Coronavirus: “It’s A Jungle Out There”

Adapted from My RemARCs Facebook post on March 11, 2020.

There’s a lot of information going around right now about Coronavirus. Some of it’s good, some of it less so. As bad as the actual virus is however, I think there’s one bit of good that can come from it, or rather, be learned from it.⁣

Right now—as Coronavirus is causing people to rethink vacations, visiting family, going to the movies or a concert, and even just leaving their house—the entire nation is getting a small taste of what those of us with compromised immune systems go through every day of our life.⁣

We ALWAYS have to ask if someone coming to the family gathering is or has been sick.⁣

We ALWAYS have to wonder who the last person to sit at our table at the restaurant was, or to touch the elevator button.⁣

We ALWAYS have to wonder if the person right next to us is going to sneeze or cough.⁣

You see, for us, every virus is Coronavirus. Every cold might be pneumonia. Every germ could be 2 weeks in the hospital. We have to treat it all as potentially life or death because it literally could be.⁣

In fact, most people with Spinal Muscular Atrophy, or diseases like it, don’t die from their disease. They die from complications from a cold, virus, or infection that their bodies simply aren’t strong enough to fight off.⁣

Now, that doesn’t mean that we live our lives in fear going around like Adrian Monk.

“It’s a jungle out there. Disorder and confusion everywhere. No one seem to care. Well I do. Hey, who’s in charge here? It’s a jungle out there. Poison in the very air we breathe. Do you know what’s in the water that you drink? Well I do, and it’s amazing. People think I’m crazy, ‘cause I worry all the time. If you paid attention, you’d be worried too. You better pay attention. Or this world we love so much might just kill you. I could be wrong now, but I don’t think so. ‘Cause it’s a jungle there.” -Theme song to the show “Monk” by Randy Newman

No, we try to live as normally as possible. We take precautions—all the ones that you’re taking now, and should be taking always. In the winter months and the height of flu season, we try to limit our exposure as much as possible and still have a life. The reality of the fear of getting something always remains in the back of our minds, though.⁣

So as you go about your days, and you take your precautions, and as eventually a vaccine comes out and things start to get back to normal, think about us. Think about how we’re still practicing social distancing and we’re still wiping things down with antibacterial wipes. And maybe, think about continuing to do them yourselves. Because if everyone did, we could worry just a little bit less, we would be able to think about it a little bit less, and we could live a little more normally.⁣


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.net, 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.

5 Fun Feeding Tube Facts

I saw the other day that it was recently “Feeding Tube Awareness Week.” I’m not exactly sure why such a thing is necessary, much less an entire week. It seems like nowadays there’s a day or week for everything under the sun, including International Everything Under The Sun Day!

…okay, so maybe I made that one up.

I don’t really talk too often about having a feeding tube. You might not have even known that I have one! It’s not that I’m embarrassed about having one—to be honest, it’s not really that big of a deal for me anymore—it’s just not that interesting of a conversation topic. Sure, it sucks not being able to eat a cheeseburger, or BBQ, or Chick-fil-a—they’ll have that in heaven though—or pretty much anything except a few certain cookies dipped in coffee, but as I’ll talk about later, it’s a lot better than the alternative.

That said, I thought now might be a good time to share with you some fun facts about feeding tubes. Sound good? If not, too bad you’re getting them anyway.

5 Fun Feeding Tube Facts

1. I’m now the ultimate multitasker. I’ve always been good at multitasking, having the ability to doodle and listen in class, or watch basketball on my iPad and watch NCIS on the TV… I know, skill. But now that I have a feeding tube, I can eat while I sleep. Yes, I know, you’re jealous.

How do I do this? Well, I first lay a cheeseburger on my stomach. Then I go into a deep meditative state where I slowly absorb the cheeseburger through osmosis… okay, yes. I made that up too. But you have to admit, that would be pretty cool!

In all seriousness, my diet consists mainly of this stuff called Vivonex. It’s basically all of the essential amino acids, proteins, vitamins, and nutrients that your body needs to survive made into a white powdery substance… no, not cocaine. I think?

So, you mix that with water—the Vivonex, not cocaine—and then pour it into a bag which attaches to a small pump. The bag has a long, narrow tube that attaches to my feeding tube. Then, you set the pump to the amount you want it to pump per hour and, as Emeril says, “BAM!” You now have the ability to eat while you sleep.

