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 pleasure—like 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 fully—without 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
light—visiting 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.
