The Glitch in Our System
I have an idea that I'm slowly turning into a story. It's called A Glitch in the System. The basic premise: Something is inside the main character's body and brain that makes him realize that he isn't "right," physically or mentally, anymore. He knows what it feels like. Here, he can describe it, but he doesn't know what it is.
I'm aware that there's no universal normal, but there's a "normal" for each individual. There's an idea that something is happening to us. We hope this glitch may be temporary, like a medical side effect (blurred vision), as opposed to something permanent (blindness). As kids, we might have played the which-sense-do-you-want-to-lose game. However, as an adult, I want them all. I'm greedy like that.
Living with the effects of Parkinson's
When I originally set out to write this, I called it Spaceboy (after the Smashing Pumpkins song). I had absolutely no experience with Parkinson's symptoms when it came to writing that, so it organically ended up unfinished. Looking back, I had effects for pretty much my whole life. I just never knew the glitch was Parkinson's disease (PD).
As time goes on, I find myself drawn to a music-inspired (not musical) version of Invasion of the Body Snatchers meets Jacob's Ladder. It's definitely a sci-fi shakeup ending kind of thing. The protagonist confronts his and other's "reality" while going on the run from the baddies. Some of the antagonists are inside of him, while others are external. On this journey, he is accompanied by fellow people with a "glitch" of their own.
I think you'd like it, though it definitely helps to like Neil Young's song "Cowgirl in the Sand" and the Velvet Underground's Loaded album. The story brings the songs to life. You'll just have to wait until it's done to see.
Parkinson's awareness through sci-fi
Not all glitches are the same. There would be room for Alzheimer's, Multiple Sclerosis, Lou Gehrig's disease, etc., to move beyond my persona's Parkinson's disease. Neurologically speaking, we share a lot of similarities with the condition, progression, and fear. We're on the same team, so we need to advocate for one another.
I think science fiction is a digestible pill to do that, provided we keep each glitch real and don't play for laughs. Besides, many people who watch the same movies over and over love philosophical movies about the brain in a sci-fi world. Take, for example, The Matrix or Donnie Darko. And they often compile all-time best lists... let us nourish their inner education drive.
With the right producer, director, and this story, the movie could be A Beautiful Mind prevalent. However, the writers would have to work around the excessive "bedroom scenes." After all, there's so much fatigue and exhaustion in Parkinson's that there would have to be a way to incorporate that into the plot.
Some people may be worried about the trivialization factor, and I get it but frankly, Parkinson's owes everyone affected by it. I'd like to bring a class-action suit against the glitch for the benefit of all of us. It owes my great grandfather who had it when it was called Paralysis Agitans. Alzheimer's owes my gram and my uncle who died with it. All of these diseases owe us. If I can do something that lets people know it's reality (creating fiction), I'm going to do it (to fight for the cure).
Advocating for a cure
Sometimes, life brings awareness to people naturally. Other times, it comes via learning. Lou Gehrig had the greatest baseball season ever in 1938 despite only leading the league in games played. A 4.7 WAR and .932 OPS are far from the highest numbers ever, but that year he hit .295 with 29 homers in his first year with amyotrophic lateral sclerosis.
You don't need to know baseball stats to know what kind of a mindset and physical determination it takes to override a disease that slowly stops all movement and still be an all-star.
If a clip seen on MLBTV or the Ice Bucket Challenge brings you to be a warrior for raising ALS awareness, I don't mind at all. You have your horse in the race. Bring on the cure.
The challenges of Parkinson's on film
Most of Parkinson's doesn't make a good movie. It's also hard to act out. Just ask Michael J. Fox regarding his short-lived, self-titled show, which he discusses in his new book.
Think about celluloid non-fiction: Are you dropping $13 to see me not have facial expressions? Does the idea of me constipated make for a good date movie? Hmmm... the newest superhero movie in 3D IMAX or a story about a guy who has trouble putting on his shoes and socks?
I recognize we have to be creative and pick our battles. Tremors and rigidity show well in documentaries, especially when we want people to empathize with our burdens. Nevertheless, my hammertoes are aching in pain as I write this with stiff fingers.
You can't see the effects of dystonia and rigidity. Sitting here shirtless, you don't get how hot my body feels on a cold winter day, so I need to express all of that to you personally and poetically. Besides, me being topless isn't really a major ticket-draw. Trust me... chocolate iced donuts, pizza, chicken nuggets, and cheesesteaks.
Using creativity to confront loss
I'm all about keeping it real or creative when I can be. One of the most creative and moving films in recent years is Sound of Metal, which is about a drummer (Ruben) who loses his hearing.
It's on Amazon Prime. I won't ruin it for you, but the director manipulates some of the sounds so you hear what Ruben hears or doesn't hear. It's incredibly emotional, so if you get a chance check it out.
I liked the way that Riz Ahmed played Ruben. He had a very human way of confronting and accepting his losses. There didn't seem to be any Hollywood glitz, just a guy trying to make sense of the absurd. In short, a catharsis without over-dramatization.
The uncertainty of neurological conditions
This is why I see parts of our condition with the same terror and anxiety of being a passenger in a car while a drunk driver swerves in front of you (as happened to my wife and me a year or so ago). I see REM sleep behavior nightmares as an insight into the glitch in our lives.
The feeling of losing our memory, vision, hearing, smell, and taste suck. The thought of not being able to drive places or go places is shades of being shoved into a CAT scan like a body on a slab, wondering if the results are going to put a date on the right of the hyphen.
People need to know and work toward solutions. It took 9 months to get a COVID vaccine into hospitals. Just think what we could do with a fraction of that urgency for these neurological conditions. Sometimes, all it takes is marketing to kick a glitch in the butt. Ice cold water to the head? Who'd a thunk it?!!
Do you or a loved one use smartphone apps to help with PD management?