My RemARCs

Is it really already mid-February?

With each passing year, I’m increasingly aware of how right all the “old” people were in proclaiming how time accelerates as you age. It’s a strange sensation how it can simultaneously feel as if New Year’s Day 2020 was just two days ago and also two decades ago. There’s something deeply profound to be uncovered there, but that’s another article for another day, which if I indulge, will end up in this article today… and that’s the last thing this update needs.

In fact, If I disclosed how many times I’ve written and rewritten this update you’d probably wonder if this “writing thing” is actually “my thing.” And I’d tell you to join the club. We convene nightly at 10 pm and have coffee and cookies in the back that you’re welcome to… please try not to be late, though. Self-loathing begins promptly.

So, let’s agree to not base Andrew’s entire writing future on this one newsletter. Deal?

In all seriousness, I’ve learned over the past year just how difficult writing is, especially if you want to do it well. To paraphrase and expand on Ratatouille’s “anyone can cook” mantra, anyone can write… but not just anyone can write well—that takes work.

From the beginning of our journey together, I’ve been committed to prioritizing the necessary work to refine my writing. Taking time to learn and grow was an intentional effort last year and was one factor in my prolonged pause in posting (again, has it really been a year?). Yet at the same time that learning process was often derailed by daily life with Spinal Muscular Atrophy.

I posted last spring about receiving the first oral (feeding tube for me) therapy for SMA, Evrysdi. As a writer I know I’m not supposed to be found wanting for words—especially as loquacious as I tend to be—but I truly can’t describe how miraculous this was and is.

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As I said then, when I was diagnosed 29 years ago little was understood about SMA. If, at that time, you had asked my family and many researchers whether they thought there’d be three FDA-approved therapies by 2021—if answering honestly—they’d have likely said “no.” They had hope of course, but it was simply unfathomable. Even I—as I got older, more involved, and more educated (though, I too had much hope)—didn’t expect one in my lifetime… until there was and reality changed.

A short aside:

If you’ve donated to or participated in one of our many fundraisers over the years, or perhaps prayed for us along the way, you own part of this miraculous new reality. Alongside the countless families fighting for awareness and funding through hardworking nonprofits, researchers and doctors doing the difficult day-to-day work, and even the representatives in Congress and Senate who prioritized funding for research (before devolving into complete demagoguery), YOU made these therapies possible. I think I’m safe in speaking for all of us who have SMA and our families when I say, Thank you!

Your support and willingness to consistently give has given us the gift of more time. More time with family and friends. More time to work and play, create and enjoy. More time to influence and inform. And more time to continue the fight. Because while these new realities have been life-altering for many, there are still many realities left unaltered.

I’ve been blessed even in the ability to receive Evrysdi while many with SMA can’t. I can live in the reality of knowing that it’s keeping my SMA from progressing further than it already has, which is the main goal of Evrysdi. However, therapies are not cures and they don’t affect everyone equally. Much of my daily life hasn’t been altered in the ways hoped and it’s had some frustrating side effects as well.

When New Realities Look Like Old Realities.

Fatigue and exhaustion were major themes of both my and my family’s life last year (and continue to be today). When you live at a fairly high fatigue threshold on the regular, any new additions (no matter how minimal) aren’t particularly welcomed. Unfortunately, one of the few side effects of Evrysdi happens to be just that. Additionally, an aspect many don’t consider is how side effects and challenges aren’t limited to individual impact. They divide, multiply, and have side effects of their own for families, caregivers, and those in proximity to the person receiving treatment. Fatigue becomes fatigue not only for me but for our family. Exhaustion becomes exhaustion not exclusive to me but experienced by my parents in extension.

The benefits both big and small—from halting progression to an incremental increase in the ease of typing this article, or some additional flexibility in my joints—are no less miraculous. In one sense, I’m probably the healthiest I’ve been in my life. However, these realities don’t negate the realities of the side effects or abilities left unaffected by Evrysdi either. I still require hours of medical routines throughout the day, breathing still becomes challenging from time to time, swallowing is still a struggle, and isolation is an uninvited yet consistent companion.

These daily realities aren’t unique to me or my family. And I’m not interested in selling you a sob story of how dreadful my days are, provoking you to pity poor Andrew. I do, however, want to be honest and make it clear that simply because there are treatments doesn’t mean our work is done. It’s for that reason our advocacy continues for awareness, funding, and access to therapies, but also expands to creating more access for those with disabilities throughout society. As these and future therapies work, allowing people with SMA to continue engaging in society in increasingly diverse ways, it’s imperative society be accessible to us.

Whether you’ve journeyed with us from the first Bowl-A-Thon when I was in first grade, or whether this is the first you’re learning of all this, I hope you’ll continue to journey with me and us in the next new realities to come.

Journaling and a Return to Writing.

Whereas my initial writing hiatus began with intentionality and an intent to return soon, the exhaustion and fatigue of daily life with medical necessities combined with the same from Evrysdi left little time or energy for writing. Weeks became months and months soon became where we are today, almost exactly a year later.

During that time is when I first began the practice of journaling. My assumption was always that journaling wasn’t something many people actually did. It seemed to me it was reserved either for important people with important lives which deserved to be remembered or for characters in a movie or book, more a literary device than anything. I was profoundly mistaken.

