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

“What Happened to You?”

Update: This post has also been featured on The Mighty! Check it out here.

I’m just browsing the bakery section of the grocery store with my friend, Sarah Todd, one dayas people tend to do when they are searching for dinner items but get distracted by their sweet-teethwhen we hear someone approach us from behind.

We turn around to see a lady, one who works at the bakery, staring at me and smiling. When I give her a confused smile back, she opens her mouth to say something, and I brace myself for the inevitable.

“What’d you do to your leg?” she questions, pointing to the purple AFO on my left foot. I shift in my seat awkwardly, not particularly interested in explaining the story behind my disability to this stranger at the present moment. Right now, all I want to do is continue shopping, like everyone else in this grocery store.

“It’s a long story,” I politely tell her, already turning to leave the area. Maybe we can head to the candy aisle instead…

“Is it a funny story?”

I turn right back around and stare at the lady, blind-sided by this follow-up question. Her cheery expression seems to falter for a millisecond, as if she’s rethinking the words that just came out of her mouth. But still, she looks at me expectantly, waiting for my response.

Not unless you happen to find Transverse Myelitis funny. Though, we all have different senses of humor, I suppose…

“Um… N-no, not really…” I finally stutter.

Somehow, this still doesn’t satisfy her curiosity.

“Well, then, what happened?”

I want to tell the lady that it’s none of her business. I want to ask her why she feels so entitled to know my full storya story which is very personal, an experience that was emotionally traumatic and life-alteringwhen she likely won’t ever see me again. I want to ask her extensive questions about her medical history as well, to show her how invasive it feels.

But I don’t. I don’t do any of that. I just briefly explain Transverse Myelitis, that it damaged my spinal cord. I tell her that the AFO’s purpose is to correct my foot drop. Luckily, this answer finally seems to satisfy her, and at that, Sarah Todd and I promptly leave the bakery section of the store.

But, as we’re walking/rolling away, Sarah Todd turns to me and, not quieting her voice in the slightest, exclaims, “That was absolutely none of her business. I can’t believe how rude she was being.”

I smile at that. Seeing as she has Transverse Myelitis and is disabled as well, I know she gets it. On the bright side, at least I have friends who are also able to recognize the ignorance of too many able-bodied people.

And also, she’s so, so right. It wasn’t any of the lady’s business, and really, I had every right to tell her off. I shouldn’t have to bypass my own comfort to appease a complete stranger.

But this is a problem that us disabled people face daily. We are asked invasive questions every time we go out, while most people probably wouldn’t even begin to consider asking able-bodied strangers things like that, or even approaching them in the first place.

Don’t get me wrong I love raising awareness for my disorder, and any of my friends could tell you that I’m pretty open about those things. I actually encourage friends, family members, classmates, people I’m getting to know, etc. to ask questions about my disability and chronic illnesses. I want them to understand, and I’d prefer that new friends just ask rather than let it be the “elephant in the room” for too long, because that just gets awkward for everyone involved.

However, there is a time and place for those conversations. When we’re already talking to each other, getting to know each other in a friend-meeting setting? Sure, that’s a great time to bring it up, and I don’t mind at all if you do so. But when I’m just minding my own business, trying to shop like everyone else in the store or waiting for my drink like everyone else in line at Starbucks… In those cases, it is, quite frankly, absolutely none of your business.

 

What is it about the sight of a wheelchair or crutches or leg braces or hand splints that makes it suddenly okay to approach a random stranger and pry into their personal life?

Say you’re at the beach and notice as you pass by a random girl that she has a scar near her abdomen. Would you go up to them and ask if it came from an appendectomy?

Chances are, probably not. If you got to know her, you might find out about the scar’s origin eventually, but it’d be rude to go up to her as a stranger and ask like that. So why is it any different when it comes to us?

 

(Oh, and pro tip: It’s maybe not the best idea to say things like “is it because your boyfriend beat you?” as a way of asking what happened… And yes, I’ve actually gotten that. That’s just… Not okay? Like, ever? What?)

 

All, Friendship, Insecurities, Personal Experiences

Sticks and Stones…

“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.

trtmteer

 

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.

Personal Experiences

Irreplaceable.

You know those old Christmas lights? When one bulb in the string of lights burns out, the rest of them stop lighting up as well. One would have to search through the entire string of lights just to find the dead one. When that one is replaced, the rest would shine once again…. But oftentimes, it isn’t quite the same. If the lights were colored, the old, red one might be replaced by a blue one, disrupting the entire pattern. And even if it’s not that drastically different, more often than not, the new light sticks out, even if it’s subtle; the color may be a slightly different shade than the others, or the bulb may shine brighter or duller than its friends.

You see, life is similar in that way. Most things are not entirely replaceable. And oftentimes it is way more heartbreaking than a broken Christmas light.

A fifteen year old girl can die suddenly. The world keeps spinning and the vast, vast majority of people on Earth continue with their lives, oblivious to the devastation happening in the relatively small string of people whose lives were touched by the young girl. But to them, especially the ones closest to her, it can feel like an earthquake. A hurricane. A tsunami. To them, it is Earth-shattering and life-changing. To them? Well, their lives may never be the exact same again, because when that little girl left this world, she took a piece of the heart of everyone who cared about her… Some pieces bigger than others. And in her place is a dark spot, one that makes everyone in her orbit feel like they can no longer light up, either.

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.

Friendship, Insecurities, Poems

The Tree

The tree, leaves so green, flowers so bright,
Is
Sad.
Its leaves are dropping,
Dripping
With
Rain,
Filled with despair.

The tree, leaves so green, flowers so bright,
Is
Happy.
Hugging me
With
Shade,
Filled with joy.

The tree, leaves so green, flowers so bright,
Is
Scared.
Shaking
In the
Wind,
Filled with fear.

I miss those days when
The tree, leaves so green, flowers so bright,
Would tell me
How it felt.

But now I’m grown;
Now I know
That trees cannot do such.

But wait.

Is that the tree
Saying he’s crushed?

I can feel the tree beaming with pride
When I decide to stop

And
Say
Goodbye.