Merry Christmas

“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.”

John 3:16 NIV

To be honest with you, I’ve had a pretty hard time getting into the Christmas spirit this year. Between not getting much sleep and some uncontrollable and difficult things going on in our family, I’ve kinda been phoning it in.

If you read my last article, “The Kindness Of A Shepherd,” you know that I watched the film The Nativity Story a few nights ago. Christmas movies are a big thing in my family.

Decorating the Christmas tree? Put on a Christmas movie.

Decorating cookies? Put on a Christmas movie.

Wrapping presents? Put on a Christmas movie.

Chillin out eating the cookies you just decorated 5 minutes ago? Put on a Christmas movie.

It’s just our thing.

So, that being said, it’s fitting and no surprise that it was watching The Nativity Story that began to wake me like Ebenezer Scrooge after his visit from the three spirits.

“It’s Christmas! And a merry one too!”

On Christmas Eve Eve (as Friends says) my three cousins and Mimi came over to continue our tradition of decorating Christmas cookies. For as long as I can remember we’ve done this. First just myself and Mimi then, one by one over the years, my cousins (who are more like sisters) joined in. It’s one of my favorite times.

This year though, with as tired as I am and everything else going on, I wasn’t sure I even wanted to do it. I was so close to saying “let’s just skip it this year.” But, I forced myself and I’m glad I did.

Sometimes it can be bad to push yourself to do things. You just have to say “I can’t do it right now.” That’s ok. But sometimes it’s good to force yourself, push yourself outside of what you want to do. It’s the telling the difference that’s the hard part.

This was one of the good times.

Talking, designing, planning, teasing, laughing, and just being together with family was exactly what I needed. Now it felt like Christmas, and I felt like it too.

So as I lay here on Christmas Eve finishing this article-after my family has all gone home and I stay up later than I should to be ready to spend more time with them for Christmas dinner-I’m full with the warmth (both from family and the bourbon that was in my coffee), happiness, laughter, peace, nostalgia, and contentment that only Christmas can bring. It brings it not because of presents, or food, or lights and decorations but because it’s the perfect and exact mixture of the two things that bring us the most real and lasting joy. The two things that even in the midst of our exhaustion and hardest times, when we can barely muster a “Merry Christmas,” have the ability to lift us up and bring us out of our circumstances and fears. And the two things that brought me to getting in the Christmas spirit. The gift of a family and the gift of a Savior.

I hope that, like me, in the middle of everything that this season brings you’ve found both family and Christ. I hope that you feel their warmth, happiness, laughter, and peace. And I hope that like in one of my favorite Christmas movies, How The Grinch Stole Christmas (the Jim Carey version), you discover that “Christmas perhaps, means a little bit more.”

Merry Christmas!


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.

The Kindness Of A Shepherd

I watched the film The Nativity Story the other night and it was really good! I had seen parts of it before and I obviously knew the story, but watching it more intently got me thinking about something.

Most of the film is about Mary (Keisha Castle-Hughes) and Joseph’s (Oscar Isaac… yes, Poe Dameron from Star Wars Oscar Isaac) journey to Bethlehem. It shows a unique and realistic portrayal, not unnaturally beautifying or hastening the long and arduous trek, but rather giving us a glimpse into the hunger, exhaustion, and pain that they most likely endured.

Along the journey as they passed through towns and cities, they of course had encounters with various types of people. There were the vendors, soothsayers, and townspeople, and there were the tax collectors, the pharisees, and Roman soldiers. Many paid little attention to the couple and their donkey. Who would? They were distinctly normal and seemingly unremarkable.

What struck me though, were the people who did take notice.

One such encounter was with a shepherd not far outside of Bethlehem. He had nothing except the sheep he oversaw. He was old, tired, and hardened by the years outside. As Mary and Joseph approached him and his fire along the side of the road, he calls to Joseph and invites them to warm themselves by his fire. They have a short interaction between them where the shepherd shares some of his life and struggles, but leaves them with a bit of wisdom that “we’re all given a gift.”

I’m sure in reality Mary and Joseph met many people along their journey. In fact, with the census taking place there’s a good probability that they traveled with a group. These people -whether they were traveling together, townspeople, pharicees, Roman soldiers, or a shepherd- had a choice to make.