2. CAFFEINE! Had a long night and can’t seem to even make it out of the bed to get to the coffee maker? No worries, mate! (Man, I wish I was Australian!… or at least had an Australian accent.) Just fill a syringe with your desired amount of the coffee of your choice and strength—cooled as to not melt the tube inside your body—and push that beautiful bean juice right into your tube and stomach! Drinking your coffee is so 2019!

I suppose this could also be done with other mind and mood altering beverages but, alas, I haven’t tried that yet.

3. You know all those juices that everyone drinks nowadays? They say they don’t taste “that bad,” but they never will say that it tastes good either. Makes me think it probably really tastes like dirt with a nice grassy finish. But I wouldn’t know because I just dispense with the hassle, bypass my mouth, and send it right to my stomach for all the benefits. Take that, ya juice cleansing hippies!

4. No one likes medicine… unless you’re my 3 cousins who think it tastes like candy… weirdos! Me, I hated it! As a kid, I’d start gagging just at the sight of it. I still don’t like grape flavored things because it all reminds me of medicine. I even preferred to go to the hospital and get an IV with the antibiotics I needed rather than have to take medicine orally… I know, crazy. Now though, when I’m sick—which luckily, hasn’t been very often—you can pump me full of all the medicine in the world without me even blinking an eye. Just measure it out, put it in my tube, and I’m done. No taste. No gagging. No IV’s.

5. I’m ALIVE! It’d be kind of hard to write this article if I wasn’t. Seriously though, I wouldn’t be alive today if it weren’t for having a feeding tube.

I fought the need to get one for longer than I should have. I began to have trouble swallowing near the end of high school—about 10 years ago. At first it was just a little bit more difficult with certain foods or textures of food. So, like with everything, I adjusted and continued on. As is the story with SMA however, over time increasingly more foods became increasingly more difficult to eat. Instead of just taking longer to eat, now food was starting to get stuck on its way down. I went through a time where as soon as I was finished eating, I had to have my mom get me out of my wheelchair, lay me on my bed, and hold my legs and feet up over my head so that I could slowly work up and out the small pieces of food that had gotten stuck. You’d think at this point I’d wise up and get the d@*# feeding tube… but you clearly don’t know me. I was determined not to lose the ability to do one more thing!

Over that period of time though—because of both the general progression of SMA and not being able to eat enough to sustain my body—I lost weight that I didn’t have to lose and more abilities I’d been just as determined not to. Using my laptop, riding in the car, getting out of the house, and just getting up into my wheelchair all became increasingly difficult and for some, eventually no longer possible.

Eventually, despite my best efforts to ignore it and push through it, it finally became clear to me—though, it had been clear to everyone else for quite some time—that I had two choices. Either continue “eating,” and also continue getting weaker and weaker until the point where either someone else would have to make the decision to give me a feeding tube, or the worst would happen. Or I could get over the fact that I was losing the ability to eat, and realize that by getting a feeding tube I would be gaining the ability to do something else, something much more important… live!

Spoiler alert, I chose the latter.

Thinking back now, God definitely made everything align when I finally decided to go and have the surgery to place the feeding tube. A friend who was a nurse called the hospital before we went and, for lack of better phrasing, basically made us a reservation. It was almost like checking into a hotel when we got there… a hotel that you really don’t want to be at, but… we were met with a “yep, we’re ready for you.” And for further confirmation, the nurse who initially took all my vitals, gave me an IV, and got me “settled in”—as much as you can be settled in in a hospital… hint, it’s not much—was the wife of a friend from our church.

It wasn’t until the next day or two that the surgery actually took place. I don’t remember when exactly, time has a weird way of blurring together in hospitals. I do know however, that it was during March Madness because, after mentioning that I hoped that I’d be out of surgery in time to see the UVA game, I awoke in recovery to a nurse saying, “you doing okay, Andrew? There’s no TV in here, but I can put the basketball game on this computer if you want?” Even in the fog of anesthesia, that’s an easy question.

Having a feeding tube took some getting used to. It was pretty uncomfortable to begin with, and it can still be at times. Becoming educated about them and the care that they require—though minimal—was more difficult than it should’ve been. You’d think that when you get something like that, a feeding tube, that the hospital would tell you everything you need to know about how to care for it… you’d be wrong. If it weren’t for Facebook and some close friends we might still be finding our way today. Who knew you have to change them every 4ish months?! We didn’t!… until my tube fell out in my mom’s hand that is. Another story for another time, though.

