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Updated: May 27, 2023

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The Backstory

Now, each winter season arrives with looming questions: will I be able to walk outside in snow with my all-terrain walker; will I be able to snowshoe; will I be able to ski (rather, to "ski"); will I be able to quench my thirst for spontaneous outdoor adventure? Etcetera.

So far, the cocktail of my questions, need to answer them and the call of the winter has led to two bad decisions. I ended up being lucky in both cases, but now find myself constantly checking myself and questioning my decisions, for the cycle of "bad decision/good luck" eventually runs its course. I have no interest in finding out exactly where that cycle ends with a "bad decision/logical consequence."

The first event was on a sun-drenched day just after a poetic snowstorm. In my mind, I had sacrificed enough by not venturing out during the storm, so I justified my choice to make an attempt at snowshoeing for the first time this winter, sans any help. It was that last part that got me into trouble. Independence is a thing for people with disabilities. With the ambush of my disability, I've learned that-- at least for me-- the gravity I give to my independence is proportional to the progression of my disease. It's a fine line between believing in yourself, having faith and encouraging yourself to live your best life, and accepting what has changed and what is. I'm exposing my immaturity here.

The second event was, again, after some delicious snow (maple syrup helps) and under a brilliant sun, when I decided to take my Kettwiesel out for a spin! The decision to ride wasn't what got me into trouble; it was my inability to overcome the urge to try the road less travelled-- a snow-covered maintenance road that led into the woods with about 4-5" of snow on it-- perfect for testing the boundaries of the Kettwiesel in snow! Turning into the woods, it was perfect...and then, a slight incline to add to the challenge. I was on a roll. It was great! Until it wasn't. I was stuck half-way up the hill in the middle of the woods. The sun was about to go down. When I am on the Kettwiesel, I can't safely stand up, let alone take any sort of step without my walker. I was SOL...


That was a few weeks ago, and we've since been graced with a few more snowfalls. Ever the student, with two bad decisions behind me and trying not to get to three, I've successfully resisted similar temptations since then. [But I have found a way to use a chair as a walker to get myself 10 feet off my porch, and just sit it the chair as the snow falls all around and on me! It's perfect.]

But I do feel like I'm a captive; like a child who is told that they can't use the perfect playground they stare at from the window. A thread of feelings ensues as I try to fend off Acceptance: I feel like a prisoner; I'm angry; I wish I did more of what I loved when I was able. A few days ago, I drove to a local ski area before it opened, parked in the empty lot, pulled out my walker and sat there-- marveling at the beauty of it all. And remembering, envisioning the magical boundless joy of it all...

A couple days later, I returned, this time in the afternoon when the ski area was open. I parked at the far corner of the lot, pulled out my all-terrain walker and walked along the base of the hill, in the parking lot. I saw a race team practicing. I ventured a few feet onto the snow, sat in my walker and watched...enjoyed, enJOYed.

I've since thought how such moments are at once joyful and torturous for me, and how I am drawn to moments like those. "Why does he go there?" Leah asks. I think of her question every so often, and the only answer that I can come up with is that it brings me more joy than pain. I hope it always will, but I also know it may not. I am still hoping to try to actually ski this spring if I get the perfect conditions and am able to summon a team to help me try. If the stars align, you will surely hear about how it goes. I began this post to share my feelings of being a captive, and how a couple bad decisions intensified those feelings. Yet here I am--thinking about possibilities...

Possibilities: 24 February 2021


If you have a few more minutes: "Living with an Invisible Illness" by Linda Chavers.

---- B L A C K L I V E S M A T T E R ----


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