As most people who go through the process, I went in for the genetic counseling, weighing the pros and cons of getting tested for Huntington's Disease. I had known since I was 15 the disease ran in my family and that I was at risk. Almost five years later, I had the opportunity to test. I had been thinking about it, wanted to do it, but never had the time. I married young and married military. A year after we were married and finally settled at our new duty station, I was ready.
Looking back, I had a great genetic counselor, though at the time I was quite upset with her. She seemed so negative about it all, saying things like "There is no cure or treatment, so really no reason to test unless you feel like it will really help you", or "Most people who test positive tend to feel very depressed after knowing the results and wish they hadn't tested". I understand now that she was trying to make sure that I was really prepared for this. At the time, all I could was cry. When she asked why I was crying, I told her it was because it's as if she was telling me I COULDN'T test, discouraging me from something I had been planning on doing for years. Of course, that was not the case as I now know, but at the time, what else could I think when all I was hearing was the bad? Later, I would realize how grateful I am that she did what she did
I made the decision to go ahead and test, my husband supporting me 100%, always there. He came with me to each portion of the genetic testing process and held me while I cried waiting for the results those 3 agonizing weeks, questioning myself every other day. He and my grandmother were my strength, my rocks. But with my grandmother 800 miles away in North Carolina, my husband is the one I leaned on the most, and through it all he was wonderful.
Now when I say that the three weeks between getting my blood drawn and getting my results were agonizing, I mean it. I believe those were the hardest three weeks of my life. Every day, it was a battle of thoughts going through my head, making it hard to sleep. One minute I would think "I can do this, everything will be fine…", the next minute it would be "Well, what if I'm positive and my husband can't handle this and leaves me and I'm all alone, then what will I do?", then "Do I really want him to have to be put through this? Is it really fair to him?", or "What about kids? We wanted kids…could we have them if I test positive? Would we want to do that to a kid?" and on and on it goes. I had an internal battle going on, wondering if I was doing the right thing. In my heart, I knew I was. My mind was playing tricks on me, and it still does some days.
How do you deal with such an internal battle? You are literally driving yourself crazy, an emotional wreck, getting no sleep because your mind is racing, and scared that at the moment, you don't know what your future holds. I can say that in all honestly, I really believed I was going to test positive. In those 3 weeks, I convinced myself that I would test positive so I could prepare myself for a positive result. If I already thought it, I would be able to handle getting the results better, right? Wrong. If only it were that easy.
The day finally came to get my results. For weeks, I had had this raging battle going on inside me; for weeks, I had my grandmother telling me "The Lord won't give you more than you can handle. You'll be okay.", and my husband telling me "No matter what, we'll deal with this together". (I'm telling you, he was a saint those 3 weeks). Now it was time to find out what my future held.
My husband and I got into the car to make the 40 minute drive. My chest felt like it had a huge weight on it that I couldn't lift, I couldn't breathe and I was fidgeting. My husband was holding my hand, squeezing it every now and then to let me know it was okay, making idle conversation to keep my mind off of it. How you can keep your mind off of such a thing at such a time, I don't know, but he was trying his best to keep me calm.
We walked into the genetic counselor's office. She greeted me and had me sit down and without any hesitation, she said "You tested positive. Your CAG is 43.". Time stopped for a moment. No matter how much you prepare yourself for a positive result, you're never prepared enough. There was that feeling of shock, the moment of crying because I tested positive, but for the most part I felt relief. Yes, relief; relief that I finally knew, I was no longer questioning myself. Relief that the process was over and now I could focus on what I needed to do, even with a positive result. I had a plan now. It was no longer a question of if I had it, but a fact that I was going to get it someday, and I was okay with that, because as long as I knew what I was facing, I could fight it. Sure, there's not a cure, there are no definitive treatments, but by God, I would do whatever I had to to fight it. My husband grabbed my hand, hugged me and told me it was all going to be okay, that we would deal with it together, and I knew it would be okay…maybe not right away, but certainly at some point it would be okay.
We talked with the genetic counselor a little while longer and then we left. I made my phone calls to my family. I e-mailed all my online support group friends to let them know. I moved on…not really.
For the next year, my life would become stressful and I would hit a very low point in my life. Again, no matter how prepared you are for such a thing, you are never prepared enough, and you will have a period of depression afterwards no matter how strong of a person you are. That's okay. That's expected. That's part of being human. I understand that now.
