If you haven’t seen the original Blade Runner… well, that would suggest you’ve been locked in a basement since 1982, in which case neither the spoiler ahead nor Parkinson’s Disease are your biggest problems.
Roy Batty (played exquisitely by Rutger Hauer) isn’t just a psychopathic replicant. He feels. Intensely. He feels grief, and elation, and existential dread: he’s more human than a lot of actual humans. You could easily lift his lines from Blade Runner and drop them into an interview with anyone living with Parkinson’s, and the script would be seamless. Except that, as a replicant, Roy’s a little less inclined than we are to put a brave face on it so that we don’t scare everyone with the truth.
I can relate to a rage that comes from knowing life is diminished and increasingly limited by circumstances beyond my control, and to the obvious mental health challenges of chronic pain. I have encountered a few tenacious stalkers who have occasionally mirrored some of Batty’s sociopathic behavior, people who appear to be acting out a role in a spy movie that’s playing in their heads, and for some reason can’t see that no one else is reading from their script.
Why do we believe our own thoughts without question? I’d like to suggest it’s not the physical challenges of Parkinson’s that takes us down. It’s the non-motor symptoms, like anxiety and depression and storylining without reflection. Storylining is especially dangerous to your health particularly because, thanks to our evolutionary-artifact limbic systems, the body does not know the difference between a real threat and a perceived threat.
I would love to get into the parasympathetic and sympathetic versions of responding to stimuli, but of course we don’t have that kind of time. Just know that when you’re jacked up, hypervigilant, angry — if anxiety or depression has seized the microphone — you’re not making rational choices, you’re not having reasonable reactions, and you’re literally, physiologically hastening the progression of the illness. I’m not being poetic. It’s real.
We must seek more ease and joy and pleasure if we want to survive, much less live. Prolonged distress, unresolved grief and trauma: we need to work through these things rather than compartmentalize them. Caging trauma doesn’t work. It will keep snapping at you until you release it into the wild for good. (But enough about me! Ahem.)
Today, I want more life. I want to be able to pick up a spoon and eat cereal without spilling it down the third clean shirt of the day (the laundry burden of Parkinson’s! Another under-discussed horror!) I want to be on the other side of this windowpane, playing with the other kids, instead of watching them longingly while sinking in quicksand. I want to be able to pick up a pen and write legibly. Have you ever heard of a decent writer who cannot write, other than the magnificent Stephen Hawking? But here we all are, shaking and freezing our way through our stories.
“In the end we’ll all become stories.”
When she first put pen to paper I can’t imagine Margaret Atwood expected something like The Handmaid‘s Tale to come out of her pen. Writing it takes on its own life, because it’s transpersonal. Ask twenty really good writers about their best work and every single one of them will probably tell you some version of “It’s like it wasn’t even coming from me.” Literature seems to legitimately come from the collective unconscious — some authors (Liz Gilbert comes to mind) will tell you with absolute conviction that we don’t even select our ideas: they select us.
Someone asked me “how to write” and when I laughed it seriously annoyed her. I think she thought I was mocking her, but I wasn’t. I was laughing at the notion that I could answer that question. Frankly, the answer is “one word at a time.” I’m just spilling truth as I perceive it onto a page, and time willing, another page… and so it goes. If you happen to read it and relate to it, that’s awesome and if you don’t that’s cool too. But it is the simplest thing and the most accessible of all potential tools of expression to put your pen onto the paper.
The trouble starts when we are called to be honest without flinching. If you flinch, that means your ego is worried about how it will be perceived. Once that takes hold, all we end up with is the same country ballad dressed up in a different outfit splashed across the page. It’s Groundhog Day.
I can’t speak for all PwP, but I’m willing to bet that we all want more life. This means different things to different people, but I think most of us would agree we’d like a decent (or decent-plus) quality of life for as long as possible. Due to this monstrous and unpredictable condition we share, which happens to be degenerative and progressive, it’s nearly impossible to maintain with dignity, hope and perseverance.
