The Courage to Go On
An essay by Sara Duncan (14yrs)
When it comes to hard things in my life, coping with HD
would have to be number one.
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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. Then
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
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. But 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.
So all up this disease has taught me a lot. It has taught me to be strong, to have
courage and not let anything get the better of me. It has taught me to make the best of
life while I have the chance and give everything 100 + 10%. I could have sat around every
day of my life feeling sorry for myself. But I don't. I'm not going to let some disease
knock me down just yet. Yeah, I have days when I find it hard to cope and break down. But
when it comes down to it there's no point in grieving every moment of the day. My Dad is
so special to me and when he dies I have no idea what I'm going to do but until then I'll
keep on supporting and loving him as much as I can. He is the strongest, most courageous
person I know.