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?)

 

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, Personal Experiences, Transverse Myelitis

Invisible

feet

See my feet? They look pretty normal, right?

Well, you can’t tell, but they are on fire. They burn so badly, I can’t sleep. It’s midnight, and I have a 9am class, but I’ve been lying awake for an hour because my feet burn.
Then, when I splashed cold water on them in an attempt to relieve the burning… they started feeling like what I can only describe as a mixture of itchiness and rug-burn. So now my feet are also suffering through that sensation, in addition to the initial fire-like burning.

This is only a small, small part of the reality of living with Transverse Myelitis. You wouldn’t know any of this by looking at me. If you glanced at me feet, you’d just see… Feet. Completely normal-looking feet. You may notice a toe spasm here and there, but overall, there doesn’t appear to be anything wrong with them. You could say that I’m lying or exaggerating. I mean, after all, there is no way for me to prove otherwise. I can’t put you inside my body for a moment to feel the burning for yourself (oh, how I wish that were possible).

So, I guess you’ll just have to take my word for it. These normal-looking feet give me problems every single day; I’m constantly having to deal with different unpleasant sensations and pains.
And that’s just one small part of me. My entire body is constantly ridden with different sensations such as stabbing pain, burning, “electric shocks,” pins and needles, phantom itches, numbness, achiness, etc.

Trust me, it sucks. I’ve been dealing with this stuff for over 5 years now, and it’s only gotten worse rather than better. But I’m dealing with it. I know I can handle it. But sometimes, when my burning feet are keeping me awake late at night, all I want is for it to go away just for one night so, for once, I can actually sleep peacefully.

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
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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.