To Test or Not To Test

I always thought I'd never get tested until I started showing symptoms. I told everyone who asked about it just that. "Why not?" they'd ask, "Wouldn't it be better just to know one way or the other - that you have it, or if you don't? Odds are really in your favour, aren't they?" First of all, odds are not in my favour. There is a 50% chance that I carry the deformed gene that is Huntington's. 50%. That means that there is a 50% chance that I don't carry the gene. It may seem like there are a lot of percentages in my favour, but would you go to sleep soundly tonight if you were told that there was a 50% chance that you'd be brutally murdered in your sleep? 50% all of a sudden doesn't seem very high.

Wouldn't it be better to know? I didn't think so. What's the point of knowing? A ridiculously high percentage of people who are tested for Huntington's go into pretty severe depression no matter what their diagnosis. There is currently no cure. Yes, huge leaps have been made in the past 10 years. However, there is no cure. There are medications that can help manage symptoms but if I showed symptoms, I would be tested. If I found out that I didn't have the gene, what a relief. B and I could have children in peace, I could sleep at night knowing that a horrible disease would not take control of me bit by bit, like a marionette on a string, using my hands to slap the faces of the friends I love so dearly.

My dad, as I knew him, was not a pleasant person. The things he did. The things he said. The way he treated mom. I have watched him as he alienated every single person in his life. I woke up night after night in elementary school, listening to the shouts in the livingroom. "I don't care if that's what you want, Jake - you are not the only person in this family! If you talk about spending our savings - our grocery money, our gas money, our mortgage money - on a new computer ONE MORE TIME, I will walk out of this house and never come back!" My biggest fear was that he would chase mom away and I would have only him for the rest of my life. I watched him as he entered the clumsy stage, the angry stage, the paranoid stage, the selfish and stubborn stage, the wheelchair stage, the feeding tube stage.

If I find out that I have HD, I find out that I am him. I find out that my fate is sealed, is unalterable. Nothing that I say or do can change who I will become. What a terrifying thought.

However, shortly before I started this blog I received an email from my older brother, S. S had been doing some thinking/talking/researching with a nutritionist who suggested that changes in diet/lifestyle can possibly alter the severity and onset of diseases like HD and Parkinson's. Of course, mom has been telling us this for ages and has been force feeding us Omega3 pills for the past few years but it just clicked in my head last night that perhaps there was a reason to be tested. Perhaps, if I got tested and changed the way that I live my life, perhaps I might get a few more months of being "me" with B and any potential children. Also, since the news of gene therapy and the possibilities surrounding diseases such as HD, B and I have been occasionally discussing IVF with gene therapy. That's a whole other can of worms that I'm not going to open now, but if I knew that I had HD, it might be an option.

I'm not sure, but I am beginning to think that there may be life after a positive test result. I am absolutely scared to death of what a positive test result will do to B. He says that he would rather know whether or not I carry the gene as he's the planning sort, but I am scared that he'll draw away from me if that's the case. He has committed to making the lifestyle changes with me, though, even down to quitting smoking and drinking (I don't smoke, so it's huge on his part) - if it means that there's a chance that he'll get to keep me for a little while longer. I believe that he means it. I don't believe that he exactly knows what the horror of HD means.

Interestingly enough, I feel as though getting tested would simply confirm my fears: that I carry the gene. There are very few scenarios that happen in my head in which I get to go, free and clear....