Update: This post has also been featured on The Mighty! Check it out here! Everyone who meets me likely suspects that I have a disability, unless they think that I use an insanely expensive, custom wheelchair for fun. That plus my chronic illnesses have impacted my life a lot. Some of that impact has been positive. I mean, I've befriended a lot of awesome, fellow disabled and/or chronically ill people who I'd hate to have to live without. And I suppose there's the whole "I've learned to appreciate things" thing, and many of my current hobbies may not be in my life without it, etc etc. But that's not quite what this post is about. It's hard to deny that my GPA and AP exam scores could've been much higher without Transverse Myelitis, and I could've participated in so many more extracurriculars. Where would I be in my running career if I were still able-bodied? Plus, I've dropped more classes than I care to admit during the last 5 years because, between hospitalizations and long flares causing me to miss weeks of school at a time, it can be incredibly difficult to keep up sometimes. I've tried my best and so far, for the most part, I haven't been unsuccessful. But it hasn't been easy, and I feel like I've barely done anything other than school; after sophomore year, my only extracurricular was choir, and I never got a job in high school. I rarely even hung out with friends during the week, because I needed a 2-hour nap after school every day in order to have just barely enough energy for homework. Meanwhile, so many people are able to do it all, and as a result, I feel so inadequate. I feel like they've surpassed me in every way because, for everything I accomplish, my [incredibly smart, gorgeous, and driven] friends have achieved that plus 10 other amazing things. And that was just high school. If my freshman year of college taught me anything, it's that life just keeps getting more and more difficult as time goes on which is, admittedly, the exact opposite of what I hoped for. I'm still only 19, so I know that I can't speak for all stages of life, but I can express my experiences and thoughts and fears. See, right now, I've been thinking, and I realized just how scared I am for the future. There are many reasons for this--some most human beings can relate to--but at this moment, the most prominent is my fear that I won't ever get a good job. I just so desperately want to be a Physician Assistant but, realistically, will I be able to get that job? Or will all of that schooling (assuming I make it, which will be a battle in and of itself) be for nothing? You might think that this is an irrational fear, especially if you know me well and therefore actually see me as an intelligent, "normal" human being. But as dramatic and negative as I can be sometimes, I know that this one is valid, and I'm not the only disabled person who worries about it. I'm afraid that employers will take one look at the wheelchair (and/or crutches) and sucky, demented hands and decide that I'm not competent. And it's true that, technically, I probably can't physically bring as much to the position as my able-bodied counterparts. But I'm smart, and I'm determined, and I am able to adapt. I mean, just ask my mom-- At 13 years old, newly paralyzed, with no hand function, no right arm function, and very, very little left arm function, I was stubbornly determined to learn how to feed myself. In 8th grade, I shakily scribbled most of my own notes with my weak, non-dominant hand, refusing to rely on the assigned note-taker next to me. At 14, after doctors had told me that I'd never walk again, I ran and quickly became the fastest freshman girl on the cross country team. At 15, sick of relying on other people, I figured out a way to tie normal shoe laces by myself. I'm not saying that I'm super amazing or anything; I'm just saying that I know how to adapt and I know what I'm capable of. I'm not in any way scared that I won't be physically able to be a PA… I'm just afraid that other people will think so, because they don't know me at all. Instead, all they'll see are my physical limitations (which just seem to be getting worse and worse), and I'm afraid that my able-bodied competitor will be chosen over me every time, despite the fact that it's technically illegal to discriminate in that way. And even if I manage to get a job… Well, the fears don't stop there. One of my professors is giving me a D for this past semester because I missed the last three weeks of school due to being sick and in the hospital, and he thought that I had too much makeup work to be granted an incomplete and finish over the summer. This is sucky, but overall not really that big a deal. However, what if next time, instead of a low-level course that I technically don't need for my degree and can easily retake, it's a job? What if I'm eventually fired because of things I can't control, because I'm "sick" more than most people? I mean, I can try my best to not require hospitalization and work through days when my pain and fatigue flare so much that I can barely lift my head off the pillow, but I already tried that this year and, well, you all saw how that worked out for me. Trust me, this isn't me trying to throw a pity party or look for the worst-case scenario. I know that many people all over the world have to suffer through far worse problems than this. And normally, when it comes to my abilities, I don't say I "can't" do things (besides, like, run. Or jump. Or do a chin-up.), because I just hate feeling weak and especially hate when people pity me. But these fears are just becoming increasingly real as I get older--especially as my body fails me more and more--and I hate that I have to be afraid that other people's ableism could possibly inhibit me from following my dreams. I wish that more people saw me for who I am. I don’t see myself as particularly "strong" or "inspirational." I mean, I am disabled. I am chronically ill. I definitely won't deny that, as those things are a huge part of me. But I'm also just a 19 year old girl who loves singing, writing, and swimming. I am a college student who is fascinated by the human body and modern medicine. I am a daughter and sister who loves and values her family more than anything else in the world. I am sensitive, empathetic, "too" kind, creative, hard-working, stubborn, independent, determined. Yes, my disability is a part of me, but it isn't the only part of me. I just hope that the people I meet--employers, bosses, colleagues, society--will eventually realize this, because I'm just so, so sick of fighting against a world that's not built for me. [Side-note: Someone should seriously put on a production of Les Mis featuring disabled people so I can be Eponine... Not that that's a huge, unrealistic dream of mine or anything..... Haha. Ha.]
