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

Rolling Past Insecurities

170605_lisa_0018
Photo Credit: Danielle in Chicago for Flytographer

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

​Before I got my current wheelchair, I had to rely on other people to push me around, since my arm weakness made it very difficult to push a manual chair on my own. So, naturally, I was very excited for it, because I knew how much comfort and independence it’d give me, seeing as the joystick attachment allowed me to operate it by myself all the time.

When I first sat in it and drove it around a bit, it immediately felt like MY chair, which was an amazing feeling.

But that excitement, that pride in my fancy mobility aid eventually faded, and when I got to college, it actually began to disgust me. I felt self-conscious and embarrassed every time I journeyed from my dorm to class or every time I moved with food on my lap in the dining hall, especially if I was alone (which was most of the time). You’d think that the stares, dumb comments, and condescending smiles would become less bothersome as time went on because you’d get used to it, but for me, it was the opposite. After a while, those things just got so old and infuriating and really, really got to me and, at some point, I couldn’t stand it; the able-bodied college students surrounding me made me feel like such an outcast. I felt more “different” than ever before in my life, and that made me feel so incredibly insecure about my disability. I quickly became obsessed with *really* walking again (as in, not just the short distances I can already do), and I was frustrated when those attempts failed. I thought I needed to walk “normally,” because it felt like that stupid chair was suffocating me more and more every second I spent sitting in it.

170605_lisa_0016.jpg
Photo Credit: Danielle in Chicago for Flytographer

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.

 

(Photo Credit: Danielle in Chicago for Flytographer)

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.

Friendship, Insecurities, Poems

The Best Are Harder To Find

A box in the rain, on a field outside
Sat wet and gloomy in the bitter cold.
I saw this box, sitting there like it died
Years ago. So I opened it– Behold!
An oyster, so old and… a chunk of gold!
Tossed the shell aside and took the jewel
Everywhere I went. And the stone controlled
What I did, how I lived; I was its mule.
But I threw that pyrite straight at the wall,
And took out the old clam shell I had found.
In it was a beautiful pearl, so small;
It comforted me— healed, saved from that mound.
Toxicity’s out in packages bright,
While the best may be hidden out of sight.

with tm friends
Some of my best friends and I at TM camp
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, Poems

Best Friend

Even though I mention “sister”, this can be about anyone you love: parents, grandparents, siblings, friends, cousins, partners, uncles, aunts, pets, teachers, whatever. And no, I wasn’t having these overly-dramatic feelings about my little sister one day… I was just bored and this popped in my head (although I do love her to death) 🙂 This is really just a general, cute little poem that’s a bit on the cheesy side. :p

There for me
Always.

To cheer me up
when I am down,

To make me feel
I’m wearing a crown.

Special
In
Those
Eyes;
I mean something.

Loved
In
Those
Eyes;
I AM something.

To keep me
Going,
Going through
Life.

I can never
Give
Up.

Thanks, my best friend.
My
Sister.

Chronic Illness, Disability, Friendship, Insecurities, Poems, Transverse Myelitis

Everything We Love

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.

Friendship, Short Stories

My House

Here’s the first short story of mine to be posted on this blog! I actually wrote it for a project for school, but thought I’d share it since it’s definitely one of the best short stories I’ve written in awhile. Also… Shout-out to my bestie Sarah Todd for giving me the idea for this story!!:)

My house took four long, hard months to build.

My daddy and my big brother Robert nailed pieces of wood together, hiking the five miles to town to buy more when they ran out of materials. Every day when I went to see it it was bigger and bigger, until finally it was as big as it would be. When they finished I helped my mom paint and furnish the inside.

Finally, it was completely done, and that made me very, very happy. I had watched that house grow for four months, and now it was finished. My family moved in, and every time I looked at that house I couldn’t help but feel that it was mine.
Every night my mom made dinner in the little kitchen, and every night my family came together to eat it. That kitchen in that house, my house, was a place of togetherness for my family and I.

Every night I cuddled up in my thick quilt on the bed in my small, cozy room. I could see my window from there, and every night I fell asleep looking at the stars. That room in that house, my house, was a place of wonder.

One day I came home from a long, hard day of school with only hours of homework on my mind. As I came closer to the house, I saw smoke. Thick, gray clouds of smoke.
I dropped my books and started running. As I approached my house, I saw huge red and orange flames. I didn’t know what to do. My brother was still at school, my dad was working and my mom was shopping in town, so nobody was home. Nobody was there to help me. Nobody was there to save my house.

I ran the well dry pouring water on it but it was no use. I sat down, tears running down my face as I watched my house shrink closer and closer to the ground. Finally, all that was left was a pile of black ashes.

Devastated, I ran. I ran far, far away. I ran past the river, past the trees, deep into the woods. Finally, I collapsed at a rock and, exhausted both mentally and physically, fell asleep on it.

When I awoke, my mom was shaking me. It was dark out. I got up, at first confused. But then I remembered.

“The house…” I croaked, but my mom shushed me and assured me that we would find another place to live.

And we did. But it just wasn’t the same.

Years later, lost in my thoughts, I made a wrong turn upon coming home from work. I knew I should have turned around, but something told me to keep going.

So I drove. And drove. And drove. Finally, I stopped, seeing a row of identically built houses. One, though, stuck out to me.

On the outside, it looked exactly the same as the others. However, I knew that it stood in the exact place that the house my father and brother spent four months building once did.

The house of my childhood. My house.