All, Chronic Illness, Disability, Insecurities, Personal Experiences, Running, Transverse Myelitis

Replacing Running

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Trying out a track chair in 2015

It was late winter or early spring of 2015. My family brought me to some place where the Great Lakes Adaptive Sports Association (GLASA) was going to discuss adaptive sports with me… Such as wheelchair track.

They brought out a bunch of racing chairs and had me try one out. With assistance, I got in it, and in this first chair, I sat on a little seat with my legs out in front of me. A pair of thick, black glove-like things—which loosely resembled a pair of small boxing gloves—were taken out, and they helped me slip them on my hands before instructing me to lean forward and showing me how to push the chair. I found this first chair uncomfortable and awkward; it was difficult to lean forwards and push when I was in that seated position, and the pain in my legs and back immediately increased, so they helped me switch to a different type of racing chair. This one was red and yellow in color, and it was designed so that my legs were folded underneath me instead of being in front of me.

I immediately liked this design better; it felt significantly more comfortable. One of the GLASA coaches then brought me into the hallways and helped me practice pushing the chair.

When I gave it a push, it glided across the linoleum, and I was delighted.

“I like this!” I exclaimed to the lady and my mom. The speed was fun and exciting, and the concept was new and intriguing.

Maybe my situation doesn’t suck so much, after all, I thought.

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Running in 7th grade, before TM

​Unfortunately, the excitement didn’t last long. The thing is, I had way too many expectations going into it. I was trying to replace running. I pushed the thought of running, the grief of losing it, way back in my mind and covered it up with the thought of wheelchair racing. I continuously told myself that it was close enough, that I enjoyed it and it was good enough, and maybe I would grow to be just as enamored with wheelchair racing as I was with running.But I was wrong. I was lying to myself. I went to practices a few times a week and I competed in a few meets. I got a few medals at some of the high school meets, but I despised them because I knew they were pity medals…. I was always either in last place or the only one racing. I made it to state, too, but again, it didn’t feel like a real accomplishment considering the top 2 in each race got to go, and I was always either racing against myself or one other girl.The GLASA meets and practices were definitely better than the high school ones. Practices were significantly less repetitive and it was nice to practice with and race against a lot of other people. I even did a relay at regionals, and though my group ultimately got disqualified since we weren’t completely sure of how it worked, it was a great experience, nonetheless.

At regionals, I made it to NJDC (the National Junior Disability Championships), and though I didn’t end up being able to attend, that did feel like a real accomplishment, unlike making it to State or “winning” those pity medals.

Wheelchair track brought some amazing memories, and I don’t regret trying it. But I dreaded going to practices and meets. My arms hurt after pushing for just a few minutes, and not in the good, muscle soreness way that I actually kind of love. No, it was my nerve pain. It flared up and every push was incredibly painful, and that, in addition to increasing my fatigue, left me basically bed-bound for at least a day after each practice or meet.

And, more importantly, I wasn’t “good” at it. At all. Of all of the people I raced against, I was the only one with significant weakness and partial paralysis in my arms (from what I could tell, anyway). I was almost always in last place out of those I raced against. But I was also always told that I was technically in first place, only because I never raced against anybody with the same classification.

See, when it came to wheelchair track, I was just terrible. I didn’t really “fit in” with the other racers because I was terrible. Maybe that would’ve been different, had I gone to NJDC, because maybe there would’ve been other people in my class. Maybe I would’ve built up more strength and gotten better eventually. But I’ll never know that, and ultimately, I felt defeated. Ultimately, I just ended up missing running more than ever. I was watching my Cross Country and Track friends improving more and more, experiencing things that I’d dreamed of as a freshman and sophomore. They were surpassing me; I was left behind in the dust kicked up by their spikes, watching their legs take them further and further away from me. I was in last place, both physically and metaphorically.

