TITLE: The Diving Bell and the Butterfly
AUTHOR: Jean-Dominique Bauby (Translated from the French by Jeremy Leggett)
PUBLISHER: Harper Perennial
RELEASE DATE: 1997
GENRE: Nonfiction, Memoir
PAGE COUNT: 139
Editor-in-chief of French Elle magazine, Jean-Dominique Bauby’s life changed forever when he was paralysed by Locked-In Syndrome. Using only his left eyelid to communicate, Bauby embarked on a groundbreaking journey to deliver his story to the world.
The Diving Bell and the Butterfly is a labour of love – as his assistant read out the alphabet, Bauby individually selected every letter by blinking. Once you understand how much effort went into writing this book, you can’t look at it the same way again. Each word deserves to be weighed on your tongue as you read.
It is also a memoir of loss, isolation, and appreciation for life’s beauty and sense of humour. Despite its underlying pain, Bauby’s story remains light and funny. He weaves together accounts of daily life at the hospital and memories of time spent with friends and family to paint a full picture of his life. The non-linear narrative structure allows his story to unfold naturally in perfect balance with the necessary scientific context. All of Bauby’s anecdotes prove that although Locked-In Syndrome stole his future, it cannot take away his identity – he is committed to living the fullest life possible.
Once I was a master at recycling leftovers. Now I cultivate the art of simmering memories – page 44
Bauby’s isolation from his family hit me hard. Imagining myself in his shoes, I was heartbroken reading about his separation from his children, Théophile and Céleste, unable to tell them how much he loves them or repair the dad-shaped hole he left in their lives.
‘How do you feel, buddy?’ asks Théophile. His buddy’s throat is tight, his hands are sunburnt, his coccyx hurts from sitting on it too long, but he has had a wonderful day. And what about you kids, what will you carry back from this field-trip into my endless solitude? – page 83
Bauby’s story may be sad, but my lasting impression is uplifting. This emotional rollercoaster will touch you and urge you not to take life for granted. If nothing else, The Diving Bell and the Butterfly highlights the importance of remembering through the passing down of stories.