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

Rolling Past Insecurities

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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.

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

Fighting a World Not Built For Me

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

 

Everyone who meets me likely suspects that I have a disability, unless they think that I use an insanely expensive, custom wheelchair for fun. That plus my chronic illnesses have impacted my life a lot.

Some of that impact has been positive. I mean, I’ve befriended a lot of awesome, fellow disabled and/or chronically ill people who I’d hate to have to live without. And I suppose there’s the whole “I’ve learned to appreciate things” thing, and many of my current hobbies may not be in my life without it, etc etc. But that’s not quite what this post is about.

It’s hard to deny that my GPA and AP exam scores could’ve been much higher without Transverse Myelitis, and I could’ve participated in so many more extracurriculars. Where would I be in my running career if I were still able-bodied? Plus, I’ve dropped more classes than I care to admit during the last 5 years because, between hospitalizations and long flares causing me to miss weeks of school at a time, it can be incredibly difficult to keep up sometimes. I’ve tried my best and so far, for the most part, I haven’t been unsuccessful. But it hasn’t been easy, and I feel like I’ve barely done anything other than school; after sophomore year, my only extracurricular was choir, and I never got a job in high school. I rarely even hung out with friends during the week, because I needed a 2-hour nap after school every day in order to have just barely enough energy for homework. Meanwhile, so many people are able to do it all, and as a result, I feel so inadequate. I feel like they’ve surpassed me in every way because, for everything I accomplish, my [incredibly smart, gorgeous, and driven] friends have achieved that plus 10 other amazing things.

And that was just high school. If my freshman year of college taught me anything, it’s that life just keeps getting more and more difficult as time goes on which is, admittedly, the exact opposite of what I hoped for. I’m still only 19, so I know that I can’t speak for all stages of life, but I can express my experiences and thoughts and fears.

See, right now, I’ve been thinking, and I realized just how scared I am for the future. There are many reasons for this–some most human beings can relate to–but at this moment, the most prominent is my fear that I won’t ever get a good job. I just so desperately want to be a Physician Assistant but, realistically, will I be able to get that job? Or will all of that schooling (assuming I make it, which will be a battle in and of itself) be for nothing?

You might think that this is an irrational fear, especially if you know me well and therefore actually see me as an intelligent, “normal” human being. But as dramatic and negative as I can be sometimes, I know that this one is valid, and I’m not the only disabled person who worries about it. I’m afraid that employers will take one look at the wheelchair (and/or crutches) and sucky, demented hands and decide that I’m not competent. And it’s true that, technically, I probably can’t physically bring as much to the position as my able-bodied counterparts. But I’m smart, and I’m determined, and I am able to adapt. I mean, just ask my mom– At 13 years old, newly paralyzed, with no hand function, no right arm function, and very, very little left arm function, I was stubbornly determined to learn how to feed myself. In 8th grade, I shakily scribbled most of my own notes with my weak, non-dominant hand, refusing to rely on the assigned note-taker next to me. At 14, after doctors had told me that I’d never walk again, I ran and quickly became the fastest freshman girl on the cross country team. At 15, sick of relying on other people, I figured out a way to tie normal shoe laces by myself.

I’m not saying that I’m super amazing or anything; I’m just saying that I know how to adapt and I know what I’m capable of. I’m not in any way scared that I won’t be physically able to be a PA… I’m just afraid that other people will think so, because they don’t know me at all. Instead, all they’ll see are my physical limitations (which just seem to be getting worse and worse), and I’m afraid that my able-bodied competitor will be chosen over me every time, despite the fact that it’s technically illegal to discriminate in that way.

And even if I manage to get a job… Well, the fears don’t stop there.