How would they treat Mary and Joseph?

Odds are that along the way food ran short. Would they share their own, seeing that a pregnant woman needed the nutrition to keep her and her baby healthy?

When the nights were cold would they share their fire and warmth like the shepherd?

Would they offer their own donkey when Mary’s was too tired to continue?

All of these are real situations that they would’ve encountered and opportunities for kindness that were presented.

Just like the people who Mary and Joseph met along their journey, we’re presented with opportunities to be kind to people we encounter every day. And just as the shepherd (or few else) had no clue that he was sharing his fire with the woman who was carrying the Savior of the world, we have no clue what’s going on in someone’s life outside of the infinitesimal glimpse that we’re given.

All we’re given is a choice. And that choice, whether we know it or not, has the power to change everything.

What will you choose?

Merry Christmas.


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.

I Hate Writing

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 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.

Sports, Social Media, and Superstition

October.

I would contend that October is probably one of the best sports months there is, followed closely by February and March (Super Bowl and March Madness). October has pretty much everything though; Football (both NFL and college) is in full swing, MLS playoffs are getting underway, NHL is back, the NASCAR playoffs, and of course, the one and only MLB playoffs and World Series.

Now, if you know me or you’ve read my previous articles (What UVA Basketball and Having SMA Have In Common), you know that I’m a sports fan and you might have some idea of which teams I like. However, if you go and look at my Facebook posts, tweets, or Instagram feed you’ll find very little evidence that I even like sports, much less what team I like…

Braves vs Nats Spring Training game at Disney.

Let me explain.

A few years ago I started to notice something strange. I should start off by saying that I’m not a huge trash talker. I’ll engage in the occasional banter, and I must admit that I can’t resist taking part in some good Redskins, Patriots, Hokies, Nationals, or Yankees bashing. I prefer to let my teams do the talking though. So, when I’d post on social media about sports, I mostly just posted things like “Jack & Coke and Cowboys vs. Redskins, doesn’t get much better! #GoCowboys #AmericasTeam.” Not the most searing roast, right? Here’s where the strange part comes in…

every time I posted about one of my teams, they lost!

Really old picture. She’s a Redskins fan, I’m a Cowboys fan, it’s a whole thing.

At first, when I was being a bit more bold about my trash talk, I thought maybe it was some kind of karma or something… I don’t really believe in karma but, you know…

So I dialed back the smack talk a bit and just posted things like the example above. Yet still, every time I posted about one of my teams, even if the game was half over and they were ahead, they’d somehow lose in spectacular fashion.

After this pattern continued, I started just posting the “watching” activity on Facebook with whatever game I was watching but still, they continued losing.

I can already hear the haters.

I can probably even tell you their names. They’ll be saying, “maybe you just like horrible teams? Huh-huh.” I get it. If a Virginia Tech fan was saying this to me I’d probably take the opportunity to say the same thing. It’d happen to be true in that case but… Here’s the thing, when I stopped posting about them, they started winning again!

I wrote my first article for this website about UVA’s historic loss in the first game of the 2017-18 NCAA Tournament, and their historic comeback to win the NCAA Tournament the very next year, and how that mirrors life. That whole 17-18 season I didn’t post a single post about how well the Cavaliers were doing… until it was time for March Madness.

One of my favorite things come March, besides my mom’s birthday of course, is filling out a bracket. I usually try to be pretty realistic and avoid just picking my team to go all the way. That year though, I put Virginia all the way through. It wasn’t an unpopular pick. They had a real chance of winning. But then, I did something I hadn’t all year. I posted the picture of my bracket and said “#GoHoos.” We all know what happened next.

This season, when they won the National Championship, I posted nothing about UVA and when I filled out my bracket, all of my brackets, I picked teams besides UVA to win it all… even though deep down I knew they would.

I know all of this sounds a bit crazy.

I wouldn’t say that I’m really a superstitious person. If we’re being honest -which we are, otherwise what’s the point of doing this whole website- I think all that stuff is a bit dumb. However, there is an unexplainable, undeniable correlation between me posting about my teams and them losing.

