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.] See my feet? They look pretty normal, right? Well, you can't tell, but they are on fire. They burn so badly, I can't sleep. It's midnight, and I have a 9am class, but I've been lying awake for an hour because my feet burn. Then, when I splashed cold water on them in an attempt to relieve the burning... they started feeling like what I can only describe as a mixture of itchiness and rug-burn. So now my feet are also suffering through that sensation, in addition to the initial fire-like burning. This is only a small, small part of the reality of living with Transverse Myelitis. You wouldn't know any of this by looking at me. If you glanced at me feet, you'd just see... Feet. Completely normal-looking feet. You may notice a toe spasm here and there, but overall, there doesn't appear to be anything wrong with them. You could say that I'm lying or exaggerating. I mean, after all, there is no way for me to prove otherwise. I can't put you inside my body for a moment to feel the burning for yourself (oh, how I wish that were possible). So, I guess you'll just have to take my word for it. These normal-looking feet give me problems every single day; I'm constantly having to deal with different unpleasant sensations and pains. And that's just one small part of me. My entire body is constantly ridden with different sensations such as stabbing pain, burning, "electric shocks," pins and needles, phantom itches, numbness, achiness, etc. Trust me, it sucks. I've been dealing with this stuff for over 5 years now, and it's only gotten worse rather than better. But I'm dealing with it. I know I can handle it. But sometimes, when my burning feet are keeping me awake late at night, all I want is for it to go away just for one night so, for once, I can actually sleep peacefully. 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. 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. 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. 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. 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. This poem is dedicated to my friend Alex, who also battles TM. She helped spark this poem; we were having a deep conversation about this topic a couple weeks ago. She appears in this poem as "a girl". :p
Our TM stories are very different, and yet we can still relate to each other in many ways!! I thought having another story interwoven into this poem would help get the point across, since the "little thing" vary from person to person. :) Enjoy! I'm proud of this one. From the time I could hold a pencil, Could form shaky letters with the graphite tip, Only semi-legible, I loved to write. I'd write stories, Imaginative and mysterious, About wizards and dragons and princesses; About talking flowers and animals, and taking a trip to the moon. When I was a child, I had a routine with my father. A few days a week we'd practice pull-ups in the basement. He taught me a lot about life with those pull-ups: "You can always try to do one more." He taught me to push myself, and push myself I did, In every aspect of my life. I loved roller coasters, Especially ones With the biggest drop. I loved the feeling of my stomach in my chest And screaming loudly with my arms in the air. I know a girl Who loved fuzzy socks and hot showers, And skipping and dancing while she walked. When you're paralyzed, When you have a chronic illness, A lot is taken away. I can't walk well; she can't at all. We can't run or ride a bike, And both of us Have overwhelming Pain and fatigue. We're teenagers, And can't keep up with our homework, Let alone our friends. But that's not what puts a lump in our throats everyday. When I think of the little things, Like writing with my right hand, Or doing pull-ups with my dad, My heart Aches. When I think of riding a roller coaster, When I think of the pleasant drop of my stomach Instead of dizziness and pain That lasts for Hours, I feel sick. I miss them, The little things in life. When people look at someone who's disabled, When they find out what ails them, They say that they'll Learn To appreciate the obvious Like walking and running. But that's hardly what people take for granted. That girl Cannot feel the warmth of the water dripping from the shower head On her legs; It's something most of you experience Every. Single. Day. No one would give it a second thought, And yet she'd kill to be able to feel it Just once more. It might not seem like much, Since she can't feel the wind traveling through her hair As she runs, Or move anywhere Without pushing the metal rims On hard rubber wheels. And yet, When she sees the water Slashing across her lifeless legs Every day, The warmth is what she imagines and longs for. Not walking. You write with your dominant hand Every Single Day. You use it to write out checks, To scribble out a grocery list, To write a quick note to your mom: "I'm at Jane's house". You've written like that since kindergarten; There's no reason to give it A second thought. But I miss it. I miss writing with my