I have a nervous tick. Whenever I find that I get completely overwhelmed by life and feeling out of control, I like to stand on one foot for a period of time. On one hand, I find that it helps me remember to have balance life, how very zen and yoga of me; on the other hand, I probably look like a weird flamingo. I’ve been doing this for most of my adult life. Let’s ignore that I hold my neuroticism close and love to be a control freak.
I started my balancing game when I was at risk for Huntingtons Disease. I keep that game, because it’s hard to let go of old habits and if there was one sure fire test to make sure you didn’t have it, besides genetic markers, then standing on one foot and remaining upright is that test. It’s science.
Actually. If I am going to get real. Huntingtons Disease doesn’t leave you if you tested negative. No. It’s still there. In that nagging guilt that tells you you’re going to get a front row seat to watching your family members deteriorate mentally and physically, and you get to be the fan-fucking-tastic picture of health. Unless you’re a complete coward and completely shut yourself off from your family, then, I guess HD does leave you. I live in the in between of those extremes. I am away from my mom because my husbands job moves us around the country. I feel like an asshole that I don’t get to see her, and I feel like an asshole when I do. Watching the strongest person in your l life become the weakest, wow. Although, I want to note that she is physically weak, but she is still the strongest person I know, and will be the strongest person I EVER know.
I recently got my hands on Lisa Genova’s Inside the O’Briens. The novel follows Joe, the patriarch of the O’Brien clan and a Boston Cop, as he learns of his diagnosis and his mother’s illness, and the subsequent meaning that holds for his career, his marriage and his children. I love that Genova looks at every side of this disease. It’s interesting to get into Joe’s head and try to add that to my mother’s experience. She also looks at what it means to be a caretaker of a person with HD, as well as living at risk of the disease. The constant questioning of if “I have it or not” and “Can I have children or not” and “is it possible to have a long term relationship or not”. So far I am pleased with her writing here.
I haven’t been able to finish it yet. Mostly because I am on a post English Major reading detox, but I am slowly getting through it. This is a hard book to judge too. This family seems too close knit and too loving to feel real to me. They felt fake, too quick to forgive and forget and move on. It was like the Walton’s were put into this rough and tumble life. It’s only because my personal experience is just different. Huntington’s Disease tore my family apart. We were already a pretty fragile group of people though, but in the heat of the moment and not understanding that it was the disease talking, everyone was undoubtably hurt. We were a hot mess. I haven’t seen my closest cousin in years, and she lives close to my dad and sister. I haven’t heard from my uncles either, even the healthy one (the ones with HD get a pass, I doubt they are in the right state of mind to contact me). And I haven’t tried to get a hold of them, if we’re going to be honest. There are just some things that you don’t want to relive. We all carry the memory of pain and guilt. For us to build a relationship, there has to be the acceptance of these pains, and it’s difficult. Right now I am in a good place with accepting my mother, and her “abuses” caused by her disease, but that guilt that I wasn’t a better daughter lingers.
There are some foundational similarities, though, that Genova finds with people struggling with this disease must face.
First, she address the hard misunderstanding of Huntington’s Disease and Alcoholism. Many people, my mother (and grandmother) and uncles included, who have this disease were often marked as daytime alcoholics, due to the fact that it becomes impossible to think clearly and walk in a straight line. (That sounds way too simple, but it’s the basic test). We have to understand that the general public doesn’t know about HD and it’s easier to think, “that guy is drunk” than to ask questions and enter into an uncomfortable dialogue with someone struggling with the disease.
Genova also mentions the complete and pure rage that has potential with people who struggle with HD. How many times have I seen those eyes that seemed to look more like demonic possession in the heat of rage? I was emotionally blown over when she talks about the look in the eyes. It is something you have to experience personally, I guess. I tried to post something about it on my Facebook, and was met with some hurtful comments from old friends, who knew what I went through more or less. I became aware that some things might not make an impact on anyone unless they experienced it first hand.
Genova then explores the issue with finding out you’re At Risk for Huntington’s Disease. It’s an autosomal dominant gene, so the probability you’ll have the disease is 50-50. I appreciate how difficult it is to try to plan a life around that, and I appreciate those who decide to try to live a normal life anyway. Each decision is nuanced and personal, and it is so difficult to judge those who choose to try to lead a normal life. Especially if there isn’t a large support group for this person.
The thing I most appreciate about this book is that it sheds light on the struggles that my family went through. Ours might have been more dramatic, and we had no clue what we were doing in the moment, but it is also a reality for thousands of others. We need more coverage on HD. We need more funding for better treatment. We need more resources to families dealing with exactly what the O’Briens are going through. But the most important part of the novel is to show that we aren’t alone and that is huge with a disease that can make you feel isolated and misunderstood.
If you have some time this summer, check it out. Love it or leave it. It isn’t an amazing piece of literature, but it is important and foundational in getting people to understand how this disease works. While you do that, I will be over in the corner doing my tree pose.