I need to get tested.

For the past two weeks, I have been looking at my hands, holding my hands, typing with my hands. I have come to the same conclusion every day: my hands are not my own. This is different from the every day thought - I can't talk today - I wonder if I have HD? I shouldn't have tripped over that little bump in the sidewalk - do I have HD?

It's strange. I still feel life pulsing through them, and I can still completely control them - but there seems to be some unnamable element that makes them not mine. It's a completely terrifying feeling. If it's not HD, I need to go see the doctor about what it is.

If it is HD, I never thought it would come this early. This changes every thing. How can I think about having a baby if I'm already showing symptoms at 26? It would be wrong to do that to DH, to make him care for me and a young child, and it would be wrong to do that to a child - I had no problem having children if I tested positive because I could at least give them 10 years of love and life - and if I can't do that? What am I here for, then? As cliche and anti-feminist as it is, my one desire and goal in life has been to become a stay at home mom, taking care of my family.

I know these are a lot of speculations. And it's a huge leap. But there is something in my hands that is scaring me to pieces right now.

It is so hard to remember sometimes that my whole life is in His hands.

To know or not to know?

This past winter, I was quite sure that I was going to begin the process to get tested. I spoke with my family doctor (to let her know what I’m considering and find out whether or not I can count on her to learn about this disease and its challenges and treatments with me), and I contacted the Huntington Society office in our area to get a referral for the genetic counseling. Shortly after, my doctor went on Mat leave and has notified us that she will not be returning to her practice. The Society never returned my call or email.

I let the idea gently slip from my mind, as it is much easier to avoid the topic in my head. B asks now and again if I’ve made any progress, he thinks that he’s anxious to go through the testing with me. It’s just so much work to gear up for it again in my head! Am I really ok with finding out right now? Will B still want to have children with me if I test positive? If so, should we have children right away so that I can spend more time with our children as me and not as a pHD? Should we consider IVF in order to stop the transmission of the gene in our line? Is IVF ethical if I don’t believe that abortion is right?

So many questions. So little answers.

I have decided, however, that in my life I will rarely turn down the chance to try something new - at least once. Last year I did a free fall from the height of 152’ which terrified the living daylights out of me. You see, I am a person who is rather afraid of heights. And of falling off things. You might be able to see how this is a bad combination for me. This Saturday, B and I are going to start wind surfing lessons. In October or November, we’ll get our Scuba certification. We’re hoping that we can put some of these adventure sports to use on our trip to South America at Christmas! We don’t have a lot of money to spare, and we do still have a significant debt load from our undergrad days, so it’s hard for me to justify spending the money on these lessons. However, if it turns out I’m gene positive, I don’t want to have missed out on the chance to do these things while I was still physically able and mentally willing to do them.

It's been a while

So, it's been a while since I've been back. Every once in a while, I like to deny the whole situation, so writing about it doesn't help with the denial part.

In the past four months, my dad's condition has gone to the brink and come back again. He was losing weight quickly and against all odds. He had signed a DNR many years ago that would have prevented the use of a feeding tube, so we all thought, "This is IT." Well, last month, shortly after his 60th birthday, he started gaining weight again. What a yo-yo.

Friends and aquaintences make comments like, "Well, that's great! It's good to hear that he's improving!" But I ask you this: Is it? This is a non-reversable disease, people. The man has been fighting for 20 years! He has made his peace some time ago with leaving this earth - in fact, he wants to go. Why draw this out for so long? Any improvement that he makes marks another day, week, or month that he will have to go through again to reverse the improvement. This may sound callous, but it is so hard to see him incapacitated the way he is, unable to speak, unable to make any controlled movements, just sitting there with his head lolling about as he coughs and sputters.

For his birthday, I contacted many of his old friends from college and his early career days. I asked them to send me an email or a video message to him, which my husband compiled onto a DVD. It's neat that he can watch it over and over again, but I think that it was an even better gift for my siblings and myself. There are not many people left in this world who remember my dad as the person that he was, not the stranger that this disease has made him into. It was good to hear people talking about what kind of a man he was - what he did well, what they used to laugh at him for, how he treated those around him. It helps me fight the biased image I have of him in my head.

Another One Gone

My uncle died this week of Huntington's-related causes. He was younger than my dad, and was diagnosed 10 years after my dad was. It's strange how differently each person is affected by it. My grandmother passed away when I was in eighth grade. She was in her 70's and lived for quite some time with the symptoms (no one knows how long it was or when she started displaying symptoms, she was living on her own and testing was not an option until she was 60 years old).

My dad's family was not large, and we have no connection to his extended family (they're all back in Holland). As it is, we barely have any connection with his immediate family. He is the oldest of four siblings. The second one has been tested and is free and clear, which means that his two children are fine. The third is the uncle that just died - he was unmarried and lived alone. The fourth is my Aunt, who refuses to be tested, and her five children live in uncertainty.

Huntington's has claimed my grandmother, my uncle, and soon, my father. Every day, I pray that that's where it stops in our family. Miracles can happen.

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.