Journaling became not just the pathway for finding my way back to writing more consistently for public consumption, but a powerful aspect of processing both the mundane monotony of daily life and cultivating my spiritual life and relationship with Jesus. It began with a sentence a day, which lasted approximately two days, because, well… see the 1,120ish words above. It’s sufficient to say I’m not built for brevity. But that’s the great thing about journaling—there’s no one to care.

If you’ve never tried journaling, never been able to get in the habit of doing it consistently, or just never considered it as an option, I can’t recommend it enough. Start with a sentence. Even if the thoughts of writing an entire page of words terrifies you, I think you’ll quickly find yourself writing two sentences a day, then three, four, and before you know it you’ll have filled that page. But like I said, more than just filling a page with words it’s a powerful way of processing your thoughts, emotions, and spiritual life. Not only will your pages be full, but your heart and soul as well.

Looking Ahead.

If you follow me on social media you know I haven’t been entirely out of the conversation over the last year. I occasionally found both the motivation and words, both of which often felt nonexistent, to comment on something here or there. It was pointed out to me several times that many of the posts I’d write for social media deserved a spot here on My RemARCs, but for some reason I could never bring myself to do it. Maybe it felt too official for what I felt was shabby and not my best “stuff,” or maybe it was just the stubbornness of not wanting to take others’ advice… Nah.

Whatever the reason, over the next few weeks I plan on migrating those writings here. If you missed them the first time, I hope you find them of value. Many of them were topical to current events, but their themes remain relevant no matter how long removed. And if it will be your second time reading them, well, you’re the really lucky ones here, aren’t you? I hope they’re even better this time around!

In the coming weeks and months—born out of the aforementioned journal entries—I also hope to introduce some new aspects of My RemARCs that will provide you with more consistency and regularity in receiving my words, as well as providing your procrastination prone host with some parameters for timely posting.

The first of these new aspects will be called “That’s RemARCable!”—a bi-weekly (for starters), short social media post recapping something “remARCable” from the previous weeks. Whether that’s an experience I had, something I watched, listened to, learned, remembered, or read, it’ll be a quick hit of something good, positive, thought-provoking, and well… remARCable.

It will also be an opportunity for you to share what was remARCable in your life. Another benefit I found in journaling is that as the movie of your day or week replays in your mind and you begin to scribble out those scenes as best you can, you become aware of the extraordinary everyday experiences we so often take for granted. This awareness not only allows us to recognize the remARCable around us, but cultivates gratitude amid anxiety. And recent studies have shown that gratitude is integral in combating anxiety. Just one more reason to give journaling a go.

Be on the lookout for these posts Friday evenings on Facebook, Instagram, and Twitter, and make sure to comment with what made you say That’s RemARCable!

As for the articles and updates here on the website, I intend to put out a new article at least once a month. I’d like to be able to commit to more but with my current schedule and fatigue level, being realistic about my abilities is important. You can be assured, though, that when you do receive a new article, or update, or whatever I’m calling them now, it’s something I’ve taken the time and put in the work to make it worth your reading. The world is full of words and noise, and everyone has an opinion about everything, the last thing you need is another empty email in your inbox (subscribe below!) or another flimsy opinion in your feed. My goal is that you always come away having expanded your view of our collective and individual journies and the turns they take when they collide.

In effort to do that, you may notice some formatting differences and new additions to the flow of the articles. I don’t want to reveal them all now, because I honestly don’t know how they’ll all pan out or if they’ll make the cut. As I do, though—should you even notice them—I want your input. Do you love ‘em, hate ‘em, just kinda like ‘em? You’re in the driver’s seat, so make sure to let me know in the comments section.

I hope this update has found you doing well. Much like my year I know for most of us it wasn’t exactly what we were hoping for—more of a lethargic yawn than the energetic jump out of bed we were looking for. And for a lot of you, 2021 was perhaps the worst year of your life. Having hope that 2022 will be any better, if you’re honest, feels dishonest and somewhat offensive—I can certainly identify with that. While I can’t promise you everything will get better, what I can and hope to do through these writings is provide you an opportunity to see the remARCability available amid the struggle and pain as you go forward and continue on. It’s there where the real hope lives. Throughout all of the fatigue, exhaustion, and frustration of my last year there have also been profound moments of goodness and growth. I believe there can be for you too.

Thanks for reading and see you back here soon.

Live RemARCably,

I love Washington DC, and I love The Capitol building.

Seeing them so disrespected and defaced the way they were two weeks ago today hurt and has, I think, left us all feeling a bit hopeless.

They’re beautiful places. Some like to badmouth them because of the gridlock and corruption that often plagues them, but I’ve always viewed it as a city and building of hope. Reminders of the past surround you on all sides, but as you traverse DC’s streets filled with bustling 20 & 30 somethings moving from building to building, the reminder this is a city moving to the future is inescapable. It also happens to be one of the most wheelchair accessible cities I’ve been to. Don’t get me wrong, it has its issues, but it’s far better than most.

Many times I’ve rolled the halls of The Capitol, alongside my family, as I had the opportunity to meet with Senators & Representatives to request funding for Spinal Muscular Atrophy research. Those halls and meetings represented a hope for a future where the effects of SMA are no more—one, I might add, that’s closer now than ever before.

At one point in my life (and occasionally still), they also represented the hope of a future rolling those halls not as a lobbyist but a lawmaker.

For our country, the halls of The Hill represent the hope of our ability to make a more perfect union. Something we’ve been striving toward for 245 years.

