The Performance of Illness

I’m feeling sick today. And struggling with adapting to it. I sort of can’t tell the difference between being sick and being depressed, and so staying in bed scares me because that makes depression worse. Also my childhood trained me adversely to noticing poor health. If I wasn’t vomiting or so pale and sweaty that it upset other people I wasn’t “sick” by Mother’s standards and I had to just continue regular life. That was usually best anyway, since not managing the household for a couple of days could be real bad. When I was sick enough to require accommodation – when other people wouldn’t let her ignore it – it meant that I had to lie in bed and try not to need anything or make any sound, as that might remind Mother that I’m around instead of at school or outside or wherever she wanted me to be. Not eating, or reading or even having my eyes open, because all of those would prove I wasn’t really sick and was just faking it ¹She always feels so persecuted by me, and it’s worse when I need things. I must learn to need less. If I had been more careful I wouldn’t have gotten sick. Why is this so hard for me everyone else can do it. I’m such a baby. These baby feelings of wanting care are really holding me back. I wish I didn’t have this disability. for some selfish reason.

So it’s not only tough for me to imagine that rest is a good idea, it’s distressing to actually undertake. It not only feels like my life will fall apart from lack of management – or that I’ll fall into depression – but it feels like I’m hurting people by being unreasonably affected by my body. It feels like I’m trapped in bed on the porch waiting for it to be the right time of day to be allowed more water or access to the bathroom, not allowed to even cry about it.

I obviously never had care, let alone good care that considered my mental state, but it was sort of a problem for Shanda too. For you receiving care was a nervous experience – it made your parents anxious and so they required you to make lots of decisions while they could not. Now you do the same sort of thing to me – you want to help but you try mostly through inattentive questions. You want to have me tell you the “right” answer about how to provide care but what I need is for someone to do the deciding for me for a minute.

Eggsy asked me for help yesterday. I like it when people imagine I might be useful. I’m not 100% sure I’m going to live up to expectations but I’ll do what I can. I suspect the motivation is as much about the security of having a plan as it is the long-term outcomes, and I’m good at planning.

Ben is going to live with me for a couple of weeks ²This is what he told me early this morning. I haven’t heard anything from him since. This is one of the reasons it’s hard to have him in my carefully coordinated life. while he recovers from a broken collar bone. A bone he broke the day he was born and several times since. It’s an injury that makes using your arms difficult, and with his MS he uses his arms for basic mobility. It’s tough for us to live together. It’s really easy for me to resent him, even though I know the abuse and the inequitable treat was not his fault. And to feel guilty at the same time, for abandoning him when I left Mother’s home. For never helping him find safety. And he’s going to be cranky and in pain and unable to ask for the help he needs, all of which will make life complicated. I have a high tolerance for complicated but my life is already holding more than it’s fair share.

DerbyK has complicated news themselves. Sad and relieving and full of guilt. Potentially isolating, as grief always is. And a real weird birthday surprise. I know it’s hard but you’re up to the challenge, and you don’t have to do it alone.

I did manage to skip work today. And mostly feel okay about it. I was able to sleep a bunch which made the waiting easier because that’s the one thing you’re allowed to do when you’re sick. I also skipped all the getting my shit together bits that I attached to leaving the house, like changing my bandages and choosing and adopting an appearance and processing the mail and managing the dog. Which is mostly fine but I should try to unpackage those things in the future so I can still do the ones I want without the external requirements. I don’t want to get dressed when I leave I want to get dressed because I like my clothes, or at least their technical function.

I feel a little bad about not getting to Eggsy or Medicaid the rodent ramp or dishes or laundry or food management or writing for the past 2 days, even though I have good excuses. I would never be hard in anyone else like that. The delays aren’t even relevant to the outcomes. But not doing things that were in my plan is proof that I’m lazy, or depressed, or just not in control of my life and so I just have to get them done. Even if it means I have a hard time doing a bad job, it’s better than the feeling I get by skipping it. Or at least that’s what anxiety yells at me, on top of everything else.

Got to gym today with E finally. I still couldn’t breathe but weights are sort of okay for that. I was quickly relegated to sitting machines because I was frequently dizzy but it was still good to do. It helps me be less worried about depression, and more easily see a physical symptom. And to feel less trapped by the way that standing is uncomfortable and slightly dangerous. Plus I like their coconut shampoo ³I realize I am technically capable of buying any shampoo I like but it’s hard for me to imagine owning shampoo in general, let alone one that I choose for reasons other than unit cost..

Chatted with M for a minute about my day. I appreciate the prompting. I have lots of post hoc introspection in my life but it’s easy for me to ignore things that are still happening. Things like the condition of my body, which apparently needs management throughout the day, not just every day or two. I spent a long time having a life that could work even if I didn’t get to sleep for a couple of days, or couldn’t have lunch until next week or didn’t have water until tomorrow. One of the things necessary to achieve that is a willingness to power through anything, not even hoping it will eventually get better without your intervention, just deciding it’s not a priority. It’s not anywhere near safe and it’s only sometimes effective, but it’s better than dying because you couldn’t do what life required of you. Sleep is great but it’s worthless if you freeze to death while it happens. It’s a great way to keep yourself you alive, but it’s a terrible way to live. And you can help me stay out of it.

I moved to Seattle for the winter weather. Being away and the actual snow made this year a little tough but today was actually good. Cool enough to be comfortable even when I move, sun behind hundreds meters of earth, gradient sky temporarily visible between clouds, distant mountains tipped bright red [fig 1]. And also green everywhere, enough to help obscure the inhumane infrastructure of the city [fig 2].
I got 30 colors of pigment with a somewhat more even distribution of hue. It’s still too much brown and not enough orange, but it’s better than the grab bag of stuff I had before. They’re packaged as unnecessarily wide crayons in a plastic shell – I had to buy a 12mm pencil sharpener – but they’re all vivid, opaque colors and they apply easily [fig 3].

Shanda continues to do better. You had a some trouble getting started with caring for me, but you got better and it really helped. And you tried to talk to me about how being sick is supposed to work. Which didn’t quite take but did help me see why I had trouble doing it. And helped me be reassured that my well being isn’t too selfish goal. But you’re still plenty twitchy on your own behalf. It leaks at Dog a little. I hope things keep working like you want. I’m sorry I can only help with parts of it.

ZiB

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Sent from a phone.

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