A Very, Very Late New Year Update

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,