The Office is life.

So, as we go through the next few months, and the various points throughout various sports seasons, you’ll see my social media stay deathly quiet when it comes to sports. You might have the inclination to start thinking I’ve abandoned my teams or something like that. In fact it will be just the opposite. Though my feed will stay silent, and I’ll be mustering every ounce of effort to keep it that way, I’m cheering harder and louder than ever on the inside.

Me, after a Braves vs Nationals game in DC, with a devilish grin because we (the Braves) won.

…And if you need any more proof of my theory, I submit this very article as evidence. I started writing this article the night before the Braves played the Cardinals in game 5 of the NLDS. I’m finishing it, stunned and silent, after the Braves just lost spectacularly 13-1 with the Cards scoring 10 runs in the first inning. Coincidence? You decide.


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.

It’s The Little Things

“ It is the small everyday deeds of ordinary folk that keep the darkness at bay. Small acts of kindness and love.”

-Gandalf (The Hobbit)

I want to tell you a story about just one of those small acts of kindness that Gandalf speaks of. To you, it might not seem like that big of a deal, it was a small gift, but what it encapsulated was a lesson and reminder far bigger and more important than the size or actual gift that I received. Let me tell you about it…

Not too long ago my cousin and her husband came down for a short visit from Michigan. It was really great to see both of them and we had a great time together. We hung out, talked, laughed, watched some Netflix, and even “watched” a rugby match… even though we had no clue what was actually going on -it was St. Patrick’s Day though, and it was Ireland vs Scotland so, it felt like the right thing to do.

The first night they came over, we were comparing iPhones and talking about which ones they had and which one I thought I’d like to get. We talked about what assistive features the iPhones X’s had that might be beneficial to me. I was telling them how my 6 Plus is really the perfect size for me because of it being big enough for watching TV shows or movies, but not too big, like an iPad for instance, so that I can still reach the entire screen with the stylus I use. I also casually mentioned that my stylus had started not working as well because the fabric tip had become worn down and had small rips all over it (a possible indicator that I’m on my phone way too much). The conversation moved on and eventually they went back to my Mimi’s house for the night.

An extremely old picture of my cousin and I in our Gelati Celesti t-shirts, because for some reason I don’t have one with her and her husband… we need to fix that!

The next day they went out to do some shopping, hitting up the areas big three outdoor stores Bass Pro, Cabella’s, and Green Top, and then came over that evening to eat dinner, have some Gelati Celesti ice cream (the BEST in RVA, or the country for that matter), and hangout some more. When they came in, my cousins’ husband had a bag in his hand and said that they had gotten me something while they were out. I was surprised. He opened the bag and the first item he took out was a box of chocolate flavored Black Rifle Coffee K-cups that they know I like, but hadn’t tried the chocolate variety yet… I will always accept more coffee, and can you really go wrong with adding chocolate to anything? I think not. The second item though, I don’t think they quite understood how much it meant to me.

It was a new, extremely lightweight stylus.

My stylus.

“So, what’s the big deal with a stylus, and why are you writing an entire article about it?”

Well, in a way you’re kind of right, it’s just a stylus. In another way though, perhaps a more important way, a way eluded to by Gandalf, you’re entirely wrong.

For most people, a stylus is a very trivial object. It doesn’t really cost too much and you don’t really use it a lot, or at all, because you can do the same things with your thumb or finger. For me though, SMA(Spinal Muscular Atrophy) causes limited mobility in my fingers, hands, arms, and ultimately body, which makes it impossible for me to reach and navigate my phone without a stylus. In fact, in the past few years I’ve been limited to only being able to use my phone when I’m lying down on my side on the couch… unless I want to have my mom do something for me which, no offense mom but, no.

So, for me, a stylus is really my access to everything, especially as I’ve been able to get out of the house less and less in the past few years. Facebook, Twitter, Instagram, Safari, writing this article, playing a game, and texting have all become my outlets to the world, and I wouldn’t be able to do any of them without a stylus. As my previous stylus got older and more worn out, all of those things became increasingly difficult. It took longer and longer to just type one sentence much less an entire article. It was also much heavier and harder to move around, which inevitably lowered my expert level Angry Birds score.

