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....

My dad is dying of Huntington's Disease. My mom called a few weeks ago and told me that he decided this summer that he wants to go to Heaven. He's finished. He has fought for 18 years with this wretched disease. It is time for it to be ended.

B and I went home to see him and visit my mom this weekend. My sister and her husband came, too. I wanted it to be a real time for me. I wanted to be able to sit next to him and feel something for him. I wanted to connect with him. I wanted to make this visit meaningful, for him and for me.

I felt nothing. I was bored. I was impatient to leave. When it was finally time to go, I leaned down and gave him a quick hug (as much of a hug as you can give someone who is in a wheelchair) and said, "It was good to see you, dad." No, "I love you, have a good day." No, "I love you, we'll come see you again soon." Nope. Just, "It was good to see you, dad." My sister bent down and gave him a hug, and I suspect that she told him she loved him... he grabbed her sleeve and looked at her... and he started crying like a child. She teared up. She said, "We'll come back and see you just as soon as we can travel with the new baby. I love you, Dad." I stood there and watched. I felt guilty. I'm a horrible daughter. I know that I might not see him alive in this world again. And I couldn't even tell him that I love him. Do I love him? The last intense feelings I remeber having about him were fear, anger, and annoyance.

When I search my memories to find love, I remember being a child, and... finding his dirty movies in the basement..... standing in the hallway, watching him hit my mom while they were arguing..... being in the car while he was driving and being scared for my life.... lying in bed late at night listening to him shout at my mom.... I remember feeling sorry for my brother when dad would insist on driving him to his baseball practices. I remember watching dad smash plates on the ground when mom made something for dinner that he didn't want. I remember him throwing things at mom when she said something he didn't like. I remember sitting at the table while he told my sister she was fat.

Yelling. Throwing. Hitting. Poor Hygene. The Food Network, 24/7. Kicking the dog. Controlling the house. Everyone must be silent, but he can watch the TV at volume 30 at 1am.

These are my memories of this man who is my father. I'm told that he was a normal, funny, likable man once. I am so scared that I will turn into him.