Amy and I recently saw The Diving Bell and the Butterfly (or, more properly, Le Scaphandre et le Papillon), during an unexpected extended layover in San Francisco. The movie is about the late Jean-Dominique Bauby, former editor of the fashion magazine Elle, who at age 43 suffered a stroke that left him paralyzed except for his left eye, after which he continued to suffer for the next 12 2 years from locked-in syndrome – aware and awake, but unable to communicate. Fortunately (at least for viewers and readers), a dedicated speech therapist (Henriette) was able to open up a new communication channel for him – through repeatedly reciting a frequency-sorted version of the alphabet and watching for him to blink his eye when she reached the desired letter – and a dedicated transcriber (Claude) was able to navigate this channel with him to help him get his story out. And that story is a powerful one, touching on the challenges he faced in dealing with his highly constrained condition, and its effects on his opportunities – past, present and future.
The diving bell in the title is an allusion to the restrictions imposed by his physical condition, while the butterfly refers to the relative freedom of his mental and imaginative capacities that he appreciated – and indulged – all the more after the stroke. What struck me most about the film was that we all suffer some degree of locked-in syndrome – unable (or, perhaps more often, unwilling) to communicate effectively with the people around us. I do not mean to imply for a moment that most of us suffer anything close to the incredible challenges Bauby faced, but the movie did offer me an opportunity to reflect on how often I underutilize communication channels in my own life (this blog notwithstanding).
I remember one time, at the beginning of a surgical procedure, I had been given anesthesia, but it had not yet taken [full] effect before someone started inserting a tube down my throat. I tried to alert the medical staff to the pain I was feeling during this part of the procedure, but was unable to move or talk, and the fear I felt about being so incapable of communicating my predicament was at least as painful as the insertion itself. This was a far more dramatic example of feeling locked-in than most of my experiences, in which I am able to communicate, but unable to effectively convey something I am thinking or feeling to another person … or situations in which I consciously or unconsciously choose not to communicate at all.
Bauby, of course, could have also chosen not to communicate. It required far more effort for him – and for the people with whom he was communicating – than it typically does for me (and presumably, however ponderous my writing and speaking may be, for the people with whom I communicate), and his willingness to make that effort to not only communicate with the people around him in his activities of daily living but to dictate a book about his experience is inspiring. I was reminded of a Richard Bach quote,
Argue for your limitations and sure enough, they’re yours
as well as the lyrics to the Eagles song, Already Gone [video],
So oftentimes it happens that we live our lives in chains
and we never even know we have the key.
Another aspect of the film that moved me was Bauby’s relationship with his children … and their mother (Celine, to whom he was not married). After his stroke, his ability to interact with them was extremely limited, illustrated by a picnic on the beach, during which they play the word game hangman. Amy and I were watching the film on the eve of my “homecoming” – after having commuted nearly every week from Seattle to Palo Alto (or other business-related destinations) for 16 months – and so the lost opportunities for enjoying time with his children was especially poignant … as was his continued underappreciation for Celine.
Bauby’s relationship with his father was also very poignant (for me). Early in the movie, while Bauby is shaving his father (Papinou), his father expresses how proud he is of his son, which brought back memories of my own father expressing pride and approval – as best he could – for his son … as well as more painful memories of him not expressing pride or approval … for his son or himself. [In writing this, I’m struck by how my father suffered from a form of locked-in syndrome, tightly bottling up his emotions, which eventually started leaking out in various ways, shapes and forms.] In my last conversation with him before he died – in 1996 – I was talking with him about the three job offers I had as I was nearing the completion of my Ph.D. One would have enabled me to continue working text-based information extraction; a second would have enabled me to work in the related area of speech interfaces; the third, which seemed both the most promising and the most challenging – what he called “the big job” – would have enabled me to work on something completely different. His last words to me were “Take the big job. You can do it!” I did take that big job – I felt the fear and did it anyway – but I never saw him [alive] again. Although I have many memories of episodes in which I did not receive much-desired approval (from him … and other authority figures in my life), I’m glad to have the most recent – and lasting – memory be an example of explicit and enthusiastic approval.
