In which my deepest terror is realized.
A fellow in Belgium has spent the last 23 years in what was supposedly a vegetative state, only to have new technology finally prove that his brain is normal. Rom Houben says that he's been able to hear everything going on around around him, but hasn't been able to speak or move on his own, with everyone around him thinking he was an inert husk.
This yet another disturbing example of medical misdiagnosis*. His family has reportedly always believed that he was aware, and has taken him to the U.S. five times to attempt (and finally succeed) to prove that he was aware, and find a way to communicate with him.
If this were written up in a dramatic short story, it would make "Flowers for Algernon" seem like the feel-good comedy hit of the year.
_______________________________
*And yet another reason why, though I have deep respect for the science of medicine, I get a bit twitchedy when medical doctors start thinking that they are worthy of telling the rest of us what to do.
Labels: in the news, science, that's gotta suck
posted by Matt G @ 10:17 PM
6 Comments:
Hard to believe they let a diagnosis of vegetative state stand for 23 years without ruling out locked-in syndrome. Remind me not to go to Belgium for medical care.
On a related note, did you ever read "Johnny Got His Gun"?
Thanks for the mention of Flowers for Algernon. That story line still bothers me in the silent hours of the night.
Time to visit the library.
Amen... that is just plain scary... I'd probably have gone nuts (even more than I am)...
Have you noticed that some experts have observed the person seems to be writing via "assisted communication" and that this technique has a great many problems and real issues with credibility.
Meaning, words attributed to him may not, in fact, be his, but rather those or, or strongly influenced by, whomever is helping him.
Or not.
So not only is there the whole misdiagnosis nightmare, there's also the very difficult issue of REALLY not knowing what is going on in this person's head.
Until, maybe, one day, he can write by himself....
It certainly looks like Facilitated Communication in the video . . . and that means I have to conclude the family is being taken for a ride.
I'm not an expert, but I've never heard of a case of FC that could be shown to have worked as advertised (i.e., expressing the thoughts of the person being "facilitated" rather than the thoughts of the "facilitator.")
A couple of years ago people were gushing about the case of a girl with severe autism who was doing relatively excellent poetry and fiction writing. Her mother, a middle-aged woman, was actually quoted gushing that the girl's writing was shockingly good, because although she was a completely non-verbal teenage girl, she wrote with the warmth and emotional insight of a middle-aged woman.
You guessed it: she only "wrote" when her mother was performing FC with her.
The Facilitated Communication scam is particularly despicable because, like the psychics who claim to be able to locate kidnapped children, it plays on the family's love and desperation. And it's particularly insidious because a majority of practitioners seem to believe that it works, rather than just scamming others for money.
Ted, I think you're exactly right. It's hard to believe because it didn't happen, and there are some Belgian medical professionals shaking their heads sadly right now.
I'm not sure that this one isn't a sadder story, as Don pointed out. However, if it were true, there is a novel, called Johnny Got His Gun, by Dalton Trumbo, that tell that exact story.
http://en.wikipedia.org/wiki/Johnny_Got_His_Gun
Post a Comment
<< Home