Well it’s been awhile since I’ve written anything. I fell hard and am still on the ground trying to get up. I am on another medication now which is helping. I know that I need to talk to a psychologist but that is difficult during covid. Wait lists are long. I know that the crashes will keep happening and the underlying sadness will remain until I figure out how to face the grief and trauma that has dominated the past twenty years. my strategy of staying busy and avoiding grief has only led to exhaustion and a piling up of buried emotions.
One of the the things I find incredibly difficult is staying with physical or mental routines that are healthy. I cannot seem to build a walking routine, or get on my bike, or meditate. I just want to eat junk and lay on the couch. Sometimes I just want to drink myself into oblivion. I can do something that makes me feel good one day but the next day I feel like crap and don’t want to move. Why is it so hard to do things that make me feel good?
Last year mom and I started our bike packing trip over the Thanksgiving weekend. It was amazing. I loved it. Everything about it, including the training. We were supposed to do another trip this year but it never happened. I have barely even ridden my bike this year. This year I get all excited to do something , buy some stuff, maybe start and then everything sits in the corner gathering dust and I lay on the couch gathering guilt.
Huntington’s Disease follows you even when you are negative. They call it a family disease. It is passed down through families, but also it affects whole families regardless of your gene status (gene positive or gene negative). Three generations of the illness have played out in front of my eyes, stealing away my family, waiting at the door like a monster. In our family the grim reaper is named Huntington’s. I am watching history repeat itself. Eerily repeating with incredible precision, the events that happened before. all I can do is watch in horror as my beautiful niece is quietly being taken. I will watch, as one day her beautiful daughter will lose her mom. I bet all of my hope on the mRNA targeting studies or Huntingtin-reducing drugs. So when those were stopped, I lost all of my hope. I know they are not the only studies out there. I also know I should never have gambled all of my hope.
My niece has grown into such a beautiful young woman. She is sweet and kind. She is full of hope. Maybe love and her hope will help to bring back mine.I know I need to accept, but how in the hell am I supposed to accept this?
I started out writing this blog post thinking it would be about setting a biking goal. I do want to set a biking goal. We need to find a route. A route and a date. Something to direct me. Something for me to focus on.
Hard facts to accept. I hope you keep writing Angie, lots of love.