During the shaving scene in the film, Bauby expands on this theme, noting “We all are children. We all need approval.” Andrea Gronvall expands this theme even further, in her Chicago Reader review:
The Diving Bell and the Butterfly inter-twines
the need for validation—which is tied to the impulse to create—and the
inevitability of isolation and death. Locked in, Jean-Dominique Bauby
wrote a luminous treatise on life and love, leaving behind a work of
art that says “I was here and I mattered.” [Director Julian] Schnabel honors that impulse
with this mature, resonant portrait of an artist.
This need for approval … for validation … for appreciation … for mattering … is something I continually struggle with. As I noted in an earlier post on living without a goal, and mattering without being useful:
I can’t honestly say I’m entirely willing to release my attachment to
others’ [expressions of] appreciation at this moment — despite the
opportunities for practicing such detachment currently being offered me
— but I’m at least
willing to re-open the question of whether and how I matter … and if
it
is possible to matter without being [acknowledged as] useful to others.
And so I guess I’m still in the question … perhaps locked-in to the question … and in the current context, I’m wondering whether the answer – or the key – lies along the path of the butterflies.
Comments
9 responses to “Locked-in Syndrome: Diving Bells, Butterflies, Freedoms and Families”
Kia ora Joe,
I will try and locate this movie here in Aotearoa this very day. It certainly has invoked strong emotions in you, and as I read of your thoughts on your own father I found myself exploring the same types of interactions with my own father. I have always put my fathers locked in syndrome tendencies to his World War II experiences, but they may have only been the tip of the ice berg for so many of that generation. Yet I too can find myself battling to release that inner part of myself which may the best for me, my wife, my children, my friends. As Neil Young says, “I have a friend I’ve never seen, he hides his head inside a dream, someone should call him and see if he can come out, and try to lose the gown that he’s found”. I have always thought he wrote that about his, our, own inner struggles.
I look forward to seeing this film, and glad to read you are off to a flying start with new endeavour. Thanks for stopping by the blog and I would absolutely love to show you the Ruahine ranges. Have a great day Joe.
Ka kite,
Robb
Thank you for your posting!
I found your blog randomely while surfing on the net.
I read the “Scaphandre et le papillon” about 10years
(I guess) in France. That was one of my favorite book , I could not help but keep thinking of this man “prisoner” of his own body. That story really touched me and reminded me how much life and health are beautiful and important!
You just posted another reminder!! Thank you!!!! 🙂
Ditto Robb, great comment. Now I’ve got to go see the film, too, Joe.
Such a powerful metaphor — all of us locked-in in one way or another. In my own mind I attach a feeling much like redempton to the process of unlocking and allowing our full selves to be truly visible in the world. Perhaps it requires a certain kind of trust and a certain kind of letting go; perhaps some courage to genuinely ‘show up;’ and even perhaps an acknowledgment of our unadorned weirdnesses as we come out of denial — that prison we were all sent to wrongly. All of this through free association takes me to the final scenes of the movie, The Shawshank Redemption, that image of a free man working in beautiful afternoon light on a boat next to the sea. May we all find such freedom.
Thanks to all for the comments! This blog post unfolded in a way I never anticipated when I started writing it, and the comments have added additional richness well beyond the original post.
Robb: I believe my father’s attempts to rigidly control his emotions were strongly reinforced during his World War II experience, but I think the roots lay in his growing up as the child of an alcoholic, and were further reinforced through his post-war workplace experiences, where he spent many years working for a manager who did not appreciate him. Thanks for the reference to the Neil Young song, “Only Love Can Break Your Heart” (which can be heard at last.fm) – one of my favorite artists and songs. I hadn’t thought of those lyrics in this context, but now that you’ve pointed out the connection, the song holds even deeper meaning for me. And I’ll briefly note that one of the many dimensions of life and work I look forward to in my new role at MyStrands is [re]connecting more deeply to music … and through music, to other people, places and things.
Nousha: I often enjoy the serendipity that the blogosphere promotes, and am glad that this post offered a little of that for you. There are a few books I’ve re-read after 10 or more years have elapsed, and I often find new insights, in part due being in a different stage of life (and thus having different receptors activated). And being reminded – however serendipitously – of the wisdom they contain is always a welcome occurrence (for me).
