Losing all control, yet remaining strong

Photo courtesy of Google Images.

Imagine being fine one day, going along your normal routine, being able to drive and write and speak. And then the next time you wake up, after a coma, you can’t do any of that. This is some of what Jean-Dominique Bauby experienced and reflects about in “The Diving Bell and the Butterfly.”

The book is an amazing true story about a man who suffers a massive stroke and loses control of all of his bodily functions, feeling and means of communication, except for blinking one eye. He uses this sole link to the outside world to tell a translator what he wants written. It is with the blinking of his eye that he writes out his memoirs and what his new life with “locked-in syndrome” means.

Bauby often explains that with “locked-in syndrome” he feels as if he is living in his own world, his own body, as his mind and thoughts are still intact, except he can only articulate his thoughts to the outside world with the blinking of his eye.

I’m assuming Bauby chose the title for completely juxtaposing ideas. He explained the idea of a butterfly as his mind being able to be free, his mind floating around, being light, his only freedom being his mind and thoughts. The diving bell was never explained, but I know that it refers to a historic type of diving equipment. It is a cable-suspended airtight chamber, open at the bottom, according to Wikipedia. It is a means of transporting a few divers. The shape kept and pressure of the water kept the air trapped inside the bell, according to Wikipedia. So knowing this, the diving bell Bauby refers to explains how he felt trapped in his body, how there was a sort of pressure that always pushed down on him and kept him stable and immobile.  The analysis of this metaphor adds a layer of meaning to the book.

Bauby describes how he set out to write this book.

In my head I churn over every sentence ten times, delete a word, add an adjective, and learn my text by heart, paragraph by paragraph.”

It seems an exhausting and very trying way to write, but Bauby never failed to give details, descriptions, emotions, feelings, actions of others, explanations of his family and friends and doctors and so on. His resolve and spirit is tested time and again, but Bauby’s spirit remains strong in spite of such a struggle.

This is a truly inspirational book and memoir. It is difficult to read at times and saddening. At times I felt so sorry for Bauby, a man who lost the ability to live in the outside world, who lost the ability to have any semblance of a normal life. But he remained strong, whether it was by reading the many letters he received with the help of a doctor who held up the letters to his face, or by remembering exactly what he wanted to write, word by word, or by using his imagination to conjure up dreams and fantasies of traveling and times he could spend with the people he loved, even if he couldn’t in reality.

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