Sometimes I feel cheated

“There are seven children in my family, and I am the youngest. When I was younger and living at home, I think that me and my next oldest brother experienced the worst of my father’s behaviour. Having to deal with the mood swings is a very difficult thing to do, as well as watching somebody slowly rot away to nothing. I never had the same experiences as my older siblings. They remember a father who took them camping, who took them for family holidays, and all the normal father stuff. I was taking care of my father who was sick and could not do all the fatherly things one would expect of him. In fact, most of the time, I had to watch over him to make sure that he was safe: safe from choking on his own food; or safe from falling off his chair; or safe walking down stairs. I had to cook for him and help feed him. It is not easy work, and I realized that I would never want to go through the same experiences in my life. And yet that is what faces me now. I too must feel the pain and the suffering that my father did.

“I’ve gone from viewing myself as primarily ‘well’ to ‘not well.’ I wonder, and I have concern, that others would view me the same way if I told them.”

My father was about 40 when the doctors found out what was wrong with him. He had already had seven kids and on his way to having ten grandchildren. He was completely unaware of what was happening to him. All of a sudden his life changed and there was nothing he could do about it. It was too late to do all the things that he might of wanted to do. That’s when I decided that I wanted to know what was going to happen to me ahead of time. I wanted to make sure that if I tested positive for the disease that I would change my life goals accordingly, and try to live the best I can.

I waited until I was 25 and then I got myself tested for Huntington’s. Since I left home when I was 18, I worked really hard at putting what could be ahead for me way back in my mind. I went to university and college and graduated. But as I got older, I began to think more about longer term goals, and of course you would have to think about Huntington’s too. When I began the testing program I was prepared for being tested positive for the gene. It is difficult to go through your regular workday as if it’s just another day. But, it is far from another day. I think that having a handful of friends and family that know you are going to be tested can be helpful when you need to talk about how you are feeling. Going through the sessions with the counsellors and the psychiatrist really helps you vocalize your feelings for the test. This also can strengthen or weaken your ambition to continue with the test. Waiting is one of my least favourite things to do. From the last part of the test, when you say that you are going to get the blood work done, until the results day is a very long wait. It can preoccupy your thoughts a lot. But the day of the results is a very emotional day. When I heard my results were positive I never cried but I was completely numb. Some how I waited all these years for this answer and now it was true.

As time goes by the reality begins to sink in as to what this means for my life. Now there is not a day that goes by that I don’t think of how I feel. Sometimes I feel cheated out of a fuller, richer life. It hurts when you hear your friends talk about what we would be like when we retire and you know that it won’t be happening for you. I also feel sad when I think about getting a mortgage for a house and realize that I won’t be healthy or living at home at the end of the 25 year mortgage. Some days I can get depressed quite easily, and it can stay for a few days each time. Certainly all the things like your job, financial problems (especially planning for the future), family and all the other stuff sure can affect the way that you feel. I try as best as I can to bring myself out of it, but it is not always easy. Certainly having people to talk to who understand your feelings is the best thing to have.

“I wanted to make sure that if I tested positive for the disease that I would change my life goals accordingly, and try to live the best I can.”

I have gone on more holidays and made my goal to enjoy these days that I have now. I am not sure how long I have before I get sick. That scares me a lot. Am I going to have ten years, five years or less? It’s hard to say. The other hard thing is that I just started a new job, so I worry about the right time to tell them. Do I wait until it is very noticeable, or do I tell them ahead of time and risk my job? For now, I think that I will just leave it for a later time.

Having someone special in your life can really help when you go through the testing. It helps to talk to them first to understand why you want the test to be done and how it will affect your relationship. This can also help them understand what the future may hold for the both of you. You can support one another when things start to get difficult, and that makes a big difference.”