The truth

of my life is that no one wants to be my friend. Which sounds pathetic or seeking or whatever, but is actually just true.

I have to beg to get anyone to hang out with me. And then, even then, mostly they back out or cancel. And sometimes they don’t even tell me.

I have lost every friend except one at this point. And they’re all gone for good reasons–one raped my wife; one was abusing me; two wanted me around only for their own self-gratification, and as soon as I tried to say “Hey, can we talk about me for even three minutes?” they snapped.

I am too difficult, too something. I am lonely.

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Struggling with Privilege and Guilt

I’m going to be talking about my own struggles with disability, brokeness, unemployment, white guilt, and social justice work–especially as it concerns moving finances from white people to POC.

I believe deeply in reallocating resources from white people to POC. I believe in reparations–that they must be made, that we have so far to go, that wealth gaps are real, that disparities in pay and wealth exist along racial and gender lines and that these disparities intersect and shift depending on the combination of race and sex/gender in question. And moreover, it’s not just that I *believe* in these things, but that I know them to be fact.

I am also struggling with being disabled–with how much I can do, and the fact that I am unemployed and have been for 3 years (more if we discount my TA year, which didn’t actually net that much income–not enough to be taxed). Both my wife and I have a lot of medical bills (not as many as some people, but still–she has a minor brain tumor, and I have…whatever is wrong with my body. No one knows. It doesn’t make it better not to know, because I can’t quantify or explain it more than “hurt/pain/nausea”). I deal with a lot of guilt already from not contributing financially to our household in any significant sense. I’ve started selling some virtual goods, but that’s not really much income–so far, it’s maybe $1 in total income. And I’ve started doing some work for a friend, but it’s more of a trade–she’s doing a thing for me because I’m doing a thing for her. So, that’s not really income, either. So–I’m still not generating income.

And at the same time, we are broke. I’d say we’re poor, but I’m trying to reserve that term for people who are low-income, like we used to be. Technically, we’re not. My wife’s job pays well, insofar as these things go. But those medical bills? They eat up a lot. Plus, we’ve had a lot of other expenses related to life in the past few years–from me caretaking my grandma and the associated travel throughout her terminal cancer over three years’ time, to our beloved cat taking suddenly ill and then passing away, to my other grandmother passing away, to needing to move for health reasons for both myself and my wife. We try so hard not to spend extraneously–not on eating out, or even small games from app stores, or anything. We don’t have cable or a landline. We buy groceries from the cheapest store we can, and as few as we can manage for each week. And we’re still going negative, slowly but surely. We don’t qualify for food stamps, either. I’ve tried. So…?

Anyway, the white guilt comes in because I see some POC post on Facebook, when they are fundraising, that white people need to open their pocketbooks and fund this and that and abc and xyz project. There are a lot of them. And I would *love* to be able to give to all of them. I used to, before I left my abusive ex. I would just give $5 here, $10 there–because we couldn’t afford much then, but we could afford that. And now…we can’t. And some of these posts are using guilting tactics: things like ‘if you don’t donate to my project, I see you and I will delete you from my page,’ or ‘oh, everyone can afford $1 or $3.’ But that’s not true–not if giving means not eating, or not having medications we need.

And also, I don’t want anyone else to be without necessary things. And I so definitely want to eradicate racism together with all of these people. Which is just this huge project. And sometimes…sometimes, even though I know we can’t afford it, if there’s a stupendously huge need, like bailing people out of the horrendous jail conditions here in StL, I will still put $10 on a credit card…even though we can’t really afford to make those monthly payments go up. Even though I don’t want to put more money into those big white banks.

I just…I don’t know how to feel, I think. Because it feels on the one hand like, well, if I’m going to be deleted because I can’t afford it…well, I need to just do what I can. I can’t pay into everything. And on the other hand, I really want to work with these people in whatever ways I can to overthrow white supremacy–because it takes relationship with one another to do that, and because this isn’t a loner project, and because it takes everyone from the wealthiest to the lowest-income, of all races, of all genders and all sexes to do this.

I think maybe I’m stinging in that place where I feel responsible for all the things, where I feel like I’m supposed to take care of everyone, and also, I know I can’t, so I feel helpless. I want to say something, and also, it feels a little fruitless, because no matter what I say or what I do, it might not be good enough. And I have to be able to let go of that instead of trying to get someone else’s approval. I just have to do my best, and be at peace knowing I’m doing my best, even if others can’t see it. And even if it doesn’t always feel like it because I am terrible to myself.

Achy Body

I am exhausted.

It’s 2 a.m., so that’s maybe not a surprise?

But also, I’ve been sleeping a lot. I don’t know if this is still shingles-related, or depression-related, or just my-body-hurts-related. It’s hard to tell. I’m still on the retroviral, at a lowered dose, to fight off PHN. Every time my eyelid swells or I see a bump above my eye or my right side of my head itches, I get a little tense and worried that it’s coming back. I don’t know if it’s possible? That soon, anyway? I know that it is possible for people to get shingles 2-3x, though rare, but also people aren’t supposed to get shingles until they’re over 60…and I’m 35. So.

Anyway…

I meant to write about what my days are like, because I keep beating myself up for not doing enough. And also, I’m not really sure that I’m actually able to do much. At least, I don’t think I’m able to do much consistently.


 

So, most days, I wake up around 9:30 a.m. for my morning pills. On a *really* good day, I’m awake before then. On a *good* day, I’m awake with little to no struggle at 9:30, and one of my partners has made me either a small bowl of cereal or some scrambled eggs and apple juice, and I have little to no morning nausea and little to no pain. Sometimes I make breakfast myself, and these are really good days, too.

