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

Fighting a World Not Built For Me

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.]

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

Every Day Changes Us

skiing
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.

 

dec2010
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.

 

mehospital1
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.

 

singing
Singing at Solo & Ensemble with friends in 2015
writersweek
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. ​​

All, Insecurities, Poems, School/Career

Dreams

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.

Friendship, School/Career, Short Stories

Light in the Darkness

My friend, Angela, asked me to write something for her. I don’t know what sparked this story, considering I’ve never experienced divorce or anything like that. This story is entirely too dramatic, but that’s okay! 🙂
Blues and greens and browns swirled from the tip of my favorite brush as I stroked it across the canvas.

I didn’t quite know what the end result would be. I never knew. All I knew was the calming peacefulness that filled me while I painted.

It took my mind off of things. Off of… Well, I didn’t want to think about it.

“Chloe? You’ve been in there all week. Please talk to me!”

I ignored her. She was trying to drag me out and make me think. But it was too painful.

I squeezed a tube of red paint. A satisfying blob came out. I swirled it with a little white.

“Chloe, you can’t stay in there forever. Spring break ends tomorrow… You have to go to school.”

Ignored once again. I continued to cover the canvas in small, delicate strokes. I heard a large sigh from behind the door, and footsteps fading as my mom gave up and walked away.

~~~~~~~~

It’s amazing just how quickly one’s life can turn upside-down.

One moment, I was happy.

The next, I was shattered.

School that day had been normal. Boring, as usual, but I was glad it was Friday, glad spring break was just hours away.

I remember the weather. It had rained earlier, but was sunny by the time school was out.

My bus splashed through some of the remaining puddles as it approached my bus stop.

I got off and skipped home. Spring was my favorite season, and I was happy it was finally here.

I opened the door and kicked off the shoes.

“I’m hoomeee–” I loudly announced, but stopped in my tracks.

My parents stood stiffly in front of me. Both were paper white, lips in a straight line. Hands awkwardly at their sides.

“Is everything alright?” I asked, looking from one parent to the other. My dad glanced at my mom, and she nodded stiffly. They gestured at me to follow them, so I did.

We approached the dining room table, and I sat down next to my little sister and older brother. Nobody said a word.

“I need to talk to you all about something,” my mom said softly, slowly, after taking a deep breath.

All of a sudden, I knew what was coming. Scenes flashed through my mind, memories of shouting and arguing after dark, keeping me up at night.

“You- you’re getting divorced,” I whispered, looking again from parent to parent. Tears flowed from my eyes when neither one of them said I was wrong. My mom just nodded stiffly.

“We just need you guys to know that we love you all very much, but–” my dad started, rehearsed. I stood up, turning my chair over. My little sister, Cassie, flinched at the noise.

“Don’t give me this cliche crap of a speech that you found on the internet. Shut. Up!” I screamed, running up to my room. Slamming the door. Turning the lock. Spilling tubes of paint as I clumsily tried to squeeze them onto the easel. Swirling paint around to form a picture, any picture, even though it was morphed by the stream of tears.

I didn’t come out of my room for the rest of the week except to pee. I didn’t eat. I didn’t sleep. I just cranked out picture after picture as my mom pleaded me to come out for just a second.

I dreamt of this scene the last night of break. I woke up screaming, relieved for a second that it was just a dream. Then filled with dread when I realized it wasn’t.

~~~~~~~

I did go to school the next day, but I left the house without a word. I put on a mask at school, fake joy for all my friends. I joked and laughed with them, hiding the pain.

When I got home, though, I was mute again. I walked hurriedly up to my room, backpack, coat, and all, and shut and locked the door.

And I painted. And painted.

I didn’t do my homework. All I was willing to eat was lunch at school, and the occasional bite of dinner Cassie or my older brother Cole would slide under the door.

The teachers started getting concerned. But I didn’t care. My parents threatened to take me to a psychiatrist, or to a counselor at the very least. But how could they, when I was locked in my room?

All that kept me sane was my painting.

The divorce became official two months later.

