Following up on our Long COVID episode with Tara Haelle, Matthew will be expanding the Listener Stories portfolio with stories from listeners about navigating Long COVID. Why? Because there’s nothing like a mysterious disease, denied by some, stigmatized by others, and politicized by multiple interests, that will bring a person closer to the appeal of alt-med conspirituality.
Matthew Stillman is our guest today. Author, documentary filmmaker, and lifelong New Yorker, Stillman grew up in an eccentric family of spiritualism and alternative medicine, but which also fostered a healthy respect for evidence-based medicine. So what happens when experts at Mt. Sinai Center for Post-COVID care reach the end of their capacity to help him with not one but two strains of Long COVID? Red light therapy! Chinese herbs! And a bracing contemplation of what it means to explore the tension between hope and knowledge.
Show Notes
Matthew Stillman
The major genetic risk factor for severe COVID-19 is inherited from Neanderthals | Nature
How Genes from Neanderthals Predispose People to Severe COVID-19 | The Scientist Magazine
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Hello everyone, welcome to Conspirituality, where we investigate the intersection of conspiracy theories and spiritual influence to uncover cults, pseudoscience, and authoritarian extremism.
I'm Matthew Remsky, and we can be found on Instagram, at ConspiritualityPod, that's our handle on threads as well.
And you can access all of our episodes ad-free, plus our Monday bonus episodes on Patreon, or just those bonuses via Apple subscriptions.
We also have a book out.
Rumors and reviews are that it's quite good.
It's in all formats, print, ebook, audiobook format.
This episode is part of our Listener Stories series, which is an ongoing project in discussing with listeners their entanglements with conspirituality and cults, how they got into them, how they managed.
How they had difficult but also unexpected experiences along the way and how they recovered.
But today is a little different because, as promised, I'm starting up a series of conversations with listeners who are dealing with long COVID.
So today my guest is Matthew Stillman.
Who is walking that long line, and as he does so, he's dodging but also dancing with conspirituality along the way.
Hey, Matthew.
Welcome.
Good afternoon, morning, whatever time it is.
Yeah.
Thanks so much for taking the time.
Absolute pleasure.
So, I wanted to open by saying, you know, This might be a tiring experience.
You can let me know as we go forward.
We can bail at any time.
Yeah, I'm a grown-up.
I can speak for my own boundaries, but I think we'll be okay.
Okay.
Now, you wrote to our chat section on Patreon to inform the thread that you're actually dealing with two different strains of long COVID.
So, why don't we start there?
Two strains.
Some people are just lucky, I guess.
I had two infections of COVID.
I got the original OG1 in March of 2020.
I've, I would just briefly say that I've been an athletic, healthy person my entire life, but I got a six-week-long cough which didn't disable me, which didn't send me to the hospital, what would be termed a quote-unquote mild case, but it was unkickable and it was like a cough I had never had before and just wouldn't go away and It seemed clear to me as the world shut down in March, but I was still coughing.
But maybe I'd been coughing for two weeks.
I'm like, oh, I guess I have this COVID thing, because I live in New York City.
I probably got it on the subway.
You know, that was probably happening.
But, you know, a month later, I was like, oh, my cough is still happening.
But it faded away.
And of course, the language around long COVID didn't really start to emerge until the summer.
But I still wasn't feeling right.
And I can speak about what those particular symptomologies were.
And of course, there also was a time of tremendous stress of being chronically online.
So there's other things that were going on, but there were things that were persisting.
And as I started to see online, this language around long COVID, it was sort of aligning Of course, this is anecdotally.
Science had no idea exactly what was happening yet.
I started to find on Twitter and on the newly formed Zoom, who never knew what Zoom was at the time, of these little rooms of people who get together and say, yeah, this is what's happening.
And I would get on those.
I'm like, yeah, this is what's happening to me too.
It's that You know, bubble talk, is that confirmation talk?
Sure, but also it seemed discovery talk as well.
And then my second infection was around Christmas into New Year's of 21.
And that was the Omicron variant.
And that had a completely new symptomology, which emerged literally the day after.
And so I was, you know, mild sickness, you know, sort of manageable and sort of a annoying head cold sort of a way.
Within two days of being negative and feeling quote-unquote back to normal, it was clear, oh, things aren't back to normal.
So the symptomologies, which are different, for the first one, I would say the ever-favorite brain fog.
I started to have Cognitive issues.
I'm not a dumb person, but things that I knew that I knew just suddenly, like, couldn't come together.
And it wasn't always about, you know, directions, or always math, or it just was sort of things that are deeply in me.
Unkickable tiredness.
No matter how much I slept, no matter how much I napped, no matter how much I worked out to try to make myself more tired, it just wouldn't go away.
And then disturbed sleep.
So again, I could sleep for eight hours, I could sleep for nine hours, but I would wake up feeling like I slept for less hours than that.
Right.
So that was the first symptomology.
And I'd say executive function stresses, not being able to organize my time, not being able to concentrate as long.
And again, are there other things going into that?
One thing that I just want to note is that hearing this story as, you know, compared with many other stories that I've heard, there's also an intersection between the stresses of the emergent disease and symptomology and also the stresses of All of the discourse, scrolling, all of the conversing about it.
There's this overlap between the fatigue of trying to figure out what's happening, the fatigue of information overload.
And what the virus has actually left you with, which is like, seems to be a very compounding problem.
Very compounding.
And you simultaneously have to be hyper, hyper vigilant, but can't be hyper vigilant.
And you have to try to network your intelligence as much as possible to see if you can get.
But of course, that can have problems where you start to get confirmation bias.
Like, is the person that I'm asking just tilted towards this?
Am I just only talking to long COVID people?
Right.
But again, long COVID was a new thing, so lots of even doctors who are really super smart We're trying to figure out what's happening here.
And they still are, although they've learned more.
Anyway, my second infection, which I had just briefly begun to say that in terms of what it was as an experience, wasn't that bad as a COVID experience.
But two days after it was over, I started to have breathlessness, which I could just be sitting on a couch doing nothing and be suddenly out of breath like I ran a 400 meter sprint.
