I first heard of Huntington’s Disease when I was 20 years old. A frantic, hysterical phone call from my mom told me that she was certain that she had an incurable, genetic disorder called HD that involved the slow deterioration of cognitive thinking, muscle coordination and the appearance of behavioral and psychiatric problems. The disease itself is a mutation of a certain gene that can be inherited by a parent. If your parent had HD, you have a 50/50 chance having the mutation. If you do not have the disease, your children or children’s children will never have it either. There is no cure. There are no proven treatments. The disease itself often starts out with subtle mood swings or twitching and progresses to a total loss of independence.
My mom had inherited the mutated gene from her mother who passed before I could remember her. Her brother, my uncle, also inherited the gene and became to experience symptoms 10 years before. His method of coping was ending his life. I had known about the suicide, but not the reasoning.
If you are reading this, you are probably asking yourself why I had never asked about how my grandmother died or why I had never heard any stories about her. Or, further, why I had never asked about the uncle that I had never really known. The answer is that I was a child. And children are selfish. And that’s okay. The secret was something that my parents kept from myself and my younger brother to shield us. The thought of my mother carrying around the secret of the disease that tore her family apart, makes me feel sick.
As she continued to cry through our phone conversation, the full story began to unfold and I understood that she had known for her whole adult life that this may also be the end for her. And, not only was she affected, but also my brother and I had a 50/50 chance of inheriting the gene. There was the other punch in the stomach.
The news itself put me into a fog that I couldn’t escape. I was a junior in college in Upstate New York. I was used to worrying about tests and internships and figuring out what I wanted to be when I grew up. I told only a few close friends and then tried as best as I could to go back to regular life.
A few months later, my parents drove to Mass General to see a specialist. The visit was followed by a happier phone call from my mom telling me that the specialist did a few tests and didn’t see any symptoms present! We were thrilled! I don’t remember the words that were said, but as I could remember it, we were certain that this meant that she didn’t have Huntington’s! And I was free to live my life and so was my brother. And that this scare was over.
Again, if you’re reading this, you’re probably asking yourself why I didn’t ask any questions about the testing itself. Or why I was so certain that this initial visit meant that this horror was over. In all reality, I can’t be sure if I so badly wanted HD to go away, that I created the idea that she didn’t have it or if she was the one who so badly wanted it out of her life that she was the one who was in denial. Truth be told, she didn’t get the genetic test at that visit. Even though, at the time, she was symptom free, that didn’t mean the disease wasn’t in her body.
A few years went by and I moved to Los Angeles to work in the entertainment industry. My life that my parents had fought so hard to give me came back. I bounced from job to job and felt under-appreciated and underpaid and all of the things that you are supposed to feel in your early twenties. I dated unsuccessfully and, when I wasn’t expecting it, fell in love with my now husband.
At the same time, my brother had gone away to college and left my parents alone in the house. The distance between them grew and they realized that, without us kids, they didn’t have much in common anymore. My mother, who had struggled with depression, fell into a deeper depression and withdrew from society. She had trouble sleeping. She became obsessive with researching politics and green lifestyles and hid herself in the internet. She had difficulty focusing on tasks, planning, organizing, prioritizing. She became impulsive and lashed out at the world through email. To her, everyone was out to get her and they were all in the wrong. And then, when confronted by my father, she decided that was the last straw and left him.
She landed at LAX the next day and in the following years she bounced from Arizona to Hawaii to Orange County and, finally, to San Diego. In my head, I rationalized her erratic behavior to that of a midlife crisis. After all, she spent her teenage years taking care of her own mother who was dying of HD. She never got the college experience or studied abroad or had the freedom like my brother and I did. She must have felt trapped. I thought that maybe this was her chance to explore and, as many people do when they go through a divorce, be selfish.
When she moved to Southern California, we got together every month or so. She had just come from living in Hawaii where she was eating healthy and exercising and had a glow that only Hawaii can give you. She looked great. Some visits she would be the same loving mom that I grew up with and some she was a different person.
In 2011, S and I got engaged and life turned upside-down as it does when you are planning a wedding. Engagement parties came and went. As I watched my mom interact with my new family and friends, it became more and more apparent that something was very wrong. She lost her balance sometimes, she walked with wide, awkward steps and had difficulty with eye contact. She had trouble with conversation. On the other hand, my mom has always been a bit shy around new people. I was too preoccupied (and deep down probably too scared) to admit out loud that anything was wrong. It was easier to be wrapped up in my own happiness and pretend that she was just a little clumsy.
The months leading up to our big New England island wedding were stressful. My mom seemed disinterested and distracted. Most visits began with tears because I got agitated when she was late. She would tell me she got lost or lost track of time and would tell me I was being too judgmental. I would tell her that I felt abandoned and felt she didn’t care about anyone but herself. And then she would cry because she loved me and my brother more than anything and couldn’t stand the thought that she was hurting us. We’d make up. And then it would start all over again.
Our wedding day came in July of 2012. Even though it was the hottest and most humid day of the summer, it was absolutely perfect. My husband is amazing and supportive and truly, my best friend. And I couldn’t be happier. The weekend was the first time since my parents split up that they saw each other. I will never be able to thank them enough for acting cordial and putting my feelings ahead of their own. They even held hands as they exited the ceremony (I never asked them to do that). Not only that, but my talented, incredible brother had graduated from an Ivy League school the month prior and rejected an incredible opportunity to teach in Korea in order to make sure he could be there for me on my wedding day. I will never feel more loved than I did then.
After the wedding, we adopted a little doggy and unpacked all of our gifts and life went back to normal. At the same time, my mom started sending manic emails accusing my dad and her family of horrific things. As we settled back in, the feeling that things didn’t seem right came back. The turning point was when one of my cousins called me concerned about my mom and brought up the possibility of Huntington’s Disease. I, after so many years, still believed the story that I had told myself that she was tested and she didn’t have the symptoms. But, in the days since that conversation, I looked closer at the symptoms of HD and, each day, saw how closely they aligned with the ways that my mom had changed in the last few years.
And then it clicked and I lost it.
Asking my mom to get the test was one of the scariest conversations I ever had to have. I told her that we had babies on our mind and I wanted to be sure that we were in the clear before we brought any at-risk babies into this world. That was true, but only part of the story. She was mature and understanding and immediately agreed to take the test. After she so easily agreed, I started doubting myself again. She seemed so rational and so sure she didn’t have HD that I started to believe it myself.
We scheduled the appointment and braced ourselves.