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.

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

Every Day Changes Us

** 01/18/2019: See edit at end of post. **

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. ​​

 


 

** Edit 01/18/2019 **

I wrote this in 2016, not long after graduating high school, and at the time, I had tossed aside my lifelong Speech Pathologist dream and decided I wanted to be a PA, instead. However, in 2018 I ended up switching back to Speech Pathology after realizing it actually was still my dream, after all. So, if you know me and my current plans, this post is probably really confusing. But I think the overall point still stands. We are constantly changing every single day, and it is impossible to know what we want to do at this age, with such little life experience, without trying things out.

Sure, it would have been SO much easier if I’d just stuck with Speech Pathology all along instead of changing my major a couple times, but I think I needed to try out other ideas in order to be confident in my decision. If I’d stuck with it all along, there would always be the question of what if?, as in, “what if this isn’t right? What if I’m only doing this because it’s been my default answer my whole life?” But because I tried out the PA idea and even the English idea before coming back to Speech, I feel so much more that it’s the right option. I love science and the body, and I love words/language — I’ve figured out that that is why I want to be a speech pathologist. It’s basically a combination of the two, which I was originally having such a hard time choosing between. Since I’ve discovered real reasons for wanting it (whereas, before, I felt like I was just saying I wanted to do Speech because I’d always said that), I feel like I actually have a passion for it, and that is everything. I don’t know if I could have gotten there without exploring other options.

Point is, it’s okay to change your major. It’s okay to not know exactly what you want to do with your life when you’re this age. And as dumb as it feels, it’s okay to switch back to what you started with, because the journey in-between can make all the difference.

Chronic Illness, Disability, My Favorites, Transverse Myelitis

The Little Things

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.

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.

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.