For several years after I tested positive for HD, I complained to anyone who would listen. “I am not going to be able to think. I am not going to be able to control my movements or speech.”
Essentially, the feedback I got was that it wasn’t happening all that much then, so I might as well not think about it and focus on enjoying every day.
And I have tried that, although it has mostly felt like I was playing a board game on the railroad tracks.
I have captured happy moments like fireflies in a jar and stared at them until they died.
Now the stuff I was worried about happening is starting to happen, and I have used up my complaining allotment. Now what I get, when I share what is going on with me, is that it is not HD and that it happens to everybody. Every time someone says that I want to vomit.
My situation is different now. I can feel the tracks rumbling beneath me and am being told to sit tight.
The thing that perplexes me the most is that, with HD, any sort of denial is perceived as coping. Pretending it is not happening means that you are dealing with it bravely.
I don’t know of many people with cancer who have thrived by denying it, who have been comforted by loved ones and professionals telling them it is not real or that it happens to a lot of other people and, therefore, is not anything to worry about.
My HD progression has increased my defiance with regards to anything I cannot comprehend. I am sick of feeling alone and invalidated.
And in the midst of this cognitive dissonance, I was asked to write something uplifting about having HD. That really pissed me off, to be honest, because I am in the middle of perceiving that my complaints are not being heard. But it was for a good cause and I really like the people who asked me. So this is what I made up:
“Routines are important and, living with HD, I hold my routines as treasures. Eating a healthy diet, walking with my husband, and even sitting covered with my favorite blanket are all simple things but, put together, they form a foundation for a life of substance. I am grateful to have some good routines in place and, when the time is right, I can plan and savor new, positive experiences. And if faced with stress, I have my routines to fall back on, to uplift me. Having healthy routines is like having a huge feather bed that I can enjoy landing on and that is always there to catch me!”
But what I really meant was this:
“I am incapable of achieving anything anymore. All I can maintain are simplistic routines, and even that is hard. I can’t remember processes, figure out procedures or follow written instructions. There are several things that I did last year about this time, like put up the Christmas tree and self-publish the book, that I can’t seem to do now. I stumble when I walk and sometimes my legs just don’t move when I tell them to. The train is coming down the track and all the fireflies are desiccated in the bottom of the jar. Someone please understand that this shit is happening and I do not know how to cope with it. All I can do is sit, covered in my blanket (which is an amazingly awesome blanket by the way) and wait.”
So many of my friends are liking on Facebook the first passage I wrote, which was a lie. They are thanking me for imparting wisdom that I lack.
The truth is that Pollyanna has left the building and I don’t know if she can come back.
But none of this is anybody’s fault.
And how I become acquainted with my fate going forward is my own responsibility.
I just can’t guarantee that I am responsible enough or intelligent enough to deal with it by ignoring how much it hurts.