Today, July 4th, is one of the most important holidays in these United States: Independence Day, or the country’s birthday, the day we declared ourselves to be a free and independent state.
To be independent, to be free, is one of the most powerful and universal dreams. It’s so powerful because almost everyone has a personal independence day that they long for. Whether it’s freedom from a job and the independence to retire and do what one wants, independence from an oppressive spouse or parent, or independence from financial burdens, we all recognize and share the vision of unshackling the chains that bind us, that prevent us from achieving our dreams. It’s at the core of being human.
It’s easy for me to name what I dream of independence from: Parkinson‘s Disease.
I’m at the point now where every day is literally a street fight between myself and this stupid fucking disease. And if you want to know who’s winning, all you need do is count the bruises on my body from the frequent falls and the walls and furniture I ‘m constantly crashing into as a result of the balance issues I struggle with. Right now, at this moment, I have bruises on both arms and shoulders, one on my back, and a particularly big and purple shiner on my left hip that is finally beginning to fade. I’ve had enough falls and crashes by now to know that it takes 48 to 72 hours after the worst ones for the pain to appear. Last Thursday night was one of the worst so far, when I fell out of bed flat on my back. Like clockwork, the pain has started to set in this morning.
Then there’s my speech and voice. I stutter and slur my words and mumble softly, and when at my worst, people either simply don’t hear me at all or mis-hear me, nodding yes or shaking their heads no when in fact I never asked a question. Usually I try to speak up and make myself heard, other times I figure it’s not worth the effort and let it go.
For a guy who fancies himself a writer, nothing is more frustrating than coming across as inarticulate.
And speaking of writing, I usually try to fit my writing time into that brief window when my meds have kicked in, because otherwise, it’s getting too difficult to operate a keyboard. If you look closely at the dates I post articles to this site, you’ll notice almost a steady decline in my output. What used to be once a week has turned into once every other week or less.
There’s a new thing that’s been kicking my ass lately, and that’s “freezing.” I could always tell when my meds start to wear off because I become very rigid and stiff, and movement of almost any type becomes very restrictive. What’s new is my brain’s apparent difficulty to multi-task when I’m in this state. Any physical activity I attempt to do, whether putting on my socks or getting out of a chair, requires my full concentration. For example, every morning, when putting on my socks, my mind begins to drift as I think about the things I want to do in the upcoming day, and before I know it, a minute or two has passed by and I’m still sitting on the edge of my bed, sock in hand, staring at my foot.
This all sounds very depressing, and trust me, more often than I’d care to admit, it is. But despite all of this, I haven’t given up. I’m currently a week away from completing my second go at Parkinson’s physical therapy training, and I religiously do my stretches every day. I still work out daily at the Kenosha Memorial Hospital cardiac center and still lift weights, trying to ignore the pain in my arms from my bruises. And there are times, especially after I exercise, where I feel good. I’ve learned to treasure and bask in these moments, even when they last for only ten minutes or so.
Every morning, when I wake up, I tell myself that while it‘s inevitable that Parkinson’s will eventually win, that doesn’t mean I can’t give it a good fight. Maybe, for that day, at least, I can kick its ass, and declare my own independence, however short-lived it may be.