This life I had chosen for myself lasted three whole months.

~~~~~~~

“Did you sign up for the art show, Chlo?” My best friend Eryn asked me one day. It was a couple weeks after court, and about two and a half months since I’d first gotten the news, and my life had changed forever.

I shrugged at Eryn’s question.

“Not yet. I don’t know if I want to do it,” I muttered. Eryn sighed.

“Hon, this can’t go on forever. I know you’ve been through a tough time and that sucks! But you need to get over it.”

I shrugged again, fighting off tears. I knew she was right.

“I- I guess I’ll do it,” I said softly. My friend smiled warmly and gave me a big hug.

“I’ll help you get through this. Don’t worry. Now, first things first…. Let’s get you signed up for that art show!” Eryn said, taking hold of my hand and dragging me to sign-ups.

~~~~~~~

For awhile, I simply pushed the thought of the art show to the back of my mind and attempted to continue doing what I had been doing.

Meanwhile, Eryn invited me over nearly every night to talk, do homework, eat snacks, and play basketball and soccer outside, one-on-one.

Slowly, my teachers took notice. My grades were improving. I participated more in class, if ever so slightly. My mood was better; I was talking to my friends more.

The pain caused by the divorce was almost…. Forgotten. For the help Eryn had given me, I was eternally grateful.

~~~~~~~

Before I knew it, the art show was in a short one and a half weeks. I still had no clue what I was going to present!

For the next week and a half, I was kept busy by art. Nothing, however, would satisfy me.
Thanks to Eryn, I actually felt the urge to do well. I really wanted to win the thing, to see a shiny first place ribbon hanging on my work!

So I painted.

And painted.

And painted.

And painted.

I kept throwing paint-covered canvas after canvas to the side. Most were good… But not what I was looking for. They were boring, even slightly cliche.

But I kept going.

~~~~~~~

“AHHHHH!”

I heard screaming and jolted awake. I tried opening my eyes, but they were still fuzzy with sleep.

It was only then that I realized that the screaming was coming from my own mouth.

I sighed and lay back down, head resting comfortably on my soft, fluffy pillow. That same dream had come to me again.

I looked at my clock. I groaned when I realized I had 2 minutes until my alarm would go off.

I lifted the covers off and swung my feet off the side. I switched the light on, and came face to face with my calendar. Today’s date was circled. My stomach dropped.

Today was the art show.

~~~~~~~

The school gym was hot, and I was sweating under my tshirt and skirt.

I glanced at the clock. The show would start in a few minutes. I turned around to make sure my table was set perfectly.

My large canvas was covered in a cream-colored sheet. It stood upright on top of a white table. I had decorated the area with simple flowers to add to the effect of the painting, and a card with my name and title of my piece was at the front of the table for people to see.

The way our art show worked was a little different from other ones. The guests sat on the bleachers as a teacher walked around the gym. She went to each person and said their name and the title of their piece, and then had them whisk the sheet off. Afterwards, the guests walked around to get a better look of the pieces and voted on the best one. The judges counted the votes and made an overall decision about the winner. So the guests’ votes didn’t completely nominate the winner, but they helped solidify the judges’ decisions.

I held my breath. One minute left.

“Welcome to the 34th annual Washington High art show!” The art teacher, Mrs. Travis, said.

I bit my lip as she walked around the circle of students, revealing their art. Some were…. Well, let’s face it. Some were pretty awful, and I knew I had a chance winning over them. But others? Others were simply amazing.

“Here’s Sophie Rysk, with her sculpture ‘Magical Dreams'”.

Oh crap, Sophie’s was good. And, worse yet, she was only a few people away from me. Mrs. Travis was getting closer!

I breathed in deeply through my mouth, letting it out from my mouth a few seconds later.

Get a grip, Chloe, I told myself.

The art show had never mattered much to me before. Why was I suddenly so obsessed with winning?

“And now, here’s Opal Green with her drawing ‘Childhood Fantasies.'”

As the girl next to me whisked the cover off her picture, it suddenly dawned on me. The reason this was so important to me.

“Thank you, Opal. That is lovely”.

I wanted to make my parents proud.

“We now have Chloe Hawk with her painting ‘Light in the Darkness!'”

I took a deep breath, finally looking up at the crowd, where dozens of eyes stared at me expectantly.

My right hand gripped the worn, cream-colored sheet. And there in the crowd, I saw my parents.

Sitting there, in the bleachers.

Smiling.

As I yanked the sheet off the glowing picture of Eryn, the one who helped me get through all of this, I realized something.

My parents didn’t care if I won. They were proud of me no matter what.

And life would get better after all.

Insecurities, Personal Experiences, School/Career

A Day Better Spent

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.)

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.

 

snhmhfsmf (2)
Me running in 7th grade, before TM
running3
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.