So, my mom was diagnosed with Huntington’s Disease on Friday.
I feel like I should maybe keep this to myself. After all, it’s a deeply personal family issue. It feels like it should be a secret, but everything has changed and my biggest coping mechanism is writing. I’d also like to have everything documented not only for myself, but for my husband, family, friends, and anyone else out there who might be feeling the incredible range of emotions and sadness I suddenly seem to be consumed with.
I’m not great with voicing my emotions, my forte has always been writing. I think I’m pretty good at it. As far as stereotypes go my gender is pretty flamboyantly obvious, but talking about my emotions? Like with the whole using my vocal chords? Never my strong suite.
My dad called me with the news Friday, which I’m pretty sure was four months ago rather than four days. It really didn’t click at first. We knew my mom was sick, but she’s not sick, you know? She’s my mom. She gave my ruby slippers to wear when I was five years old and sewed my costume for my high school musical. She was always thin but had a thing for brownies and baked a batch at least once a month. When my brother and I were old enough to be little mobile candy fiends she took to hiding her chocolate where we couldn’t find it. But I moved out of my parent’s house at 19 to live at college and work full time, I found a boy and fell in love with him and we married three years later. I graduated college and found my career and I was busy. I was young and busy and that’s the lamest excuse anyone can give.
I could tell my mom was getting sick, but I didn’t comprehend it. She’s my mom. Ruby slippers. Costumes. Chocolate. You don’t always register your parents in the present tense, I think. You grow up and your relationship changes from authority figure to friend, but they’re still your parents. You still respect them, learn from them. My mom was getting sick and honestly I was too scared to ask what was wrong, or even suggest something might be off.
It all came to a head last month when my mom was really having a hard time actually getting around and speaking. My dad took her to the ER and later on called to tell me she had been admitted. The doctor was running tests and when I went to see her he said she shows signs of Huntington’s but he didn’t think that was the case, after all, she has no family history of the disease.
Thats where things seem to get murky. Huntington’s Disease is pretty cut and dry. If you have the gene then you will eventually develop the disease. HD doesn’t skip a generation, there are no carriers. You either have it or you don’t. Your kids have a 50/50 chance of inheriting the gene from you. If they inherit it they will develop the symptoms and eventually be diagnosed, if they do not inherit it then there is no danger of them passing it on, it has ended with them and their lucky genetic lottery win.
That being said, my mother’s parents showed no signs. My mother’s father (I always feel weird calling him my grandfather, as I’ve never met him) died when she was seventeen. He was older, late 50′s/early 60′s. He had a heart attack. My grandmother, who I was very close to, died when I was a freshman in college. My mom’s an only child and was very close to her mother. When the signs started showing that she had this terrible disease I thought she was depressed. My grandmother died of Pancreatic Cancer.
There were no signs in either parent, but one of them had it. Sometimes the disease doesn’t become obvious until later in life (I read a statistic that 10% show symptoms after 55). My mom was about 45.
So now we wait. My younger brother and I both decided we would rather know than be left in the dark wondering. I know it’s scary, but I couldn’t imagine going through life not knowing.
Not knowing is the hardest part. A week ago I was a different person. Justin and I were a different couple. We had just celebrated our fourth wedding anniversary in August and we had plans. We didn’t have anything concrete, but we still had the choice as to whether or not we would have kids. We still had a choice about waiting until we were older to do some of the globetrotting we talked about. We still had a choice about holding off on some things because a week ago we had time. We had plans. That might not be an option anymore.
I called the testing clinic yesterday morning and apparently in Pittsburgh they only test (and the counseling that goes with it) every second Wednesday of every month. October is most likely full so we’re looking at November or December before we can even get in to get tested, let alone results, which take about a month to get back.
I feel like time is suspended right now. I can’t move forward and obviously I can’t go back. I still can’t wrap my mind around any of it because this is something that happens to other people, strangers, it doesn’t happen to you or the people you love.
In light of that the support has been amazing. You really do find out who your friends are, and I’m lucky to have the best.
I don’t really know where the final part of 2013 will take us, but I’m ready to find out. Fingers crossed.