And that house represents the hope we put in the men and women—Democrat, Republican, Independent, Libertarian—we send to Washington to represent us and our hopes for our own lives.

On Wednesday January 6th, however, we saw that hope shattered and trampled.

Not from outside terrorists set against our very way of life, but from our own citizens—incited and misled—who claimed to be protecting the very things they were destroying. It has shaken us all.

We’ve seen this pattern growing. It honestly shouldn’t have surprised us, and for many it didn’t. We’ve seen a shooting on a baseball field, attempted bombings, planned abductions, burnings of police stations, assassinations of police, racial killings, accusations of stolen elections and “the end of the democracy,” all leading up to the attack on The Capitol last Wednesday.

The leaders we put our hope in to guide us, come together, work for us, defuse and rise above the tension have either implicitly or tacitly encouraged it.

The systems we put our hope in—that are supposed to provide us the opportunity to learn, succeed, fail, grow, and provide for our family and others—have been turned and twisted against us for the benefit of those with power.

And finally, the hope we had in each other—that even though we may think, act, look, worship, and vote differently we’re all in this together as Americans—has been pushed to its breaking point. We now question things we thought we could always trust.

The people and things we once put our hope in, we now see can no longer bear the weight.

But that’s just it, isn’t it?

These people and things were never meant to hold the weight of our hopes. Not representatives, nor senators. Not bureaucrats or presidents. Not governments. Not America. Not you or I. They will all—we will all—eventually break under the weight of our own or each other’s hopes.

We all know this is true.

We’ve all put our hope in someone or something that has eventually let us down. It’s inevitable. We simply don’t have the strength or ability to bear the weight of the deepest desires and hopes of our souls. And many times, if we’re honest with ourselves, we knew that let down was coming. We could see and feel it coming.

So in the face of this seemingly inevitable outcome and hopelessness, what are we to do? Is there actually no hope for you and I? Is there nothing where we’ve always thought there was something?

It would be easy to believe that. In fact, I’d say it’s one factor that led to the attack on The Capitol.

When everything you have—your entire identity—is wrapped up in one ideology, party, or person and you’ve been convinced that it’s all being taken from you, is it not conceivable to react violently? All of their hope is in something or someone that’s ending and they couldn’t conceive of or concede to that because it would be to concede themselves. This doesn’t excuse their actions in the slightest. But again, those things were always going to crumble under the weight of their hopes—even if, especially if they had gotten everything they wanted.

So the question persists. Is there anything that can hold the weight of our hope?

I believe the answer is yes!

There has to be hope. There has to be something, because we are something, this country is something, this world and galaxy and universe are all something—and something can’t come from nothing. It’s impossible. And if there is something, from which everything came, would that be something that could hold our hope?

I again believe the answer here is a resounding, emphatic yes, there is!

But it’s not just a some-thing but a some-one, the some-One, and His name is Jesus.

“For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him. And he is before all things, and in him all things hold together.”

Colossians 1:16-17 (ESV)

In Jesus alone do our hopes find a resting place—the only resting place—that can bear the weight. He is like no other person or thing we put our hope in that will ultimately and inevitably fail, because He is before and after, above and below, in and through all things.

I know, that’s a big claim and it comes with a lot of questions. Unfortunately, I don’t have the room here nor all the answers to all those questions, I still ask many of them myself. Here’s what I can tell you, though. If you’ll take some time and read the words of Jesus—the Bible (specifically the New Testament)—with an open mind and an honest endeavor to seek truth, I’m convinced you’ll find the hope you’re looking for.

One important question I do want to address is, “how can Jesus be so good if such horrible things are done in His name?”

It’s true, there were people at the attack on The Capitol who claimed to be there in the name of Jesus. To be real with you, it infuriates me.

First, I’d say it’s always dangerous to judge anything or anyone by their most extreme elements and supporters. There were also a lot of people waiving the American flag, but we know these people don’t represent the vast majority of us, just like those waiving the Christian flag didn’t represent Jesus or the vast majority of Christians.

Second, if you take even a passing glance at the actual words of Jesus you can see these people haven’t done the same, at least not honestly. Jesus tells us to love God, to love others, and to love our enemies. Violent rhetoric and physical violence don’t align with that in the slightest. That said, and as mad as they made me, I pray for these people who claimed to be there in the name of Jesus. I pray they would experience the real, life transforming, peace bringing love of Jesus Christ.

I pray that for everyone. I pray you would experience that love and hope that only comes from Jesus. And I would urge you again to seek it out for yourself by reading the words of Jesus Himself. Because, it’s only in finding this hope do I believe there is hope for our nation as well.

And I do believe there’s hope for our nation.

You see, none of what I just said negates our need to put work and effort into advocating for changes in our system and government—to see tangible hope in this life. In fact, it does just the opposite. It makes it all the more necessary and possible to work for justice, seek unity, create an economic environment that gives opportunity for success and failure, and preserves our liberties all in the face of what feels like hopelessness.

As today marks the beginning of a new administration in The White House, we also have the opportunity at a new beginning for hope in our nation. Certainly those who voted for them and agree with their policy goals will have an easier time accepting that statement than those who didn’t and don’t. But I’m not talking about hope in Joe Biden or Kamala Harris or a new administration.

Just two days after we honor the life and legacy of Dr. Martin Luther King Jr. I’m reminded of one of his many famous quotes.

This is the hope we need.

