The shadow of doubt.

Imagine the theme from The White Shark as you read the following line:

After just having recovered from ME/CFS to a large degree, I got Covid recently.

Why the dramatic music? Well, if you’re in the Long Covid or ME/CFS bubble, you know. I even had people telling me below my video, ‘Just wait ‘till you get your first serious infection again and you will be right where you left off with your symptoms’. Officially, a reinfection with Covid (I had it before) is considered a new activation of your immunological response and therefore poses a high risk for worsening your condition. It is the official guideline to ‘avoid infections’ (like, how?) to avoid long-term effects.

As you know by now, I have long since left the medical guidelines for ME/CFS (under which my recovery would not have been possible since what I did wasn’t considered a valid strategy, even less so for full recovery). I’ve come to see my body as generally recovered from the severe nervous system dysregulation it was in up until a few months ago. Which in turn means that an infection … is an infection. It happens, it sometimes sucks, it goes away.

And yet. The medical narrative around ME/CFS and how it operates under certain influences is strong. If you’ve watched any of the documentaries that are around, you’ll have seen what they say. You don’t recover. Some people get better, then they get worse again. It’s a strictly physical illness. There is no cure. So far, none of that had been true for me - but the message is strong and in the back of my mind, there was doubt. Maybe my whole ‘I’m recovering from an illness you don’t officially recover from’ was a sham? Maybe I’d eventually have to crawl in front of all of you, begging your forgiveness for spreading false hope when really I just hadn’t ‘gotten’ it yet?

So Covid came. Covid stayed for a few days. My head hurt in this specific way I only know from Covid. My chest felt tight and I was out of breath sometimes. Covid went. I continued with my life. I had to cancel two meet ups with friends that week, after which I was back to my normal activities. I’m fine.

There are two larger things at play here that I dealt with during this infection. The first is our relationship between, as I like to call it, second-hand knowledge and our own experiences. Second-hand knowledge to me is everything you can’t verify from your own experience. We rely on this type of knowledge for a lot of things in life and I’d argue that the ratio between first-hand and second-hand information in every day life is favoring the latter more and more. Just observe how much of what you’re saying every day is something you’ve actually seen first hand. Most political discussions, for instance, consist almost entirely of second-hand knowledge.

Which, to get this out of the way, isn’t bad. It’s in fact almost inevitable. The world is insanely complex and it would be impossible to navigate without relying on second-hand knowledge about how things work. I certainly wouldn’t have a bank account or a gaming PC if I wouldn’t trust something I don’t fully understand.

Trust - to a degree. My point is, we are so used to living on second-hand knowledge that we somehow completely take personal experience and agency out of the picture. Yes, sometimes we are an exact representation of a statistic, and we are just as easy to manipulate by advertising as everyone else (even though we believe we aren’t). Personal biases and cognitive fallacies are real, and second-hand knowledge helps us uncover them. That’s a good thing. But sometimes we also aren’t. And I believe we should always, always be open to that possibility.

Because, and this is the second thing, our fear response creates self-fullfilling prophecies as its main job. Fear is powerful, especially around health and other basic factors of survival. And because of its power, it directs the focus. Imagining with dread the way I was going to decline and suffer again was a sure way to get me back into a dysregulated state and put my body under more stress - which would effect the outcome of my infection as well. Micromanaging and monitoring all symptoms in an attempt to control the severity of my sickness was exactly what initially kept me stuck in ME/CFS, because it’s telling the body that I am, in fact, unsafe, and that my headache is, in fact, dangerous. As long as I believed that my brain was inflamed and taking permanent damage from my symptoms, I was fighting what I was experiencing, and it wasn’t getting better.

So I knew that even though I couldn’t ignore my doubts when I got sick with Covid, I could go through the experience calmly. Fear shouldn’t be ignored or suppressed (no emotion should be suppressed long-term, by the way, says the psychologist), but you can certainly balance it out with acceptance. I didn’t fight my Covid headache or my exhaustion, I just let it be. My body would take care of it in its own way, no need for me to focus on it intently, trying to forcibly remove it somehow.

I think our reaction to symptoms stems in large parts from our very ‘mechanical’ understanding of our bodies. We run around with the expectation that unless everything works at optimal capacity (whatever that is), we have to constantly fix things. Like, ‘Oh, I can’t be tired right now, maybe I should drink some coffee’. Or, ‘There’s this weird feeling in my chest. I want this to go away immediately.’ Everything that doesn’t scream ‘health’ signals danger to us, and we give that signal right back to the body, who’s going to respond in its own way, by, you guessed it, making it worse.

Because of this way of thinking that penetrates all areas of life, it’s often inconceivable to us to just let things happen and trust, without trying to take control. I learned to do just that in the hardest way possible this year. My biggest initial fear - that what I had was ME/CFS and that I was going to decline and be in pain for an indefinite amount of time, like a slow death - came true. The darkest thing I could think of, losing all capabilities in life but being awake enough to witness it, was happening to me to a large extent. This was darkness. And I lived through it. When I came out of it, I realized that I was no longer afraid of most things. I didn’t feel the need to intervene when something came up - pain, rejection, emotional baggage. The desire to control what happens inside and outside of myself came, in large part, from the fear of darkness - which I think ultimately is the fear of dying. But now that I had seen darkness and knew what it was like, and I was starting to befriend the aspects of it that were teaching me something, there was really not much left to fear.

Which is not at all like saying ‘I seek out every risk now because nothing can happen to me’. No. It means that whatever does happen while I’m living life is … fine somehow. The idea of control is often an illusion anyway. My experience of things, both pleasant and unpleasant, is a lot calmer and immersive now. I’m not halfway out the door as soon as something comes up. I get Covid after ME/CFS? Alright. Bring it.

I have found that the respect I’m now showing towards my body doing its thing has fundamentally changed how its communicating with me. One of the first things to learn about pain is that it’s not objective in intensity. The brain will decide, based on a number of factors, what it should look like to achieve the desired result - which is why you don’t feel the pain of your twisted ankle while running away from a predator. So now that my nervous system is regulated better and I’m actually listening when my body is signaling something, pain is a lot less present in my head when it happens. I’m not trying to fight it and it will drift in and out of consciousness a lot more as opposed to being all-consuming.

In short: After having gone through an illness that takes away all sense of agency, I now feel like I have more of it than ever before. The real power is in radical acceptance and trust, which takes fear out of the picture. I now deal with what comes up instead of fighting it to protect an imaginary future that doesn’t exist yet. I’m not asking, ‘What could happen?’, I’m asking ‘What do I need right now?’. Big difference.

So yeah, I’m doing well. Tiny house is almost fully furnished, I have settled into my routines here and I’ll be back working in props in several productions in November and maybe December. Videos on my channel continue, I’m already working on episode four of my series. Picked up guitar lessons and singing again. Life is lifing.