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

Rare Disease Day

I first wrote a similar post for Rare Disease Day two years ago, but this year, I took that one and made some changes!

Today, February 28th, is worldwide Rare Disease Day. I am hoping to raise awareness for not only my own disorders, but for all rare diseases as a whole!

In your life, you may have met someone with a rare disease. You’ve probably seen it at some point. And you’ve definitely heard of it. Maybe you heard it on the news, or read about it, or heard about your aunt’s best friend’s cousin’s uncle’s friend’s son who has one. Whatever the case may be, I can guarantee you’ve come across a rare disease at some point in your life.

When you hear about this kid with an impossible-to-pronounce illness on the news, you may feel bad. You may feel bad for a second, but you don’t give it that much thought. When you hear about a rare disease, it seems far away. It’s rare and it affects OTHER people. It affects people across the country, people you don’t really know. None of these rare diseases can affect YOUR life, right?



But, unfortunately, it can.


You see, I, like so many other people in this world, was once in the same boat. I remember hearing about these things happening to people, but it never connected. It wasn’t something I ever had to worry about.

But your life can change in a second. I was paralyzed within less than twelve hours, affected neck-down. I woke up on August 16th, 2011 with a small pain in my neck but didn’t think much of it. By that evening, I couldn’t walk, sit up, or move my arms. I was in pain. And there was no cure at all; the only treaments I’ve had in an attempt to lessen the lasting damage have been IV prednisone, plasmapheresis, and physical therapy, plus daily medications to control chronic symptoms.


I’d been able-bodied for the first thirteen years of my life but suddenly, at thirteen years old, my life was changed forever. I now had to deal with paralysis, weakness, chronic neuropathic pain, chronic fatigue, spasticity… Everything was turned upside-down in just a few hours.

I had never heard of Transverse Myelitis before then. No one I knew had, either. We had never heard of it because it’s so rare; even most doctors rarely seem to know what it is or much about it.

holiday traditions
Sarah Todd and I with our books, which we wrote to raise awareness


I don’t share this for pity. I don’t want that at all! And I think I speak for most of us with rare diseases when I say that. All we really want is understanding. Awareness. We’re not just people across the country or the world. We’re not just people you hear about on TV. We’re very, very real. Our lives are real. Our struggles are real. We shouldn’t be people you feel bad for temporarily, but then forget about two seconds later. We deserve more appreciation, more awareness, more attention than we get. Rare diseases aren’t something you can just turn your back on. They’re not something you can just brush off. You may not think they could impact your life, but trust me. They very well could.

Transverse Myelitis itself only affects approximately 1 in 1,400 people in the US a year, but approximately 1 in 10 Americans has a rare disease, and for many of us, there aren’t many (if any) viable treatment options.


Transverse Myelitis Walk; most of us here have a rare neuroimmune disorder


Please help us raise awareness for rare diseases such as Transverse Myelitis (and for similar disorders such as Acute Flaccid Myelitis, which is what Sarah Todd has!) today, for Rare Disease Day 2018!

You can visit to learn more about rare diseases in general, and to learn more about Transverse Myelitis (and other rare neuroimmune disorders such as AFM, NMO, ADEM, etc.)

(Also check out The Transverse Myelitis Association and Rare Disease Day Facebook pages!)


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

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)

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.]

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

Every Day Changes Us

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.


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.


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 at Solo & Ensemble with friends in 2015
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. ​​

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

Friendship, Insecurities, My Favorites, Poems

The Golden Flower

The flower
In the flower patch
Is different.

It lies
Golden yellow
In a sea of blue.

It has no one,
No one to compare to,
And it feels

The others,
The sea of blue,
Is one.
They decide.
They mock
The poor golden flower.

The young boy
In the schoolhouse
Is different.

He is peaceful
In a sea of chaos.

The boy goes out,
Out to the flower patch,

One by one
He pulls
Every blue flower
As golden one
Watches in horror.

Across the flower patch
He sees a girl
A girl who’s peaceful.

He takes the sea,
The sea of blue flowers,
To her,
And together
They walk into
The sunset.

The golden flower
No longer looks
At the peaceful
Boy and girl,
As the sea of blue
Is now gone,

Another golden flower.