What UVA Basketball And Having SMA Have In Common

I have a disease called Spinal Muscular Atrophy, or SMA.

Now, that doesn’t sound like something that would have very much in common with either UVA or their basketball team, but I think after some further explanation you’ll find they actually have quite a bit in common… and maybe, they might have something in common with you as well. Let’s find out!

In March of 2018 the University Of Virginia Cavaliers lost to the University Of Maryland Baltimore College Retrievers in the first round of the NCAA Tournament. It was the first time in history that a number one seeded team lost to a sixteenth seeded team.

Man, those were painful sentences to write.

If you don’t know much about me, I’m a huge UVA fan. If I had been able to go away to college, it would’ve been to UVA. Assuming I got in, of course. I’m a fan of their Football, Baseball, Soccer, Fencing… I don’t even know if they have a Fencing team but, if they do/did I’d be a fan of it. I’m especially a UVA Basketball fan though, and the 2017-2018 season was supposed to be their year. A run to the Elite Eight or the Final Four were all but guaranteed, or at least that’s what everyone thought.

They’d had a historic season with the most wins in the ACC and winning the ACC Tournament just a week before. Within the first few minutes of the first game of the NCAA Tournament though, everyone could tell the Final Four was in jeopardy. By the end of that first game history had been made again, just not in the way UVA fans, or more importantly the team, had hoped. UMBC was hot. There wasn’t a shot that they couldn’t make, and the Cavs couldn’t buy a bucket if their lives depended on it. None of this is to say that the team didn’t put in the effort, they did. They played their hearts out, but they just simply got outplayed.

After having such a historic and painful loss like that, you’d expect a coach to have a pretty bad attitude in the locker room and in interviews after the game. As anyone who pays attention to college sports has found out in the year since, this was not the case with Tony Bennett… no, not the 92 year old singer, the amazing coach and leader of UVA Basketball. Instead of hanging his head in sadness and anger, Coach Bennett talked to his team about the lessons of having both historic wins and historic losses. This is what he said just minutes after probably the most historic loss in college sports history.

“I told the guys, this is life. It can’t define you. You enjoyed the good times and you gotta be able to take the bad times. When you step into the arena, the consequences can be historic losses, tough losses, great wins, and you have to deal with it. That’s the job.”

He went on to acknowledge the high level of play and coaching by UMBC saying, “that was a thorough butt whipping.

Virginia Cavaliers coach Tony Bennett speaks in interview moments after historic loss to UMBC. Photo credit: businessinsider.com

Since the loss, Coach Bennett has continued to push the importance of taking what comes to you and moving forward with it with peace and confidence. He does this by focusing on what he calls The Five Pillars. Humility, passion, unity, servanthood, and thankfulness. It’s hard to wrap your head around being thankful for experiencing a loss like UVA did, but that’s exactly what Coach Bennett taught.

Fast forward to this season where UVA was right back where they were last season, a number one seed up against a sixteen seed.

“I saw a quote, if you learn to use adversity right, it can take you to a place you couldn’t have gone any other way. I think that’s true. I watched my dad coach, and my sister coach, and I love being a coach. Losing that game hurt a lot, but I’m really okay. We’ve all taken it head on. I’d rather have trembling courage over trembling cowardice.” Bennett said earlier in the season.

The Cavaliers went on to have a bit of a rough start in the tournament, trailing to Gardner-Webb early on in the game. After halftime though, the Cavs seemed to shake off their nerves and pulled out the win. After that first win, they continued to have some more ups and downs, but each time they got down, they found a way to fight back and get the win to move on, and eventually make it to the Final Four after an amazing comeback win in overtime against Perdue. It’s an awesome thing to witness both as a UVA fan, but also as a person. I think there’s a lot to be learned from how they handled such a huge loss. We generally don’t talk about being thankful for the losses or the pains in our lives, but it’s something that, as Coach Bennett says, is freeing and can lead to a place that you couldn’t have imagined otherwise.

I can see that in my own life.

Like I said earlier, I was born with a disease called Spinal Muscular Atrophy. SMA is a disease that, because of a genetic mutation, causes the muscles throughout the body to slowly waste away, making it difficult or impossible to walk, move arms, legs, and hands, eat, and even breath.

When I was diagnosed when I was around eighteen months old, doctors told my family that I most likely wouldn’t live past the age of eight.

Well, I got my first power wheelchair when I was two, went to elementary, middle and high school, and now I’m almost twenty-seven. In those twenty-seven years I’ve had my challenges. My big losses if you will. I guess you could say that my biggest “loss” came when I was diagnosed with SMA.

“How can you be thankful for having a horrible disease like SMA?”

Well, the short answer is, I’m not. Of course I’d love to not have SMA if I could. SMA sucks (or stinks if the kiddos are listening)! I’ve been sick a ton. I’ve been in the hospital more times than I care to count, and I’ve been stuck by needles even more times than that. I lost the ability to eat pretty much all food, and also lost the ability to use my laptop for things like graphic designing or writing this article, which I wrote entirely on my phone. Both of which were two of my favorite things, food and art. In the last four or five years I’ve also, for various reasons, largely lost the ability to get out of the house, so another of my favorite things, going to the movies, has become extremely difficult as well.