…Yes, I’m 27 and still play Angry Birds. Go take your judgement somewhere else.

With this new stylus though, it’s much lighter and significantly easier to tap whatever I’m trying to at the time. I can almost type as fast as my brain is moving… almost. But while all of that is great and invaluable, and my game scores have definitely improved, that’s not the reason why the gift of this little stylus meant so much to me.

Life gets busy.

It’s easy to let our schedules and our “stuff” take over. Whether it’s work, meetings, school, kids’ sports practice, yard work, house work, wasting time on social media, or scheduling in time to binge all of the Marvel movies for the third time, it’s easy to let busyness take over. Even getting together with friends or family can become stressful, adding “just one more thing” to our already hectic lives. Eventually, we start to let things slide. Usually it’s the small stuff that goes first. Replying to texts, checking in on friends and family, making it home for dinner on time with the family, or even just being able to truly listen and hear someone while having a conversation. Many times we don’t even notice it’s happening. We have so much coursing through our brains, already thinking about the next item on our mental list or the next event in our schedule, we miss what’s happening right in front of us, in the moment we’re currently in. The people around us notice, though. Because often times, it’s the little things that make the biggest impact.

The little things like:

Sending a text just to check in.

A $5 donation to a cause that matters to someone.

An encouraging word.

A card in the mail for no other reason than to let someone know that you’re thinking about them.

An invite to have a beer or two… or if we’re being honest, three or four.

It’s a smile in passing or hug just because… but not like a Joe Biden kind of hug. Creepy.

It’s hearing that people from across the country, and even world, are praying for you.

Making the coffee for your husband or wife in the morning so it’s ready when they get up.

Taking dinner to the people who just moved into the neighborhood, or had surgery, or lost a family member, or just because you can.

Or in this case, it’s the gift of a little stylus.

You see, it wasn’t them buying me a new stylus that meant so much to me. It was that they heard me.

My cousins were actually listening. They heard me say something that was making my life a little bit more difficult, and took the time to seek out a solution to it.

They actually heard me even more than I heard myself. A statement made in passing conversation, that I probably didn’t remember saying 2 minutes after I said it, they heard as something they could do to make a difference. An unconscious ask for help. They took an interest in how my life was going, what I was saying, and were willing to act. They were present and aware in the moment. When we allow busyness, and ultimately the selfishness that succeeds it, to creep into our lives though, we miss or entirely eliminate those opportunities.

We stop hearing people.

We stop seeing people and only see the next item on our list.

The texts to check in stop.

The invites for a beer stop.

The donations stop.

The encouraging words or a passing smile stop.

We are no longer present in the moment and we begin to miss the little things.

We don’t necessarily intend for this to happen, and it’s not out of malice or some kind of grudge. We just often don’t even realize what we’re doing. Eventually though, we isolate both ourselves and the people in our lives who felt the love and kindness of those acts.

I know first hand what it means and feels like to be isolated.

In the last few years, because of my SMA currently making it more difficult for me to get out of the house, I’ve been more isolated than I’ve ever been. I didn’t choose it and I don’t particularly enjoy it. So, I know what all of those texts, conversations, random cards in the mail, a beer, or something as simple as a stylus can mean to someone. I know what it means for someone to make a donation to a cause that means the world to you. Or to know that when you’re sick, or even when you’re not, that people across the country are praying for you. I’ve felt their presence and I’ve felt their absence.

For instance, probably two years ago now, I reached out to someone who was going through a really rough time and had posted on Facebook asking for prayers. I wouldn’t say, at that time, we were really friends. We’d always been friendly, but he was a bit younger than me so, we never really hung out as kids besides stuff that both of our families were involved in- plus, as a kid, I (incorrectly) thought I was too cool for school, and wouldn’t have been caught dead hanging out with someone younger. After I sent the message just letting him know I was praying for him and willing to talk if he ever wanted, we began to message back and forth pretty often. Sometimes it’s about serious stuff- our struggles, girls, our hopes for our respective futures- and sometimes it’s about trivial stuff like movies, TV shows, or politics. It’s ended up becoming an invaluable friendship, and it never would’ve happened if both of us hadn’t taken the time, and been willing to reach out and actually care about how the other was doing.

