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Originally published March 31, 2020. This personal essay reflects the author’s family experience at that time.
Every family has great and not-so-great things running through their DNA. In mine, the great includes fast metabolism, strong teeth, and thick hair. On the other hand, some of the not-so-great are skin issues, high blood pressure, and the most affecting one for my family: Huntington’s disease. My family is living with Huntington’s disease, a rare genetic disorder that affects the brain cells and damages the mental and physical abilities of those who have it.
Huntington’s disease can affect movement, thinking, and behavior. Involuntary movements are known as chorea; difficulties with memory and concentration can also occur. It is hereditary: each child of a parent with Huntington’s disease has a 50% chance of inheriting the gene change that causes it.
My grandmother María
When it comes to my family, my first memories of Huntington’s disease revolve around my grandmother María, who was my mother’s mom. She was a lovely lady who gave birth to ten kids, was a great cook, and would always have ample hugs for her sons, daughters, and grandkids.
Both she and one of her sisters, who I didn’t get to know that much, inherited the disease. I was too young to remember when she started to show symptoms of Huntington’s disease. Her behavior during the last and most critical stages of the disease was one of the few memories I have of her.
I have memories of María walking around the house that she and my grandfather, Juan, had shared for years. I can still see her shaky movements and hear her asking me the same questions over and over again. On good days, she would repeat, several times, the story of how she and grandpa met, and how they built the house from the ground up.
On bad days, she would have these horrible mood changes, raising her voice at different members of the family, cursing, or forgetting who she was talking to. A young teenager at the time, I recall feeling so uncomfortable (and frankly, annoyed) whenever she would scream at my mom. I couldn’t understand how my grandma could act like two completely different people, like Dr. Jekyll and Mr. Hyde, even when medicated, even on the same day.
As time went on, she kept losing weight, despite her insatiable appetite. Her mood swings became more drastic and increased in frequency. It took some research for me to understand what she was dealing with because my family didn’t talk about it much with us younger ones.
As I learned more about what my grandmother was living with, I felt selfish and immature. Although I tried my best to make amends, I just didn’t have the patience. I would sit next to her, listening to whatever she had to say. I held her unsteady hand and told her I loved her. Sadly, I didn’t get as much time with her as I would have liked. I moved to a different city when I was a junior in high school, and to another one when I started college.
A midnight call
At the end of August in my first year at college, my aunt called me in the middle of the night. I knew it wasn’t good news. She told me that my grandma passed away after experiencing complications with the levels of sugar in her blood. I had to travel home the next morning to attend her funeral. She was the first person I knew in my family to die. I hadn’t lost anyone dear to me before, and I didn’t feel like I had enough time to process it. I was in shock, wanting to cry, but for some reason, I couldn’t.
Even today, I still don’t know why.
You would have thought that after my grandma died, my family would be more open to discussing Huntington’s disease and the possibility of any of us having it. But no, that wasn’t the case. It was the silent unspoken curse that haunted our family. It was as if we were too scared to find out whether we would have it in the future or not, so we just swept it under the rug and kept ourselves as busy as possible. I wonder how many other families with Huntington’s disease experienced the same emotions and reactions.
However, Huntington’s disease had different plans, and other members of the family, as my uncle pointed out, were starting to show symptoms. The first one was my aunt, Mary. At 43, she began to lose control of the movement in her hands, eyebrows, and legs. For some reason, the disease developed faster on the physical side, regardless of medication and help, but fortunately, she remains mentally well.
If my mom has Huntington’s disease, will I get it?
After Aunt Mary was diagnosed, I did more research on what it meant for me and my family. Increasingly, I started looking for symptoms in my other aunts and uncles, as well as my brothers, cousins, and even myself. I am not a doctor, but I noticed what I feared were early symptoms in the very last person I expected: my mom. I knew there was a chance she could have Huntington’s disease. But she is my mom. My mom doesn’t get sick.
I saw the beginnings of the all too familiar involuntary movements in her eyebrows, legs, and hands. The fear that my mom might have Huntington’s disease rocked me to my core. How could I possibly tell her that she may have Huntington’s disease without alarming her? Was it even my role as her son to say anything? The disease had progressed so fast in Aunt Mary up to that point that I knew she wouldn’t handle it well. I still need to learn more about my mother’s relationship with Huntington’s disease. I still need to know if my mom has Huntington’s disease.
Although I am convinced my mom has Huntington’s disease, is it my place to tell her? To ask her? Surely she must know, but like the rest of my family, is she too afraid to admit what is happening? And if my mom has Huntington’s disease, will I get it? What are we all afraid of? The truth?
