To Be or Not Be Out About My PD Diagnosis... That Is the Question
Choosing to be out about Parkinson’s is a big decision. My personal belief is that to be "out" is to control the narrative of how we are perceived. How far out of hiding we come does have consequences, but living in hiding, in my opinion, is far worse than being out in most cases. However, choices are individual since they're "kind of a big deal".
Thanks for the non-help Facebook!
Recently, a fellow chat room guy I know unwittingly came out to his whole Facebook list when his privacy setting for group posts was off, and well, he’s out and they’re accepting, though naturally shocked. He is handling it well.
Other people choose to be in the closet with their Parkinson's diagnosis. That’s their right. I’m not sure how we can hide our symptoms if we want to, but alas, some people feel differently. With the fear of losing a job, I get it. Some people don't understand all that comes with our reality/identity.
Cool symptoms with dual uses!
Like professional wrestler Blackjack Mulligan, every day of my life, I wield that awesome move that is The Claw. As a kid, I was led to believe the power of this move was so awesome it could threaten the life of an apple. It set fear into young kids from the 1970s. Then, my dad expressed he could do the same thing. Of course, that made him popular with us kids as my friends would offer to bring him apples.
Now, I don’t get offers of apples. Instead, I just sport a set of fingers that curve up in a monster-looking way.
The main features of a package
As for the dystonia toes on my left foot, I can still hide that, so yeah… win some, lose some. I’m not sure how I’d hide my tremors at all. My left hand is off the hook - and that's before anger, fear, and joy. Apparently, if people look closely enough, my head shakes. My right hand is sort of kind of shaky. I would be able to hide tongue tremors if I had them, but I’d have to shut up! That's not always easy.
With regard to my unblinking eyes, you may not know what that’s about. Maybe that lack of knowledge would shield me.
Standing up to negatives before they happen
Some Parkies will drool. I remember a teacher who did this. Looking back now, he seemed to have some other symptoms, too. Thinking of how students said negative things about him (in the late 1990s), it might have been better for him to place a disclaimer since every student I knew respected mine.
“I may X, but it’s because of Y.”
“Unfortunately, I can't understand softly spoken low voices (especially English language learners), but it’s my Parkinson’s hearing… not racism.”
“I may look middle-aged uncool in sunglasses, but that’s because I’m more light sensitive. Well, that and I’m 'holding onto 16,' like John Cougar Mellencamp said."
"You may see me yawn when I’m talking to you, but that’s not a sign I’m bored.”
“I may not smile at you or show much facial emotion, but that’s bradykinesia...”
“My voice changes volume a lot…”
“I may have a voice like a robot…”
“Yep, this is a weird way I walk (like my legs and arms are tied to broomstick)…"
“I may pause or seem to forget what I’m going to say…”
“My emotions shift a fair but, but I’m not going to flip out on the self-checkout machines (even if I yell ‘operator’ at phone trees).”
“I may prefer to be alone sometimes…”
“All of those grand plans vanish with the need to nap…”
“I may sweat like a pig in the mud at over 84°…”
“The bathroom and I are besties”
“I might not have worn sneakers since the Obama administration…"
“When I hike, I sweat, and I need 2-3x the water you might”
“I might extend the underwear radius in the middle of a snowstorm as my house stays a balmy 65°F…”
In the end
“I may ramble on about having PD issues to blame, but that’s because I’m scared that you’ll find something to hate about me in all of PD's garbage.”
The benefits of being who I am
So yeah… I’m out and I’m looking forward to not being able to taste healthy foods I don’t enjoy now, but which will help me later. I’m also thankful I’ve lost some of my sense of smell so I don’t smell the chili and burrito byproducts in my house.
I am still worried how long I can work, drive, hike, and button my own buttons.
Nevertheless, I’m out because I’m playing my fears tough for the gals and guys who just got a cruddy diagnosis. Besides, if a goofy middle-aged chubber wubber like me can do it, then many of my other Parkies will also feel confident enough to educate / advocate / live life full on, while giving Jimmy Choi a run for the money.
With a team like that, we’re going to move toward a cure!
So for all the Parkies in the struggle, keep on rockin’ in the Parkie world!
Have you or a loved one ever tried speech therapy?