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.

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.