My lifelong friend and I had a disagreement, and now it's like part of me is missing.
We've started down the path toward reconciliation, but the hollowness inside is hard to live with. The one "comfort" I have is that the sensation is familiar. I have felt it from the moment I found out I carry the Huntington's disease (HD) gene. It's an inescapable feeling of permanent loss. A sense that some vital part of me has flown away and won't return.
HD is taking away many of my abilities. It's getting harder to speak and swallow, and I'm losing my physical and emotional balance. As the weeks go by, I'm becoming less and less able to initiate any kind of action or transition. My personal hygiene stinks.
I used to think I could shop or eat my way out of this emptiness. Heavier than I'd prefer to be, and with far too many shoes, I can tell you these trifling distractions haven't worked.
For several weeks after my diagnosis, I went to a pet store each day to have a staring contest with a large green parrot.
The parrot had no inkling of my condition, nor did the parrot care. Meanwhile, the parrot fascinated me. For the first time in a while, I felt less overwhelmed by my disease. As I stood there, eyes watering with the effort not to blink, I had found some type of respite.
I've been trying to form connections with anything that's far removed from my disease and - even better - won't ever ask about it. The green parrot was my first "friend" of this caliber, and this relationship brought an unexpected sense of achievement.
"Losing staring contests with exotic birds" sounds much to the contrary, but I finally felt slightly more normal. I had set a goal - to forge a relationship with something or someone outside of HD - and I had achieved it. And that achievement had bought me pleasure, the same way a regular person would feel.
But I know that I have to keep my goals at a feasible level. Planning to climb a mountain by fall is a great idea, but not when I'm likely to fail. I don't need any more disappointments.
So, I'm channeling my energy reserves into building a routine. A routine that'll help me thrive instead of flounder and stimulate me instead of frustrate me. To do this successfully, I need to rootle around in a bag marked "self-compassion."
I can't rail against HD, so I've been railing against myself. My inner dialogue has been poisoned to complete toxicity. Part of me is convinced I have a choice in whether I have my disease. As HD takes away my mobility, I feel guilty about not moving enough. Logically, I know it's not my fault, but the self-blame squeezes in around the edges no matter what I do.
Today, though, my mind's almost peaceful as I sit and look out the window. This is my present reality, so I'd better make the best of it.
One self-soothing activity I'm trying is art. I figure that the creative process itself is art, not the finished product. This way, no matter how imperfect or inaccurate the end product is, I know I'll have stimulated parts of my brain my HD's been neglecting.
I remember painting when I was younger and the excitement of getting out everything I needed. Nowadays, even initiating a paint session is exhausting. By the time I've set up, I'm too tired to paint or even put things away. Mixing colors holds none of the magic it used to - I get frustrated and irritable while my body pangs from sitting on an uncomfortable chair.
But I can use oil pastels while I am sitting on the couch. If I'm careful, they're not too messy, and they fit in a fishing tackle box.
I print out a picture of some farm animal and clip it to my artboard beside the paper. I only spend one session on whatever I create. My goal isn't accuracy or beauty because those would end up being more disappointments.
Creating without self-judgment makes it easier for me to stay in the moment. I choose colors; I fill in shapes. I layer and blend and scrape. Those are the crucial actions and decisions that satisfy the need to be productive. At the end of my self-planned session, I can hold up a tangible accomplishment.
On art days, I start to feel like the old me in other areas of my life. I engage in conversation more, and initiating other activities becomes easier. Every time I pick up my pastels, I'm pushing myself to keep myself in the here and now, doing some of the things I want to do.
Every sketch of a donkey or an emu represents a blissful morning or afternoon without the ugly clouds of HD hanging over me.
My dear friend visited me today, and we have a plan to do something together next week. Our friendship isn't quite the same as before - and it may never be so - but we've realized how important we are to each other. We'll do whatever we can to make things work out.
Sometimes I think about how little I appreciated my pre-HD years before the condition destroyed my abilities. Painting, running, and yoga were pleasures I took for granted, but they firmly belong in my past life. I've spent hours looking out of the window and mourning what used to be.
And yet... I've spent enough time lamenting about what was and could have been. It's time to deal with reality - every day, little by little. A while back, a wobbly-looking alpaca in oil pastels would have landed in the trash. Today, though, that alpaca symbolizes an approximation of normalcy. It may be bad art, but all I see is a new measure of success.
The individual(s) who have written and created the content in and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen.
NPS-ALL-NP-00620 June 2022