Long post ahead! CW: health/medical, disability.

Not having a great brain week. Was on an upswing of functionality, but then the CNA who was supposed to come help us out ended up being a nightmare person and doing more harm than good, and just keeping her in check for the week and a half we had her burnt out my small pile of reserve spoons. I am spoonless once more…and now they can’t find us a replacement for her. I haven’t even had the energy to open my birthday cards/presents yet.

Highlights from the terrible CNA include:
-her telling us that she literally believes that “test tube babies” and babies born through IVF and surrogacy “don’t have souls, for real. They’re just like robotic cutouts; God wasn’t there when they were conceived, so they didn’t ever get souls.”
-her telling me that I should just pay someone else to do my taxes while I was struggling to process instructions from and assemble paperwork for the person we pay to do our taxes. She was supposed to be helping me understand the paperwork; we had already discussed that it was for the tax accountant at least seven or eight times.
-“Oh, but you’re so young, and you look great! You’re not so sick, you probably don’t really need my help with [insert basic CNA purpose task that I absolutely cannot manage for myself], it’s so easy,” over and over and over and over and…

Also, really sick of having to explain to people that, just because my body is doing well or appearing to “get better,” it doesn’t mean my brain is in gear to match. Me successfully managing to go out—while other people guide me, transport me, protect me from overwhelming stimuli and from having to do the meltdown-triggering stuff, ie a lot of work from my support system that you don’t really see unless you’re out with us, watching the way Bruce subtly guides me through a crowd or the way Zach helps me go through the menu—does not mean I am somehow in possession of a working brain. I’m usually not, and often doing the physical stuff robs me of the ability to do the mental stuff—I confirmed this the hard way, when I got lost in (the extremely small city of) Newcastle despite being in the same identical spot and doing the same identical process that Ally and I had done three times already earlier that week. Except, when we’d done it before, she’d been there to read all the little map things and directional/store signs (I can’t read maps or pictographs now, and written signs warp strangely, moreso when I’m stressed,) and check the streets as we crossed them (I have this thing now where objects moving quickly towards me strobe and turn invisible and I freeze like a deer and this is also a major part of why I can’t drive anymore,) and navigate around knots of pedestrians (I now have the spatial awareness of a toddler and also fits of vertigo, so I crash into people a LOT when I don’t have someone else’s body to follow,) and remember the name of where we were going (I can’t easily hold things in my head while moving physically anymore; the concentration that movement and balance take mean that I rarely have any processing power left over for thoughts/memory—I can hold a light conversation while walking, but that’s on a good day,) and process the visuals of more than a 3’ radius around our bodies (I can no longer do this while my body is in motion without walking into/off of things, which is another reason I am unable to drive now,) and so I ended up getting overstimulated AF and just sitting on the back edge of a bookstore display and quietly weeping for twenty minutes before pulling myself together and trying to ask people for directions…which went really badly, because I can no longer easily process, follow, or remember directions correctly, and I ended up twice as lost and in the wrong transit station. I only got back without having to call an Uber (terribly expensive and very slow, and it was hot as hell out,) because I finally found a girl in a wheelchair and her companion busking, and I offered them £10 if they’d lead my brain damaged ass the (very short, maybe four blocks) entire distance to the correct bus station when they finished their set. When I got there, I still had to have Ally step out of work (a bake shop attached to the bus station) for a moment to help me figure out the bus timetable and where to wait for it. It was a miserable day, and I was basically useless for the next two after it.

So yeah, I spent most of the last three years not doing anything small and joy-bringing I wanted (needed) to, largely in part because it made people not believe me when I told them my brain didn’t work—“well, it seems like you’re well enough to do what YOU want to do,” whenever I managed something joy-bringing is a thing that cut me deep. No, I have a support system of people willing and sometimes able to make some of the things I want to do feel in reach for me again. I cannot magically translate Zach reading the menu or Bruce navigating the crowd or me actually managing to put on makeup despite the hand tremors into me or those other people being able to do larger scale practical things like finding me new medical help, doing my paperwork/taxes, cleaning the apartment, managing organizational tasks, etc. That’s not a thing and even if it were, it wouldn’t be reliable or sustainable or even really okay.
So I spent a lot of time as a dour hermit out of guilt at the idea of being happy while there were things that needed to be done. I needed to spend my energy on HEALING and RECOVERING until I was well enough to get the important stuff done. I needed to focus on that and only that, so I could resume my place as a functional member of society.

Yeah, turns out that’s probably not happening, in terms of my likely health and disability outlook. This is not a thing I will recuperate from so much as need to learn to manage and live with. It’s also DEFINITELY not happening if I’m so depressed and isolated that I give up and unalive myself, which has been an intermittently hovering intrusive impulse since I was a kid. It remains even when I’m happy, but looms huge when I’m depressed. Not pursuing the things that bring me joy and fill me up because I couldn’t do the things that are now hard or impossible and thought there was some correlation between those abilities? Has destroyed some of the relationships I cared most about, kept me creatively stagnant, and made me so depressed that I’m arguably less functional than I was even right after my strokes. Certainly less able to plan and organize and process information.

If you need me this week, you better be prepared to badger the hell out of me, because I am straight up muddling through thick fog—but please do it gently, as I’m so overwhelmed that I keep just dissolving into tears. My brain terrarium is all storms right now. 🧠⛈🫠

Unrelated, I took this pic of a glorious double rainbow off my balcony this week. Denver largely feels like living on terraformed Mars to me, but it has such gorgeous storms.