When we anchor our ultimate hope in the Giver of infinite hope we free ourselves to accept finite disappointments and yet continue having hope of seeing our deepest desires made real.

This is made profoundly clear in the history of black Americans. What if people like Harriet Tubman, Frederick Douglas, or Abraham Lincoln had simply given up hope of slaves being freed the first time thing seemed hopeless? What if MLK, Rosa Parks, or the rest of the Civil Rights Movement had simply given up hope of equal rights for black Americans the first time they were met with fists and clubs? And what if we stopped continuing to strive for equality in America today, just because some have tried to use it for their own selfish purposes?

It’s the same in any respect.

If we truly hope for things to change, if we really hope to see our country reunited, if we’re honestly hoping for healing and a path forward to solving the big issues of our time we must persevere in the face of difficulty, put in the work and effort, and have hope for a day when our hope becomes reality.

Let me end with a quick story.

One afternoon, as my family and I were leaving The Capitol after a day of meetings, we traversed its halls headed to the exit. As we rounded one corner, almost so suddenly I missed it and with a bit of help from a well meaning Mimi, we ran into then Senator Joe Biden. Being pushed and hurried along by an aide more concerned with getting him to his next vote, now president elect Biden bent down and said… “young man, never forget this is your house.” Just as soon as he had said it, he was gone.

It’s true, The Capitol is our house. This whole country is our house really, and that makes us one big American family. Sure, we may forget it sometimes and fight amongst ourselves, but let’s not let it steal our hope in this nation or each other. And let’s never forget that no matter what happens we can always choose to put our hope in the unshakable, unstealable, name of Jesus Christ and our eternal home with Him.

So, I ask you… Is there hope for our nation? Is there hope for you?

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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.

It’s often one of the first questions people ask you leading up to and just after New Year’s… “Do you have any resolutions this year?”

We see endless segments on morning talk shows and countless articles written about what resolutions to make, how to make them, how to keep them, and what to do when you don’t keep them. They can be helpful, yes, but they often only scratch the surface, throwing around platitudes and cliches. This will not be one of those articles.

Instead, I want to try and reframe the way we view making these types of changes in our lives. So if you’ll allow me, below I’ve attempted to do just that.

To tell you the truth, I’ve never been a resolution guy. Goals, sure. But not resolutions. You can argue the difference here is merely semantics, and you might be right. I’ve just never been one to make a New Year’s resolution. If we’re being real, no one keeps them anyway so why make one, right? This thought got me thinking about resolutions and goals in general, though.

One of the main problems with resolutions—particularly New Year’s resolutions—is that as soon as we miss a few days of doing or not doing whatever our resolution was, we write off the whole year.

We put a lot of pressure on ourselves to make big changes and do “all the things” in the new year. But when that doesn’t happen—or doesn’t happen fast enough to meet our standards—we get discouraged and quit trying altogether. Or maybe we convince ourselves that we’re just too busy right now. We’ll get to it next year.

Whatever the reason, the resolution often dies an early death.

But what if we freed the idea of resolving to do something from the limit of just one time of year? What if we had the freedom to do that every single day of the year?

Living with a disability teaches you some important lessons on life pretty quickly. One of these lessons is the need for a short memory. You hear NFL quarterbacks and other athletes talk about this often. If you go out on the field or court and make a mistake that hurts you or your team’s chances of winning, it can get in your head. But you often have to get right back out there almost immediately and continue playing the game. If the only thing on your mind is an endless replay of your mistakes, chances are you’re going to make them again. Instead, athletes have to develop a short memory and let go of the bad plays almost immediately so they can preform and lead without their mistake hanging over their head.

Similarly, you have a lot of bad plays when you live with a disability.

Some of them are your own fault, some your teammate’s, and some are just because the defender made a better play. You make mistakes, others hurt you, and circumstances arise. You have good days, great days, bad days, and crap days… and a lot of all of them. But because the bad and crap days often tend to come at a higher rate, you have to develop this same ability to have a short memory. You have to learn to let go of the bad days and allow yourself to move on. If you don’t things can get gloomy quick. You get stuck in a rut of fear, anxiety, depression, and doubt and you end up actually perpetuating the bad days.

It’s the same way in all our lives—disabled or not.

Allowing ourselves to let go of the bad days gives us the ability to move forward and embrace the opportunities in the new one.

It doesn’t mean we’re delusional or denying the bad days happened. It also doesn’t mean denying ourselves the right to experience the emotions these days bring. All it means is simply not giving bad days the power to dictate the outcome of the rest of our days. And by doing this we can actually enable ourselves to learn and find good in the bad that we never would’ve seen otherwise.

This is the appeal New Year’s Day and resolutions bring. It’s the closing of the door on one year and everything that happened in it—good or bad—and the opening of the door into a new year full of possibilities. But again, why should we limit this to one time of year?

By approaching everyday as New Year’s Day—a fresh, new start—we give ourselves the gift of grace and the ability to create new habits or accomplish new things at any given time.

Every day is a blank slate and a new start, so why don’t we treat them like it? Just like developing a short memory helps us to move forward from the bad days, viewing everyday as an opportunity to transform and start over new helps us to remember our resolutions and goals aren’t all or nothing. Transformation takes time, and our resolutions often have slow solutions.

