I was prepared to post this blog today about my first real awareness of COVID-19 as a global pandemic back on February 1, 2020.
I was flying home from a writing retreat on Kauai, and though we had already learned about COVID-19 in Asia, and there were now cases of it springing up in Seattle, I had been away from most media for a week carving out writing time.
Ironic that I should now wake up TODAY to find myself feeling pretty crappy and, after taking a test (the third one, mind you–my husband has had symptoms since last Saturday night), discover I am no longer what my author friend DJQ calls a COVID-19 unicorn (he, too was one until last weekend, and now we are all just regular horsies).
So I went looking for information on MS and COVID-19 and the long haul, because I know this is a thing.
How do I know this is a thing? Ha! I’d already written about it. Check it out: https://multiplesclerosis.net/living-with-ms/long-haul-covid19
Long Haul COVID-19 and Multiple Sclerosis
I won’t rewrite the article here, just wanted to say that IT’S A THING, PEOPLE. COVID-19 can resuscitate latent Epstein-Barr Virus (EBV) in the body, which is connected to MS etiology. It can also lead to new symptoms and inflammatory response (in other words, a relapse) and very specific kinds of hard-core physical impairments tied to major organ systems (lungs, heart, brain). And now there is research supporting the notion that COVID-19 may, in fact, trigger new cases of MS.
I’m so not pleased about this information. Mine is not a club I want anyone else to join. Trust me on this one. My very real concerns about aphasia are just one of many reasons to be terrified. I am a writer. I need my words even more than most people. Without them, I’m nothing.
Fortunately, a quick ping to my neurologist has me lined up for Paxlovid, which is, to me, is a huge bright side. My neighbor is bringing some home for me, and I just hope I don’t get rebound, because it will likely foil my plans for this first-ever PNWA writing retreat, which I can’t really refund at this point. But whatevs. I’ll deal with it. There is a second med, molnupirivir, which I should be able to take if that happens.
And there’s another tiny bright side… or, if not a bright side, an interesting observation… perhaps the reason I haven’t contracted COVID-19 for so long can be traced to the fact I went on a “medication vacation” back in summer 2019. (Hmmm, something else I’ve written about: https://multiplesclerosis.net/living-with-ms/medication-break).
Because my immune system hasn’t been modulated by disease-modifying therapies (DMTs) since then, it’s been fully functional (some would say, hyperfunctional, as in cases of MS, your immune system is in maximum overdrive).
Also, another kindness I did myself starting in December 2022… I decided to get into better shape, mostly to appease my arthritis pain. Lose some weight, get some more function back, feel generally lighter and more energized. Since December 10th, I’ve lost about 18 pounds by mostly doing cardio every other day for 1-1.5 hours and just being way more picky about what I eat and how much of it I eat. Maybe that will do me some good.
Along with this, I do use CPAP. Some folks will find it harder to use during COVID-19, but to me, the goal of powering through is Number One because untreated sleep apnea leads to immune system dysfunction (on top of what you already have going with COVID-19, and then there’s the MS immune system dysfunction I also need to think about).
JUST DO IT, PEOPLE. Use the CPAP. It is essentially mechanical ventilation. It’s there to help you. Keep everything clean. Make it work for you (at which point I direct you to yet another piece I wrote about managing CPAP use when you’re dealing with general illness or congestion: https://sleepapnea.sleep-disorders.net/living/congestion-use-cpap)
Meanwhile, back in Hawaii
On February 1, 2020, I left Kauai by way of Honolulu on a puddle jumper. EVERYONE was masked at the airport. This was before I’d even thought about owning a mask myself.
Mind you, this was at the height of Lunar New Year and millions of folks from around the world, especially Asia, make Hawaii their holiday playground for this auspicious occasion.
I sat on two different planes with no coverage, surrounded by people sneezing, with weepy eyes, yucky coughs that they could not keep contained inside their masks… to say that it creeped me out is an understatement.
Also, those of you who know me know I love me a good apocalypse novel, and I’d just finished reading several plaguish treatises in a row (American War, Station Eleven, Wanderers, and The Dreamers, among others), so you can imagine this masking business did not sit well at all with me. Talk about heebie-jeebies.
Then I return to the land of patient zero (stateside)
I was concerned enough to reach out to one of my MS specialists and they gave me specific instructions because, even if the rest of the world thought stupidly that COVID-19 was “just like the flu,” my doctors knew otherwise. And I was glad to get through that traveling nightmare unscathed.
Meanwhile, people in Seattle were dropping like flies and the willfully ignorant (Joe Rogan, I’m looking at you, you lousy POS, you can just F-*-C-K right off) continued to push the “this is fine” narrative.
Yes, I shamelessly admit that I wished Charles Darwin could be there to consult the virus, tell it who it really needed to go after. And yes, that’s a dark thought, and like so many of us, these dark thoughts are forever embedded into our souls because survival instinct is like that. Very much like that. And I make no apologies for it.
I have lost peers (respiratory therapists) working the front lines to COVID-19. I wish they were alive to have the luxury of harboring said dark thoughts, but since they’re not, I’m more than happy to do it for them.
In fact, it’s one of the reasons I’ve continued to mask all this time, even at the gym. I feel like maybe I need to get a mask screen-printed with a flipped bird image on the front just to drive the point home.
A month later, we had plans to see my daughter perform for her dance program at UW, and an hour before we left to catch the ferry, she texted me, in no uncertain terms, not to come.
“There are hazmat people taking out bodies from the facility across the street from where I live,” she informed us (paraphrased).
And so we stayed home, and I was proud of her for not falling for the “rugged individualist” ignorance that everyone else around us seemed to be buying into, as if, with the right amount of toxic self-confidence and dimwit fearlessness, maybe a dose of some special immune-system vitamin or sheep dip, you could simply not contract what would become a worldwide pandemic lasting more than three years.
Three years to the day
I was afraid then. I am afraid now. (As of 11am this morning, less afraid, because Paxlovid, which is on its way.)
You should be afraid, too. Even if you are a unicorn.
The pandemic has knocked loose our healthcare system in such a way that when you need it (now, or eventually, because you WILL), it will likely not be enough. Our safety net has serious holes in it that even money won’t fix, because we need nurses, and nurses are fleeing what has been a sinking ship for years now. Frankly, I don’t blame them.
Will we ever recover from this? I don’t know.
I’m beyond tired of trying to understand it. I just want to get better and not face the long haul, because the vast majority of my friends with MS who have had COVID-19 are now long haulers. Good, good people who might not have had to suffer so much if people just vaccinated and masked and social distanced etc etc.
So here’s to hoping I can be a unicorn at least among my MS peers.
Now I’m heading back to bed to sleep with my CPAP on, maybe to read another plague novel because maybe there will be answers there. I can’t seem to find them anywhere else, none that satisfy my need to feel like the world is a decent place anymore (except among my hard-core crew of bad-ass friends who have torches and pitchforks always and ever at the ready… my sweet army).
But c’mon now…
You know it’s bad when you have to find solace in apocalypse fiction (<–worthy of a LOLSOB) but there you go, welcome to the jungle.