One of my professors is giving me a D for this past semester because I missed the last three weeks of school due to being sick and in the hospital, and he thought that I had too much makeup work to be granted an incomplete and finish over the summer. This is sucky, but overall not really that big a deal. However, what if next time, instead of a low-level course that I technically don’t need for my degree and can easily retake, it’s a job? What if I’m eventually fired because of things I can’t control, because I’m “sick” more than most people? I mean, I can try my best to not require hospitalization and work through days when my pain and fatigue flare so much that I can barely lift my head off the pillow, but I already tried that this year and, well, you all saw how that worked out for me.

Trust me, this isn’t me trying to throw a pity party or look for the worst-case scenario. I know that many people all over the world have to suffer through far worse problems than this. And normally, when it comes to my abilities, I don’t say I “can’t” do things (besides, like, run. Or jump. Or do a chin-up.), because I just hate feeling weak and especially hate when people pity me. But these fears are just becoming increasingly real as I get older–especially as my body fails me more and more–and I hate that I have to be afraid that other people’s ableism could possibly inhibit me from following my dreams.

I wish that more people saw me for who I am. I don’t see myself as particularly “strong” or “inspirational.” I mean, I am disabled. I am chronically ill. I definitely won’t deny that, as those things are a huge part of me. But I’m also just a 19 year old girl who loves singing, writing, and swimming. I am a college student who is fascinated by the human body and modern medicine. I am a daughter and sister who loves and values her family more than anything else in the world. I am sensitive, empathetic, “too” kind, creative, hard-working, stubborn, independent, determined.

Yes, my disability is a part of me, but it isn’t the only part of me. I just hope that the people I meet–employers, bosses, colleagues, society–will eventually realize this, because I’m just so, so sick of fighting against a world that’s not built for me.

 

[Side-note: Someone should seriously put on a production of Les Mis featuring disabled people so I can be Eponine… Not that that’s a huge, unrealistic dream of mine or anything….. Haha. Ha.]

All, Chronic Illness, Disability, Insecurities, Personal Experiences, Running, Transverse Myelitis

Replacing Running

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Trying out a track chair in 2015

It was late winter or early spring of 2015. My family brought me to some place where the Great Lakes Adaptive Sports Association (GLASA) was going to discuss adaptive sports with me… Such as wheelchair track.

They brought out a bunch of racing chairs and had me try one out. With assistance, I got in it, and in this first chair, I sat on a little seat with my legs out in front of me. A pair of thick, black glove-like things—which loosely resembled a pair of small boxing gloves—were taken out, and they helped me slip them on my hands before instructing me to lean forward and showing me how to push the chair. I found this first chair uncomfortable and awkward; it was difficult to lean forwards and push when I was in that seated position, and the pain in my legs and back immediately increased, so they helped me switch to a different type of racing chair. This one was red and yellow in color, and it was designed so that my legs were folded underneath me instead of being in front of me.

I immediately liked this design better; it felt significantly more comfortable. One of the GLASA coaches then brought me into the hallways and helped me practice pushing the chair.

When I gave it a push, it glided across the linoleum, and I was delighted.

“I like this!” I exclaimed to the lady and my mom. The speed was fun and exciting, and the concept was new and intriguing.

Maybe my situation doesn’t suck so much, after all, I thought.

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Running in 7th grade, before TM

​Unfortunately, the excitement didn’t last long. The thing is, I had way too many expectations going into it. I was trying to replace running. I pushed the thought of running, the grief of losing it, way back in my mind and covered it up with the thought of wheelchair racing. I continuously told myself that it was close enough, that I enjoyed it and it was good enough, and maybe I would grow to be just as enamored with wheelchair racing as I was with running.But I was wrong. I was lying to myself. I went to practices a few times a week and I competed in a few meets. I got a few medals at some of the high school meets, but I despised them because I knew they were pity medals…. I was always either in last place or the only one racing. I made it to state, too, but again, it didn’t feel like a real accomplishment considering the top 2 in each race got to go, and I was always either racing against myself or one other girl.The GLASA meets and practices were definitely better than the high school ones. Practices were significantly less repetitive and it was nice to practice with and race against a lot of other people. I even did a relay at regionals, and though my group ultimately got disqualified since we weren’t completely sure of how it worked, it was a great experience, nonetheless.