So if we mess up and make a mistake—as we all do and will—well, tomorrow’s a new day and we’ll start again then. These two abilities—letting go of the bad days and recognizing the opportunity in every day—help us to begin to see the potential in every new sunrise. They enable us to accomplish the resolutions we thought we’d never keep or accomplish. We make fewer mistakes, do them more consistently, and they even begin getting easier. Where we may have once quit or given up, we now have the strength to persevere.

I’ll leave you with one of my Grandude’s favorite quotes…

To which I can hear myself giving the smart-Alec reply of, “why would you want to eat an elephant?” But it’s true. Take it slow, give yourself some grace, let go of the bad days so you can move on to the new day, and treat every day like it’s New Year’s Day.

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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? I’d also really appreciate it if you’d follow me on social media and consider sharing this article with your friends. Hope to see you back here soon. Until then, be well and live remARCably.

Many things signal that the Christmas season is upon us; the glow of lights on houses, the smell of warm baked goods, annual coffee flavors, shopping and sales, movies on TV, and Christmas music on the radio before Halloween (a federal crime in my opinion). Christmas trees, though, are perhaps the most enigmatic sign the season is here. Right around Thanksgiving we begin seeing the green fur trees arriving at grocery stores and local farms setting up shop, or if you’re one of “those people” setting up the fake tree. However, as you approach the Christmas trees at these stores and stands you often encounter another plant that gets its day in the sun (figuratively and literally as you’ll see) at Christmastime—the Poinsettia.

There’s a lot more than meets the eye with Poinsettias.

Sure, they’re pretty with their bright red leaves—yes, leaves—but besides that they contain a deep truth that applies to all of us. To be able to understand that truth, though, you have to go a bit deeper than their surface beauty and understand Poinsettias themselves. As I sat staring at the two Poinsettias sitting on our own hearth the other night, my inner science nerd reared its head and I spent some time doing just that.

Here’s what I learned…

Originally native to Central America, Poinsettias were first introduced to the United States in the 1820’s by the first U.S. Ambassador to Mexico and botanist, Joel Roberts Poinsett—hence their common name. Taken by their beauty he had some of the plants sent back to his home state of South Carolina, from which they proliferated throughout the country. It wasn’t until almost 80 years later, however, Poinsettias became associated with Christmas.

In 1900, while traveling with his family through Los Angeles, a German American named Albert Ecke noticed the red plants throughout the city. Filled with entrepreneurial spirit, Ecke got the ingenious idea to sell the plants—marketing them as “the Christmas plant” because of their red color. He set up little road side stands and the business took off. Within decades the Ecke family cornered the market on Poinsettias, selling over 70% of all Poinsettias in America and creating a lasting Christmas tradition.

But what actually makes Poinsettias red?

First of all we should clarify that the red part of Poinsettias are actually modified leaves called “bracts.” The flowers of the plant are the small and often yellow centers with few petals, from which the leaves radiate. Because of such small flowers, it’s presumed the colored leaves developed to attract pollinators—though, we don’t actually know what pollinates Poinsettias in the wild.

Isn’t science awesome?!… no?… Just me?… Again, science nerd. Sorry, not sorry.

Okay, back to the original question; “what makes Poinsettias red?”

This is where things get a bit more sciencey. I know, what is this school? But stick with me, because you really can’t miss this perspective they provide. I believe it can shift the way you view your past and transform the trajectory of your future.

The leaves of Poinsettias turn red because of something called Photoperiodism. Photoperiodism is when certain proteins called photoreceptor proteins within the plant cell detect seasonal (or forced) light changes. These proteins and the detection they allow help the plant to know when to put its energy into flowering, deepening roots, repairing themselves, and even protecting themselves. They can actually form a circadian clock similar to you and I.

In the wild, this detection begins taking place in the winter when nights are longer. But in nurseries growing Poinsettias for Christmas, starting in October the plants are exposed to periods of total darkness for at least 14 hours a day. When this happens the photoreceptor proteins begin a process of halting the production of, and the extraction of, chloroplast containing cells from the leaves—which we see as green.

As they do this Poinsettias also begin producing pigments called Anthocyanidians—say that five times fast. When the green chloroplast cells are extracted and these commonly red pigments are created, the leaves begin changing color. They’re not just for looks, though. It’s these Anthocyanidians that also aid in DNA repair and protection. However, if the plants are exposed to even the slightest bit of light during their time in the dark, it can interrupt this entire process and the leaves won’t be quite as vibrant as they could’ve been.

And again, not just a little darkness or some darkness here and there, but six to eight weeks of total darkness 14 hours a day!

The same is often true for you and me.

Life, at one point or another, places all of us in the dark.

Sometimes it’s by the consequences of our own actions, sometimes it’s by the actions of others, and other times we just don’t know why. Some people are in it and wonder if they’ll ever get out, and others seem to have avoided it almost altogether, but we all experience it. The question is, what happens when we do?

For many of us fear and frustration overwhelm, sending us deeper into the darkness.

It reminds of how for much of my childhood, like many kids, I was pretty afraid of the dark. I always slept with a light or the TV on. Looking back I think a lot of it had to do with not being able to move or get up and turn a light on if something startled me. If there was light, though, I could see what was going on and knew there was nothing to be afraid of. Similarly, the darkness and hard times in our lives have a way of paralyzing us with worry and fear. We can’t see what’s going on so we just lie there, afraid to move and waiting for it to be over. But God wants to show us something different.

