Yesterday Talk of the Nation did a segment on living with severe disfigurement. It started with the story of Connie Culp, the first American to receive a face transplant, who had been shot in the face causing her disfigurement. The guests on the show included David Roche (an “inspirational speaker and performer who was born with severe facial disfigurement”), Brie Zeltner (a medical reporter), and Sgt. Salvador Trujillo (an Iraq War vet who retired after sustaining a disfiguring injury on the battle field).
The stories told by the guests and the callers were all heart wrenching, so much so that I found myself tearing up on several occasions during the broadcast. I also found myself identifying with the stories (albeit on a much lesser scale). This is something that I wrote a bit about back in 2005, but hearing this story brought up memories of the stares from others and the look of shock when someone goes to shake my hand only to find something much smaller than the expected sticking out at them.
Now that my kids are getting older and I’m spending more time at their school and with their friends, I am constantly answering the question about my hand (or half-hand if you will). I don’t blame the kids for asking. In fact most of them are very nice and up front about it and I appreciate that. But it’s still something that’s just not fun to always have to deal with.
The fact is that we don’t know why I was born with one hand and missing a chest muscle. They did all sorts of test after I popped out but everything else came up fine. The fact that I was born with one hand has never been something that has hindered me. In fact, I can out type most of the people that I work with, and can often carry more bags in from the car than anyone else in my family (as long as they are the plastic bags with the handles, the paper bags from Crest take a lot longer for me to carry because I can only get about two at a time vs. the five to ten that I can carry with the others). I also have no desire to get a prosthetic hand of any kind (unless they get one as good as Luke Skywalker’s but even then I’m not sure that I’d do it).
More than anything else I know that I am lucky compared to so many, but I can’t help but empathize with stories like this.
1 comments:
My wife has cerebral palsy - though not disfiguring per se, for all intents and purposes she has only one good arm available to her (the other is just dead weight). One thing I've learned about her - she doesn't take no for an answer, and hell she would have me beat on a typing test. She's commented before that if by some miracle there were a treatment that would give her full use of her right side, she'd refuse - she simply would not know what to do with a fully functioning right arm for instance, since she does just fine as she is.
We're rooting for the woman who just got the face transplant in the US. She deserves plenty of good will and prayers as she continues to recover.
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