an essay by Sara Duncan (14yrs)

When it comes to hard things in my life, coping with HD would have to be number one.

It makes me think of Dad and the life he leads. It makes me think of my brothers and me and what lies ahead for us. Will we get HD? Will there be a cure by the time we're diagnosed? And will we be able to cope with this disease if it creeps its way into our lives.

When I visit Dad each week, I sit there facing him wondering how much longer he'll be able to talk to me so I will understand him. When we walk down the street to get some smokes we get the odd stare because he doesn't walk like everyone else. The when we get to the shop people treat him with courtesy and when it takes Dad a while to get his money out of his wallet they stand behind the counter, probably wondering why it takes so long to do a simple task. Then we walk home and laugh and joke while I think about how special he is and the grief that he must go through and the shit he has to put up with. I mean that is what it really is ! Shit. He goes through every day with a struggle, each day finding it harder and harder to swallow his food , finding it difficult to do things that should be so easy . Then when he talks to us it takes him a long time to say what he wants to say

He hides it all so well, with so much courage. He laughs and jokes about it Like when he says " I need to go to Jenny Craig", when he is down to 50 kilos. But the thing is , as much as he tries to hide it, I know deep down he is hurting and is frustrated and angry. I also think he finds it harder because of the fact that we kids could go through the same thing and he doesn't want us to live the life that he is living.

I get so annoyed sometimes when I look at his gaunt face that I just want to close my eyes and make it go away. Gut when I open my eyes again, Dad's still there going through the same thing he was before I closed my eyes. I sit there and wonder why such a horrid thing had to happen to such a loving, caring person. I mean , why did it have to be something so drastic? Why couldn't God have just given him something minor like an amputated leg? At least then he'd still be able to live longer. But noooo - instead he was blessed with a lifelong disease that would eventually end in death.

I guess that's why you have to shed light on the subject because it's such a serious illness, but if you take it too seriously you can become bitter and so grumpy that you start feeling sorry for yourself and people start to get to the point where they can't be bothered anymore.

That is one thing, I have never heard Dad complain. Not once have I heard him say, 'Aw, I wish I was normal", or "Why did this have to happen to me?" He just keeps to himself and although he may think these things he doesn't mention them to anyone. He just goes on with life as happily as he can, doing those things he wants to do and spending time with those he cares about most.