You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. Genesis 50:20 (ESV)

You see, God’s intentions are often very different than our’s or the world’s. Just like Poinsettias have to go through the darkness to transform into the beautiful plants we put on display at Christmas, God wants to do the same in us.

This requires us to do something that feels completely unnatural, though—surrender to God, embrace the opportunity in the darkness, and reject fear. When we practice these three abilities we allow ourselves to see the things God wants to show us. We become a disciple in the darkness—learning, developing, and growing. We can cast our fears on Him and begin to be able to see that transformation and goodness—goodness we never could’ve imagined otherwise—are possible through the pain.

My brothers and sisters, consider it nothing but joy when you fall into all sorts of trials, because you know that the testing of your faith produces endurance. And let endurance have its perfect effect, so that you will be perfect and complete, not lacking in anything. James 1:2-4 (NLT)

But God also makes us a promise in this darkness… it will come to an end.

After their time in the darkness and all the photoreceptor proteins and Anthocyanidians have done their work, Poinsettias are finally ready for their time in the light—Christmas. Each year in the six weeks leading up to Christmas, over 100 million Poinsettias are sold in America for people to display and see their beautiful red leaves. All their struggle and effort finally realizes its purpose. God will do the same with you and I… and I don’t mean selling us as Christmas decorations.

And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. 1 Peter 5:10 (NIV)

Over 2,000 years ago the very first Christmas was full of waiting and darkness too. A promise had been made, but for 400 years there had been nothing. It seemed as if God had forgotten or changed His mind… and then, Light. In an insignificant small town, to an insignificant small town girl and guy light broke through the darkness and Jesus was born.

Maybe you feel like that right now? You’re stuck in what feels like 400 years of darkness wondering if God has forgotten you or changed His mind. But He hasn’t. Jesus came that first Christmas so that you and I would no longer have to live in the darkness. He would be our Light, shining the way to freedom and joy.

Again Jesus spoke to them, saying, “I am the light of the world. Whoever follows me will not walk in darkness, but will have the light of life.” John 8:12 (ESV)

When we accept Jesus as who He is (God and man in one), the perfect life He lived, and the sacrifice and miracle of His death and resurrection, we are joined with this light. It lives within us. He lives within us. No matter how much darkness we experience in this life we always have the Light of Life inside us leading the way through. And more than that, we have the promise of living in the Light for eternity. One day all the pain will be healed for good, all the wrong will be brought to a final justice, and the darkness will be banished forever.

The people who walked in darkness have seen a great light; those who dwelt in a land of deep darkness, on them light has shown. Isaiah 9:2 (ESV)

Let me be clear, this does not mean the darkness won’t come in this life. And it does not minimize the painful, frightening, unfair circumstances in our lives. Rather, it puts them in their proper place. Horrible, yes. But also—if we’re willing to trust God and shift our perspective to that of a Poinsettia—an opportunity to transform and shine the Light of Life from within us, into both our own lives and the entire world.

So from now on, whenever you see the bright red leaves of the Poinsettia, look at them from a fresh perspective. The perspective that when the darkness comes so does the opportunity to transform. The perspective that you don’t have to be afraid of the dark. A perspective of the light and beauty that’s within you, waiting to come out. And the perspective to remind you of the first Christmas when the Light named Jesus came for you, so that you could live in the light for all eternity. This is the perspective of a Poinsettia.

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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.

In a year where “unprecedented” is undoubtedly the word of the year and clarity is in short supply, one thing that is clear is just how close the 2020 elections were. We’ve known for years Americans were bitterly divided along political and ideological lines. We’ve felt that acutely this year. All you need do is look around to see it. However, we are now receiving tangible numbers that show us just how stark it actually is.

While the final numbers aren’t entirely in as I write this, it appears the popular vote will split somewhere within 2-3 points of 50 percent—Biden Harris receiving approx 78 million votes and Trump Pence approx 73 million votes. Both of those are overwhelmingly historic numbers in their own right, but come January, Congress will be even more closely divided as well.

In the House, Americans voted to decrease the Democrat majority by at least seven seats. While in the Senate we voted to narrow the majority of Republicans by at least one seat and the potential tie breaking vote of a Vice President Harris. Neither one flips control of the body yet, but control of the Senate will be up for grabs in two runoff elections in Georgia this coming January (my sympathies to Georgians).

Between the presidential numbers and Americans voting to even more closely split the Congress, it’s clear our government is reflecting the reality of the political divide in America.

There are a few different ways this can be interpreted. Republicans will undoubtedly interpret it for Republicans’ benefit and Democrats will undoubtedly interpret it for Democrats’ benefit because, politics. What I want to focus on here, however, is not how the respective party’s will spin it for their own political gain, but what it means for you and I as we move forward from this election.

I’m going to let you in on a secret politicians don’t want you to know…

You have far more power and influence over the direction of the next four years than any Representative, Senator, or President ever will.

For all the talk and promises politicians make, we know government often moves at the pace of a stoned sloth. It takes years just to make incremental progress… and we usually get the munchies along the way. Anyone who’s ever been to the DMV knows this is undeniable . However, we as individuals—business owners, students, employees, teachers, parents, children, friends, neighbors, etc.—make decisions every day that have the power to massively shift the future. Maybe not in tax policy, immigration, or national defense, but in a way that shapes the conversations around them. In the way in which we talk to each other about them.