 

I didn’t discover my love for running until 6th grade, and then I got 2 wonderful years of track, 5k races, and cross country before it was snatched away from me. So I took it back, and I got almost 3 more years of it… but then it was taken away again. A second time. And I just so desperately wanted for things to be okay. I wanted to be able to embrace the wheelchair and crutches, to become an amazing wheelchair racer. I wanted to be able to be okay with not running, because it’s too annoyingly pitiful to not be. I wanted my life to be a story of hope and perseverance rather than one that’s just… Sad. Dramatic. Real.It’s easier for everyone to pretend that this type of thing is okay. It’s easier for everyone to pretend that the thing you love most can be easily replaced if you have to lose it. Sometimes, I feel like it’s easier for able-bodied people to see our newfound happiness, to believe that we’re always “strong,” happy, and grateful, that we never grieve the things we lost because there’s nothing to grieve.

​Maybe I should be able to just persevere and learn to be completely happy with these newly discovered sports. Maybe I should be one of those people who greatly succeeds in an adaptive sport and is grateful that TM ruined my arms and legs, because it allowed me to discover that new sport. But, the truth is? This really isn’t the case (so far, anyway). It kind of sucks sometimes. And I know I’m not alone in that. My life isn’t some inspirational movie or book; it’s just life. It’s filled with hard stuff, much life everyone else’s life, and I do grieve running (and other things) all the time.

 

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Running with my little sister summer 2013
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Cross Country meet fall 2013

But that’s not to say that I don’t enjoy other things. As far as sports go, I can swim. Thanks to GLASA, I’ve discovered swimming, and I’ve found that I love it– far more than wheelchair track. I try not to compare it to running, because there’s really no comparison. Swimming is its own, separate thing, and I’ve found that it’s more enjoyable when I treat it that way. It’s not running. Not at all. It hasn’t replaced running as “my” sport; instead, it’s simply an addition. My heart is big enough for the two of them (that sentence was painfully cliché, but you know what I mean).The thing is, in general I actually am okay with everything that has happened to me. I’ve said before that I’m grateful that TM has had a huge impact on who I am and has given me so many friends, hobbies, etc. that I may not have otherwise had. I wasn’t lying about that; I still believe that that’s true. I just know that, no matter how hard I try, I will never be able to replace running, and therefore, it’ll forever be something I desperately miss. And that’s okay.

Chronic Illness, Disability, Insecurities, My Favorites, Personal Experiences, Running, School/Career, Transverse Myelitis

Every Day Changes Us

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Me skiing in December 2010, before TM
I was reading a book called Everything, Everything, and it brought up a good point: each and every person on this Earth is the sum of all of the events in his or her life. Everything you experience matters. What makes you, you is the collection of every second, every little experience in your life. Even the seemingly small things matter; take one small experience away, and you may be an entirely different person.
Life is weird that way. We often think about the future, but it’s vague; we have no way of knowing what will happen next. We have no clue what new obstacles life will decide to throw in our paths. It’s strange to think that you could be a completely different person in a year. I mean, during the next year, millions of things will happen. Some will be seemingly minuscule and change us in subtle ways. Others may be drastic. Right now, in the present, there’s no way of knowing. There’s no way of knowing whether your health will get better or worse, or if your anxiety will diminish, or if you’ll learn to be a bit more optimistic. There’s no way of knowing about new friends or significant others. There’s no way of knowing what these experiences will be, or how they’ll shape you.Five years ago, I was 13 years old and about to start 8th grade. I knew that I loved reading and writing and running, and I knew that when I thought about the future, it seemed pretty certain: I was going to run marathons and triathlons; I was going to be in band until college; I was going to do theatre through high school; I was going to grow up to be a speech therapist.

 

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My mom and I December 2010, pre-TM
At least, I thought so.

 

I never would have expected to be paralyzed a month later. I never would’ve expected that I would end up letting go of every single one those aspirations. I never would’ve expected to love to sing, and I never would’ve expected to love to write in a completely different way. I never would’ve thought that I’d have the friends I have. I never would’ve thought that I would be who I am today; though some of the same traits remain, I often feel like I am, in many ways, different than that girl who lived 5 years ago.

 

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In the hospital at TM onset, August 2011

 

I held onto that speech therapist dream for so long. When I was around 8 years old or so, I thought about future aspirations, and I realized that speech pathology sounded very interesting. I was proud that I’d known what I wanted to be back when I was just a little kid and stuck with it until my senior year of high school. I thought I was certain.

