Living with HD

I vividly remember the first time my grandmother forgot who I was. I was about 8 or 9 I think, and we had just been visiting her at her nursing home. I sat down with her and said “Hi, Grandma!” She looked at me with a blank, polite expression and said, “And who are you?” It was like a knife to the heart, to be forgotten. I didn’t fully understand at the time what HD was, so it  was frightening and upsetting. How could she not know who I was? Now I understand that it was the disease, and I’m sure she would have remembered me if she could have, but at the time it made it difficult for me to visit her. It is one of the things I regret the most. 

I only saw her once or twice a year, so each time I saw her was drastically different and more alarming than the last time. The next time I saw her, she couldn’t feed herself. The time after that, she was in a wheelchair because her movements were so violent she couldn’t walk. I tried to give her a hug and a kiss, but the movements made us awkwardly knock heads. She had such powerful movements that they had to strap her to the bed at night or she would fling herself to the floor in her sleep. I didn’t really try to talk to her anymore, because she didn’t know who I was. The following time, she couldn’t talk anymore. The disease caused her to be unable to move her mouth and tongue to make speech. The last time I saw her at the nursing home, she was sitting at a cafeteria table. They had died her hair some horrendous shade of red. All I can remember is that she looked like a candle flame, with her flourescent orange-red hair flickering and bobbing around the table.

 It was hard to watch her be reduced to the silent, bobbing waif I saw at the nursing home. I remember when I was younger we would watch the ice skating events during the Olympics. She enjoyed the beautiful costumes and the grace of their sport. I used to play in her room all the time because it was so bright and sunny. I can still remember the way the sun would shine through the window, warming the whole carpet, and the way the room smelled, a distinctly sweet scent that I will always associate with her. Once, when I got scared during a movie, I ran to her room and we sat together watching ice skating on tv until it was over. She always wanted to make me happy. She was a wonderful, warm, and caring person, so when Huntington’s robbed her of her strength and independence, it was hard to cope with. 

Having been through HD once already, I now have a better grasp of the causes and effects, but that doesn’t make it any less challenging. I didn’t have the strength to be there for my grandmother after she became affected; I have to have the strength to be there for my mom. I can’t run away and hide from it again. I have to be there for her while we still have the time, because one day, we won’t have that anymore. HD in one way, can almost be a blessing. It is much harder to take things for granted when you know they will be taken away. It is easier to be thankful for the small things, like being able to go for a walk together through the park, or having a normal conversation. It makes it easier to forgive wrongdoings and missteps. It forces you to look at the bigger picture of life. 

When I became pregnant with my first child, it was much earlier than I had really anticipated having children. But after thinking things through a little more, I am forever grateful that things happened the way they did. Now my children and I will both have the memory of being with her, of having fun together, and they will have something positive to remember her by. If life had gone the way I had planned, we would probably have never had any of that. Sometimes things happen for a reason. 

I tell you all of these things, not so that you will feel sorry for me or have sympathy. I say them so that you will understand that every family member in an HD family is affected by this disease; no matter how old or how young, it will leave its mark on you. It is what you do with it that counts. You can hide it in shame and fear, as many do now because there is such a lack of understanding for those suffering from these types of diseases in our hyper-judgemental society. Or you can take that mark and use it to help others. That is what I am choosing to do with mine. I want you to know what we are going through, so that others will understand, and so those suffering in silence from this can come forward knowing they are not alone. We kept this as a huge secret for years in my family; trust me, I understand what it is like to keep a secret like that. To feel like no one understands what you are going through. To feel alone and afraid. But we are not alone. There is a community of support for those with HD, and I am here to tell you it is going to be ok. It’s not going to be fun. It’s not going to be enjoyable. It’s going to take you way out of your comfort zone. But all of us are going through the same thing. There is always a silver lining to every thundercloud, you only need to look for it.