“You Can’t Know Until You Try”

Visiting Florida, my then-partner and I talked about our plan to go to Universal Studios next. My grandmother got out a faded technicolor photo album from her trip to Disney World in 1970.

I got the hint.

“Do you want to come with us?” 

“Let me think about it.”

                …

“If I go with you, I’ll need a wheelchair, and then we’ll get to go to the front of all the lines.”*

At Space Mountain, if I recall correctly, signs warned that the ride — Raiders of the Lost Ark? — was intense.

“Are you sure you want to go on this one? It won’t be too much for you?”

“You can’t know until you try.”

It was a little too much for me, but not for her. I have such happy memories of that day, because my grandmother had such fun.

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The Long Covid learning curve is a never-ending thing. Would it be too much for me to go to my cousin’s diving meet? 

Diving rounds, it turned out, ran simultaneously with swim heats. There was a lot of cheering, whistling, clapping, and general exuberant happy college student energy bouncing off the walls. I found a seat at the back, put in the earplugs, started taking photos.

I watched the various dives, recalled my own brief period of diving lessons, wondered what might happen if I tried a back flip now. When the dull roar crescendoed into deafening rumpus I put my hands over my ears. I was having a good time. 

After 30 minutes I stood up to leave. My stomach threatened revolt, my legs were weak, my balance was shot; I took the stairs carefully, gripping the rail. Back home, I staggered in the house and dropped into bed.

Catherine, bringing me tea: “was it worth it?” 

I don’t know. 

I’ve been working an hour a day, maybe two, trying to finish editing a book. I try to pace myself carefully: if I push myself too hard, I can’t work the next day. Or days. Or weeks. My eyes don’t focus. My short-term memory, gone. I can embiggen the type, and read the letters and the words. I can follow a short sentence. Anything longer, my brain runs out of memory buffer. I can’t hold on to it, so I can’t process it. 

The rest of today is shot. Tomorrow? I won’t know until I get there. 

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* Not a scam. My grandmother could stand, and she could walk. But she couldn’t stand in line for an hour or two, and she couldn’t walk miles around the park all day. Even the distance from the parking lot to the main gate would have wiped her out.

See someone who looks like they can do stuff, sporting a handicap tag? You have no idea what they’re carrying. Don’t judge.

Some Metacognition

I started keeping a log of activity and fatigue levels several days ago, and it got me thinking.

The idea was to see if any patterns emerge so maybe I can organize my life a little bettter. Turns out the answer is always the same: stuff happens. Before Long Covid, I’d roll with that Stuff and just keep moving, but now, Stuff Happens means something else doesn’t happen, and probably I still end up so exhausted I’m shaking. Pacing, ha ha.

Well, anyway, I ended up with some insights into how my brain works, and how it … doesn’t.

from “On Fire,” K. C. Greene

For my whole ADHD life, my brain has been like a ping pong ball catapult capable (look! alliteration!) of firing hundreds of rounds a minute. I was pretty good at catching some of the good ideas and making notes about things to think about later while swatting away or dodging everything else.

Turns out cognitive processing speed is much slower in people with Long Covid than in those who never got infected, or did, but recovered. The idea that slowed processing underlies everything wrong with my brain seems completely plausible.

Because I can’t multi-task any more.

Coming up with words — and spelling them! — while operationalizing syntactic rules of a language to form coherent sentences, working simultaneously bottom-up, top-down, front-to-back and back-to front, requires heavy-duty multi-tasking. 

Writing, same deal. It’s just a little less stressful because no one is watching while I struggle. Instead, I spend, well, sometimes hours, googling words and phrases to try to find the word I want. (“Plausible,” for instance.) Sequencing ideas and making sentences coherent, with brevity and maybe even wit, feels like hauling boulders.

Putting leftovers in a bowl and then in the microwave, food I’m not eating back in the fridge, and empty containers in the dishwasher? Multi-tasking. Before Covid Me wouldn’t even have remembered thinking about it; Long Covid Me gets wires crossed. (BCM? LCM? Hmmm.)

