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There comes a time
when the heaping up of calamities brings on uncontrollable nervous laughter
– when, after a final blow from fate, we decide to treat it all as a joke.
– Jean-Dominque Bauby, author of The Diving Bell and the Butterfly.

   When is the last time a movie changed the way you look at life? That’s what the promotional language for the best film of the year says. They’re right. If The Diving Bell and the Butterfly is showing at any theater within twenty-five miles of you, please go see it. Although created for the world, this story is truly a Love message to caregivers…

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   The tendency among each of us to approach stroke victims with condescension and pity (a form of condescension) is frightening, dangerous and deeply dehumanizing. And it happens in every hospital and nursing home every day.
   That’s one of the reasons this film, a true story if there ever was one, matters. Imagine, if you can, being struck down by a stroke so severe that it paralyzes every part of you but your left eye. That’s what actually happened to Monsieur Bauby. He was an editor of Elle magazine and forty-three years old at the time the stroke struck him. But more than a stroke, he was afflicted with what his doctor’s called "locked-in" syndrome. Fully able to understand every thing around him, he was disabled from responding in any way but by blinking his left eye.
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   But before you write this off as a movie you wouldn’t want to go through, there’s good news. This film is fascinating, even gripping, from beginning to end. Among the full house at the Belcourt Theater in Nashville, I never heard a single cough. Not only did no one get up to leave, but everyone sat riveted until the final moments. Perhaps that is because the story is so beautifully told. We travel with Bauby through some of his fantasies like the butterfly he becomes. And we are enthralled.
   It took 200,000 blinks of Bauby’s left eye (as part of a communication code he and caregivers developed) for him to tell us what it was like to live locked-in to his own body! We can only imagine how long it took dedicated caregivers and editors to help tell his story, at the rate of two minutes per word!
   The Diving Bell and the Butterfly is a story of a man with a passionate sense of purpose whose potential to communicate was reduced to something as trivial to us as an eye blink. This is a story that incorporates every one of the principles it takes to live Love – for Bauby’s caregivers as well as for their courageous patient. Perhaps the least we can do is go and watch it.

-Erie Chapman

5 responses to “Day 23 – Loving Purpose – A Must-See Movie for Caregivers!”

  1. liz Wessel Avatar
    liz Wessel

    I appreciate your movie recommendation and I definitely plan to see it. What amazes me about this story is that this man was able to give expression to it despite his communication challenges. I wonder what he must have experienced as he sat and watched his life experience on the screen.
    This story reminds me of a situation a brilliant friend of ours is in after suffering an arterial bleed. He is totally dependant on others for all care and communication is very limited and difficult. It is easy to misinterpret his inability speak as a lack of awareness or understanding but this is not the case. Within the confines of his “locked in” body, he still expresses Love with a squeeze of the hand or the offering of a little kiss.

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  2. Erie Chapman Avatar
    Erie Chapman

    What I wanted to do for my father-in-law after he had a stroke in 1986 was to put up a sign above his bed for the nursing staff. The sign would have said: “Please speak to this person as you would to any other adult you cared about.” Unfortunately, I didn’t think of it until too late.

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  3. Edwin Loftin Avatar
    Edwin Loftin

    When we in Nursing and all direct healing care givers can remember that important fact, Erie…..just imagine the loving care force that will be created.
    That will be a “good days work”

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  4. liz Wessel Avatar
    liz Wessel

    To look into another person’s eyes to see our mother, father, grandma, grandpa, sister, brother, friend, lover, we will have found our way; we will know we are home.

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  5. ~liz Wessel Avatar

    Believe it or not, I finally saw this movie. This essay and your recommendation to see it made quite an impression on me. What an incredible act of Love and testimony of his passion for life. His caregivers were an integral part of that act of love, a truly relational experience. Mr. Bauby died just 2 weeks after his story was written.

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