The Diving Bell and the Butterfly

The other night I watched The Diving Bell and the Butterfly (2007) on MUBI. The film, based on a book, shares the true-life experience of a man affected by ‘locked-in’ syndrome as a result of a severe stroke. Although my Motor Neuron Disease symptoms are still a long way from restricting me as much as is depicted, I had a hunch that the film would strike a chord with my own experiences or at least the forewarnings I’m starting to get about how things are going to be.

My hunch was correct. It’s a wonderful film and I found it very moving from beginning to end. I think the director was driven to bring us into the experience of being locked in, to demystify this situation and to challenge our ignorance and perhaps lack of compassion. A supreme effort has been made to understand, accept and communicate what this man is going through.

Reviews of the film mention a daring approach to cinematography where we see the world literally through the eyes of the protagonist, Jean-Do, for most of the first half of the film. Not only do we see what he sees, we also hear what he thinks because although he cannot speak, we hear his thoughts. We experience his restricted view, with only one eye working and unable to move his head. This means, in particular, that we see which people he engages with and how, and in contrast we can tell when he wishes people would just go away. This inside view also allows us to see that the book he is painstakingly writing does not entirely correspond to the version of his life that we see.

I’ll mention a few specific moments that were particularly emotional for me. Spoiler alert!

A surgeon comes to stitch up his right eye. We hear what he wants to say, at first derogatory and finally pleading with the man to stop and yet without a voice the words are not expressed and Jean-Do is helpless to prevent half of his world from vanishing against his will.

A therapist declares that her work with him is the most important work of her life. She and others dedicate hours to helping him communicate and find some joy in existence. This connection with another person through language, expression, care and being heard seems to me a place where meaning can be found in life and something I am fortunate to have experienced since my diagnosis.

Strapped to a board, held near vertical in the midst of a busy rehabilitation gym, a fly lands on his nose. With his single working eye he stares at it, but willpower is not enough to change even such a small circumstance.

He has his should-have-been-wife, the mother of his children, who has been with him a great deal in hospital, decode and relay a message of devotion to his girlfriend - who has neither called nor visited him. There is so much in this. Honesty, the complex of joy and pain in his relationships, his clinging to his former identity. This is not a Hollywood story.

Though there is a great deal of loss, sadness, grief and frustration in the story, it is more than balanced by the personal transformation Jean-Do undergoes and the moments of connection, richness and joy he finds. Again something I relate to. A transition from mostly doing, to mostly being. I am reminded of Upadesa Saram.