'Extraordinary Me'

I was diagnosed with Huntington's Disease at the ripe age of 28. Getting tested for the disease was an easy choice for me to make.

I have a mum who for years lived in a world of denial about having Huntington's. This has had a huge impact on my family. My family over the years has struggled with her denial and symptoms. They still do to this day. My dad throws himself into work, golf, the boys and the grandkids in order to avoid dealing with Mum. My brother Mathew no longer invites his friends over and makes a point to not be home at night. My brother Mark is counting down the days until he graduates from university and is able to move out of the house. I am not sure how my brother Danny is dealing with the changes in Mum. To be honest I have not had that conversation with him yet. The family dinners that occurred each night do not seem to exist anymore.

I did not want to live in a world of denial like my mum. I saw what impact this was having on my family. I made a decision that I did not want to live like that. I wanted to know. I wanted to be able to make well-informed decisions when it came to me and my life. I wanted to be able to face whatever the results of the testing may be.

I went online to the internet, did some research and found a clinic where I could go to get tested. The independent me went to the clinic by myself. I sat through discussions about what Huntington's Disease is all about. There were also discussions about why I wanted to get tested. I finally had my bloods drawn. I have a strong dislike for needles so this was not easy for me. During this appointment, the nurse advised that it would be best for me to bring someone along to the results appointment.

I was not sure who I was going to bring along to the results appointment. Most daughters would want to take their mum for support. At that point in time, my mum was still in denial. As far as she was concerned she did not have Huntington's even though she was definitely showing symptoms. I remember having conversations with her about me getting tested. She did not understand why I wanted to know. She would never want to know that kind of information. I knew that there was no way I could rely on my mum for such support.

So I went to the one person in my life that I have always been able to rely on – my dad. He was more than willing to come along to the results appointment and provide support.

It took several months for my results to be ready. The time went by quickly. I remember Christmas was drawing near. Dad came to my house and we headed to the clinic. Dad and I were sitting in a room at a table face-to-face with a doctor and a nurse. I was handed a piece of paper confirming that I had Huntington's Disease. The piece of paper also confirmed that my mum had it. I remember feeling really sad for my dad. He was watching his wife and the mother of his children go through the struggles of this disease and would also eventually see his only daughter go through it.

I left the clinic with mixed emotions. I was feeling sad for my family. I saw my life expectancy decrease by at least twenty years in moments. I was angry at the world. I did not deserve this. I wondered why someone like me had been cursed with such an evil disease.

I needed to talk to someone about having Huntington's and about my mixed emotions. I needed to talk about my family and about my life. So I took myself to counselling. The counselling was amazing. I went to weekly counselling sessions for about four months. It helped me clear my head and deal with my mixed emotions by talking things through. I realised it was ok for me to have a family, to be married, to live my own life and to follow my dreams. Having this disease should not stop me from living my life.

I built the courage up to tell a few of my close friends in the USA about my diagnosis. They all freaked out. They did not want to know and were upset with the news. I still keep in touch with them. None of our conversations are about the disease or about me having the disease. That is ok with me.

My mum recently admitted to me that she does have Huntington's and that she is seeking medical advice. Hurray! This was a big step for my mum to take. I am really proud of her for trying to deal with her denial, facing the truth, sharing it with me and for seeking medical advice. My mum has a strong dislike of doctors.

My mum still calls me on a regular basis. Occasionally these calls occur some time in the middle of the night. I don't think that she has got a good grip on the time difference between our two countries and I really don't think she ever will, to tell you the truth. I am happy to receive the calls because I know that as time continues these phone calls will decrease and that there will be a point when there will be no more phone calls.

The most special thing my mum does for me is send me flowers each year on my birthday. She has been doing this since I was at university. The flowers no longer arrive on my actual birthday. They just arrive somewhere around that day. They make me feel so special. I know that one day there will not be any more flowers from Mum.

I do not hold anything against my mum for passing this disease on to me. Having Huntington's is a part of who I am.

I should probably mention that I am a healthy vibrant young woman with no signs or symptoms of Huntington's Disease. I do occasionally stumble over words and forget things. I have been told by doctors that these are normal things people do and that they are not associated with the disease at this point in my life. They also told me that it would be normal for me to notice these things more after being diagnosed. They were right. I have become more aware of my stumbles and forgetfulness. After each occurrence I actually have to remind myself that these are normal and have absolutely nothing to do with the disease.

I do have my fears. I would be lying if I said that I didn't. The funny thing is that I don't have a fear of the process of dying or of death itself.

I am afraid that the extraordinary person that I am will change once the symptoms of the disease start. I am afraid of losing me. I like who I am and I don't particularly care to lose myself.

I am afraid of being alone. I am afraid of never finding someone who wants to spend the rest of their life with me. I am afraid of never finding someone who will be by my side through whatever may come and love me forever. I know that there is a chance that my symptoms will never have an onset but there is also the chance that they will. Who is going to want to be with me when I start to change? When I start to lose me?

I have made an amazing group of friends here in the wonderful Land of Oz. I finally built up the courage to tell them that I had Huntington's and to my surprise none of them freaked out on me. There was curiosity as to what it was, the impact that having this disease was having on me and what impact it would have on me in the future. They are my support system. When I have a down day they are the ones who come over to hang out with me or call to see how I am doing. They make me feel better. They are supportive, fun, beautiful, accepting, honest and giving people. Each and every one of them is truly amazing and extraordinary.

I lived an ordinary life until I was 28 years old. I was never truly an active participant in the game called life. I was not living my life for me. I was not making the most out of it. I was living my life for everyone else and it was passing me by. That all changed once I was diagnosed.

I try every day to live my life to the fullest. Life is too short. Life needs to be lived. Every moment of it needs to be enjoyed. When I die I want to know that I have made the most out of my life, lived it to the fullest and lived it the way I wanted to.

I am committed to living an extraordinary life, living my life to the fullest, always being true to myself, giving back to the community, making a difference and living my life in a powerful way.