Friday, January 11, 2008

French film explores "locked-in" syndrome, from perspective of the person


The Diving Bell and the Butterfly” (“Le scaphandre et le papillon”) starts out in a way that makes one wonder if there is a projection problem. In a few minutes you realize that you are seeing the world through the one working eye of someone waking up from a massive stroke , or cerebral vascular accident. As much of the film as possible is shown through the perspective for former Elle editor Jean-Dominque Bauby (Mathieu Amalric). He communicates through winking his left eye, once for oui, twice for non. With this, he can dictate a whole autobiography to an assistant, one letter at a time. The book is the basis for the movie. (He had wanted to rewrite Alexander Dumas 's "The Count of Monte Cristo"). The metaphor refers to his existence: being in something like a diving bell, and the idea that a butterfly escapes from the cocoon that housed the pupa. (That is shown visually, recalling a science biology film that I saw in 2001 at the Nemo museum in Amsterdam.) The doctors have explained this as “locked-in syndrome.” The speech in this film is so measured that even with only high school French, one would not need subtitles.

To pick up momentum, the film (directed by Julian Schnabel, produced by Pathe and distributed by Miramax in the U.S.) provides a sequence of flashbacks to the days when Bauby was a vigorous, attractive 43-year-old. We see his life in Paris, then the country trips, a drive through the Pyrenees to Lourdes, for a visit to the grotto, with a bit of irony since he is healthy. The film shows the Hotel Royal, near where I stayed in May 2001. (I recall that a woman collapsed in the restaurant while I ate lunch; then I would have a dinner discussion with a Basque waiter.) He has his stroke while driving with family in the countryside, near a spot similar to where I stayed one night with a rental car in 1999. It seems that the stroke is a totally random event that could happen to anyone. There is a scene where he shaves is father (Max Von Sydow), and then calls him later.

The film certainly puts caregiving in a certain ironic perspective. The French national health care system takes care of him impeccably at the Berck rehabilitation facility on the Mediterranean. A flashback shows when it was a tuberculosis sanatorium. Even Michael Moore would be pleased with the medical care setup. However, the prospects for someone who is so immobile cannot be good. Pneumonia is a grave risk, especially when you can't cough. (I found that out when I had a broken hip in 1998.)

Another recent film that shows the world through a patient's vision is "The Eye" (2008, Lions Gate / Paramount Vantage, dir. dir. David Moreau, Xavier Pulad, wr. Sebastian Gituirrez, remake of the Chinese "Jian gui"), a horror thriller where a formerly blind concert violinist gets visions of her donor through "cellular memories."

Update, Nov. 24, 2009:

A man in Belgium, in a "vegetative state" for over 23 years (after an accident)with "locked in syndrome", was found to have understood everything. Over 40% of people in these "comas" may actually be aware of what is happening.

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