Sunday, October 20, 2019

Sky: AC Fall

Here in northern Vermont you ignore the changing of the seasons at your own peril.

Nature always wins. She’s the correct team to be on.

Some things you just have to do on time or you may end up miserable, like sliding across November ice on the highway.

Other things you just do, well, because they wrestle themselves to a top spot in our neuro-systems at just the right time.

Lately, I haven’t been doing so hot with either. It seems I’ve opened a stress account and a clever system to keep it topped up with automatic payments, only some of which I’m aware of at the time.

Jane is more on top of the big picture ….but dementia is taking its toll on the whole household. I often have trouble with even the simplest decisions. I have to laugh when I still hear my children, now in their 30s, trying to get a jump on the endless negotiations about what color shirt I’d like to wear, red or blue? 

Could this trick from years, years ago really work on me, in present time?

I think maybe so.

I feel like there are so many different ways I’m going downward — I get a lot of enjoyment out of riding my bike, but at the same time I feel like I’m getting weaker rather than stronger and having less balance rather than more balance. I’m at the intersection of what toddlers do when they are learning to walk.

My hallucinations are not really settling down. Sometimes they feel like my friends; other times they keep their distance, and it’s annoying and frustrating.

One of my long-time joys — and part of my identity — is exploring the world through books, reading about experiences that others have had. But the physical process of reading is now intersecting with my failing brain. I have to work to translate each group of letters into something meaningful, and that’s just too hard and too slow. And it is a reminder every day that I’m on the road down. (Thank goodness for audio books.)

In the middle of the night I wake up and don’t know where I am. I know who I am and who my family is… for now….. but I feel like I’m getting a taste of the time when I can’t take those paths for granted.

It sometimes takes what feels like a very long time to get re-oriented to where I am [ed. note: yes, it takes a long time]. Am I in my house? My neighbor’s house? Do I turn on the light? Do I get dressed? I turn to Jane, hold her hand, and let her bring me back to reality.

The world I’m trying to navigate is inconsistent, confusing, hard, and sometimes terrifying. Waking at midnight in a place that I don’t know gives me a hint of how my life will be as the disintegration moves ahead.

As Dylan Thomas said: “Rage, rage against the dying of the light.”

1 comment:

  1. Oh Sky, I feel this. I don't want to make assumptions, but... it must be terrifying, at least sometimes. I feel hugely privileged to be asked to accompany you on this journey. Your far-away companion, Judy