But look at these pictures. I took these pictures with one of my best friends, Sarah Todd, who's like a little sister to me and also happens to have my same condition: Transverse Myelitis. These pictures were captured during a photo-shoot in the city, and though I initially wanted for my chair to be absent from every picture, I'm glad that that didn't end up being the case, because.... Looking at these pictures, I don't see a dumb piece of junk that I'm chained to, a burden that doesn't like to fit in people's cars and draws the attention of every passerby. No, instead, it's utilized in a nice way. It's PART of the pictures, a part that actually made them better and even more adorable than I could ever have imagined.
Walking is overrated. Yes, people stare and are generally super annoying and ignorant. Yes, that chair can be horribly inconvenient at times. But it's a part of me. Though I'd LOVE to recover more, I now realize that walking (...and running...) isn't the end-all-be-all. So thank you, ST, for suggesting these amazing, adorable poses. And thank you to our photographer, for not being scared to make sure that we utilized that chair. Thank you for incorporating it as a fun, important prop that belongs in the picture, rather than just simply an obstacle to be ignored and avoided. I needed that reminder.
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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.] "She's so weird..." I was 9 years old and at my best friend's birthday party. I was having a great time until a girl I hardly knew leaned over and whispered those words to my friend. She was talking about me. One would think that I'd be over it 10 years later. I'm well aware that I should be, and I've tried hard to forget that moment, but I can't. It dug deep. That little girl took a knife and stabbed me, etching those words deep into my skin where they would remain forever. It hurt then, and it hurts now. Sure, the pain has faded greatly; the wound has been reduced to a scar. But it still stings a little when I look back on it, and I have a feeling that this will remain the case for the rest of my life. After that party, I became more self-conscious about my actions and personality. Those words prompted me to begin to analyze everything I did or said. It likely contributed to my frequent self-loathing and why, deep-down, I'm always paranoid that everyone thinks that I'm too weird or annoying or awkward or just overall unlikable. "You're such a whiner crybaby!" "You're suffocating me." "You're so annoying." "You're a terrible friend." "You've never done anything for me." "Nobody ever wants to talk to you." "You act so fake." If the words that hurt most left physical wounds, those are just a few phrases that would appear on my skin. All of those, and many others, have cut deep into my self-esteem, causing me to try hard to alter my actions and change my entire personality. And not in a good way. We all can use constructive criticism and we all can improve ourselves because, of course, nobody is even close to perfect. But these things, most of which were said to me by friends, are not constructive criticism. The snippets may not seem like it, but I know that within the context of the situations, they were harsh and unnecessary. All of those words have taken away more and more pieces of me, making it harder and harder to recognize my good characteristics. Now, I constantly worry about what others think of me. Now, I try hard to please everyone. I try hard to be 100% likable. But, of course, I have failed. It's impossible to make everyone like you and, unfortunately, I think I crack most when I'm with the people I love, because making strangers and acquaintances like me is a near-impossible task that is draining and entirely too much pressure. I know, I know: "Sticks and stones may break my bones...." Am I just overly sensitive? I don't know. It's entirely possible. But also, as much as we pretend that words don't hurt and that we're unaffected by things that people say, that's just not true. I know that I am not the only person with deep, permanent emotional scars. I know that I am not the only person who has, on occasion, been reduced to emptiness because I so desperately wish that I could be someone else, someone who wasn't weird, fake, and a crybaby. I know that I am not the only person who constantly over-analyzes every single interaction I have with other people. To the people who said all of those things, they probably seemed small. In some cases, hurting me was not the intention, and many of those people likely don't even remember saying it. I won't pretend that I haven't said hurtful things, myself; as much as it pains me to think about it, I'm sure that I've unintentionally caused scars in other people, too. But the point is, we can't just decide what does and doesn't hurt other people. Words can make someone stop smiling or laughing because someone has told them that the way they express their joy is weird. Words can cause someone to stop doing their favorite hobby or activity, for fear of others' judgment. Words can—and do—change a person's entire life. 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. I'm dedicating this poem to one of my best friends, Sarah Todd :) She's been through a lot the last (almost) 6 years of her life, but has found new passions to replace the holes left by the old things she can no longer do. ST has found a way to pick up the pieces and put herself back together; I admire that a lot!! <3
01/28/2017-- I always hated the last stanza of this poem. Kinda awkward. I finally changed it. Still not perfect, but a lot better, in my opinion. :) Pieces, broken cov'ring the floor; A trail of me lead to the door. I couldn't keep together, me; When a wave hit— disparity. Nobody knew, because my face Was happy, smiling, full of grace. But inside of me was a sea Of anger, of sadness, not glee. Was drowning in that water that Consumed me; chased me like a cat After a mouse. No one could see The storm, the war inside of me. So pieces, on the floor they lie; Could leave them there to petrify. Or I could pick them up, maybe, And show the world I can be free. I lie awake When sleep won't come And think. Think about life, How this essay And history test And physics problems Won't matter a year from now. When I think about the future In this way, It's blissful. It seems So simple, So much happier And brighter. The future is unknown, and As long as it stays distant, I can pretend It'll be perfect. But I'm kidding myself. For when I think of the pain, When I remember that It likely won't leave, My life Seems long, and The future looks bleak. The future is unknown, and When I think of it in this way, That there will be many more Arguments, more Stubbed toes and hangnails, Broken friendships And betrayal; More sorrow, More grief, More disappointment, More pain, It looks no different. Life seems an endless battle, Day after day after day We all fight. This will never change. But I think about the good things. There will be more hugs, More kisses, More birthday presents and Wishes. More sweet chocolate, Sipping lemonade in the sun, And heart-warming books. More love, More happiness, More warmth, More fun, More LIFE. And the future no longer looks bleak; Life no longer seems too long. I don't dread what's to come, because The future is unknown For a reason. As I lie awake I think About what I look forward to, And smile as I drift to sleep, And dream about the future. 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. Personally I find this slightly cheesy, but that's ok. Also, this was supposed to be a song as well, but again I got lazy and just tweaked it to be a poem. :) Appreciate
The things That are Loved. For those things Can be taken Gone In an instant. In a snap of fingers, A puff of breath, A tick of a clock, A skip of a rock. Keep the seconds Of the life that we live Counted. Because everything we know, Everything we have, Everything we love, Can go. Take care of the things That can be gone. They can leave In a snap of fingers, A puff of breath, In a tick of a clock, The skip of a rock. If we appreciate Anything at all If we appreciate Things big and small If we count the seconds Of The Life We live All the time, We'll know That Everything we love Can Go. The flower
In the flower patch Is different. It lies Golden yellow In a sea of blue. It has no one, No one to compare to, And it feels Alone. The others, The sea of blue, Is one. Together, They decide. Together, They mock The poor golden flower. The young boy In the schoolhouse Is different. He is peaceful In a sea of chaos. The boy goes out, Out to the flower patch, Crying. One by one He pulls Every blue flower As golden one Watches in horror. Across the flower patch He sees a girl A girl who's peaceful. He takes the sea, The sea of blue flowers, To her, And together They walk into The sunset. The golden flower No longer looks At the peaceful Boy and girl, As the sea of blue Is now gone, Revealing What Was Hidden. Revealing Another golden flower. |
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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