Feeling vs. Being

Film images of a brain scan
Photo by cottonbro on Pexels.com

A month ago, I had a seizure. The third one in my lifetime. It happened while I was (under a neurologist’s supervision) not taking the anti-seizure medication that I have taken, twice daily, for almost 2 decades. Because I wanted to know – do I not have seizures because I don’t have a seizure disorder, or do I not have seizures because the meds are working as designed? So I have my answer (the latter). And every day for the last month, twice daily, I’ve been taking those meds again.

The hospital gave me a 30 day supply, so I just renewed the prescription a few days ago, and the pharmacist included the information sheet. May cause headaches. May cause fatigue. May cause dizziness. May cause weight gain with long term use.

Great. I get the trifecta *and* the bonus prize. Yay!

But, if this is the new normal, then it is, and there needs to be a plan, right? While normal work day and normal activity level and normal sleep schedule are good goals, they’re just not happening right now. I understand that a seizure is an electrical storm in your brain, and in the aftermath, there’s neural short-circuits that need to be detoured as your brain heals itself. And you can’t will it to go faster than it’s going to. Alas.

I’m kind of taking the Physiotherapy Method tack on this – it’s good to challenge, but you also can’t challenge so much that you don’t let your injury heal. The problem is, of course, that I don’t know where the injury is (other than somewhere in my big giant noggin). So I don’t know if I’m leaning too hard into it, other than when I’m so tired that I can hardly walk upstairs to go to bed. That’s not so good. But I also know that the neuroplastic capability of one’s brain is truly astounding in it’s ability to reroute neural pathways when one path is damaged. So come on, brain, have a chat with the GPS woman and RECALCULATE THE BLOODY ROUTE!

Did I mention that I’m rife with frustration, too? Yeah, that’s a thing.

And because the universe has a sense of humour, an article showed up in my feed today from OutsideOnline. Tough love is an advice column, of sorts, and the question was from a person who got Covid, and is better, sometimes, but not all better, all the time, and they feel like their friends don’t understand what that’s like. Part of the article hit the nail on the head:

Putting aside the questions of when, if, and how you’ll get better—and however your body functions, I hope that you’ll feel better soon, and gain the support and comfort that you need—it might be helpful to recalibrate your expectations for your daily life in the context of your current health, if you haven’t done so already. What does a good day look like right now, and how can you reshape your life to make more of your days like that? In what ways are you still trying to do more than you’re reliably capable of? Are there certain goals you can let go of, or at least set aside for a while? Can you schedule recovery time after you do something big? What are the ways that outside help could ease your burden?

Chronic Illness Changed How I Recreate

I’ve been speaking with friends and my dad and my colleagues who are encouraging me to take the time to feel better. And there’s the rub – I don’t want to just feel better, I want to BE better, and that’s not a thing. The article goes on to say that that adjusting expectations doesn’t mean you’re giving up, you’re just doing your best to exist in your current situation. Sheesh. Well, yeah, when you say it like that, it makes perfect sense.

But there’s still a bunch of lingering issues that are chewing on my ability to cope. I was just promoted to a Senior Writer role, and I’m struggling to do Junior Writer tasks right now. I have been working hard in the last year to improve myself – my physical and mental health, my environment, my diet… and this setback feels huge. It feels compounded by not feeling stable on my feet. It feels compounded by not having a thing to point to so I can say “THIS is the thing that needs to heal so I can be better. I don’t even know what better looks like in the new normal. And that adds a double-serving of freshly baked rage, too.

I’ve spent a considerable amount of time in my career championing accessibility issues in our documentation and our products. I know that there are situational and temporary and permanent accessibility issues that one might have. And I know that recovery isn’t linear. And that adds to the frustration of not knowing what it looks like. Mornings bring more stretches of Better. Later in the week brings more stretches of Worse. That’s as close to a pattern as I have.

But, what’s this?

Is having an idea of when I feel more or less capable to do brainwork the definition of adjusting expectations? It feels like maybe it is. A long time ago I read about something called Boomerang Tasks. These are the things you have to do before you can do the thing you set out to do. You have to get stamps before you can send cards. You have to buy yeast before you can make the focaccia. And you have to adjust expectations before you can reprogram your own thinker.

*Sigh*.

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