A doctor said something to me once that really stuck with me. She said, we don’t realize how much food, and sharing a meal is ingrained in our social society, and it’s difficult when that commonality is gone. She was right. We really don’t realize just how much food is a part of our culture. When that ability first started to be taken away, I resisted it with everything I had, and I suffered the consequences of it. But after realizing that, of course, it was firstly more important to actually be around. And after I got the feeding tube, I found out that even though I missed the commonality of enjoying food together—and, you know, the taste of delicious smoked meat—it’s really the time and conversation during that time that was most important anyway.

So, there you have it, five fun feeding tube facts. I admit, some of them are a bit silly—or a lot silly—but sometimes, when something comes along that’s scary, or frustrating, or just sucks, what it really needs is a good dose of sarcasm, self deprecating humor, and laughter. It’s a lot better than the alternative, that’s for sure.


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.net, 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 “D” Word

It’s become a trend the in past 10 years. Suddenly someone decides that a word that’s been used in polite society for decades, is now somehow offensive. They take to social media-the invention of which, I believe, can be held partially responsible for this phenomenon-where within 24 hours their outrage is trending. Everyone from celebrities to the news media begin frothing with equal parts shame for their prior ignorance, self righteous pride at their new found level of wokeness, and groveling thankfulness for the individual who pointed out their linguistic iniquities. Then, the word in question is relegated to the ash heap of history, never to be uttered again by those wishing not to be immediately canceled by the hordes of busybodies who have nothing better to do.

There are, of course, certain words and phrases that do deserve to have an end put to them. Racial, ethnic, religious, socioeconomic, gender, or physical/mental ability slurs have no place in society. However, the way to change the use of such language is not through sweeping bans hastily imposed by those on Twitter, but rather an honest, respectful conversation that allows for education with a gradual but eventual goal of stopping the behavior.

There has been, in recent years, such a debate in a community to which I belong. It has sometimes been respectful and honest, and other times not so. But in my opinion, it’s been entirely unnecessary from the start. So what is this word? This “D” word that like Voldemort must not be named…

Disabled.

I must confess, before we go any further, that I used to reside on the other side of this debate. I despised the word and others like it, such as handicapped-which becomes a real problem when you’re trying to ask where the certain type of parking space you require is. “You know, the parking area with blue lines, a wheelchair, and a sign saying only people like me can park there, but that most people ignore and park in anyway!?”

I indulged in using words like “differently abled” and “handicrapped,” which I admit I still have a certain affinity for that last one. Alas, in the last few years though, I finally saw the light and shed my chains.

I am disabled.

It’s true. I was born with a disease called Spinal Muscular Atrophy, and because of it there are abilities that I cannot do, and most likely never will be able to do. Calling me differently abled or handicrapped will not change those facts. It instead, only reinforces the damaging idea that I, and any others with disabilities, cannot possibly handle the despair of being reminded that we are in fact, disabled. “Wait. You’re telling me that I’m in this wheelchair not just because I’m awesome and lazy and don’t like walking, but because I’m… disabled?!”

“But, Andrew” you say, “what about the fact that using that word reinforces negative stereotypes about such people, and that they don’t have things to contribute to society?”

Rubbish! That’s what I say.

Using the word disabled is not what reinforces ignorant ideas about those with disabilities. It is the people who hold those ignorant ideas, and the ideas themselves, that reinforce them.

The word disabled does not inherently come with any malice. Rather, society through ignorance has thrust them upon it. It should not be on the many-who hold no malice or discrimination in their heart or mind-to acquiesce to the loud but few minority and alter their language. It should instead be on the ignorant and discriminatory few to abandon their wrongheaded misconceptions.

Similarly, it is on us all to radiate the truth that treating those with disabilities as equals-no more or less-is the only option.

For those without disabilities, it is on you to root out and rebuff discrimination and ignorance wherever it might rear its ugly head. When your friend or colleague makes a dumb joke, call them out. When a business you patronize doesn’t have a ramp or isn’t accessible, kindly ask them why they don’t want the business of 20+% of population. Talk to your kids about how they should treat people with disabilities, namely, exactly like everyone else. Don’t include us because you feel obligated to out of pity, but because you want to and you enjoy our company… or don’t, people with disabilities can be just as big of jerks as anyone else. Yes, there are abilities that we cannot do, or might need some help with-and it is not offensive to offer such assistance-but at the deepest, most basic human level we are just like you and want to be treated as such.

For those of us with disabilities-this is going to sound unfair, and it is, but it’s also true for the time being-we have to show the world how smart, funny, cool, nice, kind, loving, often sarcastic, even more often awesome, and how all the time down right normal we are. We have to, to a certain point, be better at what we can do than those around us. We have to reclaim for ourselves the definition of disabled, what it means to be disabled.

