I know, a strange title for someone who just started a website that completely consists of me writing, but it’s true. Or at least, it used to be true.
Up until about 6 or 7 years ago I hated writing. Hate is actually probably too weak a word to describe the shear amount of deep seeded loathing that I had for writing.
Don’t believe me?
Just ask literally any member of my family, any one of my many teachers from elementary all the way through high school, or my aide from school who did much of the actual physical writing for me. They will all undoubtedly confirm and inform you that it was like pulling teeth to get me to write even just a few sentences much less an entire article (which, one of my teachers actually did pull teeth but, a different story for a different time).
In school my least favorite subject was a toss up between Math and English. Math, I just couldn’t do. I mean, I wasn’t horrible at it, I passed, it just wasn’t my thing. English on the other hand, I just flat out didn’t like. I didn’t like reading, which has changed as well in the past year. I figured if it’s good enough they’ll make it into a movie so, why not just wait until the movie comes out and save myself the time and hassle. I didn’t like poetry (but who really does?), except for Poe but, that was more because of the dark, murdery stuff. I didn’t like spelling because I was terrible at it, as evidenced by me spelling “rock” as “rook” in an elementary school class spelling bee -I ashore you I’ve enproved. And as I said before, I hated writing.
It wasn’t that I couldn’t do it. Clearly, buried deep down somewhere beneath all of the loathing, I’ve always had the ability to write convincingly -I haven’t taken any writing classes since high school. It also wasn’t that I couldn’t physically write. Yeah, it took me a little bit longer to write than most “normal” people because of the weakness caused by Spinal Muscular Atrophy, but up until the last few years of high school I was able to do much of my own writing. Many times when my aide at school, Mrs Taulbee, or my mom would ask if I wanted them to write for me, I would politely say “no, thanks.” There is a long list of things that I can’t do, and at that point writing wasn’t one of them. So, even if it took me a little bit longer, I was going to do it. It was a small form of rebellion that I could muster against the effects of SMA.
My hatred of writing was, really, unexplainable. I just didn’t like it. I’d much rather have spent my time doing graphic design, cooking/baking, going to the movies, hanging out with friends, or watching the news and pontificating about politics to anyone who’d listen… or honestly, even if they wouldn’t listen.
Towards the end of high school I started to lose strength. Over time, SMA slowly weakens the muscles, so it’s sort of hard to pin it down to a specific date or event. It’s more like one day you notice that you can’t quite move the mouse on your laptop the same way you always have, so you adjust and move on. Then a couple weeks or months later, the adjustment you made is no longer working, so you adjust again and find a different way to move your mouse. This continues a few more times until eventually there are no longer any adjustments left to be made, and you just simply can’t use your laptop anymore. Graphic design was gone.
This happened with every aspect of my life. Eating, using my laptop to do graphic design, and eventually riding in the car all became too difficult.
One day I started noticing it was harder to chew and swallow. Two years and many adjustments later, I got a feeding tube because I can no longer sustain myself by mouth. Eating, and ultimately cooking and baking were gone. Sure, I could still technically cook and bake the same way I did before -by telling people what to do Gordon Ramsay style- and I still do from time to time but, what’s the fun in cooking if you can’t eat what you made?
I fought against that one for a while. I didn’t want to give up eating, because I felt like it was the last “normal” thing I could do, and I didn’t want to give up on anything, period. It’s just not who I am. I’ve learned though, that sometimes it’s ok to give up. In fact, sometimes giving up, letting go, and moving forward is exactly what we need to do. I learned that lesson the hard way.
Because of not eating enough, I got even weaker. One day I noticed it was harder to hold my head up in the car as we went around corners or accelerated and decelerated. Two years later and many speedy catches of my head by my mom and her cat like reflexes, and it was no longer safe for me to ride in the car in my wheelchair. Going to the movies, out for a beer, out with friends and family, out to a concert, out period, were all gone.
I’m not gonna lie to you, it sucked. It still sucks to not be able to do most or all of those things -hopefully with the aid of a new wheelchair and Spinraza (the first treatment for SMA, look it up!) I’ll soon be back to getting out of the house and taking part in some late 20 something shenanigans. Geez, I’m old! But the reality is, if I had been willing to get a feeding tube sooner, and listen to those closest to me, I might still be able to do many or at least more of those things today.