In a nation so clearly divided, the choices we make every day in how we talk, react, and act have the power to do one of two things: unite or divide, build up or tear down, accept or reject.

For the last four years—longer if we’re being honest with ourselves—the discourse in our nation has become so toxic we’ve largely lost our ability to have the uncomfortable, hard conversations our democratic republic demands we have. Both parties bare the brunt of the blame, but it’s us—the people—who bare the consequences. Examples of this politically are the response to the racial tension over the summer and the handling of the pandemic. No matter your political affiliation, we all agree that we desperately needed to pass relief aid for unemployed Americans due to COVID-19. Common sense police reform and social justice issues properly discussed and debated in the legislature could’ve quelled much of the tension, and perhaps lead to real racial reconciliation. Instead, however, we descended further into partisan bickering, a legislative stalemate, riots, looting, and name calling.

But on the societal plain, we’ve seen this political toxicity and hatred spill into our everyday interactions. The best example of this is social media—the “bathroom wall of the internet” as my favorite political commentator calls it. Anyone who has a Facebook, Twitter, or Instagram knows this well. We’ve allowed ourselves to be conditioned by media and politicians to look at and talk to each other through the lens of party and politics and it’s destroyed our ability to have civil discourse—whether it be on something as crucial as foreign policy or as easy as wearing a mask.

So how do we change that? How do we choose unity over division, building up rather than tearing down, acceptance instead of rejection in the moment to moment choices we make in how we interact with each other—whether online or hopefully in person again one day soon? While entire books can and have been written on just this, I’ve narrowed it down to just a few key points that—if we can put into practice—I think we’ll be well on our way. Let’s take a look.

1. Recognize it’s up to us.

Politicians are never (or at least not anytime soon) going to restore unity, positivity, or acceptance—divisiveness is far too expedient and they’re (generally) far too narcissistic for them to even want to try. I’m sorry to be the bearer of bad news, but the days of politicians as moral leaders in America are dead. Maybe one day, if we’re lucky and we work hard, they’ll be resurrected. Until then, it’s up to you and I. Which, if you ask me (and this is my article, so you are), is how it should be anyway. Are you willing to put in the work?

2. There are a lot of us who need to apologize.

I say “us” because I include myself in that. If we’re honest with ourselves, we can all admit apologizing is something we’re pretty terrible at doing. It involves two things everyone hates, admitting we’re wrong and then admitting that to other people.

I’ve tried to stay away from commenting on politics as much as possible over the past year, but I also know there have been times when I did post about politics on Facebook or Twitter. There have also been times I know I’ve unfairly characterized or generalized about a person, a policy, or a party I disagree with. That was wrong. I was wrong. It didn’t help to further the discussion, and I’m sorry.

Apologizing doesn’t necessarily mean we’re saying the views we hold are wrong—though sometimes it will and should—it just means the way we went about conveying them was wrong. Especially during this season of social distancing where our human interaction is even less than it normally is, it’s so easy to dehumanize the person on the other side of the Twitter handle or Facebook account. We have to remember they’re just that—a person.

3. It’s not going to happen overnight… and that’s okay.

Just because we apologize (assuming an apology is made) doesn’t mean healing immediately takes place. This is a truth we could all stand to learn in every area of our life. Apologizing is just the beginning of the healing process. It’s a process that takes both sides, and sometimes—especially if it’s a deep wound—it takes one person a little longer than the other. We need to learn to be okay with that.

In our case, elections are always contentious times, that’s nothing new. But without our ability to calmly yet passionately discuss our views, that contentiousness has seeped into our everyday life for the past 4-6 years. The incessant name calling, hyperbolic generalizing, and personal attacks we used to reserve only for election season has left no room for healing—no matter how loud we yell for it. If we truly want healing we need to tamp down the rhetoric, apologize, give some room for healing to begin, and put personal effort in showing we want things to be different.

It’s important to advocate for our closely held views, yes, but not every opinion needs arguing. I don’t have evidence, but I’m pretty sure no one’s mind has ever been changed by a passive aggressive, sarcastic tweet… and that’s coming from a guy who’s love language is sarcasm.

4. “Seek first to understand then be understood.” -Stephen R. Covey

This was one of my grandfather’s favorite quotes and now I understand why. I truly believe if we, you and me, can master this one skill we can transform the way we interact with each other not just in politics, but in every area of our lives.

How many times have you been in an argument where the other person yelled back at you about something you just said to them only, what they said isn’t at all what you said or meant? Or maybe you were the one yelling back? I think we can all admit to being on both sides of this situation more than a few times. Now, what you said and what they heard might be equally offensive, but often when we’re in the heat of an argument or discussing something we’re passionate about we tend to only hear the response we’re expecting to get. We’ve constructed a predetermined argument in our mind and stick with it even when it doesn’t match what the person is actually saying.

We’re listening to respond instead of listening to understand.

It’s something I’ve never quite understood about people who think we shouldn’t read or watch or listen to certain ideas—namely, cancel culture. How do you expect to have a firm foundation under what you believe if you’ve never been exposed to other points of view besides what you’re told of them? You might think you know what someone’s views are on a given subject, but until you seek to understand not just what their views are but why their views are, your both better off talking to a sheet of paper with talking points written on it rather than an actual person.

It’s in the understanding why that we discover common goals and are willing to find cooperative compromise that creates a path to meeting those goals.

