Amy's Story

Hi, my name's Amy. I want to tell you about Kevin. He's my boyfriend. We mean to get married, but it has not worked out yet. He wants a registry office, because he gets so nervous. At first I wanted a church, but the thought of that made him panic so much. And after a bit I realised it would not be that good. Would never be like the weddings I dreamed of as a kid. Young kid I should say. So I agreed to the office. It was to be yesterday. But Kevin's granddad died last week, so he had to fly off to the funeral. I was to go with him, but I can't fly. Well I can, but I get so scared, it's not a good idea. I'm ok for a short flight, but not all the way to America, not for that long a flight.

I seem to be straying from the point. I wanted to talk about Kevin. And me I guess. Maybe about you as well. There are some people, not many, who might be encouraged by our story. So it is kind of them that I'm trying to talk to. Not the rest of you. But maybe you can learn a bit about us too. Learn that we are real people, just like you, no different at all really.

You see Kevin has prosopagnosia. I know that's a long word, but that's what the doctor called it, I looked up the spelling. It means he can't recognise peoples faces. He has other problems too, but he has learned to work around them, and when he has one of his moods you just need to leave him alone for a short while, then he is right as rain. Watching films and TV can be tricky at times, he can get confused, but I can usually put him right, and he can laugh most things off. But the faces thing, you won't know it when you first meet him. And you may find when you next meet him, he will recognise you. But that will be because you are wearing the same clothes. Or because you meet him in the same place. Or maybe he has called around at your house, so that means he knows who you are. But imagine it was your sister, or brother if you're a man, who answered the door. He would chat away to them as if they were you. If you were to bump into him in the street, he would not know who you were unless you told him. Some people he can recognise, if they have flame red died hair for example, he can remember that. Our friends and family are used to it, but people we only know a bit think he is rude, till they know better. Others might think him a bit odd. "Hi, I'm Kevin." He will say, even though they know full well who he is. He told me about a girlfriend he had at college, she was called Clare. I think she may have been his only real girlfriend before me. He has talked about others, but I think they were just women he knew. Casual friendships he has talked up into relationships to make himself look more like a real man. Or rather what he thinks a real man is. You know how men are. From what he says, sounds like it was Clare who did the first chatting up. He told me how everything was fine when they went out together with just the two of them, he is sweet once you get to know him. But there were some bad times when groups were involved. He would get confused with which of the girls was Clare, and he would just sort of freeze and come across as stand-offish and rude. You know how girls are at that age, similar hair and might borrow cloths off each other. I think he found it a bit traumatic. If he had explained it all to her, she would of understood I'm sure, as she sounds nice from what he says. But he did not, and I'm glad he did not, because otherwise he may not have met me.

Which kind of brings us to me. I was born with Carpenter Syndrome. There I've said it. It's a medical way to say that I have some kind of genetic problem which makes me ugly. Well that's an understatement. I had some surgery when I was very young, but my face is still significantly asymmetrical, as the doctors say in their smooth talk, which is a way of saying I don't look like other people. People stare, they always have, I don't like it, never will. But I just have to sort of put up with it now, even when it hurts. In a way it is good that it hurts, it means that I can still feel, means that I still have all my humanity. After all there are those who are beautiful on the outside, but they cannot feel things right, cannot cry. They have lost something that matters. And surely that makes them less human than I am? In a way I was very lucky as there are many other things that can go wrong, I don't have those bad at all. Well I'm a bit podgy, but I think that's just because I used to eat too much, and the wrong stuff, though that's getting better now as Kevin encourages me to eat properly. And so I think my weights down a bit, though that's going to change soon.

But coming back to Kevin, he likes me because he can recognise me in a room full of people. That gives him something he has not had before. I make him feel normal I guess. Which is surely what we all want. The problems he has, the doctors said they are rare, and not passed on. My problems, the kids might be carriers, fifty percent chance I think it is, but only have the condition if both parents are carriers. It's rare, like really rare, which is why people aren't used to seeing people like me. Kevin's been tested, and he's not a carrier. When we were told all this we started trying for a baby, because our baby should be just as perfect as any other. When Kevin went for the blood test, I went with him as he hates hospitals and things like that. There was a woman waiting there who was blind. Well she said she wasn't properly blind, just blind in one eye and couldn't see out the other. Now I think that makes her blind, but I didn't want to argue with her. Anyway, she was chatting to us, and when Kevin went in for the test, she asked me what I saw in him, and that she thought him a bit weird. Old people can be like that, forward like. But she was seeing what was inside the two of us, most people just see the outside. Kevin says that some people ask him why he likes me, and I think that they just see the outside. Which in a way makes them more blind than that old woman if you see what I mean, because it is what is inside that matters most.

I took the pee test thing yesterday morning, before going to meet his plane. Which was a bit funny, I've got to tell you. There was a hoard of people coming out of the arrivals, he was looking lost and scared. He told me once that being in a large group of people made him feel like he was a lump of bloody meat, thrown into a pool of circling sharks. So there he was in amongst all these other people, then he saw me, and he broke into this huge smile. He looked so happy to see me. And that made me feel so normal. Which is what we all want I guess.

Anyhow he is asleep now, bless him. Which I never understand. People sit on their bums for nine hours, and that makes them more tired than those of us who have worked all day! I'll tell him the good news tomorrow, and he can tell me all about America, though he was not there for long. And it was a sad occasion for him. I will work at my flying, perhaps a few short trips first, and maybe next year or the year after we can all go together.

Sep2009

silvercoat