Those are just some of things that come with having SMA. There are a million little things (yes, I watch that show. And if you don’t, you should!) that happen every day that are made more difficult because of having SMA. So, to put it mildly, if a cure comes out for SMA tomorrow, I’m there! Just like if UVA would’ve had the choice to not lose in the first round of the NCAA Tournament, to not have to go through the pain of loss and the “what if’s” of trying to rebuild, they would’ve. Life doesn’t work that way, though.

We unfortunately don’t know when our losses are coming, or have the choice to defer them to a later date.

“No, I think Tuesday, October 10th, 2025 is a better day for me to get that life changing diagnosis. I’m just really swamped right now.” Nope. Our challenges come at the times when they are just that, challenging. There is a choice we can make, though. The choice of how we respond to those challenges or “losses.”

Throughout all of those challenges I had every opportunity to give up.

I could’ve chosen take an easier road and let SMA dictate my life, and for a while I did and still do from time to time. It’s an ongoing battle.

I’ve questioned where God is taking me in my life, and why.

I’ve felt the feelings of uselessness, and that I have nothing of value to contribute to society. Or the questions of will I ever get married, or have kids, or get a job, or even just go on a date. Every time I start feeling like that though, I think about the love and strength God has continually provided me with. Putting me exactly where I need to be, even if I don’t yet understand why. I think about the love of family and friends who support me, who’ve laughed with me, and even argued with my hardheaded, stubborn self until I was willing to do what I needed to. My point in telling you all of this, my struggles, isn’t to make you feel bad for me, or so we can all throw a big pity party together. In fact, it’s just the opposite.

My family and I after eating copious amounts of Gelati Celesti ice cream to raise money for SMA research.

For every one of those times where I started to get down on myself, or one of the many challenges and losses I’ve faced throughout my life that got the better of me, I can point to ten other times where I’ve had experiences, or conversations, or met someone, or learned something about myself or life in general that has made all the struggles and challenges worth it.

Me and the wonderful planning team for a Golf Tournament and Celebration that raised money to assist with wheelchair repairs, medical equipment, and assistive technology.

You see, I’ve done many things that most people never will.

• I’ve met the Director of NCIS (Naval Criminal Investigative Service)

• Watched five or six massive Navymen carry my wheelchair up the virtually ninety degree angle stairs so I could tour the USS Eisenhower. (An aircraft carrier)

• Raised hundreds of thousands dollars with my family and friends to help fund research for SMA, that’s now resulted in the first ever treatment for SMA

• Met with Congressmen and Senators on Capital Hill to lobby for more funding for SMA research, and then having the chance to actually meet the researchers who are doing the everyday work to find a cure for SMA

• Or just spending time hanging out with family. Going on vacations, Birthday party’s, Christmas’s, Thanksgivings, laughing together, watching a movie or a basketball game together, or trying to navigate this crazy, messy thing we call life together

Me in a slightly less than accurate front page article after touring the Norfolk Naval Base with NCIS.
A typical evening playing a game with my completely normal family.

I could go on and on and on with that list because, you see, life isn’t monolithic. It’s not black and white, all good or all bad.

Without having SMA, none, or very few of those things that I listed would’ve ever taken place.

I wouldn’t have learned how to trust God even when you can’t see the plan. I wouldn’t have been able to witness the kindness of perfect strangers who simply want to offer a kind word, or of friends (or strangers as well) who give generously to help cure SMA. I wouldn’t have witnessed the love and strength of a family determined to eradicate a disease, or who care for me day in and day out. I simply wouldn’t be the (insanely awesome) person who I am today if it weren’t for SMA.

It’s not who I am, but it has shaped who I am.

My family and I.

No, life isn’t monolithic, it’s a dichotomy. It’s good times and bad, happy and sad, wins and losses. You have to be able to take them both and be thankful for them. So, when I think about all of these things, these experiences, these people, and these lessons that I’ve learned, that’s when I’m thankful for SMA.

To paraphrase Coach Tony Bennett, my losses have hurt a lot. They still hurt, and it’s a daily battle, but learning to accept those losses, learn from them, and move forward from them with a thankfulness for where only they could’ve brought me has, and will, allow me to live my life with a freedom like no other. To go after life with everything that I have. Because, “I’d rather have trembling courage over trembling cowardice.”

So, what are your “losses” in life?

We all have them. Some big, some smaller, but they all hurt just the same. How have they shaped who you are and where you are in life? Maybe for a while, like I have, you let them dictate your life? Or maybe you still are? But maybe now is the time to change your perspective? To see those losses differently. To learn from them, move on from them, and be thankful for where you’ve been, but more importantly, where they’ll take you.

So, as you go through your day, week, month, and year try and take a step, or roll, back a bit. Take a breath. Take two breaths. Treat each breath, each moment, as a chance to move forward. To change your perspective and change your future. Because yeah, there are things in the past that have hurt, and there will be things in your future that will hurt as well, but those things have brought you to where you are right now, in this very moment. It’s up to us to decide where we go from here.

…Oh, and one more thing. I told you that the team who lost in the first round to a sixteen seed came back the very next year to make it to the Final Four. What I didn’t tell you though, was the end to that story. After UVA beat Auburn in another stunning (one point, last second) Final Four win, they went on to play the Texas Tech Red Raiders in the National Championship… and, spoiler alert, they WON in overtime!

How about that for a come back story? WAHOOWA!

The University Of Virginia Cavaliers moments after winning the 2019 NCAA Tournament. Photo credit: news.virginia.edu

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 myremarcs@comcast.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.

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.