Probably the hardest part for me after being tested was knowing for sure that my father had HD. He didn't want to know the results of my testing because he didn't want to know if he had HD or not. I didn't tell him. Unfortunately, he found out anyway and fought it, trying to stay in denial as long as possible. I fought to help him, but I was so far away there was nothing I could do and he didn't want my help. I lost my purpose and my motivation to battle the disease. I got depressed and made myself sick.
During this time, I had also gotten in touch with my grandfather who had HD and learned that he was not doing so well out in Seattle. This did not help my depression whatsoever. I was at a total loss for the most part, trying to fight the HD for myself and for my father and losing my motivation to do so. There is no other way to put it: Life sucked. I started seeing a therapist who was a tremendous help to me and would later be the inspiration for what I call my "fundraising phrase".
At the beginning of 2007, I found out that my grandfather was on a feeding tube. At this point, no one else in my family had much contact with him, choosing to remain in denial as long as possible. I took a trip out to Seattle to see my grandfather, wanting to give him some support and love that he deserved and had not gotten. He had been by himself for too long, in my opinion, and it was time to change that. When I walked into his room at the nursing home, I saw the frame of an old man who seemed to the point of death. Surely, that wasn't my grandfather. I remember him as a mean old man (due to his HD, of course), nothing ever getting in his way. Yet here he was, lying in his bed so still I wondered if he was alive. I called his name and he opened his eyes. The HD had taken its toll. He looked ready to give up. I sat by his bed for hours. I cried and talked to him, brought him presents, showed him a scrapbook I had made him. All he said the whole time I was there was, "Thank you". When my time was up, I gave him a kiss on the cheek and told him I would be back the next day and made the long trip back to my hotel room.
It's never easy seeing what you could be faced with in the future, but I dealt with it. This wasn't about me, it was about him, so I put my feelings aside. The next day, I returned to see that my grandfather had more life in him; he was more talkative, more alert. I even managed to talk him into letting me take a few photos and get him in a wheelchair, something he had refused to do in months. We sat in the lobby area of the nursing home while I showed him the scrapbook I had made again. He looked at me and worked to talk, finally getting out these words: "Get me out of here!". Yep, that's my grandfather, all right. He had some of his old fight back in him. Of course, he was too sick at this point for me to be able to move him back to the East Coast, but I would if I could have.
Before I left that night, my last night there, I gave him a kiss on the cheek and told him that I had to go home now, but I would be back again sometime soon. I told him I loved him and without hesitation, he said "I love you, too". That was such an amazing feeling, hearing that from him. I hadn't heard it before, not from him, and it was such a blessing. I finally felt like I was getting my purpose in life back, my motivation to fight this disease. He helped me with that.
That visit changed everything. My family saw the photos I had taken and went out to see my grandfather as soon as they could. They forgave his past transgressions, realizing now it was due to the disease, not the man. Unfortunately, I would not get the chance to make it out to see him one last time, but at least I know he got to see his children one last time, he got that support and love he so needed in his last months of life.
After my visit with my grandfather, I found my hope for Huntington's Disease in the form of a woman named Susan Mcgann. She called me one evening asking if I would like to help her with some fundraisers to raise money for a cure for HD. I jumped at the opportunity, telling her I had been thinking of some fundraisers myself and would like to do a walk-a-thon, could I go ahead and plan it? She was all for it, and that night we had a date set for a walk-a-thon in 6 weeks. Yes, I had found my motivation, my hope, my passion in life. I was back and ready to face HD head on again. And I've been doing it ever since.
I say all this to give you an idea of not only what it's like to go through the testing process, but what it can be like after testing as well. The process is hard to deal with. There will be tears and depression, anxiety, and doubt. You'll question yourself and obsess to the point that you think for sure you have the symptoms when it may just be your brain tricking you. But in the end, even without a cure or a definitive treatment, there is hope. You learn to appreciate your time and ability to do things. You learn that staying healthy and as stress-free as possible is the best way to deal with any disorder or disease. You find happiness in your family and friends. And you find a community, the HD community, that is so awesome and close it's amazing. And thanks to that community, to your friends, your family, and one very helpful therapist, that when life gives you lemons, you don't just make lemonade. You plant the seeds and make trees grow…