Home page
About the New Zealand HD Associations
Living with Huntington's Disease
Publications, press releases, conference information
Selected articles from HDA newsletters
2009 Newsletters
2008 Newsletters
2007 Newsletters
2006 Newsletters
2005 Newsletters
News, articles and links to items of interest in HD research
New Zealand contacts
Acknowledgement and Disclaimer

Issue 99, December 2007

Personal Story - The Talk

We will always look back on our childhood as the best days of our lives. From the days of running around and tumbling in the mud to playing dress up with our parents best neatly hanging in the wardrobe, but we would just pull it down.

We learn everything at this time, table manners, how to blow your nose, tie your shoe laces, to say please and smile when you want something. Well we have to learn the basics. There are also the things that you are sat down and told. But I'm not talking abut the 'birds and the bees', of course I got that talk but the one I'm talking about is a little different. In fact it's different for all of us and some might never get it. It's the talk you get to explain death.

First, before I explain this talk, I would like to point out how children will always know when something's wrong. Although you couldn't sit a two year old down and give him an algebra test to do, you could have him tell you "Daddy made Mommy sad and me scared when he shouted", as kids get older they still have this 'sixth sense'. In truth we all still have it but are too preoccupied with our own lives to notice anything wrong with others unless it's something huge!

Anyway at the tender age of eight I knew when something wasn't right in my house. Around this time my parents always seemed to be worried about something other than the usual family worries. The thing that made this concern stand out was that they were both worried. In a way it's kind of odd to say but that's how it was. You could tell what ever was wrong was pretty bad.

Then there were the visits from the lady dressed in white, a nurse. Little was said to us children when she called, we were just sent out of the kitchen and told to go off and play quietly. Through the small glass panels of the kitchen door we would see our parents sit together opposite the nurse who would be taking book, sheets and leaflets of many different kinds from her bag. They would be in there for what always seemed like ages. The nurse did most of the talking. You could tell that she was answering questions.

If we ever asked questions when the nurse would leave they were only ever answered in a way to satisfy a child enough to make them go away or we would be told it was 'mommy's and daddy's business' and that was that. Nothing was ever explained. Now my father has always had a bad temper, and he would often lose it. It was after one of his outbursts on me that I was told the cause of my parents concerned behaviour over those past few months.

I remember that talk quite well. It is amazing how the things that are bad or upsetting are always the ones you will remember. I point this out because this memory is nearly as clear as the one of the night my grandad, who was my best friend until I was five, died.

I was in my bedroom sitting on my bed watching television, trying not to think about my fathers' outburst. Then he came in and sat down on the bed next to me. He was after calming down and began to apologise for losing his temper. He was sorry but I could tell from the look on his face that something else was wrong.

He began to explain why the nurse had been coming and then there was the first mention of the word disease. Hearing those seven little letters put together felt like being run over by a train. At that age to me disease was on the television in programmes like ER. My first thought was that my father was going to die and that I was going to be singled out and isolated in school because of it.

Then it got worse. I learned that the meaning of inherit wasn't just that you got money and a fancy mansion when a great grand-uncle died. I could have this disease too. The isolated feeling grew and spread through me like a cold chill. I felt like I was diseased with leprosy or something. That no one would go near me for fear of catching it.

Later the initial shock died down and I began to understand a little about what Huntington's Disease was, Well it became clear that no one was going to die and that I wasn't a walking germ. My isolated feeling disappeared when my parents said that we were not to go telling any one about my father having HD. It was clear they really didn't want people knowing and they were only going to tell people who were close to our family. Because my parents felt this way about the whole situation we rarely talked about it except when curious siblings of mine would bring it up.

You would think that when you find out a family member has an incurable disease that your life would change forever. In truth there were not physical changes to our lives. But nothing ever felt the same again.

As I got older I became more curious about Huntington's Disease. Asking one of my parents was out of the question.

They got too emotional. Not that they'd break down in to tears or anything, they would try and hide it, so as not to upset us but you could tell it upset them.

So I read all the books the nurse gave them about HD. It didn't really make anything clearer. My father hadn't changed. The disease affects him emotionally mostly. HD was established as the cause for his tiredness and uncontrollable temper. In the book they tended to elaborate the physical side of the disease. Twitching and uncontrollable movements. One of the first things stated in the book was that the disease was first known as Huntington's chorea, meaning dance, because of these symptoms. Since my father didn't show these symptoms the fact the disease described in the book was in our family never really sunk in. We just knew our father had it and that was that.

It was after my parents made contact with other Huntington's families and we met up with them that I began to accept the fact it was part of our lives. Meeting these people was a real eye opener. In one of the families we met up with it was their father that also had Huntington's but it affected him in different way to my father The twitching described in the book was coming to life before my eyes.

After that there were often days I would start to worry about the future because of Huntington's. Fearing that the day I would be told I had the gene my life would end. Worrying about not being able to have a family for fear of passing on the gene therefore living and dying alone. The only thought worse than this, was of being told that I didn't have the gene, but that one of my siblings did. I felt guilty when there was nothing to be guilty about.

Since then I have found out more about Huntington's. I have also talked about it with friends, which has really helped. From learning about how other people have lived very happy lives after been diagnosed with the gene, my end of the world theory has drifted far, far away. Whether I have the gene or not isn't going to stop me living life to the full.

Yes one little talk can change your life. Be it for better or worse. The different experiences in life are what make us the amazing individuals we are. If we do all we can while its possible then there is nothing more you could want in life. Even if your time is limited because of something like Huntington's Disease it still shouldn't stop you

Acknowledgement: Hope Annual June 2007 - The Huntington's Disease Association of Ireland

Back to the top | Back to Contents

Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
on this site, and to Graham Taylor for maintaining the original site for so long.

Home | About | Information | Resources | Newsletters | Research | Contacts | Disclaimer |
Original content HD Associations of New Zealand