Aug. 12th, 2014

kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
On Friday, I didn't make it out of bed until about noon, then threw myself through the shower and such as P was due to arrive. I then flumped about pretty uselessly until he prodded me out of the door and onto a train and basically dealt with getting me to the picnic that was M&C's joint stag/hen do. We stayed until 6ish, and I think I then maybe napped? But we collectively got some work done, ate another meal, and I introduced P to some of my current favourite TV and also some poetry I hadn't waved at him before.

Saturday he again took responsibility for getting us out of bed and out of the house for breakfast and in enough time that I could do the necessaries at work, we spent a bit more time than intended hanging around at the V&A, and then wedding. He & Nik took charge of making sure I made it from the wedding venue to the reception; after an hour or so at the reception I made it home, where [personal profile] rysmiel provided incentive to make there be dinner and spend the evening being vaguely human and useful.

Sunday rysmiel left early for their next thing, P & I woke up late (around noon), then I think P took charge of making sure we ate and I mostly spent the afternoon/evening asleep because I was wobbly as all get-out, to the extent that I stayed in bed rather than going to the Prom I wanted to (P went to the thing himself, I stayed horizontal and slept some more until I got well enough that I could get the breadmaker going for ill-advised late-night baking, and then I rearranged the kitchen some in ways I didn't really think through at all that resulted in me having to do a controlled fall in the pantry because I'd lost the ability to stand again).

Monday, again, P took responsibility for getting us out of bed at 11amish, phoning in a lunch booking and route-planning to get us to & from the place, and then for getting us out the door in time for the Prom (to which we did both make it). Also for organising dinner.

Today he left at around 8.15am. It is now 2, and so far I have managed to sleep through the fortnightly lab meeting I'm supposed to e-mail reminders about for the second time running, brush my teeth, and eat yesterday's leftover curry. Also check my e-mail. Smallcousins are having a summer party I really want to go to, but the idea of finding my way to Liverpool Street and then managing a train is daunting enough that I have not yet actually managed to get out of bed properly or shower or anything.

This is kind of why I need a carer. :-/
kaberett: Euphorbia cf. serrata, green crown of leaves/flowers central to image. (spurge)
At the moment I'm talking a fair bit with [personal profile] quartzpebble about how disorienting and terrifying executive dysfunction can be. We've both been offered PhD places at prestigious institutions, we're clearly both capable of doing very good work within the context of the academy, and yet some days we not only can't even begin but we can't reliably sleep schedule or feed ourselves. Finding diagnoses that explain it - ways that other people have spotted patterns that match our behaviour, that mean it's not an individualised problem of laziness or whatever - is an immensely big deal, and nonetheless I just keep on coming back to Onsind when they sing I only wish that I could find a way to accurately describe the effect that this has on me.

Internalised ableism, I suspect, is playing a role here; to large extent I've learned that feelings of shocked betrayal aren't a terribly useful response to one of my legs refusing to bear weight, and that neuropathy affecting my lower limb function isn't actually a moral failing on my part. I can even do this about obvious depression-related symptoms. But just the executive dysfunction...? Not so much.

I have no idea how to make this work with my job. I love doing my PhD and I love being in academia and I'm very, very scared about the extent to which being an independent PhD student, "not needing hand-holding" (or, less disparagingly, "being self-directed"), is valued -- because of all the ways in which I can't be self-directed.

Which brings us on to the stranger on the bus a month or two ago who decided that the wheelchair-using young lady was appropriate cripspiration and started telling me about how amazing it was I was leaving my house, etc etc, along with cheerfully recounting for me the story about how her father always said that "can't" is spelled w-o-n-t.

Over and over again (I only wish...) I come back to "can't" and "won't", to the difference between "this is not a thing I am capable of" (and, again, I find this easier to handle in terms of physical impairments) and "I am not willing to make the necessary trade-offs to do this thing", to learning to trust myself in setting and defending those boundaries, to being able to believe that just because I can pay a price doesn't mean I must. "Won't" is allowed. "Won't" is permitted. This thing, too, I may have.

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kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
kaberett

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