HD Youth: We Are the Future
They say there’s a reason for everything.
So there must be a reason my life is affected by Huntington’s disease.
And that is the reason for this blog.
My name is Ashley. And I have a story to tell . . . .
If you have read some of my previous blogs, you will know that I have been caring for my father for a number of years; in total, Huntington’s has been in my life for around 10 years. It is 2016, and we have amazing organizations around the world which offer support to young people worldwide.
At a young age, I was told my father had an incurable disease which I had a 50 percent chance of inheriting. This was a tough pill to swallow; there were no answers for my mother, brother, or me on how to cope with the news or what Huntington’s was/is. There were, on the other hand, plenty of horror stories, and this is what I filled my mind with.
I was obsessed with Huntington’s disease and what it would do to me. I was obsessed with it taking over my life and taking control. I had to be in control! Control was something I did not have and still do not have. I cannot control what will happen in my future; I do not know if I will make it to 50. I understand that no one knows what will happen tomorrow, and the most frequent thing which would be said to me would be, “You could get hit by a car tomorrow,” because getting hit by a car is the only thing that can kill you, right? There are millions of diseases and millions of different ways to die, but I have a 50 percent chance that my way could be because of Huntington’s disease.
At the age of 16, I decided to organize a fundraiser for Huntington’s Disease Association Northern Ireland. They had been supportive of my family in the first few years of Huntington’s entering our lives again, and I wanted to give something back. I was obsessed. This night had to be perfect. I held it at our local hall and had a friend come and be the DJ. I got tickets printed and sold them for £10, I think; friends and family donated raffle prizes; my father’s late brother donated a lot of tools from his hardware store; and all night, people were coming up to me, giving me large amounts of money. The bar alone donated £250. In the end, we raised £1500, which was overwhelming! I got up on stage and made a speech. I thanked everyone for coming, and there was no surprise, but a fight had broken out, and I told the entire room to wise up, grow up, and remember why we were here, and what we were supporting.
As said before, I was obsessed. I had spent months planning this night. I had made a presentation to be played on the night about Huntington’s disease, and watching it now, I’m not entirely sure all the information on it is correct; there’s even a spelling mistake! A friend of my dad’s made DVDs of Dad and his friends skiing on Lough Erne over the years, before his plane crash. Once the night was over and the mini bus I had arranged to bring people home was done, it was time for Mum, Ryan, Mary (a family friend), and me to head home to our house in Killylea. We got home, and everyone headed to bed. I sat in the living room with the light off watching the DVDs of the man my father used to be, crying hysterically because I was losing my dad, and I didn’t know what to do next.
I felt lost. I was lost.
I am now 23, and it didn’t exactly get any easier. There was no support, doctors, social workers, and health professionals. Everyone was concerned about how Dad was and how the disease was progressing, and I understand that more than anyone. I watched him every day deteriorate and continue to do so. Carers are important, too, though. As much as my father is my life and his care and well being are everything to me, my mental state is important as well. My future is important.
Having a youth programme for the young people affected by Huntington’s disease is vital. Society needs to look after young people’s state of mind and ensure that they get the information they need and not scare stories. Most important, young people need to get the support they require, trying to cope with the fact that a loved one suffers from a disease which is incurable and the fact that the same disease may take their life.
We need to support the young people and show them that Huntington’s disease does not define you; it is not who you are. It may be a large part of your life, but that’s just it, a part of your life, not the entire thing.
It took me many years to realize this, and through #imnotdrunk I would like to get this message out to the world.
You can still do everything you want to do, go to university, travel, and live your dreams. Huntington’s does not have to control your life; you can still be positive and live the life you choose. Take control. If you want to get tested, then that’s your choice, and don’t let anyone take that away from you; if you do not want to find out if you have inherited the disease, then that’s also fine. Whichever your decision may be, let it be your own, and continue to live your life how you want to.
You can follow Ashley’s blog here: https://kyraashley.wordpress.com/
You can follow her on Facebook here: https://www.facebook.com/hdawarenotdrunk/?hc_ref=SEARCH
You can also follow her on Twitter at #imnotdrunk
This blog originally appeared on Ashley’s blog on October 11, 2016.