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Locked-in Syndrome: Diving Bells, Butterflies, Freedoms and Families

Divingbellposterbig Thedivingbellandthebutterflybook 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.

Th0084_107_35 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.

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