However, I also know what it feels like for all of those to slowly fade away. Texts from friends first get less frequent and then eventually stop. Conversations quieted. The feeling that people understand and care is replaced by the feelings of abandonment and that the friends who you thought “got it” in reality don’t, or maybe they just forgot. In response we recoil. Drawing into ourselves and further cutting ourselves off.

“If they don’t care enough about me to check in, then why should I care about them?”

“Friends are overrated.”

“I’m fine.”

These become our thoughts. A self defense system employed to disguise our hurt. They are just as dangerous as the acts that predicated them though. Neither done out of malice, but rather a lack of awareness and a degree of selfishness and self preservation that exists within us all.

It’s not just me.

Odds are, at various times throughout our lives, we’ve all experienced both sides of the equation. We’ve been both the one wondering why we feel so alone, and also the one forgetting the small stuff and too busy to care. You don’t have to be chronically ill, or have a “disability,” or even be actually physically isolated from other people to feel the absence of those “little things.” And you don’t have to be swamped at work or overwhelmingly busy to be the one allowing the little things to go by the wayside. All it takes is the ups and downs of everyday life to bring us to either situation.

Even so, sometimes with social media it can feel like we’re more connected than ever -and perhaps in some way we are- however, recent studies have shown just the opposite. My generation, millennials, feel more disconnected and isolated than ever. I’m not sure exactly what’s causing it -I’m no psychologist by a long shot and smarter minds than mine have their theories I’m sure- but perhaps to some degree, it’s because of busyness. Depression, suicide, drug use, mental illness, etc., are all on the rise, and while they aren’t directly caused by busyness and feeling isolated, both can undoubtedly exacerbate them all. I’ve seen it happen and I’m fairly certain you probably have as well. The same reasons I listed above, that causes us to become individually unaware, disconnected, and to a degree selfish, are leading us to become a society unaware and unconnected to the pain that’s occurring right in front of our eyes. We’re missing the subtle cries for help from our friends, neighbors, co-workers, and even family members. We’re missing the little things, the things that keep us connected, as a society.

So what can we do?

To be honest with you, I’m not 100% sure. As I said, I’m certainly not a psychologist and I don’t have a PHD. I think a good place to begin though, is with being mindful about our mindset and our priorities in life. We might have intentions of not letting our schedules and busyness take over our lives, but sometimes it’s just inevitable. It’s these times when it’s important for us to remember to be intentional about the little things. Make them a priority. Set a reminder on your phone to check in with your friend who’s currently having a rough time -you can even make Siri yell at you in a ridiculous voice if that helps. When the rest of the staff at work goes out to lunch or for a beer after work, go with them, get to know them outside of work, and find out how their lives are going. Buy a bunch of funny, slightly inappropriate cards (the best kind) and some envelopes and stamps so that when someone you know is sick -or really, just for the heck of it- you can easily write them a note and send it.

Gasp! I know, actually writing something on paper and sending it in the actual mail?! Who does that?!

I think it also comes down to training our brains to look for the subtle cues that people give that say “I need some help” without actually saying it. As someone who lives with a disease that requires me to have help doing nearly everything in my life, I know a little bit about this. For me, already having to have help doing so much, asking for help with “one more thing” often makes me feels like I’m a burden. I know deep down that I’m not, my family and those who’ve helped in the past have always been the best at selflessly and lovingly helping me with whatever I needed, but the feeling still exists. I think that feeling exists for everyone. We know that everyone has their own lives, struggles, and busy schedules so, when we’re having those times our natural response is to just bury them or hide them so we don’t add burden to our family or friends lives. As someone who does that, we have to train ourselves not to. We have to let people in. For me, having always been reluctant to share about my life with SMA, writing these articles is a big part of that.

On the flip side of that equation is the need for us to be able to identify when people are doing that and reach out to them. This requires us to be present and aware in the moment. Listening to what people are truly saying as we’re having a conversation. We have to train our brains to hear and be ready to act on the little things. Because just as with my cousin and her husband listening and hearing me say something that I was struggling with, -and their kind gift of my handy dandy (does it feel weird saying “handy dandy?” I think it feels weird) little stylus, and just as Gandalf pointed out- it’s the little things that matter most.

