Image courtesy Jodi Smith
Fun fact: the word “karaoke” is a Japanese portmanteau derived from the words Okesutura, or “orchestra,” and karappo, which means “empty” or “void.” Empty Orchestra. Factoid absorbed? Cool. Let that settle while I sing you a cheeky little tune that will most definitely not be dedicated to you, or your wife.
If you know me in real life, you know I love karaoke for reasons that have little to do with singing. As Parkinson’s has taken an increasingly aggressive stance with me, these whimsical performances have become medicine. It’s a great workout for the diaphragm, which we desperately need if we don’t want speaking to become a big problem. It’s social, and such connections are essential to everyone’s health. Emotionally, it’s cathartic because it’s an opportunity to make an ass of yourself in a zero-risk setting. For one slowly losing her ability to speak, stepping into an ungainly spotlight to train creatively is worth the risk of humiliation.
If you’ve ever sung in an a capella group or a choir, you have probably experienced the weird, unsettling power of harmonizing- a combination of physical and metaphysical phenomena that still partly resists scientific explanation but might be what the “woo” set really mean when they talk about “raising your vibration.” Singing produces entirely literal vibrations (picture the operatic soprano shattering a wine glass) that can alter your mood or even your mental status.
So if you’re a bar, club or restaurant that I can easily get to (by shuffling) and you host a karaoke night, odds are, you’re going to see me at some point. I’m the intense-lookin’ bag of bones with the shaved head, twitchy limbs and the brain implant battery sticking out of my chest, so I’m not hard to find. I have bigger concerns than how my campy performance of Stray Cat Strut goes over at the local watering hole.
I went to a karaoke night at a local establishment with some food from the sister deli next door, and ordered a pint to wash down the 63 or so pills I take to keep from turning into a piece of statuary. I’d been supporting this small business through lean times by inviting everyone I knew, propping the place up and grossly over tipping their KJ’s as well as the owner/bartender. Several nights of karaoke had been crammed into this tiny space, so I celebrated his survival of the long quarantine with frequent visits. The owner knows me, too. Or apparently thinks he does. Anyway, as I’m waiting for the karaoke guy to cue up — oh, let’s say “Wot” by Captain Sensible — something interesting happens.
Making conversation with this barkeep — let’s call him Jack — I say something along the lines of “You doing OK?”
He says “Wot.” Kidding. If only.
This man with an ironic handlebar moustache, rolls out his Napoleon complex in reply…
“Are YOU OK? You’re the one being strange and shaking and looking all twitchy.”
Yeah, I get that a lot. “It’s Parkinson’s,” I said.
“Yeah, right. Sure, your brain is programmed. Right. Mmmhmm. Parkinson’s.”
No, wait, it gets better. Jack turns his back to serve drinks, hunching his shoulders and twitching. Making asides to buddies at the end of the bar to crack up. Jerking his head around like a demented chicken and making shaky-hands and if you’ve seen footage of Donald Trump mocking that disabled reporter: that’s basically the kind of stuff I’m talking about.
No one steps in. Folks holding up the other end of the bar were either jeering along with him, or ignoring the whole thing. Though most of us are entirely distracted by phones, he wasn’t subtle in his hostile mockery.
People: I am fifty years old and Jack is old enough to know better. Why are we suddenly reading off the script of an oppositional-defiant kindergarten playground bully? And if we’re doing that, who the F is on yard duty up in here? No one needs that. Ableism takes a lot of subtle, pernicious forms, but by this point in life one thing I didn’t think I’d be dealing with was open, overt, juvenile cruelty. But he keeps on sneering and mimicking my unsteady hands now holding my programming device (DBS*) until I get so flustered I double down by choking on my food. Jack turns this into standup material by creating a false narrative I was being dramatic rather than a truth he cannot comprehend- that dyskinesia is just another brutalizing symptom of Parkinson’s.
Karaoke night ruined, I hand him a fifty and ask for change. He takes the fifty.
And keeps it.
Clearly, douchecanoe bartenders have existed from time immemorial. I have tended bar in several establishments and recognize that it’s not easy…but bullying a patron who just had brain surgery takes a special kind of ignorance. Normally, one responds to that by leaving without giving a tip, but since he pocketed the Ulysses S. Grant I gave him for change to tip his KJ, I didn’t have a lot of options there. And I’m feeling like a pissy Yelp review isn’t going to enact a whole lot of systemic change. Pre-Parkinson’s I could have sent the contemptuous Captain to urgent care with one punch. These days, the closest I get to boxing is a fist-bump for making it all the way down the stairs, so I just left, and drove home alone humming this tune.
I have a question. What the F is wrong with people? Seriously — what? Not just Captain Jack. Not just his whiskey-tango minions. Not just the roomful of bystanders who did not bother to stand up for me. Everyone. I include myself. What is wrong with us? Thousands of years to get this “social species” thing down pat, and this is my Friday night?
I’m lucky to be alive. I honestly do love this stupid dysfunctional arbitrary world and am glad I’m still part of it. It contains so many compelling, or funny, or moving moments. But you know that feeling when you’re in 8th grade and the person you have a huge crush on ignores you (or sticks a bag of poop in your locker as a “prank”)? Do you ever feel like the entire universe not only doesn’t love you back but is constantly figuring out your locker combination and collecting feces? I’m going to put it out there: I do. I feel orphaned.
I feel like all of this is a fricking Empty Orchestra some days. Hollow. Ableist. Programmed. Performative. I get that not all friendships are lifelong, that sometimes a transaction doesn’t go well, that the person who’s causing me pain likely has their own pain to deal with, all the “it’s not about me” stuff. Message received, Universe.
Even swashbuckling captains can set an example by refraining from violating the well-being of their guests. It’s bad for business to lead with ego, since comfortable people spend money. I went out to relax, yet this was the most uncomfortable part of a week which included getting staples removed from my skull and complicated DBS programming, after which I fell injuring my neck and shoulder. Dusting myself off is no easy task, and I only went out for the music, but left feeling pretty beat up. Finding safe and inclusive venues hosting live events is not entertainment, but my only available outlet for music and movement, aka dynamic medicines to manage an unpredictable condition.
With the ongoing and devastating losses of function, attending karaoke while exhibiting common involuntary motor effects of Parkinson’s, such as Bradykinesia or dyskinesia without being put down or taken advantage of (by the business owner!) would be nice. Inclusivity and visibility means everything to those of us with often invisible disabilities. We are already getting beaten by chronic disease, Captain.
Instead of mocking what we don’t understand, can’t we be more curious? And kind. In any scenario, to be treated with basic human kindness is not be a big ask. In fact, we shouldn’t have to ask at all.
*further reading on Deep Brain Stimulation Surgery: https://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/about/pac-20384562?back=https%3A%2F%2Fwww.google.com%2Fsearch%3Fclient%3Dsafari%26as_qdr%3Dall%26as_occt%3Dany%26safe%3Dactive%26as_q%3DDeep+brain+stimulation+surgery%26channel%3Daplab%26source%3Da-app1%26hl%3Den