You see, being disabled is just a small part of who we are. It can only create a mere outline of us, not define nor confine us. So, why assign it unnecessary power? We are not someone pitifully, helpless, and to be coddled and condescended. But rather, artists, actors, doctors, lawyers, chefs, pundits, politicians, influencers, grocery store clerks, business owners, waiters and waitresses, preachers, pastors, teachers, athletes, writers, husbands, wives, fathers, mothers, daughters, sons, sisters, brothers, cousins, friends, different and the same, independent but in need of help sometimes, disabled, and completely and remARCably normal.

For some reason, I have this picture in my head of disabled people taking pictures of themselves to post on Instagram doing the most mundane, boring, and normal things in life while wearing black t-shirts that just say “disabled” on them in white. But, maybe that’s going a bit too far?

Instead, I’ll just settle for us being us. Disabled and all.


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.net, 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.

Cluttered

“Put good in, get good out.”

I really hate cliches like this…

However, over the past 2 weeks or so I’ve found out just how true it is.

The last couple months I’ve been reading mainly books about politics. I’ve really enjoyed them and I feel like I learned a lot about what I believe and how to articulate it. But I found myself, and by extension my writing, stagnating.

I could’ve probably written multiple articles about politics, economics, foreign policy, etc., but this page and website are about more than that. They’re about changing people’s mind, heart, and perception. They’re about how we treat each other. They’re about the things that, from the most basic level, form our thoughts, feelings, and beliefs on everything. They’re about stories.

So, I decided something needed to change.

Over the past week or 2 I’ve been watching the talks from this year’s Passion Conference, and the change has been amazing! If you don’t know what Passion is, it’s a gathering of young adults held every year in Atlanta to worship and grow in relationship with Christ. I was lucky enough to go 3 times with my church’s college group and it’s honestly one of the best events I’ve ever been to!

Some of the speakers this year were Tim Tebow, Sadie Robertson, John Piper, Christine Cain, Louie Giglio, and others. All of their talks that I’ve watched have been amazing, and it’s so cool to see the entire Mercedes Benz Stadium filled with people praising Jesus. But, in a way, for me it’s been less about what they’re saying specifically and more about the overarching commonality of the message and what I’m “putting in.”

You see, for a while I had been filling my time and myself with news, politics, tv shows, Facebook, Instagram, etc., and all that stuff-while not inherently bad-had started to become cluttered. I had also really started feel that SMA was getting the better of me and I couldn’t see a way out of it. Fear and frustration had replaced hope and determination. To quote Christine Cain, the arteries of my heart and soul had become “clogged,” and I could feel. I needed to clear them out and start putting in something that would fill me eternally.

I needed God.

When I started watching these talks from Passion, I started praying more diligently and purposefully. And as I did that, my thoughts became more clear and my writing began to flow. I began to get out of myself, stop thinking about what I wanted to say, and started letting God speak through me. It was almost instantaneous.

I was reminded that God can use me from where I am now, and that the only way out of where I am now is to put everything in His hands and allow Him to lead me there.

You see, this article hadn’t been the first article of 2020 that I intended. In fact, it was supposed to be a fairly short post to go on Facebook and Instagram to keep you engaged until I finished the other article I had planned. But I think this is the first article of 2020 that God intended me to write.

As we enter a new year and a new decade, what are you “putting in?” What is filling up your time, and in turn, yourself? We can say we want this new year and decade to be a change for us. We want it to be better. But if you continue putting the same things in, your going to continue getting the same things out. If you continue to allow the arteries of your mind, heart, and soul to be cluttered and clogged up with fear, frustration, and a bunch of stuff, as Christine Cain said, you’re going to stay stuck and stagnant.

So start putting good in… or maybe I should say, start putting God in.

I don’t know what your relationship with God looks like. Maybe it’s even better than mine and you read your Bible everyday, and pray often, and your growing in your relationship. That’s awesome! I’m glad. But maybe you, like I had, have gotten stagnant and you need a jumpstart. Let this be that jumpstart, that push to start allowing God to work in your life again. Or maybe you don’t understand a thing I’ve been talking about, and this whole Jesus thing is new to you. That’s ok too. We all start somewhere, the key is that you start. Pick up a Bible and start reading. Talk with a friend. Search “Passion 2020” on You Tube and watch a talk or two.

So if you really want this new year and new decade to be better, to be different, start putting God in, and I can guarantee that you’ll start getting good out. I did.


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.net, 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.

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.