The thing is, in the back of my mind, I knew it wasn’t right. I knew that it wasn’t truly my dream anymore; I changed too much. But I needed something to be constant in my life. I needed to hold onto something from the past me. I needed some reminder that I was still the person I was when I was 8 or 10 or 13.

When my band dream was crushed, and I let go of my theatre dream, and my marathoner dream was shattered…. Well, it felt like way too many pieces of me were missing. And I needed to hold onto one of the last pieces: the speech therapist dream.

So that stayed constant. That is, until college got closer and everything got more and more real, and I realized that that was not who I was anymore. Being a speech therapist no longer appealed to me in the way it used to.

I was too changed. I needed to do something different. What really interested me most was something more in the medical field; I felt like I could really put myself into that type of job.

That’s why I started thinking about audiology. But with audiology, I was still trying to hold onto that old piece. I held onto that for a a few months, because it was comfortable; it was still the same major as speech pathology, so if I wanted to, I could easily go back. Audiology sounded fairly interesting, but it was still similar to speech path, and it didn’t feel exactly right. I couldn’t truly see myself enjoying it as much as I could with something different.

So I let go. I forced myself to let go.

 

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Singing at Solo & Ensemble with friends in 2015
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Reading my poem at “Writer’s Week” 2016
​I stepped into a whole new world, finally accepting that I’d changed and finally accepting that it’s okay to lose pieces of yourself. Because, the thing is? Those pieces are quickly replaced with new ones. They may be a lot different, but they’re still good; just because you let go of some, doesn’t mean you have holes inside of you.As those experiences—both big and small—start adding up, everyone grows and matures greatly. It’s impossible to be the same person you were as a kid. As we grow and are influenced by so many experiences and other people, our personalities change (sometimes a little bit, sometimes drastically) and are molded into who we are now.

So I’ve decided that being a physician assistant is what best fits with who I am now. And after probably 10 years of “knowing” that I wanted to be a speech path, this sudden change is very scary. I feel like I don’t quite know who I am anymore; my future career felt like a big part of who I was since it was the same for so long, and now it’s suddenly different.

But we’re all trying to find ourselves right now, I think. At 18, it’s hard to know exactly who we are or what we want in life.

And that’s okay. Because we’re still young; we’re still being changed ever-so-slightly by those little experiences day after day after day. ​​

Chronic Illness, Disability, Personal Experiences, Running, School/Career, Transverse Myelitis

Why I Run

Why do I like to run?

I mean, why would anyone?

I scroll through social media and see all these memes about not running. I look at them and just have to shake my head, because those who don’t run are greatly missing out.

Sure, it’s hard work, and definitely ‘fun’ at first glance. To me, though, it’s perfect.

I don’t run to stay in shape; I run because running is ME. I feel my feet hit the ground and feel it align with the rhythm of my breathing. I feel hot and sweaty and disgusting, but that’s just the best feeling. I feel aches and pains throughout my body, as all runners do, but I push through them with ease because I have learned to, like anything, and I’m strong. Runners are strong.

 

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Me running in 7th grade, before TM
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Me running in 9th grade, after TM

 

 

 

 

 

 

 

 

 

 

I’m proud to call myself a runner, and I’m proud every time I finish a race, whether it be 800 meters or 6 miles. I’m proud of the technique I have developed in running different distances, a technique that works.

Not every run leaves me feeling fulfilled, and every time that I leave without satisfaction just leaves me hungry for more; I know that I’ll do better next time.

And racing. Racing is stressful, and sometimes I wish that I hadn’t signed up for it, but once I’ve started, I fly. I dodge and zigzag through and pass people, some races more than others. When it’s track or cross country, my peers, I waste a little energy whispering “good job” as I pass, because every runner, even my competitors, is my team. I’m not different to them, and they’re not different to me. We’re simply all runners. We all love it, and we all spent a heck of a lot of ourselves getting to where we got.

Running, in a way, reflects TM, and it definitely prepared me. For a year and a half I studied for
an important test without knowing it, and I’m glad I did.