"Nil by Mouth" and "The Diving Bell and the Butterfly"

The title of this post is in quotes, because I'm quoting other titles. The first is from a blog entry by Roger Ebert -- apparently, Ebert is now entirely unable to speak, eat or drink -- hence, nil by mouth.  His last words were spoken to his wife before he underwent yet another throat surgery a few years ago.  He may not be able to speak anymore, but he can write, and he is still writing prodigiously.

In his post (click here to read the long, articulate and witty original) he talks about how his memories have sharpened, in exchange for the loss of the ability to taste foods, so that now he can relive taste sensations of whole meals.  He goes on to say that the worst thing for him is the loss of the social aspect of eating and drinking. He can't really meet anyone for coffee any more, because he can't chat.  At dinner parties, by the time he's written out his comments, the conversation has moved on and the most frequent response is "what are you referring to?"

When I was house-sitting last month, I watched The Diving Bell and the Butterfly, a lyrical film based on the book of the same title. ("Lyrical" is the word the critics use, and it applies for this film. It is visually melodious.) It is a true story, written by a former editor at Elle magazine in Paris (French -- he was French, the book was in French, and the movie was in French although directed in English by an American).  Jean-Dominique Bauby was driving his son to a movie when he suffered a stroke that left him in the rare locked-in syndrome -- complete paralysis except for control of his left eye.  With this eye, eventually, he was able to write a book about his experiences.  Like Ebert, communication is slow -- in Bauby's case, he spelled every word out via blinking: a person would list letters of the alphabet (in order of frequency of use) and he would blink once when they reached the letter, and twice to confirm it thereafter.  Conversations become stilted, but his internal life flowed. His memories became more vivid -- like Ebert, he could relive conversations, meals, experiences generally, as if he were experiencing them all over again.

A nightmare. Ebert merely has an inconvenient disability, in comparison. (And I don't mean to imply that Ebert is complaining -- he seems quite content with his lot, perhaps because of the obvious -- it's better than the alternative, which would have been death by throat cancer.)  But even Bauby found beauty and humor and love in his locked-in life.

They certainly put mundane annoyances in perspective.