There’s so much more we could talk about in learning to seek first to understand, but I think that’s a pretty good start. If you want to go deeper, I’d encourage you to check out The 7 Habits Of Highly Effective People by Stephen R. Covey. You won’t regret it, I promise.

Here’s the bottom line…

the reality is you have a neighbor who voted for Biden. You have a family member who voted for Trump. The person who sits next to you in church (socially distanced, of course) supports a Democrat Senator. Your best friend filled in the bubble for a Republican Comgresswoman. But because politics has become such a toxic cesspool of vitriol and hatred you wouldn’t know that because it’s just too big of a risk to talk about it. That’s sad.

I say it’s time to take a risk!

Ask your uncle his views on that topic that’s been on your mind all week. Talk to your neighbor about why the kids should or shouldn’t go back to school. Make a lighthearted, self deprecating political joke with the person you see at church to break the ice and open the door for relationship. And if you can’t talk openly with your best friend about who and why they voted for who they did, are they really your best friend?

You may think this all sounds a bit naive and simple, and maybe it is. But maybe we need some naivety and simplicity. Maybe it’s time we get back to the basics and go from there. I truly believe if we put into practice these four points I’ve outlined above—accept it’s up to us, apologize when we’re wrong or said something the wrong way, give room for healing to begin, and seek first to understand then be understood—the truth is, we’re really not taking a risk at all. We might be initially met with some resistance, but eventually the way in which we talk about our views will begin to break down the barriers others have put up. And then we can begin having the deep, meaningful discussions our nation so desperately needs to have. It doesn’t mean we’re always going to see eye to eye on everything. Sometimes we just see it differently and that’s okay. When we do encounter those areas, though, we’ll be able to preserve the relationships first, navigate them well, and find our way forward—together.

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.

Last Friday was my 28th birthday. 20 years past the age doctors thought I’d likely never see because of the effects of Spinal Muscular Atrophy.

Over the past month, I’ve been posting facts and stories of life with SMA for SMA Awareness Month. As these two events coincided, I’ve been reflecting on what all of the information I’ve been relaying to you means; both for the last 28 years where for so long it was scarce, and the next 28 years that will see so much benefit and change because of it. You see, they represent for many like myself, what aren’t just info graphics with some sciencey stuff on them, but rather everyday life. They are the realities my family and I have navigated through for 28 years, trying to find some sense of “normal”—whatever that is. As we have, family and friends simultaneously—since I was in the first grade—planned fundraisers and advocated for funding for research on treatments almost every year. It hasn’t been easy. Trying to plan events while also trying to manage crazy schedules and medical needs is exhausting. Sometimes you wonder if it’s all really making a difference and if it’s worth the effort.

However, through those efforts, my family, friends and I have raised over half a million dollars towards SMA research over the past 28 years. And with 3 treatments now approved, that work and those funds are paying off. While there’s still so much left to be discovered—more effective treatments, a CURE—I believe it has ushered in a new era for those living with SMA and our families.

An era of living.

First, I should say that I don’t mean this in the sense that those of us living with SMA have not really been living up until now. It is quite the opposite. All you need to do is check out the social media of myself, Shane Burcaw, Alyssa Silva, or countless others who live with SMA, to see that I use the phrase “living with SMA” because that is exactly what we do. But as these treatments become more widely available, for both newborns diagnosed and older people with SMA like myself, we can begin to take a bit of a deep breath (thanks to improved lung function) and live in a new way.

For those with more severe forms of SMA, I mean that quite literally. Where there was once very little hope, there is now hope abounding in the fact that life is very much a reality. Children who likely never would’ve seen their second birthday are not only living but thriving, and in some cases even walking.

For people like myself who have been living our lives with SMA for quite some time—with no lack of fulfillment—these treatments provide us that deep breath and new paradigms of thinking about our lives. In many ways, we’ve been “living on borrowed time.” Thanks to medical technology and improvements in the daily “maintenance” care, we’ve been able to beat the odds and live great lives while we were at it. However, while death certainly doesn’t consume us or our thoughts—or at least not for me—it has been a constant reality, lurking somewhere in a cold, the flu, or pneumonia. We’d beaten the odds this far, but how long will it last?

We now, thanks to these treatments and the ones around the corner, can begin to let go of those thoughts. We can know the progression of SMA can stopped and even reversed. We can live with the knowledge that the next cold we get, we’ll have a better shot of getting over. We can begin (and have been) asking and answering, questions like what does it look like to be married with SMA? What does it look like to be a parent with SMA? What does a career look like with SMA? Or retirement? In short, we can begin to simply live.

Of course, there are still going to be challenges in our future. For us, we will most likely live with the realities and effects of SMA for the rest of our lives. They may be lessened, but they’ll still be there. And honestly, I’m okay with that. Who ever said life was going to be challenge, or struggle, or pain free? If someone did, they were lying. No, our lives, just like yours I suspect, have been and will continue to be a crazy, messy, beautiful—dare I say remARCable?—journey of failure and victory, challenges and perseverance, struggle and strength. It will be a journey of living. And to quote Robin Williams in Hook…

“To live… to live will be an awfully big adventure.”

So, though SMA Awareness Month has ended, our fight for more awareness, funding, treatments, and a cure will continue on. In this new era of us living with SMA, these next 28 plus years, it’s our mission to leave a world where no has to live with SMA. Because, isn’t that the goal for all of us; to leave the world a little easier for those who come after us? I hope you’ll join me in that journey.

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.