Sunday, August 9, 2009

"A mind is a terrible thing to waste" *

She was a pretty girl with a great personality and bright future. But she had been kept in a cruel prison for most of her life. She didn't understand why she was imprisoned only that the torture of seeing herself trapped forever by circumstance was nearly more than she could bear. All she ever wanted was a normal life. This was denied to her by her prison. When she looked in a mirror she saw not the pretty girl with the great personality and bright future, but a beautiful pair of eyes looking out of a mountain of fat. She was in there somewhere, imprisoned by her own body.
I read this short story (alas the citation fails me) many years ago. It left me feeling sad for the girl within and angry at the girl without. Those emotions are probably best left for another day. This story came to mind when I thought the other day about the terrible and very real possibility of a stroke victim being a prisoner in a body that no longer responded to commands. A cruel trap for the mind. How, I asked, could someone endure the isolation of one-way communication? The humiliation of daily care? The being overlooked by others as they talked about you as if you were not a presence in the room? I am talking here about those massive strokes that don't kill but leave a person in a prison of flesh with an intact mind. Not the kind where recovery is likely, but those that have little hope of normalcy. No walking. No talking. No independent activity what-so-ever.
This brought to mind another kind of prisoner. The cerebral palsy sufferer. (CP). I have been with many CP people over the years and have found most with beautiful minds and good intellects. Why not all you ask? Doesn't CP usually leave the mind intact while the body fails? The answer is yes, the mind is almost never functionally damaged by CP. But the ravages of the body can lead to the stroke-like situation of one-way communication.
Imagine a baby born with a very sever level of CP. Potentially normal mind that cannot reach out. Babies and the children they become have in the past often been considered mentally retarded because they couldn't respond. Well guess what? If a person with normal thinking potential is treated as if they are mentally retarded they can become functionally that way. Not because the latent ability was absent, but because the latency was never developed. Every day thousands of human being's minds are wasted because they are cut off from the world.
The point, you ask? Well, for one thing each of us can hope we don't have the massive stroke that takes away the body but leaves the mind. Better for the more massive one that just drops you like a sack of sand. And as far as CP is concerned, the next time you get a chance to talk to someone that has it, let them talk, and listen carefully to what they say. It's hard sometimes, but if you just smile and nod and say not much at all, then you are just patronizing them, not talking to/with them. If you don't understand what they say, be persistent. They know it's hard for you to understand them. They want you to. They will work hard to help you. Just let them.
Now for the future. What we need is a brain-computer interface that allows a brain to speak directly through a processor without the need to physically talk. You can think talking in your head, so the formation of all the speech is there. We need a device that will read those outputs and convert them into algorithms that can be formulated into speech by a computer of some kind. I think research into this is already underway and I hope it gets ready by the time you or I need it. Think of the minds that could be unlocked from prison.
And for the girl there is hope too: research has uncovered many genetic connections that make body proportions difficult to manage. Genes for extremely efficient use of food, and genes for resistance of the use of stored fat in metabolism have been identified. So with some counseling, maybe some surgery and some genetic manipulation genetically obese people may walk away from the prison they live in. Don't tell me all they need to do is quit eating. Ever try it?

*http://www.uncf.org/?gclid=CNW5zqCevZYCFQpOMAodsnxMzA

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