Much has already been written on the topic of how to work this thing called Parkinson’s. We don’t have a choice about it, so it’s a good idea to check some of that content out. But in the meantime, I challenge you to hunt down some dopamine. You are a hunter, aren’t you? It’s also OK for gatherers because you’re going to need to gather some strength for this one.
I dare you to step out of your comfort zone and do something that is not only physically challenging but potentially humiliating. Because if you don’t, you’re going to be getting smaller until you disappear. Because that’s what happens. Isolation can be lethal. I know: who wants to go outside their house when we might piss our pants or trip over our shoelaces (assuming you can even wear shoes with laces). Maybe we can’t talk without a stutter or think without clutter and I’m not trying to drop a rhyme (but you’ll know what I mean in time! See what i did there?)
I just finished a rap video.
Let me say that again: I just finished a rap video. I did this because it is incredibly awkward and bizarre for a 50-year-old woman with a railroad track of scars across her skull to be attempting any form of swagger. And let’s be clear: I am a white woman in the suburbs thumping that bass from my kid-mobile in a Trader Joe’s parking lot. Not exactly what you would expect when you think of a rapper. The director of this rap video has dubbed my alter ego “Slim Shaky.” See what he did there? The rap video will be released at the directors discretion (stay tuned!)
Anything to bring awareness or attention to Parkinson’s because this is how we (PwP) may feel less isolated living with a most unpredictable and menacing condition.
This was not entirely outside my comfort zone, even if watching it might challenge yours. I’ve been to karaoke nights when I’m “off” and had to limp-shuffle-crawl onto the stage, or shaken the mic so badly I had to set it on top of a table and sing on my knees (hey, it worked for Leonard Cohen!) I just hope you see what I’m getting at here: we cannot remain comfortable and also have progress and health.
Saving yourself from the cruelest effects of Parkinson’s means getting really uncomfortable and embracing it. Aging itself will prevent us from doing things the same way. We are each modified and transformed by our experiences and our limitations, whether we like it or not. So maybe it’s not so much a dare as an invitation because it hurts to see my fellow PWP grow so quiet. And I can relate to the feeling of not wanting to. Being exhausted at the thought of work or errands or a walk (or coffee with a friend if walking is a distant memory).
And don’t let opinions keep you from leaving your house either. Though it Is most unpleasant to have to explain to presumptuous strangers that in fact we are not drunk or otherwise deranged, we are just “having trouble moving fluidly.”
After this happened a few times you might feel like spitting back but try to remember that most are completely unaware of young onset Parkinson’s which can be unpredictable and confusing at best.
Hopefully that anyone would be so obnoxiously ignorant will be a rarity as your disease progresses, but it happens. It’s also true that we nearly always have more support and good energy than we need if we know where to look. All it takes is a couple of stalwarts who understand what being flexible means, and there is always a way to stay active and social. This is vital, even for introverts. Once you have Parkinson’s, you need to locate your inner extrovert and work it like a muscle, because being alone in the maelstrom of your own brain will disable you faster than anything.
If you’re lucky, you might find yourself at the edge of a ravine, making out with someone in between songs that you belt out because you’re so very alive. The strain and challenge of striving leads to exhilaration that you have blood pumping through your veins and that you’re still a whole person despite what Parkinson’s has taken away. And like the old saying goes, when one door closes, another inevitably opens. You might find that what Parkinsons has taken away clears space for something you had no idea you could do.
If you take (reasonable) risks regularly, you know how life affirming and healthy it can be to step away from what you thought was your future and create a new one. This condition won’t wait for you to find your footing — it’s explicitly here to pull the rug out from under you. Be ready to roll.
Right after Roy Batty asks for more life, he crushes the skull of the man who made him. There is a metaphor worth heeding there, dear readers. We can’t force anyone to make us into the person we want to be. We can choose to live full on in any stage of life. Right here. Right now.
Image: Anders M. Leines from our film collaboration, A Mountain At My Gate.