On the last day of Huntington’s Disease Awareness Month, I want to share a story about finding out about HD, but I don’t really remember a time where I wasn’t aware of the hereditary disease in my family. I knew my grandmother was sick, and then I knew my dad was sick, and then I knew me or my siblings could have it. I don’t know how old I was when I found out, but being the youngest, I always found out about stuff way earlier than I was supposed to (like Santa and sex). I remember my mom telling us that the doctors said that by the time we were old enough to have it, the drugs would be so good that it wouldn’t even matter. I remember thinking that was bullshit.
We were told there was a genetic test that we could take to find out if we had the gene, but you had to be 18. I didn’t find out until later that about 95% of people decide NOT to take the test (or that a large number of people commit suicide after testing positive). As identical twins, Kim and Kelly posed a unique problem, as they did not agree on whether to get tested (one of EVERYTHING they didn’t agree on). Kim felt like she had to know, and Kelly didn’t want to. I think that Kim pretended to be Kelly on the phone and faked her signature in order to get her results. Because she ended up being negative, maybe they didn’t care as much and decided to share the good news. We had a lot of discussions about survivor’s guilt after that, and they said they would take care of Tracy and me if we had it.
Tracy and I didn’t agree on getting tested. I really wanted to know because I felt like it would help me plan for the future. I wanted Tracy to get tested before I did, because if I tested negative, I worried how much pressure that would put on her. Her odds would not have changed (still 50/50), but the feeling that there’s no way none of us would get it would be stronger. I would have made a deal with the devil to be the only one that got it, but unfortunately, that’s not a real thing. I delayed for several years and at 30, I finally decided to get tested. I was positive.
I remember calling Kim one night a few weeks later pretty hysterical, and I was trying to explain that now no one would take care of Tracy if she had it, because I wouldn’t be able to. Kim said she would take care of her even if she didn’t like her. This calmed me down slightly. Tracy surprised us all shortly after by deciding to get tested in secret. I was glad she did it that way because I was obviously stressed about her being positive, and they make you wait several months for the results. She told Kim on her birthday that she didn’t have it, and we were all extremely relieved.
When they say that Huntington’s affects generations of families, this is what they mean by it. You watch it affect your grandparent, your parent, your siblings, and maybe your kids.