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.”
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.
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.
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
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.
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!
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 firstname.lastname@example.org, 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.