Huntington’s Disease is one of the hardest things to talk about within a family. It is easy to talk to people outside of the family. But to your own loved ones, it is impossible. It is a fear you bury deep inside while you wait. You can watch it coming, see the signs and lie point blank to someone’s face about it. The truth is just too horrifying. Talking to the experts they tell you that many of those signs that you see could be anything from anxiety to just being eccentric. But as a family member you know. It is nice to grasp some tiny bit of hope for awhile though, and that makes it easier to lie.
Juvenile Huntington’s is the worst. It comes on before someone even has the chance to finish learning the things they need to know in life. It makes young people so vulnerable. So vulnerable to people with bad intentions, to risky situations and to poor choices at a time in life where we are already vulnerable to those things. It comes on when a person has not even had a chance to decide what they want for their future and to put the pieces in place to make their desires real. Instead, life is dictated by outside events and circumstances. It can also lead to two or three generations of family members with the disease at the same time. My sister predeceased my dad and probably started showing symptoms at the same time he did. My dad is experiencing a very long and drawn out death. He sits in a nursing home unable to move, unable to talk. My niece has just been diagnosed….. The story is so awful, so impossible that how can it even be told? How can it even be talked about?
I used to be optimistic about everything. Now I am not sure if it was optimism or denial. I used to think the disease was not so bad. I had kids, made a family. Kids who lived in fear. Watching the disease around them, wondering if they might get it too. I used to think I chose hope by not getting tested for so long. Now I wonder if that was really living in fear. I am not sure anymore.
We often have these stupid sayings to try to make ourselves feel better. Life will never give you more than you can handle. I always clung to that one. But that is not true. Maybe that is why I kept taking more and more on until I broke. I am broken now, unable to do anything. Paralyzed by shame, guilt and sadness. Still too afraid to talk.
So sad. Praying for you.
Thank you