One minute, you have just finished another stressful day at work. You’ve got the Beatles song A Day in the Life stuck in your head. You are looking forward to seeing your son for the weekend. The next minute, you suffer a massive stroke that severs your brainstem, sending you into a coma. When you awaken, you are completely paralysed, able only to move your head and blink one eyelid. You cannot talk, eat, swallow, perform any basic human functions at all. Your relationships with family and friends have been strangely changed, if not wholly destroyed, overnight. You have “Locked-In Syndrome”, so called because it is only your body that is paralysed: you remain fully conscious and alert, cognitively unchanged.
This is what happened to Jean-Dominique Bauby one day in 1995. Soon after he awakened from his coma, his speech therapist devised an alphabet with which he could communicate by blinking his left eyelid a certain number of times for a certain letter. Dictating in this way, Bauby wrote his short memoir, The Diving-Bell and the Butterfly, the diving-bell a simile for his oppressive weight of a paralysed body, and the butterfly representative of his fully intact and intelligent mind.
In the book, Bauby describes the neverendingness of each slow day, the frustration of not being able to communicate quickly and reliably, the inability to swallow the saliva that collects in his mouth, to ruffle his children’s hair and smile at his wife, to thank the nurses and doctors who work tirelessly to decipher his rapidly blinked SOS signals, to club around the head the jobsworths who pretend not to notice them. He recounts with removed fondness memories of delicious food, outings with his family, his favourite clothes and conversations. And he describes with particular desperation the sadness of reading letters from kind people he cannot reply to.
“I hoard all these letters like treasure. One day I hope to fasten them end to end in a half-mile streamer, to float in the wind like a banner raised to the glory of friendship. It will keep the vultures at bay.”
While this book was disturbing, insightful and thought-provoking, I think some of Bauby’s obvious natural flair for writing was a little lost in translation. The page- or two-page-long chapters, often jumping from memory to memory, made the narrative a little disjointed and confusing. Nonetheless Bauby’s memoir is a poignant yet non-sentimental reminder to never take anything for granted.
“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.”