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Tuesday, January 17, 2017

This Glass is Half Full or How Not to Jump off the Handle at Well-Meaning Help

          One of the main concerns I see from many people who are disabled is to maintain a fierce sense of independence despite the obstacles that they face. I get this, both as someone who now has early onset Parkinson’s disorder and as someone who generally doesn’t want to rely on other people unless he has to. Nevertheless, I find that the older I get, the more I realize that we are responsible for families, friends, and communities. I don’t say this to be political, but rather, I say this because we should all want to be a community of like-minded individuals. We should want to make people smile when they’re down or teach them how to do things that they can’t do. We should want to barter our unique talents for their unique talents, whether buying things at Wal-Mart or getting someone to chop down the dead tree in my backyard in exchange for money that I made from teaching people to be better writers / researchers.
            On the trail, it’s easy to find greater obstacles if we’re suffering from conditions. This number of potential problems multiplies in winter. The snow and ice combine with steep cliffs and rocks on the ascents and descents along the mountain face. Add the rapidly descending darkness of dusk to the picture and WAHLAH! There’s a problem in our way. The question becomes, “How do we face this if we’re here on the trail and our legs / bodies aren’t what they used to be?”
            For me, this was real on Sunday night as I pushed up the face of Hawk Rock at Duncannon. This isn’t a big or steep mountain, but there are some rocky areas, and seeing as it’s been sort of cold, but not really cold, the ice on the rocks was the thin invisible kind. I had been watching my step on this all the way up. I chose not to wear my chains since people coming down with tennis shoes said there was only some patches of ice, but the chains wouldn’t help with it since they were too thin.

            They were right.
            Most of the journey was dirt. Sure, there was salt shaker snow sprinkled here and there, but it didn’t cover the ground in any capacity. Even up on the big push right before vista level, there was no snow of consequence, though there was a seriously iced-over rock in the woods, but even that was an outlier.

            Nevertheless, the invisible ice was slippery. My Keen boot took a slide over one rock, and I doubled up care, wedging my foot against the next step and in the crevices of rocks while choosing leafy sections of the path over straight up stone whenever possible. Through rigid knees and chesty congestion, I made it to the top just as another dad, son, and dog passed me by on their way to the view, huffing it up before dark. Fortunately, an in-shape person could do that mile-long gradual ascent / descent in no time, provided he or she was confident on the rocks.

            When I got to the top, the son was looking to get close to the edge for the best pictures he could get. Dad wasn’t in the spirit of letting him risk an icy drop for a digital image, but the son was really into the multiple views. As he skirted the line between safe and in danger, Dad and I spoke about hikes and the like. The subject of Parkinson’s came up, and well, it was getting darker and darker, so I had to ask if I could have the rock really quickly for a couple fast snaps and a picture of myself so I could get it before it got too dark.
            I wanted to clear the big rock patch before dark.

