The world is an intricate, never-ending maze. Every twist and turn is a reason to question one’s own sanity while trying to find ways to adapt, and sometimes, conquer. There may be a way out, but it doesn’t look like a way out at first. Getting lost is real until all apparent paths have been rendered useless.
From a very early age, I’ve found myself in the middle of this maze of effectively living the life I’ve been given. That has meant learning how to strategically place up a fork and spoon in between my fingers to feed myself, figuring out how to turn on a light switch, and navigating my wheelchair through a narrow doorway without ripping the frame off. All these everyday things, among others, proved to be monumental tasks at one point or another in my life due to cerebral palsy.
When I did these small tasks, no matter how long it took or how awkward I looked, I was fulfilled in a very personal sense. I was simultaneously learning to play an instrument and perfecting a dance routine every time I figured out an effective way of doing something. That is the hard truth of living with a disability. I’d be wrong if I didn’t try to do what I need to do to be comfortable in my own skin while being fully aware that able-bodied individuals do many of the same things I do every day—just at a more fluent, quicker pace.
However, that doesn’t stop me from trying to figure things out for myself.
I do simple, everyday tasks a hundred times over—not because I like doing them, but because I usually have difficulty due to my lack of speed or physical limitations. I always try to discover a trick to be able to do something on my own, or with little assistance.
By the same token, I also try to keep in mind that most people don’t have my set of circumstances. They might not have to think about the width of a doorway, the height of a curb or if they can reach their bedsheets to pull up on a cold night. I respect the fact these thoughts likely never cross people’s minds. At the same time, however, I hope others respect that I do think about little things like these because they help me determine how I live my life.
There’s something incredibly invigorating about using my own brain and two hands to accomplish something. I can guarantee it won’t be perfect or flowing in a steady rhythm like the way I envision it in my mind’s eye, but it will be done. I’m constantly chasing the feeling of personal accomplishment—and admittedly, I love when it rushes through my body down to my fingertips.
The process isn’t always pretty or smooth.
There’s a lot of trial and error involved. It could be as simple as brushing my teeth one day. The next day, however, it might be something more complicated—like plugging my phone into my computer so it can charge. Both tasks require both of my hands, so my mind goes to a place where all I’m focused on is that toothbrush or that cord. Ten, twenty minutes later, the mission is accomplished—but not without acknowledging exactly what it took.
I adapt to whatever situation I’m in because I genuinely don’t know any other way to function. I’ve accepted that I’m often not able to do things the way other people do them—the way they’re supposed to be done. The feeling radiates all the way down to my toes, and I don’t expect anyone reading this to reciprocate or even understand how powerless and draining it truly is.
Most of the things I do on a daily basis take a lot of my time and energy, which is probably why I’m so patient. I know for some people, that might not seem noteworthy because everything takes time—no matter who you are or what your situation is. I also know, however, that if I don’t adapt to my disability, it will take over and run my life.
As I get older, I realize I’m more honed in on adapting my perspectives about my disability from the sheer fact I have something that affects every single aspect of my existence. From the way I eat to the way I scout out handicapped parking spaces while a designated driver is at the wheel. That’s an incredibly bitter pill to swallow, but it’s so small compared to the view I’ve grown accustomed to while sitting in my chair.
I imagine others might have to adjust their view when they step into my world. Instead of looking down, they’d have to be willing to look up because everything is bigger and taller when sitting down. They’d also have to be willing to adapt and level the playing field—not just for themselves, but for everyone.
I really want people to feel like they could jump into my world, and feel what it’s like to have society pass you by, to think they don’t have a voice or a place in my universe. When in truth, they definitely do have a place here. In my world, no possibility is deemed “useless” because I wouldn’t have the life and career I have if every path were a straight line leading to comfort, success, and most importantly, peace of mind.
Life doesn’t come with a blueprint.
It doesn’t come with a way to escape the maze. Life gave me a reason to find my own way—and I’m so grateful it did!
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