At regionals, I made it to NJDC (the National Junior Disability Championships), and though I didn’t end up being able to attend, that did feel like a real accomplishment, unlike making it to State or “winning” those pity medals.

Wheelchair track brought some amazing memories, and I don’t regret trying it. But I dreaded going to practices and meets. My arms hurt after pushing for just a few minutes, and not in the good, muscle soreness way that I actually kind of love. No, it was my nerve pain. It flared up and every push was incredibly painful, and that, in addition to increasing my fatigue, left me basically bed-bound for at least a day after each practice or meet.

And, more importantly, I wasn’t “good” at it. At all. Of all of the people I raced against, I was the only one with significant weakness and partial paralysis in my arms (from what I could tell, anyway). I was almost always in last place out of those I raced against. But I was also always told that I was technically in first place, only because I never raced against anybody with the same classification.

See, when it came to wheelchair track, I was just terrible. I didn’t really “fit in” with the other racers because I was terrible. Maybe that would’ve been different, had I gone to NJDC, because maybe there would’ve been other people in my class. Maybe I would’ve built up more strength and gotten better eventually. But I’ll never know that, and ultimately, I felt defeated. Ultimately, I just ended up missing running more than ever. I was watching my Cross Country and Track friends improving more and more, experiencing things that I’d dreamed of as a freshman and sophomore. They were surpassing me; I was left behind in the dust kicked up by their spikes, watching their legs take them further and further away from me. I was in last place, both physically and metaphorically.

 

I didn’t discover my love for running until 6th grade, and then I got 2 wonderful years of track, 5k races, and cross country before it was snatched away from me. So I took it back, and I got almost 3 more years of it… but then it was taken away again. A second time. And I just so desperately wanted for things to be okay. I wanted to be able to embrace the wheelchair and crutches, to become an amazing wheelchair racer. I wanted to be able to be okay with not running, because it’s too annoyingly pitiful to not be. I wanted my life to be a story of hope and perseverance rather than one that’s just… Sad. Dramatic. Real.It’s easier for everyone to pretend that this type of thing is okay. It’s easier for everyone to pretend that the thing you love most can be easily replaced if you have to lose it. Sometimes, I feel like it’s easier for able-bodied people to see our newfound happiness, to believe that we’re always “strong,” happy, and grateful, that we never grieve the things we lost because there’s nothing to grieve.

​Maybe I should be able to just persevere and learn to be completely happy with these newly discovered sports. Maybe I should be one of those people who greatly succeeds in an adaptive sport and is grateful that TM ruined my arms and legs, because it allowed me to discover that new sport. But, the truth is? This really isn’t the case (so far, anyway). It kind of sucks sometimes. And I know I’m not alone in that. My life isn’t some inspirational movie or book; it’s just life. It’s filled with hard stuff, much life everyone else’s life, and I do grieve running (and other things) all the time.

 

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Running with my little sister summer 2013
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Cross Country meet fall 2013

But that’s not to say that I don’t enjoy other things. As far as sports go, I can swim. Thanks to GLASA, I’ve discovered swimming, and I’ve found that I love it– far more than wheelchair track. I try not to compare it to running, because there’s really no comparison. Swimming is its own, separate thing, and I’ve found that it’s more enjoyable when I treat it that way. It’s not running. Not at all. It hasn’t replaced running as “my” sport; instead, it’s simply an addition. My heart is big enough for the two of them (that sentence was painfully cliché, but you know what I mean).The thing is, in general I actually am okay with everything that has happened to me. I’ve said before that I’m grateful that TM has had a huge impact on who I am and has given me so many friends, hobbies, etc. that I may not have otherwise had. I wasn’t lying about that; I still believe that that’s true. I just know that, no matter how hard I try, I will never be able to replace running, and therefore, it’ll forever be something I desperately miss. And that’s okay.

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.