“I am fading away. Slowly but surely” – A Poignant Memoir of Locked-in Syndrome

In 1995, French journalist and editor, Jean-Dominique Bauby, suffered a severe stroke when driving his son to the theatre. He woke up in hospital twenty days later. ‘The Diving Bell and the Butterfly’ recounts his experience with locked-in syndrome, a rare condition of the nervous system where everything but the muscles that control the eyes is paralysed.

Once awake in the hospital, Bauby was only able to blink his left eye. Most of his mouth, arms and legs were paralysed - but his mental capabilities remained. He lost an astounding twenty-kilograms in the first twenty weeks after his stroke. Before his accident, Bauby had plans to write a book and had already signed a contract for one. So, his speech therapist, whom he described as his ‘guardian angel’, arranged an alphabet so that Bauby could blink when it was recited to him. A 130-page manuscript was recorded over the course of two months, with the two of them working for up to three hours a day, letter by letter! The resulting book, ‘The Diving Bell and the Butterfly’, was published on Friday, 7 March, 1997 and went on to become a number-one bestseller across Europe. Bauby unexpectedly died of pneumonia at the age of forty-four, just two days after publishing his book.

When I first heard about this book, I figured that the title represented the duality of Bauby’s condition. Having now read the book, its significance is astoundingly clear:

The diving bell represents Jean-Dominique’s body and its restrictiveness. A diving bell is a piece of equipment used underwater to allow divers to remain submerged. Bauby is heavy with grief and utterly saddened by his inability to interact with the world. Bauby reflects on the possibility of exploring the cosmos and finding the keys to release his diving bell and buy his freedom back.

The liberated and open mind of Bauby is where the butterfly comes in. Despite the obstacles that come with having a paralyzed body, Bauby embraces his imagination and cognitive abilities, and the essence of his consciousness flutters freely. Unlike his body, Bauby’s mind can move willingly, fly to imaginary places, and explore ideas and dreams.

In the midst of reading this fascinating memoir, many quotes and witty comments grabbed my attention. One really summed up Bauby’s condition and touched me profoundly.

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

Here, Bauby truly encapsulates the gradual diminishment of his physical and worldly presence and conveys a sense of loss and the inevitability of this fading process. Like the sailor watching the tide, Bauby’s condition is irreversible and he is helpless. Despite this, Bauby’s life ‘still burns within’ him, symbolising the enduring flame of his memories and the intensity he feels towards his own identity and who he has become.

‘The Diving Bell and the Butterfly’ explores the universal themes of resilience, inevitability and the power of a great mind, no matter the physical restrictions. Although Jean-Dominique Bauby’s life was cut short his memoir lives on, wholly capturing the fragility of life and its challenges.