My RemARCs: Before We Begin

Before we begin this journey together that is My RemARCs, there are some things that you should probably know about me and this site.

Yes, I know “RemARCs” is spelled incorrectly. 

It’s called creative license. Why take this creative license? Well, I suppose that requires a bit of an introduction.

My name is Andrew R. Creighton… get it now? (you can tweet me with your middle name guesses) I’ll be 27 in September. I’m a big movie and TV fan. I love Disney, Marvel, Star Wars, Harry Potter, Doctor Who, U.S. and World History, politics, -at this point you’ve clearly gathered that I’m a giant nerd- art/graphic design, baking, the Dallas Cowboys, Atlanta Braves, D.C United, University Of Virginia, and most recently writing- of which I will, at one point or another, write about them all. I like long walks along the beach, blondes, brunettes, or red heads, and am not looking for someone too clingy… oh, wait! This isn’t a dating site… unless you’re interested. In which case all of that is true and you can message me on Facebook or Instagram or something like that. Well, actually, most of that was true. I don’t actually like long walks on the beach because, well, I can’t actually walk. Which leads me to my second point.

I was born with a disease called Spinal Muscular Atrophy, or SMA.

SMA is, without going into too much sciencey mumbo jumbo, a genetic nuromuscular disease (ok, I lied. But it’s only one big sciencey word) that over ones’ life causes the body’s muscles to slowly waste away. As a baby, I never crawled or was able to pull up on furniture like most babies do, which led to my eventual diagnosis at around 18 months. As I said, I can’t walk so I got my first power wheelchair when I was 2. It was a small, red, Quickie brand wheelchair and I used the heck out of it playing outside (and inside to my parents dismay), going to school, going to Disney and other vacations, and doing all the other things that a normal adventurous kid does. 

Starting at a very young age, my family and I have raised money and awareness for multiple organizations that fund research for SMA. We started first with MDA where I was the national children’s ambassador. My family and I went to MDA Telethons, Fill The Boot drives, golf tournaments, and even started our own fundraiser called a Bowl-A-Thon. 

Then came Fight SMA, which was solely focused on funding and awareness for SMA. Here we continued our fundraising efforts through our Bowl-A-Thon’s until I was in high school when it transformed into a classier event we called Party With A Purpose. Fight SMA also allowed us the opportunity to take our campaign for funding and awareness to Capitol Hill. My family and I were able to meet with Senators and House Representatives such as then Rep. Eric Cantor, Senator Mark Warner, and even a passing meeting in the hallway with then Senator, now former Vice President and current Presidential candidate Joe Biden. The result of multiple years of meetings was the eventual passage of a bill allowing funding for research through the NIH. We continued to work closely with Fight SMA until just a few years ago when they sadly had to close their doors.

Nowadays we continue our fight with friends and family through the organization Cure SMA. Though in the past few years we’ve had to take a break from planning our own fundraising events, we’ve begun a yearly tradition of taking part in the Ukrop’s Monument Avenue 10k and raising money through fundraising pages for Cure SMA that way. 

Over the years, with the help of friends, family, and complete strangers my family and I have raised close to (if not over) a million dollars for SMA research. Because of that, and the work of countless other families like mine across the nation and world, the first ever treatment for SMA was passed by the FDA in December 2016. And on May 24, 2019 the second ever treatment for SMA was passed by the FDA, a treatment that for presymptomatic people (infants) is even being considered a CURE! Now the fight continues to find a cure for every patient with SMA!

“I have SMA. SMA does not have me.” 

Alyssa Silva, who I follow on Twitter and Instagram and who also has SMA, wrote those words a while back and I can’t think of a more perfect way to phrase it. SMA weakens all of the body’s muscles making it more difficult to breathe, eat (which in the last 5 or 6 years I lost the ability to do except for a few cookies that I dip in coffee, or the occasional beer or whiskey & ginger), move fingers, hands, arms, and ultimately body. This means I require assistance doing everything from taking a drink, to going to the bathroom, to scratching that awkward butt itch that everyone gets… don’t try and deny it. Sounds great, right? But while yes, SMA dictates much of my daily routine -increasingly so in the past 6 or 7 years- it is not who I am.

SMA makes up about 1% of who I actually am. Really, the only thing different between you and I is that I navigate this crazy, messy, beautiful thing we call life with a wheelchair. Sometimes life throws a giant set of stairs in front of me, but it just means I take the scenic route until I find the ramp. I’m also probably just a little bit better looking than you so, that’s another difference.

I am made up of all those previously mentioned interests and likes plus many more. I’m also, as you’ve probably gathered by now, slightly sarcastic and like to think that I’m pretty funny and quick witted as well… but, I guess that’s really up to you to decide. I like music, which for some reason I left that out earlier. I’ll listen to pretty much every genre except for stuff like Death Metal or Opera… maybe if you combined them? Probably not. Some of my current favorite bands are Judah & The Lion, Crowder, Josh Garrels, Needtobreathe, Drew Holcomb & The Neighbors, Mumford & Sons, Midland, Dierks Bentley, Khalid, Coldplay, and Selena Gomez just to name a few… if I’m being honest though, that last one is less about music and more about my gigantic crush…

But what I’m really made up by, deep down, is the family, friends, teachers, and God who have taught me, taken care of me, loved me, and shaped me into the (amazingly awesome… and humble) person that I am today.  

Thus, this website will be about all of those things and more. I will go into further details about everything that SMA entails- trust me, those examples I gave earlier were just the tip of the suckieness spear- from having to have help doing almost everything in my daily life to funny stories which I call SMA Stories. But I’ll also definitely talk about everything from sports, to movies, to my journey as a follower of Christ, to the occasional article about the news of the day or political issues. My goal for this website is that you leave it (preferably after spending a long span of time on it) with a sense of positivity, a new perspective, and perhaps a laugh or two. That is how I intend to approach every article I write and everything I create for social media, and I hope that comes through sincerely. 

So if all of that and a bag of chips, as they say (whoever “they” are), sounds like something you’d be up for, I’d love to have you along for the journey. I’m not sure how often I’ll publish a new article? Whenever some profound thought that I think I need to share with the entire world slaps me upside the head, I suppose. I should also tell you that most of my articles will be a little longer than your average blog post. I know sometimes longer articles can turn people off, but I feel that many of the topics that I’ll be writing about deserve to be adequately represented and explored to do them justice. I will always try to be as concise as possible with my articles, but I’d rather them be a little longer than have them be incomplete and unfinished.  It’s also why I prefer to call them “articles” as opposed to “blogs”… also, I really just don’t like the word blog. It sounds more like something that you’d say when you drank too much the night before. “I had way too many drinks last night and man, I was blogging all night!”

For now, I’ve added to the website some previously written articles from a former blog I had, The Millennial (my clearly failed attempt at trying to have an edgy name), for you to read at your leisure. They’re pretty good if I say so myself. You should check ‘em out! My new stuff will be better though. You can also always find me on the My RemARCs social media pages. Head on over and give us a like and follow on Facebook, Twitter, and Instagram or send me an email at myremarcs@comcast.net

Well, that’s it for now. I’m all written out and my hand is starting to cramp… thank you, SMA. Hope to see you back here soon, but until then remember…

live remARCably.