Typically late in getting round to must-read books, I’ve recently read Jean-Dominique Bauby’s The Diving Bell and The Butterfly.
“Once, I was a master at recycling leftovers. Now I cultivate the art of simmering memories.” Jean-Dominique Bauby, The Diving Bell and The Butterfly
What an intriguing read. Touching and direct, it’s one man’s account of living with locked-in syndrome. With no place for the superfluous, the book has at its heart a strong sense of honesty and a poetic, almost lyrical rhythm. I find myself naively wondering whether Bauby’s economic use of language was an artistic choice, or a result of the means by which it was authored. How it was authored truly amazes me. Bauby’s only means of communication following the massive stroke that left him “imprisoned inside his own body, unable to speak or move” was to use his sole functioning muscle – in his left eyelid. And that’s how he wrote the book: painstakingly spelling each word by moving his left eyelid in response to an alphabet “rearranged according to the letters’ frequency of use”, recited over and over again by his bed-side assistant. Astounding.
Reading The Diving Bell and The Butterfly has been a hugely relevant and timely experience for me. Firstly, my putting the book down coincided with Tony Nicklinson‘s passing, less than one week after having lost the legal battle to end his life as a sufferer of locked-in syndrome. His story was everywhere and rightly so. On a more personal level, over the last few years my family has been coming to terms with slowly losing a loved one to dementia and the effects of a brain tumour. I don’t like using the word ‘losing’ because it implies an ownership of some sort. And nobody owns anybody. It’s complicated, it’s often painful and it’s ongoing. Here’s a Kate Banks poem on such matters for you…It’s called The Slip.
Can you catch me? I’m falling.
Eyes paled by the fading of the light,
Hands twitching on lap,
With an imperceivable, momentous edge towards the beginning,
a raging scream so silent it is not heard,
and a thrashing so still it is not seen,
Is this where his eyes, distilled by the paring down of life, are focused?
On a place from where babes born yet not wholly present, slip into our world;
A place to where those held by tubes, machines and progress have already gone?
Here the journey’s end meets the beginning.
And he waits
Can you help me? I’m falling.
© Kate Banks September 2012
By the way, I’ve not seen the 2007 film The Diving Bell and The Butterfly (here’s the mesmerizing trailer), though I do love Ronald Harwood’s work as a rule. It looks as if the appeal of the film is in its glorious cinematography but I found Bauby’s personal account so raw and honest that I fear I may resist and resent being manipulated by the film. And I can’t pretend I haven’t read the numerous reports of misgivings by Baubys’ friends on the film’s ‘take’ on his life. If I change my mind and watch it, I’ll let you know…