right hand, But I can't. Paralysis has ruined it And it's doubtful it'll be "Fixed". Yes, it's the little things that hurt the most; We may never know them again. It's the little things that make my heart ache, That make me the most nostalgic. It's the little things I most often wish to have back. The minuscule, "Unimportant" Things are the ones we do Every day. The things that are part of a routine, The ones we are most used to, Are small puzzle pieces in life That leave holes When taken away. And we want to find those pieces, To put them back where they belong Because they create a sense Of normalcy. Because when so much of your life has been taken away, When so much is missing, You crave the little things Day After Day. When you're diagnosed with TM (or anything similar), and you're paralyzed, you freak out and wonder if it's forever. Because being paralyzed, being "trapped" in a body that can't move the way you want it to, seems like the worst thing ever. You don't think it could happen to YOU, and when it does it's scary. But it's easy to adapt to, easy to get used to. Sure, it's not ideal; I mean, no one wants to be in a wheelchair. No one wants to be unable to walk, run, jump, and all that. Nobody wants that part of their life taken away, but when it happens, it doesn't end up being that bad. The pain, fatigue, flare-ups, etc. are what really make you miserable. You can do anything an able-bodied person can do when you're disabled; it just takes some creativity sometimes. But the other complications are what really hold you back and make you feel trapped. That's what bothers me daily, what I wish every day to escape from.
As a young child, Your biggest worries Are the weather- Will it rain today?- And which annoying sibling Stole your toy. As a young teen, Your biggest worries Are clothes And friends And homework. Other than that, You have your life ahead of you. What do you want to be when you grow up? You get many more years To think about that. Who's your best friend? It may change soon, it may not. Your answer might not be what it was a month ago. But you have fun regardless, Fun with the day's BFF. What will you wear for picture day? Will it be a dress or a skirt, Jeans or leggings? In a year that will not matter; You have your life ahead of you. No problems as a young teen, Young and in middle school, Or as a little kid, Playful and innocent, Should last. They're temporary. You're young, you're naïve. You think it will last, The care-free nature of childhood. You feel old, And yet you don't truly need to worry. You shouldn't have to worry about Adults in white coats And stethoscopes, Thin white sheets On a button-filled bed, Tests and tests and tests To tell you what's wrong. Pills to make you feel better. You shouldn't have to worry about Whether or not you'll get better. Whether or not your life will begin again, Whether or not these fears will last The rest of your life. You don't think they will last. Why should they? They never have before But slowly you are forced to realize, As a child, That they're not going to leave. They'll stay with you forever, Unlike 6th grade picture day Or a failed math quiz. Unlike a lost toy, Or wet clothes. They're forced to grow up, Forced to mature beyond their time. One day We might find a cure, A cure for illnesses Affecting children. One day We might find cures, And save the innocent, necessary childhood Of many. We can only hope. And believe. And pray. And be aware. American Revolution. Civil War. World War I. What do they have in common? Pain. Violence. Suffering. Fatigue. Fear. My war Is not unlike those. There are fights. All day every day, I battle. I battle the enemy, Hoping to win. It lasts a long time. I get no sleep; I am always tired, But the pain Keeps me awake. Strength is needed, Strength to thrust the sword Or hold up the gun. Strength To fight back. Energy is drained. Why so quickly? Energy is drained, And I wish I could take a break To re-charge. Can't concentrate On anything else. I can't leave the enemy To fight me, defenseless. It won't win. It can't. Every second spent distracted, I am hit And wounded. Pain Shoots through my body. I am knocked down, But I get back up. Energy is drained Some more. I just want a break, Just for one second. The lights dim outside, And it's ready to sleep, Ready to forget the battles. But the enemy attacks At my weakest point. Why didn't I see it? I spend the night Fighting some more. And the cycle begins, Everyday more exhausting And painful Than the last. When the sun comes out, When I see a moment of light, When I knock them down for just barely long enough, I see What makes it all worth it. I see What I'm fighting for. I fight For my dignity. For my family, For my friends. I fight, To help others Who battle as well. I fight For my pride, For my God, For my life. And I am grateful That I have reasons, That life is not just an endless battle. For the battle is inside of me, And I cannot escape. |
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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