Dan: I love your reference to “unadorned weirdness” (and I do believe I resemble that remark :-). Thanks for pointing out the connection to The Shawshank Redemption, a movie I enjoyed watching when it first came out over 10 years ago, and based on your reference here, it is one I now want to watch again … as I’m sure I have new receptors activated, particularly after reading your and others’ comments on this post!
Two of the memories that were activated by this stream of comments – primed, no doubt, by the poetry I’ve encountered on Robb’s blog and Dan’s blog – are poems I heard on David Whyte‘s inspiring collection of poetry and prose, Clear Mind, Wild Heart. One was a poem by Whyte, called The Faces of Braga, inspired by the ancient carvings he encountered at Braga, and his imaginings of the carvers, which contains the following lines:
…
If only our own faces
would allow the invisible carver’s hand
to bring the deep grain of love to the surface.
…
Our faces would fall away
until we, growing younger toward death
every day, would gather all our flaws in celebration
to merge with them perfectly,
impossibly, wedded to our essence,
full of silence from the carver’s hands.
The other poem is called “Love after Love”, by Derek Walcott:
LOVE AFTER LOVE
The time will come
when, with elation,
you will greet yourself arriving
at your own door, in your mirror,
and each smile at the other’s welcome,
and say, sit here. Eat.
You will love again the stranger who was yourself.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you
all your life, whom you ignored
for another who knows you by heart.
Take down the love letters from the bookshelf,
The photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.
I hate to correct you but he did not live for 12 years. He died a few weeks after publication of the book. His CVA happened in 95 and he died like in 97.
Random Girl: thanks for the correction. I think the “12” was a typo; I’ve fixed it in the body of the post.
What wonderful inspiring thoughts! THANK YOU! In an improvisational reflective manner I want to respond to all the writing above! I saw the movie twice, have a friend here in South Africa (Dr. Cival Mills)who was diagnosed with Locked-in Syndrome, feel as if I don’t have the right words sometimes for my friends and remember my dearest grandmother (Ouma Esther Momberg) who said that she had nothing to offer anymore because of age. But it was love…lOVE ABOVE EVERYTHING ELSE.
The poem are for YOU who inspired me, for my friend Hannelore, for Cival and my grandmother.
EXPLICIT APPROVAL
In her eyes I see the stature of a Sculptor.
Her human dignity a celebration
A dance!
Butterfly Memories
Enlarge the core of my vein.
The deep grain of love
pushes
on the surface
a burning sensation
which subsides
momentarily
on my lower eyelid.
Flaws wedded to my structure
The inability to communicate effectively,
to describe the route of my butterflies.
Streets have no names.
But the detail of each corner
numerically precise.
Etched in emotion.
But captured in numbness.
Pure Butterfly Memories
Her being valuable,
beyond usefulness
Her existence-Love.
My butterflies become dreams.
Significant beyond my body.
As bright and uplifting
As the smile
Of a proud parents approval
The most significant experience ever
In relationships
In Love
Therefore recommended by the Sculptor.
Butterfly love
Appreciated and cherished
For whom you are
as earthly companion
and beyond
If you look into my eyes
You will see our Sculptor
Travel through the birth of my tear
Into the grain of my love
to the core of my vein.
Here you will find that the origin was pure.
The take-off and flight of my butterflies without harm.
And you will feel the warmth of my love.
Generated by the Creator
Acknowledged by a smile.
You will send me to heaven.
By: Welmarié Momberg
Welmarié: thanks for sharing the poem, and keeping the karma of inspiration flowing! I want to express my appreciation for you, your poem, and the people who have inspired you … and acknowledge all of you with a smile :-).
Regarding your comments on The Diving Bell and the Butterfly, I have just published my book on the perspective of locked in syndrome from a spirit perspective after living the journey with my sister for seventeen years. The book looks at the illness from her point of view as well as the caretaker’s and points out how just our presence can create miracles in others lives. While desperately searching for a cure we learned together the miracle of healing, which makes the illness inspiring and gives hope to those who are living it and those taking care of them. Books-bysibyl@aol.com give more detailed infomation or portions of the book are also available for reading on Amazon.com