So as you go through your next week or two start training yourself to be on the lookout for those little opportunities. Throw out your predetermined thoughts about why someone is acting a certain way, or saying and doing something, and see them for what they really are, who they really are. Make a difference in their day. It doesn’t have to be a grand gesture, or buying something for someone. It can be as simple as the words, “how are things really going?” or “I’m here for ya,” or maybe the gift of a stylus, but we have to be ready and aware when the opportunity arises. Will you?


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.

Your (Or Your Kids) Perfect Attendance Award Sent Me To The Hospital

It’s that time of year again…

The days are getting shorter (ugh), the temperatures will start to get that slight undertone of cold in the air (double ugh), and the kids are back in school (an ugh that comes so deep from within my soul that it hurts).

You know, it’s funny. Even though I haven’t had to have a first day of school in going on 10 years, I still let out an audible groan every time a back-to-school commercial comes on TV, and I still dread that official death of summer that is the first day of school. As a kid I always had mixed feelings about September coming. On the one hand it meant school was starting, but on the other much more enjoyable hand, it’s my birthday month. So, if school was going to come, as it inevitably did, it might as well come along with some ice cream and presents as well, right?

Me on my 25th Birthday.

That first day of school -no matter what grade you’re in, or perhaps how long you’ve been teaching, or sending your kid off on the bus- always brings with it a certain degree of nervousness.

•Will you have lunch with anyone you know?

•Will some other group of kids steal the lunch table that you and your friends have claimed as “yours” for the past however many years?

•What to bring your lunch in? Or more importantly, what to bring for lunch? Which can either, depending on the level of oder or trade potential, make you a lunchtime pariah or celebrity.

•Will you like your teachers?

•Will your teachers like you? Or if you’re a teacher, will you like your students and will your students like you?

•What to wear?

•Is my hair good?

•Shoes on point? (Always a big priority for me. I know, kinda ironic for a guy whose feet have never touched the ground.)

•If you’re a teacher, did you post enough pictures of your classroom on Facebook and Instagram so that everyone knows that you can out cutesy even the most seasoned of teachers?

•Do I have enough supplies?

•Is my lesson plan ready?

These are just some the questions and stresses that run through our brains in the days leading up to and on the first day of school. I remember many of them well.

For those of us who live with chronic illnesses and disabilities, the start of school brings with it an entirely different, much deeper set of thoughts and stresses.

In a word, GERMS.

Red Skull, the leader of Hydra vs. Captain America. Photo credit: thathashtagshow.com

Germs at school are kinda like Hydra from the Captain America movies (some of my favorites), “cut off one head, two more shall take its place.” Germs at school say, “disinfect one bacteria, two more shall infect in its place.” It is the perfect breeding ground for everything from a common cold, to a stomach virus, to the flu. For most people, it’s really no big deal. Your immune systems are like Cap post serum injection. An uppercut here, a shield throw there and those fascist bacteria are no problem for you. For those of us who have compromised immune systems though, the threat is compounded ten-fold. It becomes a daily battle of countless rows of desks and table tops previously occupied/sneezed on/coughed on by who knows who. Dry erase markers last used by who knows who or when they last washed their hands (cringe). In the words of Alton Brown on Iron Chef America, school for us is a “veritable pantheon” of opportunities to get extremely sick.

We take counter measures, of course. My aide, Mrs. Taulbee, wiped down my desk with a disinfectant wipe in every class I had before I’d even think about touching the desk. I often used hand sanitizer, which I still hate the smell of. When friends or family members get sick, we simply and in the nicest way possible say “stay away!” Many people my family and I know through social media that also have Spinal Muscular Atrophy, or other diseases that compromise the immune system, even go so far as to pull their kids out of school and homeschool for a few months during flu season because it’s so dangerous.

Though I made slightly light of it at the beginning of the article, the dangers of getting sick are real and intense. A common cold for you turns into pneumonia for me. A stomach bug with a couple of hours of puking for you, turns into dehydration, undernourishment, and the threat of aspiration for us. What is the flu for you can become weeks in the hospital with the real possibility of death for me.

