had to edit this entire book in his head, because of his paralysis. Reading this book was an incredible experience and it really made me think about life. It gives us a message to live life to it’s fullest as you don’t have any control on what might happen the next day. Hearing about Bauby’s experience is heart breaking and I wouldn’t wish anything like this to anyone. Him figuring out how to spend his time and thinking about his life before was beautiful. I highly recommend this one!

A quick read, this short memoir makes a lasting impact by reminding all of us to be grateful for the many things we tend to totally take for granted...speaking, shifting positions in bed, interacting and connecting with those around us, playing with our kids. Talk about perspective. If you're in need of some (as I was), this 132 page book (with giant margins) is packed with it. I never heard of Bauby before I picked up the book...I will never forget him now.