When you are 19 years-old, healthy and happy, the last thing you expect to hear is that you have a 50% chance of inheriting a degenerative brain disease. Most people think about inheriting money, or blue eyes. Not me. Well, yes, me too. But it’s kind of hard to think about, let alone appreciate that kind of inheritance, when you are thinking about the possibility of inheriting the crude ability of becoming a vegetable right around middle-age.
Huntington’s Disease. It’s like having Alzheimer’s, Multiple Sclerosis, Parkinson’s, psychological disorders, and depression (both clinically and because of loss of brain cells), all at the same time, and progressively getting worse over time. They call someone like me, with an affected parent, “at risk”. And not surprisingly, those who are at risk and get the genetic testing done to tell them whether or not they have a very likely chance or not of starting symptoms around middle age, and test positive, have a high rate of suicide. After seeing a parent go through the progressive brain disease, the last thing you can cope with and handle is the fact that you will end up the same way. It kind of makes you appreciate inheriting thick ankles, or moles, or small breasts.
It is difficult to explain what goes through your head when your father comes back from rigorous neurological and psychological testing to figure out what is wrong with him, only to come back and explain that he has a disease that will take over both his mind and body before he is 40, and that by the way, you also have a 50% chance of inheriting it from him. Fifty percent. That’s like flipping a coin, and bam! You have Huntington’s Disease.
Surprisingly it wasn’t the outward appearance of the disease that scared us so much in my dad. He would have uncontrollable “chorea” movements, or his limbs would lash out and then become rigid for a while, and he would eventually have to use a cane to walk. But that was unnervingly natural and understandable. What we weren’t prepared for was the loss of his inhibitions, or his ability to comprehend consequences, and basic right and wrong. He did things that we never would have imagined that our virtuous, honorable, loving and kind father could have done. He was a completely different person, let alone the father who had been my knight in shining armor. It was both shocking and emotionally overwhelming to comprehend that this was our new reality, the whole while the very real possibility of me becoming the same anomaly in the future heavy on my mind.
I think that ignorance saved me at first. I didn’t quite understand the magnitude of my situation and what it meant for my future. Not to mention my biological brother and sister and what it could mean for them as well. But all of the sudden I started wondering if it was worth it to continue paying for my college education, if I should get married and have children – possibly passing it on to them. I wondered if I was taking enough pictures and writing in my journal enough to remember my memories that could be taken from me. I wondered if every twitch of my muscles was the start of a soon to be devastating decline in my muscle control or if every angry outburst was the beginning of many uncontrollable future ones. At nineteen, at the point where I was just starting to figure out my life and what to do with it, I became frozen in a terrifying land of “what if’s”.
And of course you expect that you will be able to handle things. Everything would be okay. You have your faith, your family, and your friends. But then the fear that came, only after watching my dad’s symptoms increase exponentially, was disconcerting. That is when reality hit hard.
Why me, right? Why my dad, my family? I was not strong enough to fight this let alone fight it well. I didn’t know how to become that pillar of strength my mom needed, my siblings needed, my soon to be fiancé needed. Not to mention my 5 younger adopted siblings, 3 of which have disabilities and challenges of their own to face every day. How was I going to overcome the distressing chill of despair that was snaking its way around my heart and my consciousness? How does one come to terms with the fact that their life could be cut short? But then knowing that even before that, their quality of life will decrease continuously until their dying brain can no longer keep them alive. And all of this while oblivious to their loved one’s sacrifices in caring for them, and heartache over their hurtful and flippant behavior. Suddenly I felt like I was in a bad, sad ending, drama movie.
So the next issue was whether or not to be tested. But does anyone ever really want to know that they have a ticking time bomb inside their head that will go off at an unknown time in the prime of their life? What kind of life would that be? One of constant worry and anxiety? But on the other hand, knowing that you don’t have it would bring peace and relief. But just like that coin, it could land on heads, and then knowing you do have it and symptoms will come, would probably be unbearable to live with. With marriage and children in the near future, would I change my life decisions if I knew that I had it?
The short answer is no. The long answer, in all honesty, was more like a yes. I’d like to think that it wouldn’t affect my life decisions to that extent, but when it really came down to it, I knew that it would. Besides, it would be irresponsible for me to not take it into consideration, wouldn’t it? Could I live with myself knowing that my future husband not only had to care for me, but also our child or children if we all had Huntington’s Disease? Could I live with myself knowing that I cursed my child with the same foreboding fate by bringing him into this world knowing that just a flip of a coin could determine that he would have this devastating disease too? I was embarrassed to realize that when faced with an impossible decision, selfishness won out. I had to know. I had to have that knowledge that I convinced myself would give me power or some semblance of control in this sordid situation. But as it turns out, genetics testing was just the beginning in this adventure we call life.
I can’t explain the wave of deliverance that washed over me when my brother and sister and I all tested negative. Ironically, we had beaten the coin toss odds, the three of us. For some reason we were spared that one hardship in this journey. Now I find myself asking, “why me”? Why was I spared, and not my dad? I mean, isn’t it enough that he has hemophilia (inherited from his mom)? Why did he also have to inherit Huntington’s Disease from his dad? I’m not sure when, but eventually I also had to come to terms with the fact that yes, it’s okay that I don’t have Huntington’s Disease.
What I’ve learned is that my family was given this experience in life for some reason, and we needed to embrace it for what it was: an unfortunate circumstance that could bring us together, or pull us apart - an opportunity to see what our true characters are made of. No one wants to live with “what if’s,” but I can tell you most assuredly, that knowledge can be power, but also sometimes, ignorance is bliss.