People First Language Part 2
As April is Parkinson’s Awareness Month, many people within this community are looking to see themselves as being as human and able as they can possibly be in a world where not everyone sees them as being capable of these things because of issues that we have come to regard as the new normal. It’s a tough hand to deal with, but it’s our lot in life, so yeah. The point here is not to discount mine or anyone else’s suffering, but rather to say, learn about what we go through, support medical advances, be kind, push yourself all you can while you can, and never forget you’re a person first. I know it’s been said, many times, many ways, but “Happy Parkinson’s month to you (?)” (yeah, since this one is my first as a person with PD, I’m still trying to figure out what to do with it – bear with me, please).
Unfortunately, I’ve come to realize throughout by life before and with PD, in life, abilities aren’t always divided equally. Some of us are better swimmers or analysts, but we have trouble with algebra and dunking. Such is life. We learn to accept and enjoy what we can do, and we strive to work hard to do the things we want to do. With my Parkinson’s, for instance, my left arm tremors from the hand to the upper arm, which can make a violent kick of sorts. This is not my favorite. My balance can be off from time to time, so it’s essential that if I’m going to hike mountains, I need to do this with a pair of trekking poles (Black Diamond – my favorite). There are places I feel safe and that I don’t feel safe. It’s the new normal, as my wife would say (happy 42nd birthday to her today!). I don’t blame anyone for my predicament, but the crap that comes with PD does bother me from time to time. It’s part of why I took a break from writing about it, but with that being said, I know I can’t hide from this, so yeah… back to confront the demon again.
Unique ways of dealing with predicaments and illness is how we cope. Whatever works and doesn’t hurt people is good. This is especially true when I think about the finite nature of this growing shaking in my body. Maybe it will get a lot worse. Maybe I’ll freeze at some point and not see some of the further stages when PD starts in with Rock Bottoms and Stone Cold Stunners. Even if I could just prolong the complex expansion a little; after all, I am only 45, I could live with that.
But the fact that I am having trouble balancing some of my want to do things, be it time with my wife, hiking, traveling, writing, reading, or just having time to have random fun has been cutting me to the core. This weekend, I had to offer out my volunteer position as the secretary of the Standing Stone Trail (and KTA and Great Eastern Trail rep positions) and volunteer week for the Keystone Trails Association to focus on the importance of giving my time to family in light of all things. I don’t regret doing it, but I do feel angry at the Parkinson’s beast for making it happen. I should say that this is in connection with other nagging entities foisting my time, so it’s not all the big bad PD. Part of being older is knowing how to do the adult-ing thing, but at the same point, life changes us. We see parts of our life where time wasters and other uncertainties and frustrations kick in, and we want to exorcise them. Unfortunately, that’s easier said than done. However, the next months will see many changes in my life.
There’s no other option but to change and get better.
But as far as the PD goes, for about 2 months, I’ve given Parkinson’s the “I don’t care about you” thought. Frankly, if it’s not my bicep shaking, everything else is the new normal. Whatever. I take my Azilect and forget I have it, which is kind of nice from time to time. “Forgetting” has allowed me to remove my over-focused awareness (“Hi! I’m Dan, and I have Parkinson’s!) to write for myself more (the supernatural stuff) when I can (1 or 2 days a week). I feel so consumed by so many of life’s have to do things that it’s been nice to not to have to do this, too. Instead, I get to focus on new characters like Billy Boot, Waldo Young, and Lionel Hutchinson in the book that will be called Windswept.
Unfortunately, even with shrugging of the weights of my world, my work schedule leaves me not feeling like a husband first or a hiker, writer, and fun guy second. Hell, it’s been 16.5 years since I knew what I was first other than a “Mr.” Sometimes, I don’t even remember who Dan is. That’s never been easy to deal with, but now with my PD awareness, I’d like to say I’d like a little more of me back.
For that reason, it was nice to hit the Thousand Steps this weekend. Mount Union’s premiere hiking joy on the Standing Stone Trail offers about 1200 steps to get 850 feet to the top. There’s 1¾ miles of trail after that to another vista (Mill Creek Quarry) and ½ mile to an additional vista (Shorb Summit). I didn’t do the upper ones this time (I have several times before), but I pushed out the iron rigidity in my lungs, which has been weighing me down and adding weight to my middle, and I walked up the staircase slowly, but I made it and whoo hoo-ed at the top! See that’s what we do when we win; we celebrate our victories (don’t ever forget to praise yourself).
Along the way up and down, I talked to people who were hiking the trail, and it felt nice to enjoy trail talk with them. It felt… human again. The sun was shining, the creek was running, and life was good. Frankly, there’s nothing like getting between trees to truly enjoy life and being able to exorcise the demons from all of the things that keep us from being the person we want to be first.
For me, on a sunny day like today, I look forward to more new life that runs from spring to mid-autumn.
“Let there be songs to fill the air!” Grateful Dead – Ripple