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

Rolling Past Insecurities

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.

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)

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

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
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
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

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

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

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,
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