I got the jab, y’all!
I received the Moderna vaccine on Monday, and fortunately, it wasn’t bad at all. A little arm soreness, but nothing worse than my usual muscle aches. We’ll see how the booster shot goes, but this one was definitely a relief—vaccines can cause pretty bad crashes for people with ME/CFS.
Proof of vaccination, part one!
The speed of progress on this virus has been a sight to behold. Most recently, the Biden administration used the Defense Production Act to support a deal between Johnson & Johnson and Merck to produce enough vaccines for every American before June. That’s just incredible. It still seems unlikely to me that normalcy will return before the end of the year, but either way, it’s a big deal.
And yet… it leaves me with an odd sensation, like a kid with the flu, watching his friends play outside. In June, I’ll still be right here. I’ll be as glad as anyone to see the virus destroyed or greatly diminished, but unlike most people, I gained a sense of normalcy from lockdown. Staying home all day is actually encouraged right now.
I think a few upsides will stick around, like telemedicine and access to remote work. If we’re really lucky, new research on LongCovid could lead to new ME/CFS treatments. But in the meantime, I’ll have to swallow a lot of FOMO whenever live music and nightlife return.
I’m still trying to focus harder on living in accordance with my values than on the specifics of what I can or can’t do (not easy!). I’m trying to find small, daily anchor points, actions I can reliably pull off no matter my condition, like having a bite of dark chocolate or meditating for five minutes.
Focusing too much on my aspirations tends to wake up my inner critic (ICK, for short). Maybe you’ve met this guy? I might start thinking about how I’d like to share my music with a larger audience, but ICK quickly responds, “You’re 37. If you haven’t made any real impact with your art by now, it’s not going to happen. No one cares. You’ll never be a real musician, quit embarrassing yourself.”
If I’m not immediately discouraged, I try to push back against the ICK. “I’m doing what I care about. I’m doing a pretty good job, and I’m making it available as well as I can. That’s all I can do. I can’t control how other people receive it.” If I say that often enough, I might start really believing it. It’s just another way of focusing on values.
The two awful questions that dog artists. (Lynda Barry, “What It Is”)
My friend Hugh McElroy, who I’m actually collaborating with on some music (more on that soon!), once gave me a deeply wonderful book by the cartoonist Lynda Barry called What It Is. Through colorful sketches and honest recollections, she considers how children create fearlessly, and how they play for the sake of playing. Kids don’t worry about whether or not they’re “real artists,” they just draw. They make things. Not for careers or accolades, but because it feels satisfying to make things.
Later on, questions like “Is this good?” and “Does this suck?” start to really crush people’s creativity. Those judgements are enough to keep you from picking up a pencil, even if you simply enjoy doodling for your own amusement. If you can let go of those questions, at least for a while, making gets easier. If you can trust your intuition, you can create more freely. If you can welcome the unexpected, you might even stumble on something new and exciting.
Play is its own reward–and not just because it can be fun. (Lynda Barry, “What It Is”)
When my body allows it, I’ve been working hard on my Patreon: talking to potential collaborators, polishing up old music, recording fresh ideas, and writing messages like this one. Over the next few months, I’m hoping to make a few changes, to step up the quality of what I offer here, while still leaving plenty of time to deal with my health’s unpredictable ups, downs, and sideways turns.
Speaking of which, my POTS symptoms have improved slightly, but they vary from day to day. Some days I hardly notice, other times, just sitting upright in bed bumps my heart rate to 90 bpm. It’s strange.
But detailing the specifics of POTS or any other individual aspect of my health really fails to convey the gestalt impact of the situation. At any given moment, I have multiple systems malfunctioning, and if I concentrate on one of them for too long, the others act up. I don’t have the bandwidth to handle all of them. So many pills and powders and ointments and injections! Just updating all of my different specialists whenever new test results come back is exhausting.
If you really must get blood drawn at home, at least make it look cool. (The green light is actually an Allay lamp that helps a little with my migraines; I recommend it, if you have serious light sensitivity issues!)
Values show up here as well. If I’m not diligent enough about my CFS limits and trigger a crash, or if one health problem worsens while I’m working on another one, or even if I realize I just haven’t been relaxing often enough, I often start to feel guilty about my own condition. “If only I had gone to bed earlier, I wouldn’t have this migraine!” More ICK. The awful voice that drags me for my art also drags me for my health. Anyone balancing competing responsibilities goes through this on some level; for me, it’s more intimate, more internal, and I have less coping energy than healthy people.
Stopping ICK means abandoning my old ways of thinking. Of course, I do need to manage my health, but it’s not an achievement to earn. It’s not a race to finish, it’s not a battle to win. It’s not even a problem to be solved; it’s life itself. My body has needs, and I’m doing what I can to meet them. Every day. It’s messy, it’s difficult, and when it comes down to it, it’s really just another facet of the human condition.
Maybe today I’ll look for that Lynda Barry book. Helps keep the ICK away.
PS If you’re still catching up on my health story, here’s the Cliff Notes. If you want these updates in your inbox, head to my profile page, scroll past the subscription levels, & click Follow (it’s free!). If you know anyone who might be interested, please share!
PPS As a strange coda to my neuropathy saga‘s unsatisfying conclusion, a fascinating paper came out last month about the role of Small Fiber Neuropathy (SFN) in fatigue among CFS & POTS patients. Apparently, a lot of patients with these afflictions test positive for SFN, much like I did. The skin biopsies used for the test are about 92% accurate at diagnosing SFN, so a positive result is hard to simply dismiss. Through invasive cardiopulmonary testing, the researchers determined SFN was affecting the patients’ cardiovascular system and contributing to the extreme exhaustion that results from physical activity in ME/CFS.
After my two positive test results, I showed no outward signs of SFN during my clinical exam, and that exam trumps everything else. But this paper suggests that SFN may also present itself internally, as cardiovascular problems. Currently, clinicians lack the tools to detect that. But based on that study, it seems possible that I could have SFN after all; it isn’t presenting externally, but it could be affecting my heart.
Like most ME/CFS research, this study identifies a serious physiological problem that could be affecting me, but there’s just nothing I can do about it at the moment.