So, all that I was basically left with, hobby and interest wise, was watching the news and politics, and watching movies and TV shows. Name a TV show, any TV show, and I’ve probably watched it (except Grey’s Anatomy. Not gonna do it.). My interest in the news and politics raised to a level that many would probably consider unhealthy… but, that’s when it happened.
As I was watching more news, many of the pundits and journalists would reference articles that they wrote or read, so I started reading them as well. As I read I began wondering, “why couldn’t I write articles?” I was pretty knowledgeable. I had endless, strong opinions on everything. I had a good sense of humor and sarcasm that I thought could defuse the more divisive and serious issues. Sure, I’d never actually written an article before, and the last time I had written anything of length period were papers in high school, but I could figure it out. How hard could it be?
I’m pretty sure those first articles that I wrote for the original My RemARCs (which eventually transitioned into The Millennial and now into the amazing website you see today) were pretty terrible. It was something that I could do, though. So I kept doing it.
At first, it wasn’t that I necessarily enjoyed writing, it was just that every other way of expressing myself had been taken away by SMA. Eating, cooking, baking, art, going to movies, getting out of the house, and even talking had become too difficult, so writing was my last outlet. As I kept writing though, and started to gain confidence and improve (at least I hope I’ve improved), I began to actually enjoy it. People were responding well to my articles and I felt a sense of excitement when I came up with a new idea for an article, and a sense of accomplishment when I finished one. It transformed from something I did simply because it was the only thing that I could do, into something I wanted to do and enjoyed doing.
When I was a kid I always imagined that one day I’d be in the Congress, Senate, a Governor, or maybe even one day President. As I got older, as everyone’s do, my thoughts changed multiple times. Artist, graphic designer, NCIS agent, restaurant owner, President again, graphic designer again, or maybe all of the above at different times throughout my life. When those abilities slowly began to fade away, I thought I had lost my purpose or any ability to do something meaningful and that I had a passion for. But that’s when my true purpose and passion arrived, writing.
Now, don’t misunderstand. I don’t believe God took those abilities away from me, that’s not the God I’ve experienced and know. I still have the desire to be able to those things, and hopefully someday soon I’ll be able to again. I do, however, believe that God can use our struggles and unique experiences, in my case SMA, to reveal our true strengths, purpose, and path.
From deepening my creativity through art, graphic design, and creating adaptations to allow me to do things despite the limitations SMA presents, to learning countless lessons about life from the unique struggles and triumphs SMA has taken me through. Without all of them, I wouldn’t be able to write the way I do today. And throughout all of it, life and God have been preparing me to be where I am today.
I’m fairly certain though, that you probably have or had your plans, interests, and goals -places you think you’re going. All of them are worth putting every ounce of your effort into… until they’re not. Learn from them while you can, both your successes and your failures, because you never know where life is taking you. The things you love and excell at today, you might not be able to do tomorrow, or maybe just not find as satisfying any longer. And the thing that you hate today, might just be the place you find your life’s purpose tomorrow.
As you go through the next few weeks or months (they say it takes anywhere from 21-66 days to from a habit. Why not 20-65? I have no clue.) try and be more open to change. Believe me, I know this is easier said than done. Any of my family that just read those words are probably laughing hysterically because change is not my thing. I’m a routine, consistency, and tradition oriented person, and if things don’t go the way I expected I tend not to do well. This website and these articles aren’t about me having everything together and telling you exactly what to do, though. It’s about me sharing things I’ve learned and things I’m still working on learning as well, so hopefully we can all navigate this journey a little easier and better.
Look for the areas in life where God is beginning to lead you in a new direction. You might not fully understand how or where you’re going, but be open to it. Learn from where you are now while you can and be ready to use the things you’ve learned in new ways. Because like I said, I hated writing… until I didn’t.
Well, those are my remARCs. I hope they in some way, big or small, might have resonated with you. Whether it made you laugh, cry (I hope not too much), smile, or maybe think about life from a different perspective, I hope you take something away from this article that makes your day even the slightest bit better. I’d love to hear your remARCs as well. Feel free to send me an email at email@example.com, or leave a comment on the My RemARCs Facebook, Twitter, or Instagram pages… unless you hated it. In which case, why are you even still reading this? Hope to see you back here soon. Until then, be well and live remARCably.