Sunny pictures from July 2015

            Dad agreed, and I made my shots lickety split so I could get out of there. As I was doing it, the father asked if I wanted him to wait for me so I would be safe getting down.
            I help up my wrist to show my shakes, and I smiled as I said, “I may have this, but I’ll be OK. Thanks for asking.”
            I wasn’t hostile, mean, or stand-offish. In fact, I appreciated the concern. I’m glad they asked. Sometimes, a little help goes a lot further than no help. If he would have thought I’d refuse him callously, he might not have asked. Why raise someone’s ire with a question that falls on aggressive ears? However, he chose to be a community and to help a fellow hiker down.
            I appreciate that since it shows he cares enough about someone he doesn’t know to want to be responsible for someone else’s welfare.
            Some people get really upset at people who want to infringe on their independence and not call them by the right name (People First Language). However, I’m trying to see things from the perspective that most people are just uninformed.
In my life, I’m trying to do a couple things differently. First and foremost, I’m trying to look on the positive side. Most people who want to talk about my issues know as little about them as I did when I started out. To most average people, if they know about Parkinson’s, it’s Michael J. Fox, tremors, and medical marijuana (an offer that really annoys me, but alas, that's a whole different post). They don’t know dopamine. They don’t know that medical marijuana is not a ticket to a cure (instead, it’s a way for them to feel that I'll get all Bob Marley without the tremors so that they can get all Bob Marley, too, despite having no medical marijuana needing conditions). They don’t know about what’s being done to find a cure for it, though they might know stem cell research, a vague concept, is involved. They may not always see my tremors. They may tell me I look good despite this. They may think I’m too young to get this. They may think I’m too active for this. They may not see my other symptoms. However, they don’t know what to look for because it’s not them.
Thus, my need is to educate people. It’s not always about taking them for bathroom visits to show how bradykinesia slows things down to constipation. Sometimes, just listing symptoms without gory details is enough. People who are willing to listen are people who are willing to understand and share knowledge. By the way, if someone ever told me I was too young too have Parkinson's, I'd agree, but I'd educate them that we're all too young, and my early stuff made me 1-15,000 or so unlucky. Boy, talk about losing the lottery!
My job is also to be positive about this. My job is to be energized as well. Number one, I need to avoid rigidity. I could feel that on the trail in my knees on Sunday, but now for having walked, I feel better since my legs are worked again. Here, being energized shows people that not all people with disabilities are inhibited by their condition, though some people are. Thus, making a choice to be energized is being a role model to myself and others. I should note that I had thought hard about driving home without stopping after the Standing Stone Trail Club meeting, but I didn’t. I needed to push my tubby butt up the mountain. Right now, I can feel my big ol’ belly getting bigger. That needs to change. I can feel the call to the vista, and really, I’m so much happier on a mountain top (cue the Hendrix “Voodoo Child”). To sum it all up, if I’m not pushing hard, then I become a stereotype. Personally, I don’t know what to be with regard to fulfill my Epictetus role as a person with a disability, but I definitely don’t want to be a stereotype.
Thus, my job is to show people what it means to be people first. Many able-bodied people aren’t. With their Bonbons and their 64 ounce boss bottles of soda, they don’t live life to the fullest. They don’t choose to live life. That stuff is anathema to me. I may have to give up some things in life, but I’m not giving up the ship. Additionally, if I can motivate me, I can motivate them. Thus, they should choose to be a person first. Then, they’ll see the importance of the words. I’m not tremors or eyes that don’t blink or an every other day visit to the bathroom. I’m Dan. I’m a husband. I’m a teacher. I’m a son, a friend, a writer, a hiker, a music aficionado, and a goofy me. I may happen to not be able to smell some of my own gas (a side benefit of Parkinson's), but I'm not sciatica, dystonia, and freezing.
Here it’s important to note that these people don’t know all of our “politically-correct lingo” or symptoms managements / discussions. They know diseases and conditions, but they don’t know how we fight to be seen and understood. As a result, we need to gently educate, not start riots or tantrums when people don’t get these rigid rules. We can’t assume they know (the vast majority who aren't recently college educated don't) since then we would be making an ass out of them and us. Besides, the maniacal levels of conform or die PC theocracy are getting out of hand. I’m willing to be 99.99% of all people who say “disabled person” instead of “person with a disability” aren’t throwing hate or trying to put me out to pasture.
They simply don’t know, and it's our job to show them how able we're willing and capable of being.
And that brings us back to people who want to help others out. It’s our nature as a species to care. We just forget about this since so many people are too selfish to think about anyone other than themselves. In the same way we want the right to be independent and able, we can politely refuse and be thankful for the touch of humanity when people offer things for us that we could and should be doing ourselves.
And that’s what I felt slowly moving down the mountain, using my Black Diamond poles to hold my balance and get down the staircases, rocks, and paths, which glowed in a ghostly manner as I descended back to my car in the rapidly darkened early evening. All in all, it was a great hike, though only about a 2 miler. Still, any day above ground, any day in the woods, and any day learning is a great day, especially one without falls and bruises.
On that note, may all your trails be awesome adventures, whoever you are.

PS – to the person who asked me if I wanted help, thanks. Had the trail been really icy, you would have had a companion.

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