“On fire,” continued

The ballista keeps on launching. (“The Money Keeps Rolling In” from Evita ping-pongs to mind; nah, it doesn’t scan.) A news headline pisses me off (that’s its job now?), there’s a fawn in the neighbors’ yard, my mom sends a text (or five), a social media post gets me thinking, one of the dogs wants attention. Occasionally, the actual phone actually rings. So many decisions, so many ping-pongs to forget.

I try to write everything down. Seriously, everything. Yesterday Catherine noticed on her way out the door that the garbage truck hadn’t come yet and asked me to bring the can to the curb. I didn’t write it down, or do it immediately, and I didn’t think about it again until I heard the truck pulling away. Damn.

Last night, I made a note: “calendar the things.” This morning: What things? Uh-oh.

Alternatively, my mind latches onto some idea and won’t let go and … well, it’s interesting, and it’s important, but I need to spend my energy on other things, but I start looking things up and writing things down and looking up words and suddenly it’s two hours later and I have a headache and look, that almost-full cup of coffee is stone cold and I forgot to eat breakfast again. 

Sometimes forgetting seems like the less disruptive dysfunction.

Cooking is harder than laundry, also because thinking, slow thinking. I keep wondering why the physical demands of doing the laundry don’t take more out of me and why cooking hits me so hard, harder than it seems standing with peripheral neuropathy should be.

Slowed cognitive processing. I might follow a recipe or make it up as I go along; either way, I’m chopping and stirring, measuring carefully or eyeballing, trying not to forget anything, and still batting away ping-pong balls.

My big accomplishment the other day: I soaked a cup and a half of brown rice, drained it, measured water, started the stove, brought the pot to a boil, turned it down, cooked the rice until the water was gone, left it for a few more minutes, and then stirred it. Ye gods. If I ever *thought* about cooking rice before, it was 45 years ago. Now: so many steps. So many timers (an unexpected bonus of Apple watch). 

If I forget I’m doing laundry, maybe stuff gets a little wrinkled. I did laundry last weekend and there are still sheets and pillowcases in the living room. I’ll get to them, eventually.

If I forget I’m cooking? Things burn.

“On fire” concludes

Pacing and Recovery

You have to pace yourself, the doctors tell me, the occupational therapist tells me, the physical therapist tells me.

Learning to pace myself, it turns out, is a constantly evolving challenge.

I’ve started recovering physical strength, with the help of PT, and I’m able to handle daily life stuff withouth getting out of breath. Taking a shower, unloading the dishwasher, running a couple of loads of laundry. I can even manage some of the medical scheduling on my own — Catherine was doing all of this for me for a couple of months. 

I walk Stella. Or does Stella walk me? A month ago, we left the house and walked to the end of the block and back. Now we go around the neighborhood park, a little more than half a mile. We stop a lot so she can sniff things: she paces me.

Last week, I went for my first two bike rides since before COVID, and started lifting again, with the encouragement of the physical therapist. And with a long list of limits and precautions. I saw several deer and a couple of turtles in the park, and I worked up a couple sweats, and it felt great.

I also went to the Apple Store last week because my phone battery was draining itself, and two hours later, I was exhausted, and I’m still not exactly sure why. A combination, I think, of social interaction, overstimulation from all that was going on, and just not being able to rest when I started to flag.

It took me four days to recover.

I have so much trouble with words, mostly finding them, occasionally understanding them. Writing emails is a cognitive challenge. Working on revisions to that overdue book chapter that is is a much bigger challenge. I read a novel a few days ago for the first time since before Covid. I picked it because it was short. I took a lot of breaks.

After I hit “publish” on this post, I’ll go lie back down on the couch.

Yesterday, I went to the beach for the first time this summer. It, too, was exhausting, physically rather than cognitively. I swam only where there were almost no waves, and even that was challenging. Being in the water made it hard to breathe, something that’s never happened before. There was a lot of walking.

I am flattened today. Today, I struggle to go up and down the stairs to the basement. I napped this afternoon, something I haven’t needed to do for a few weeks. 

How long will it take to recover?