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.

 

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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 rarediseaseday.us to learn more about rare diseases in general, and myelitis.org 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?)

 

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, Transverse Myelitis

The Worst Parts

When you’re diagnosed with TM (or anything similar), and you’re paralyzed, you freak out and wonder if it’s forever. Because being paralyzed, being “trapped” in a body that can’t move the way you want it to, seems like the worst thing ever. You don’t think it could happen to YOU, and when it does it’s scary. But it’s easy to adapt to, easy to get used to. Sure, it’s not ideal; I mean, no one wants to be in a wheelchair. No one wants to be unable to walk, run, jump, and all that. Nobody wants that part of their life taken away, but when it happens, it doesn’t end up being that bad. The pain, fatigue, flare-ups, etc. are what really make you miserable. You can do anything an able-bodied person can do when you’re disabled; it just takes some creativity sometimes. But the other complications are what really hold you back and make you feel trapped. That’s what bothers me daily, what I wish every day to escape from.

Chronic Illness, Disability, Personal Experiences, Transverse Myelitis

Life is a Box of Chocolates…

That Forrest Gump quote:

“Life is a box of chocolates. You never know what you’re gonna get.”

I got the chocolate nobody wanted. The extra, the last one left, the one smushed and cracked. I had to take it; it wouldn’t be polite not to.

From the outside, I had no idea what I was in for. It seemed impossible to gain the courage to put it in my mouth. But when I did, I was glad.

Inside of that dusty, cracked chocolate was nothing I had ever tasted before. Some people, the ones with perfectly-shaped chocolate, filled with gooey caramel or fluffy truffle that makes your mouth water at the sight, may view the differences as bad. But that’s only because it was one of a kind; they didn’t get to see the inside.

They may go “poor thing, stuck with that crappy chocolate”.

And it’s true that I had to get through the stale shell, but it was worth it because it came with a lifetime’s worth of satisfactions.

That is my life living with Transverse Myelitis.

At first, I didn’t know if anything was going to get better. But once I got past that hard shell,
I realized that my life is unique. It’s different, and although people probably do say: “Poor thing,
stuck with that crappy TM,” they don’t actually know what’s inside. They don’t know that what’s inside is rewarding because every time I’m able to do something (anything) again, like tie my shoes or run a few meters, I appreciate it much more than I did before.

That is the tasty, hidden part that nobody but me craves, because they’ve never gotten the chance
to see it.

So I say: “poor them” to anyone who doesn’t know what a real accomplishment is, because knowing that you’ve accomplished something, big or small, is that secret ingredient.

The secret ingredient to the inside of any piece of chocolate, crappy on the outside or not.

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.

 

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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.