I eat and take my morning pills. I stretch and try to move out of bed for at least half an hour–to the bathroom, to the kitchen, to the living room or study or just another room, period. Sometimes I make it, sometimes I don’t.

On a *neutral* day, I struggle to wake up. Sometimes someone has made me breakfast, sometimes I ask someone, sometimes I make it myself. This makes the day a little better. I still do the checks for pain and nausea, and usually if I’m struggling awake, these are a little worse. I’m more likely to have more pain, though sometimes nausea just likes to show up. And I still try to move around after I eat and take my pills.

On a *bad* day, I struggle to wake up, and sometimes I don’t manage to wake up until 10 or 10:30 a.m. I usually try to call for someone to help me in this case, and usually, I have a lot of pain and/or nausea. If there’s no one to help me, I slowly make it to the kitchen for food and water, and I usually don’t get my pills in me until about 11:30 a.m. And I usually stay in bed, because the pain is really difficult to manage, and/or there’s dizziness associated with moving around, and/or I’m super-tired as well–whether I got enough sleep or not.

((Note: this is already exhausting to write about, because there are so many different types of day to write about, and I’ve only written about the morning, and I don’t do a lot with my days.))

After breakfast, on the really good/good days, if I have a plan to go out, I will do so. It will take me a little bit to get ready, because I still move slowly, but I will make it anyway. It’s a lot easier now than it used to be, because I’m living on the ground floor. Before, just the idea of the stairs–both up and down–was so daunting that it would exhausting me a little to think of them. But now I can go in and out the sliding door, and I don’t have to worry about the slippery patch in the entry way at the foot of the stairs, nor navigating the steepness and the railings and the trapped heat and the echo-y noise…..

Anyway, if I don’t have a plan to go out on a really good/good day, I will occupy myself: housework, organizing, drawing, reading, etc. Occasionally I get really enterprising and try to find a job I think I could manage, though that quickly gets depressing. I have options out on Fiverr and Moonlighting, but no one is biting on either. I am doing some side work for a friend, but it is not enough to make a dent in our bills. Still, every little bit helps!  So, I work on my virtual marketplace, do the work for my friend, and so on. And I organize our group for protests in our area currently (because the Stockley protests are happening now).

On a neutral day, I’ll usually try to do those types of things, too. I’m more reluctant to stay out of bed, though, and I might take a nap if tiredness is winning. But I try to stay awake and keep myself going through the day. I am less likely to job-hunt or organize around the house, but I will try to do at least one housework thing and, if there’s a protest thing to organize, I will try to stay on top of that–mostly because I know if I don’t do it, no one else will in our group. And I know that if my white self shows up, I bring at least 2, and up to 4, other white people with me. If my white self doesn’t show up, none of them will go. And that’s just…it’s a lot of responsibility, which is a little unfair on me. I do wish that, because I deal with so much pain and nausea, they would at least take turns with me–or be more willing to go when I cannot. But, this is what it is right now.

On a bad day, I am pretty likely to stay in bed and take a nap. Depending on how bad things are, ‘nap’ might be a stretch for the sleeping that happens. I sometimes just need to be covered in blankets for pressure and heat, even though I love to be cold, because my joints ache so badly. And my migraines often cannot be quelled by anything other than sleep and time.

On a really good or good day, I will get decent sleep and probably be able to fall asleep somewhat easily at night–although this isn’t always the case. Sometimes I’m so happy from having a good day that I want to keep going or I’m just excited about it, and that makes falling asleep a little difficult.

On a neutral day, sleeping is difficult. My brain just doesn’t want to shut down, and sometimes I can quiet it to fall asleep and other times I can’t.

On a bad day, sleeping is nearly impossible when I actually want to be sleeping. My brain weasels just will not let me sleep. Every time I drift off, something jumps or jolts me awake–a sound, a movement, a flash of a memory through my brain. And sometimes this ‘bad’ combines with the rest of the bad, and sometimes not. Sometimes it combines with the neutral or the good–especially if I’ve gone out somewhere, and then come home from seeing someone.

Hanging out with people is a special kind of torture for me, because I love people. I miss hanging out with people, and I want to see them and know how they are doing. And also, I torture myself over ever single thing I say and do when I see people I don’t normally see. I do it some with the people I do see on a day-to-day basis, but I know I can ask them about it and they will help me understand or lay my fears to rest. But those I don’t see regularly–it’s a little bit different. So, sometimes, even though it’s a ‘good’ day, it’s a ‘bad’ night because my brain is just so difficult with me. And then I go into a weird good/bad day the next day, and so on.


 

So, this is basically what things are like for me. It’s not a perfect run-down, because sometimes I’m having a good day and then a migraine strikes out of the blue, or my knee pops out, or something–but it’s a close approximation. I try to remember to eat food and drink water throughout my days. And take my pills. And when I hurt a lot in specific places, I use patches or heating pads, or ask for massage from my partners. And I mostly feel very exhausted and in pain of varying levels.

 

Everything is gray

And I’m getting that broken glass under my skin feeling again.

Normally I would try to talk with my wife about this, but I feel like I can’t, because she needs to heal, and this is so early for her.

And Scott has so much on him.

God damn the person who hurt my wife.  Who hurt us all, but my wife is the center.

Feeling isolation urges, trying to fight them, but also right now basic care is hard.