The Diving Bell and the Butterfly

The Diving Bell and the Butterfly (original French title: Le Scaphandre et le Papillon) is a memoir by journalist Jean-Dominique Bauby. It describes what his life is like after suffering a massive stroke that left him with locked-in syndrome, where the only bodily movement he could make was to bink his left eyelid. In terms of empathy, the reader is totally looking at the world from Bauby’s autobiographical perspective throughout the book – gaining a grasp of his physical suffering, his psychological torment, his memories, his anger, his fears. The first person narrative is superb at placing the reader inside his mind.

On 9 December 1995, Bauby, the editor-in-chief of French Elle magazine, suffered a stroke and lapsed into a coma. He awoke 20 days later, mentally aware of his surroundings, but physically paralyzed with what is known as locked-in syndrome , with the only exception of some movement in his head and eyes. His right eye had to be sewn up due to an irrigation problem. The entire book was written by Bauby blinking his left eyelid, which took ten months (four hours a day). Using partner assisted scanning, a transcriber repeatedly recited a French language frequency-ordered alphabet (E, S, A, R, I, N, T, U, L, etc.), until Bauby blinked to choose the next letter. The book took about 200,000 blinks to write and an average word took approximately two minutes. The book also chronicles everyday events for a person with locked-in syndrome. These events include playing at the beach with his family, getting a bath, and meeting visitors whilst in hospital at Berck-sur-Mer. On 9 March 1997, three days after the book was published, Bauby died of pneumonia.

What I find fascinating is that as a reader I felt a deep empathic connection with Bauby and his suffering – yet he doesn’t come across as having been a particularly pleasant person before his stroke. In fact, I sense he was pretty narcissistic. But this just adds to the interest and complexity of the book.

The book is great, but so is the film directed by Julian Schnabel, especially the opening scene where the viewer is looking out through Bauby’s one good eye as he comes to consciousness after his stroke. Amazing camera work to create a sense of extreme empathic immersion.



Loved this book

I haven't seen the film, but I found the book impossible to put down. I almost didn't want to gorge on it because I knew what an effort it had been to write! I agree that he doesn't come across as particularly pleasant in his former life, but he does come across as human and definitely not a saint. Few of us get to record what being in this situation would feel like; it's a sort of pilgrimage and definitely one to think about when you're having a tough day...

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Jean-Dominique Bauby
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