The Diving Bell and the Butterfly

I picked up a film a few days ago called The Diving Bell and the Butterfly. A true story of a man who has a massive stroke in his early 40s leaving him devoid of even the smallest pleasurelike swallowing food or hugging his children. Although his brain is functioning perfectly, he is “locked-in” his body. His only form of communication is to blink his left eye. He ends up “dictating” a book about his incredible experience, which is the inspiration for the film. I’m reading the book now that is equally, if not more, touching than the movie.

My heart is flooded with emotion from what this story has resurrected in my mind. A sense of urgency to live life fullywithout regret. In truth, I live my life fairly intensely. I love without reserve. I give my full attention to whoever shows up. But I still do my fair share of resisting my life situation. Often feeling a sense of impatience and sadness with how things are unfolding.

Jean-Dominique Bauby’s story reminds me how much we take for granted and just how amazing the human form is. We don’t need to add anything to ourselves. We are perfect just the way we are. Bauby was forced into a state of surrender. There was no way for him to remove himself from his situation. He had to adapt to endure his suffering. The remarkable thing is he does just that! He composes this beautiful story. He bares his soul. On one hand there is his loneliness, despair, and frustration for his predicament and on the other his ability to experience heart-swelling gratitude for the kindness of medical staff and loved ones. Here’s an excerpt that had me in tears last night. [Sandrine is his speech therapist]:

Sometimes the phone interrupts our work, and I take advantage of Sandrine’s presence to be in touch with loved ones, to intercept and catch passing fragments of life, the way you catch a butterfly. My daughter Céleste tells me of her adventures with her pony. In five months she will be nine. My father tells me how hard it is to stay on his feet. He is fighting undaunted through his ninety-third year. These two are outer links of the chain of love which surrounds and protects me. I often wonder about the effect of these one-way conversations on those at the other end of the line. I am overwhelmed by them. How dearly I would love to be able to respond with something other than silence to these tender calls. I know that some of them find it unbearable. Sweet Florence refuses to speak to me unless I first breathe noisily into the receiver which Sandrine holds glued to my ear. ‘Are you there, Jean-Do?’ she asks anxiously over the air.
And I have to admit that at times I do not know anymore.

The human body has its limitations and in a way we are all locked-in. Perhaps this is why this story is so powerful. It stirs a memory in our souls of the agony of being in human form. At the same time, our bodies and minds, that are so complex and extraordinary, have the capacity to experience beauty, grace, and the deepest emotion. There is much to delight in. There is much to be grateful for.

Two years ago in late summer, I was speeding down the highway to attend a wedding that I was late for. Butterflies were migrating and gathering nectar from the wildflowers that line the 401. Every now and again, a butterfly would fly into traffic. I watched their delicate bodies tossed about by the rush and heat of the cars and transport trucks. It seemed hopeless to me! How would they ever survive in these conditions? Yet some must and do because butterflies still grace my garden and delight me on my walks in the warm weather. We are not so different from these fragile beauties. What a world it would be if we treated each other, and all things, with reverence and tenderness. If I have any ambition in life, it is to do just that.

Note: In the film, Bauby’s “wife” (the mother of his children) is depicted in the most flattering lightvisiting and caring for him in hospital. According to an article published in the Guardian though, it was his lover Florence Ben Sadoun who remained lovingly by his side and even held his hand when he died. Apparently, she has also written a book entitled La Fausse Veuve. If I can find an English translation, I intend to read that as well.

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I speak these words to the trees and crows, 
“I just miss him.” 
Tears fall down my cheeks 
and drip on my hands and these pages. 
I miss him so much. 

The sun warms me. 
The same sun that warms his skin 
perhaps, exactly, at this moment. 
Maybe we are both sitting in the sun 
thinking of each other... 

I can’t know for certain, 
but I think he might be 
missing 
me 
too.