You know those old Christmas lights? When one bulb in the string of lights burns out, the rest of them stop lighting up as well. One would have to search through the entire string of lights just to find the dead one. When that one is replaced, the rest would shine once again…. But oftentimes, it isn’t quite the same. If the lights were colored, the old, red one might be replaced by a blue one, disrupting the entire pattern. And even if it’s not that drastically different, more often than not, the new light sticks out, even if it’s subtle; the color may be a slightly different shade than the others, or the bulb may shine brighter or duller than its friends.
You see, life is similar in that way. Most things are not entirely replaceable. And oftentimes it is way more heartbreaking than a broken Christmas light.
A fifteen year old girl can die suddenly. The world keeps spinning and the vast, vast majority of people on Earth continue with their lives, oblivious to the devastation happening in the relatively small string of people whose lives were touched by the young girl. But to them, especially the ones closest to her, it can feel like an earthquake. A hurricane. A tsunami. To them, it is Earth-shattering and life-changing. To them? Well, their lives may never be the exact same again, because when that little girl left this world, she took a piece of the heart of everyone who cared about her… Some pieces bigger than others. And in her place is a dark spot, one that makes everyone in her orbit feel like they can no longer light up, either.
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.
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.
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.
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.
** Edit 01/18/2019 **
I wrote this in 2016, not long after graduating high school, and at the time, I had tossed aside my lifelong Speech Pathologist dream and decided I wanted to be a PA, instead. However, in 2018 I ended up switching back to Speech Pathology after realizing it actually was still my dream, after all. So, if you know me and my current plans, this post is probably really confusing. But I think the overall point still stands. We are constantly changing every single day, and it is impossible to know what we want to do at this age, with such little life experience, without trying things out.
Sure, it would have been SO much easier if I’d just stuck with Speech Pathology all along instead of changing my major a couple times, but I think I needed to try out other ideas in order to be confident in my decision. If I’d stuck with it all along, there would always be the question of whatif?, as in, “what if this isn’t right? What if I’m only doing this because it’s been my default answer my whole life?” But because I tried out the PA idea and even the English idea before coming back to Speech, I feel so much more that it’s the right option. I love science and the body, and I love words/language — I’ve figured out that that is why I want to be a speech pathologist. It’s basically a combination of the two, which I was originally having such a hard time choosing between. Since I’ve discovered real reasons for wanting it (whereas, before, I felt like I was just saying I wanted to do Speech because I’d always said that), I feel like I actually have a passion for it, and that is everything. I don’t know if I could have gotten there without exploring other options.
Point is, it’s okay to change your major. It’s okay to not know exactly what you want to do with your life when you’re this age. And as dumb as it feels, it’s okay to switch back to what you started with, because the journey in-between can make all the difference.
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.
Today I blew off working on a big English essay to help my little sister learn to ride her bike, going to lunch with my mom and friends, and holding my sister’s hand while she got her ears pierced.
There’s part of me, probably the bigger part, that cringes when I think of how much time I wasted, time that could have been spent perfecting that essay.
But you know what?
In reality, that time was much better spent with what I did.
In 20 years, what will I likely remember more: the problems in Les Miserables, or my baby sister growing up?
Hopefully the latter.
Why is our society like this? Why have we decided that it’s ok to make the average high school student’s life literally revolve around school? Don’t get me wrong, I think school is really important. Learning is important, and that’s the primary focus of schools. But the whole system has evolved into something more horrifying. It’s terrible that kids (yes, they’re still kids) think that they can make or break the whole rest of their lives with what they do now, in school.
Yes, learning is important. But stressing out every single moment of every single day about tests, grades, homework, etc., is not. What’s important is to take school seriously, yes (because it does matter and it is important), but also to take a break once in a while. It’s important to lift your head up and take that breath of fresh air in the form of other things you enjoy: music, drawing, writing, spending time with loved ones. Because if you don’t, you’ll surely drown.
I’m likely not going to change my ways because of this. Tomorrow I’m going to spend hours finishing that essay, I’m sure. It’ll probably cut into most of my sleep! But I’ll remember to realize that experiences are okay. Spending time with family is okay. Maybe I’ll take a break, and we’ll try that bike one more time.
(Update: A year later, I read what I wrote above, and realize that I got an “A” on that essay. And my sister has mastered the bike.)
“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.
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.
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.