To be blunt, no one, or very few, actually die from having Spinal Muscular Atrophy. They die from getting a cold, or the flu which turns to pneumonia, or some other infection or virus that our bodies simply aren’t strong enough to fight.

Yes they’re scary but, to some degree, the risks and their consequences are inevitable. You can take all the precautions in the world, but at some point, if you want to have a life and not stay shuddered in your perfectly disinfected home, you have to take the risk. However, there is one thing that people who don’t have compromised immune systems can do to help those that do.

STAY HOME!

If you ask me, the Perfect Attendance Award given out at the end of each school year is probably the dumbest thing that people trying to educate children could’ve ever come up with. Let’s first begin with the fact that it’s almost impossible that anyone isn’t going to miss at least one day of school for some reason or another. And that’s okay. It’s even less likely that you won’t, at some point in the nine and a halfish months that school is in session, get sick and have to (or should have) stay home. Which is okay as well… in fact, it’s even preferable. So then, why in the world are we effectively encouraging kids to want to come -or their parents to send them- to school sick and inadvertently shaming those who choose to stay home? Not to mention the fact that by going to school sick, you get more kids sick, who then either have to stay home or they themselves come to school sick and in turn get even more kids sick. It’s a viscous cycle.

We can’t blame the kids. Heck, I was an idiot as a kid! I thought grilled cheeses were called ”girl cheeses” and would give me “coodies” if I ate them. Man, was I wrong. About both grilled cheeses and girls!

No, it’s parents and adults who set the tone. We’ve become a society so concerned with getting ahead in our lives, whether it’s work or school, that we’re willing to put those we love at risk. We think that we can’t miss even one day to take care of our own, or our kids’, health. But it’s not just your own or your own kids’ health that you’re putting in jeopardy by going to work or school sick, or just back to school or work too soon. And that’s the key…

Whether you know it or not, we all know someone who has a compromised immune system.

It might be a grandparent, great grandparent, or a new born niece or nephew whose immune system just isn’t as strong enough because of their age. It might be your kids friend at school, the person who sits at the desk after them, or even that child’s brother or sister at home who has a chronic illness. When you send your kid to school sick, or not completely recovered, you’re putting all of these people at risk. I can’t tell you the number of times that when I was a kid and got sick -and had to go to the hospital because things went downhill so quickly- we could easily trace back who I, or a close family member or friend, had come in contact with that subsequently transferred those Hydra hailing germs to me.

So here’s what I (and actual doctors) suggest. Or rather, plead.

Wash your hands and wash them often. Even if you’re not sick frequent washing stops the spread of germs. I heard someone say something about singing The Itsie Bitsie Spider in your head as a good amount of washing time but, better go with Freebird or Stairway To Heaven just to be safe.

If you have a fever, consider yourself contagious for at least 24 hours after your fever goes away, even if you feel fine. Just because you feel better doesn’t mean that you’re not still carrying germs that you can pass on. Nobody wants them. Stay home.

If you don’t have a fever but don’t feel well, here’s an idea… stay home! I know, “but I have things to do!” I think I’ve already adequately covered this response but, I’ll say it once more. Every time you sneeze, cough, wipe your nose, touch your face, rub your eyes, and even just breathe you’re spreading your nastiness all over place, even with the most thorough of hand washing. Just don’t. I promise, the world is not going to end if you miss one day of school or work… unless God happens to be reading this… if He misses a day of work, well, I don’t wanna know what then.

Excuse my language here but… GET A DAMN FLU SHOT! There are many people in the SMA community who don’t even let people in their home who haven’t gotten a flu shot. Honestly, I don’t blame them and I’m about ready to join them. And please, don’t even get me started on the whole “flu shots give people Autism” CRAP!

And last, but certainly not least, get rid of the Perfect Attendance Award. If the past over a thousand words of this article haven’t convinced you then, well, I don’t know what to tell you. You’re kid isn’t not going to get into Harvard because they missed one, or even two *gasp*, days of school. For those with complex medical conditions and compromised immune systems though, well, that Perfect Attendance Award might just send us to the hospital… or potentially, worse.


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.

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.