In the last post, I described my thoughts on COVID-19 itself and how it may or may not affect people with PANS-like conditions. This post, in contrast, will focus on how the changes to my routine caused by the world’s response to the threat of COVID-19 has impacted my progress.
While there is never a good time for a pandemic, I feel that this one has almost come at the best possible time for me and where I needed to get to. I had recently discovered some important new food sensitivities and come to grips with the extent to which my brain dysfunction was impairing my ability to focus on the details of, and therefore to get anything concrete done in, not only the areas of my life where I knew I struggled, but also in my passion–science.
Getting to the bottom of this didn’t just require knowledge, though, it required me to focus on very subtle signs of improvement or worsening in moods and overall functioning. Waiting until anxiety, anger, or unfocusedness got quite severe meant going far beyond the point where I could still reverse the effect of an action (e.g. eating a food) before the effect got worse. Furthermore, the changes that had dramatic, immediate effects were often not the ones that ended up producing lasting effects.
Going out and doing things was a double-edged sword. It allowed me to experience something more of life and feel less trapped in a hole, but at the same time I had started using it as a way to “cover up” feeling very uncomfortable and restless inside. When I started making a turn for the worse, it was easier to just reflexively get out there and try to distract myself rather than actually be conscious of the worsening–and let’s face it, nobody wants to constantly be reminded of backsliding in progress. However, it is an often-stated truth that wherever you go or whatever you do it’s impossible to escape your own mind, and being literally stuck for days between my house and my neighborhood made this more tangible.
As a result, I began to focus more on the immediate way I felt in a given moment and how to make it better. I wasn’t waiting to suddenly be full of energy and be able to achieve all my ambitions–and not even to have a “magically” good time out doing something. I became more conscious of trying to avoid “lows” rather than always chasing “highs”. And the lows around the beginning of our shelter-in-place order were very low indeed–I had bad pain in my gastrointestinal tract after eating almost anything. Slowly but surely, I eliminated the foods that were causing the lowest lows (in particular, carrots were one of the worst offenders–something I hadn’t expected since the effect came on slowly and gradually), and discovered that some I’d avoided for years I could then tolerate perfectly fine again. I’m still not where I want to be, but I look at where I was and am amazed I’ve come this far.
I also discovered that while I wasn’t going regularly to places as interesting as the ones I used to go before COVID-19, there were places even near my neighborhood that I had never explored before, and that I could experience some kind of novelty and interest in those, provided that I wasn’t in too deep a mental health hole. I also rediscovered biking, and found some neighborhoods to bike to that I will likely continue going to long after the pandemic. Now that things have mostly reopened, I feel I have a more realistic feel for the amount of power (or lack thereof) my surroundings have on my state of being. They are far from UNimportant, I still ultimately depend a lot on surroundings to have a positive mood, but there are times when the only way out is to look inside. And I know that if I could find things to be interested in walking around my neighborhood, I know I can do so when I can go anywhere, provided I’m in the right frame of mind.
Another thing that has struck me through this pandemic is how NOT surreal things feel. After years of feeling that everything was surreal with the strange states my mind was prone to, the odd anxieties, the feeling that I was living in a time warp, the idea of wearing a mask to go to a store feels really mundane in so many ways. My mental state is still not “normal” (i.e. how it was before PANS) by any stretch of the imagination, but comparatively this spring has been one of the more “normal-feeling” parts of my life, second only perhaps to when I was in graduate school. Then my emotional outlook was actually considerably worse than it is now, but I was also more “wrapped up in life”. It’s been really odd in a way to see others freaking out when I’m more optimistic than I’ve been in quite a while.
This all makes me think about something a therapist said before I went away to graduate school, when I was trying to decide whether to go. She said that I seemed like a kind of person who is really drawn to and needs adventure, and that moving away to another part of the country would be good for me for this reason. It’s true that I am that way, but what it means is that I can be carried along by a sense of anticipation and adventure even when I’m actually just holding on. And life isn’t one long adventure, there are a lot of “boring parts” too. Even when engaging in one’s passion, there’s a patience needed to accomplish things and not just anticipate or think about accomplishing them. And that’s where I get stuck–I can’t get through those lulls in the adventure without falling apart–and where I need support the most.