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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. 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. 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. 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. You dream.
You dream of having the "perfect" body. You dream of your eyeliner being even. You dream of finding "Mr. Right". You dream of a face clear of acne, Of being beautiful enough, Of being funny enough, Of being skinny enough. Us girls? We dream. But these are all generalizations, Of course. Dreams fed on stereotypes. Whether we all dream these kinds of things Or not, They're just surface-level dreams. Deep-down, We dream Different dreams; We long for different things. Deep down, You dream of being GREAT. We dream of being doctors who treat cancer, Of being the scientists who cure it. We dream of being astronauts, Police-women, Firefighters, Professional chefs, Football players, Engineers, Surgeons! So.... What stops us? Why do we seem to dwell on the surface-level "dreams? Why do you tell yourself that being GREAT Is less possible than clear skin? Who Says You Can't? Who makes you out to be weak? To be whiny? To be shallow? Who says that us girls Dream only of having the "ideal" body? So as to... What? Get a man? Who says that our Futures Are built upon the ideals Of men? The things that society says are beautiful: The high cheekbones, Long hair, Flat stomach, Thigh gap, Long eyelashes. The lack of muscle on our Arms and legs, No meat on our bones. Society believes we need these things So a guy will find us Attractive. So we can have a family And be a housewife. Why can't we define OURSELVES? Why can't we base our lives off of Ourselves? Off our own ideals? Why can't our goals, Our desires, Our wishes Be based on our own successes? You're living in a man's world, honey. We're living in a man's world Where it's more realistic To dream of fitting a mold, Where it's more realistic to be Ordinary. They want you to be inferior. They want you to be ordinary. But you're NOT. You don't have to be. You go out there and show them That it's YOUR world, That you are, in fact, Extraordinary. You go out and show them That you're MORE than mediocre. You're smart. You're driven. And you have just what it takes To make the world Believe in You And your Dreams. Today I blew off working on a big English essay to help my little sister learn to ride her bike, going to lunch with my mom and friends, and holding my sister's hand while she got her ears pierced.
There's part of me, probably the bigger part, that cringes when I think of how much time I wasted, time that could have been spent perfecting that essay. But you know what? In reality, that time was much better spent with what I did. In 20 years, what will I likely remember more: the problems in Les Miserables, or my baby sister growing up? Hopefully the latter. Why is our society like this? Why have we decided that it's ok to make the average high school student's life literally revolve around school? Don't get me wrong, I think school is really important. Learning is important, and that's the primary focus of schools. But the whole system has evolved into something more horrifying. It's terrible that kids (yes, they're still kids) think that they can make or break the whole rest of their lives with what they do now, in school. Yes, learning is important. But stressing out every single moment of every single day about tests, grades, homework, etc., is not. What's important is to take school seriously, yes (because it does matter and it is important), but also to take a break once in a while. It's important to lift your head up and take that breath of fresh air in the form of other things you enjoy: music, drawing, writing, spending time with loved ones. Because if you don't, you'll surely drown. I'm likely not going to change my ways because of this. Tomorrow I'm going to spend hours finishing that essay, I'm sure. It'll probably cut into most of my sleep! But I'll remember to realize that experiences are okay. Spending time with family is okay. Maybe I'll take a break, and we'll try that bike one more time. (Update: A year later, I read what I wrote above, and realize that I got an "A" on that essay. And my sister has mastered the bike.) When hope
Has faltered; When the last Straw is gone; When the world is dark, Deep clouds That cover The Sun; When the towel's Thrown; When loneliness Has grown; When it seems there's nowhere, Nowhere to go; When the answer to all Seems to be 'no'; Just Listen to the wind chime, Remember Life's a mountain to climb, Look at All that's in its prime, And try, Try One More Time. |
AboutHi, I'm Jen Starzec, and I'm 19 years old. I write a lot about disability and chronic illness, especially related to my main disorder, Transverse Myelitis. I also have a lot of poetry and some short stories. Enjoy! Categories
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