- I’m not sleeping again. The past week it’s been pretty bad. I just don’t feel like there’s any point in trying to fix it. I’m used to sleep deprivation by now, and I can deal with it. I’d rather just deal with it than go back on meds that leave me foggy all day long.
- Don’t pick a chauvinist fight with me on the internet at 2:00 am. I get pretty punchy. And if you’re dumb enough to provoke a fight by being a sexist asshole, then don’t think you’re going to win by insulting me and trying to shut me up. It’s not going to work, and you’ll look like an idiot because I can dance rhetorical circles around you. And I will laugh about it the whole fucking time. Especially at your pathetic insults and attempts at intimidation. I work in politics, and I talk to people much, much scarier than you, Princess Poop-for-Brains. You’re gonna have to really step it up if you want to scare me.
- I went to a meet & greet with our Lieutenant Governor candidate and several state senators and representatives. I went with a friend who lives in the same ward as I do, and the city councilor from our ward was there. He came over and said hi, and he said, “You’re the only normal people here.” Um, thanks? I don’t often get called normal. Ten minutes later he called me a unicorn, after I said I was one of those rare voters who is persuaded by facts and hard data rather than abstractions and fuzzy-wuzzy feelings about a candidate. (We’ll leave my huge Platonic crush on Joe Biden out of this.) So apparently I’m a normal unicorn.
- My gastroenterologist’s office called and said my labs all came back normal. Uh, then why can I still not stand up for more than two minutes? I just want a definitive answer about what the hell is going on with my body. Even if it can’t be treated, even if it’s going to get worse, I want to know. If I know what’s going on and what I can expect in the future, then I can accept it. But how can you accept something when you don’t know what it even is? How can I make plans and learn how to deal with it if I don’t know what’s happening? It’s just so frustrating.
- My new case manager is somewhat better than the last one, but she never asks how I’m feeling or how I’m coping. I can’t find it in me to bring up on my own how much I’m struggling, and I can’t ask for more help on my own. But if she would just ask, then I could tell her. But she doesn’t, so I can’t. I hate how powerless that makes me sound. Hell, I hate how powerless it makes me feel. But for now, that’s the reality of the situation.
I never imagined at $55,000 a year, I’d have trouble making ends meet. And my wife brings in another 25. My son’s in public school. It’s no good. I mean, there’s 37 kids in the class, uh, no art and music, no advanced placement classes. Other kids, their mother has to make them practice the piano. You can’t pull my son away from the piano. He needs teachers. I spend half the day thinking about what happens if I slip and fall down on my own front porch, you know? It should be hard. I like that it’s hard. Putting your daughter through college, that’s-that’s a man’s job. A man’s accomplishment. But it should be a little easier. Just a little easier. ‘Cause in that difference is… everything.
–The West Wing, “20 Hours in America”
Tonight/last night (it gets fuzzy; I’m not sleeping again) was good. We had a Get Out the Vote (GOTV) summit for the coordinated campaign, and I finally feel like I’m back in the loop again. It turns out that I was right–I basically got lost in the shuffle when things got rearranged for the coordinated campaign. The field organizer I’d been working with got shifted out toward central Mass, and they pulled the field organizer from that part of central mass out here to western Mass. (Don’t ask what the logic is there. I have no idea. Welcome to campaign life.) But we have a dry run this weekend, and I’m all signed up for that.
Plus, I snagged some rally signs for my Halloween costume. I’m going to be a yard sign, and on my back it’s going to say, “I’m a yard sign. I can’t vote, so go knock some doors.” I haaaaate yard signs, and the old guard organizers in my area are obsessed with them. They started in on it tonight, and I wanted to stand up in a chair and yell, “LET ME TELL YOU A THING. Yard signs do not work in anything bigger than small-town school board elections. I don’t care that you think they work because I can cite four peer-reviewed studies that say you’re just WRONG, so please, for the love of the old gods and the new, can we SHUT UP about yard signs?” I didn’t, of course. I just covered my mouth and laughed silently until they shut up. And then some guy started in on, “When I was in Bangkok, they advertised on the ice cream trucks that would drive around all the neighborhoods.” At that point I had to excuse myself to the bathroom because ARE YOU FUCKING SERIOUS I CAN’T EVEN. Just because you’ve been working on campaigns for the last 60 years doesn’t mean you actually know what you’re doing. The demographics have shifted, the technology has shifted, and we have lots of studies proving that the things we’re asking you to do work and the things you want us to let you do don’t work.
Political organizing has taught me many things, but patience is probably not one of them. I mean, I can tolerate it, but not especially well. And at some point, something snarky would slip out of my mouth because sometimes I just can’t contain it. Like, “Hey, this is not Bangkok in 1955,” or “If you mention yard signs one more time, I will impale you on one and you can be the yard sign.” This is also why I’d never get elected to public office. Remember Joe Biden in the 2012 Veep Debate? Multiply that by ten and add a bunch of words they’d have to bleep out, and that would be me. I’d probably be all composed and smart for half of it, and then my opponent would say something really provocative, and I’d slip. It would be hilarious, but it would make me unelectable.
(I swear I’m not actually a serial killer or anything. I wouldn’t actually impale anyone. I just get really sick of people who have no idea what they’re talking about hijacking meetings run by people who do know what they’re talking about.)
Anyway, it was cool because somebody I’d worked with on the Obama campaign in 2012 showed up. She was our neighborhood team leader, and she became a bit of a surrogate mother figure to me. We’ve been in touch sporadically–she now runs a pro-choice group–but our paths haven’t crossed in months. It was really cool to catch up with her. And she invited me to a meet and greet tomorrow night. It’s our lieutenant governor candidate, our state senator and representative, and some other state senators and reps. I’ve met most of them before, at least the ones from my district, but meet and greets are always kind of fun. But the location is this diner where nobody under 70 goes ordinarily, and they play Fox News. Interesting choice of venue for a Democratic party event. *shrugs*
Then, because I was feeling pretty good, I decided I was going to go online and apply to the state university near me to go back and finish my undergrad degree. They use a common application, so I went to that site and started doing it. First of all, they want a $75 application fee. I can’t even pay to heat my house, and that’s almost two weeks’ worth of food. You can apply for a fee waiver–but your high school guidance counselor has to verify your financial need for a waiver. I graduated in 2004, for fuck’s sake. I don’t have a high school guidance counselor.
Then they want your parents’ entire life history. Well, okay, their educational history. Which meant I had to Google my father’s resume. The father who sexually abused, raped, and tortured me for 16 years. The father who was a cop. The father who’s now the chair of the criminal justice department at a Midwestern college. I thought I was going to die from a heart attack–I don’t even want to know how high my heart rate jumped up–but I managed that.
But the final straw was standardized test scores. You can’t submit the application without test scores, but you can only enter test scores going back to 2009. I took the SAT and ACT in 2003. I remember what my scores were, but I don’t have the proof anymore. And it won’t let me enter them because the dates are invalid. Oh, and you can’t submit it without contact info for your high school guidance counselor, which, as previously mentioned, I don’t have.
The whole thing is clearly meant for high school kids. I know I cannot possibly be the only nontraditional student trying to apply to college, but they’ve made the application literally impossible. I probably shouldn’t have even bothered trying–I’ve been in such a bad place, and I know my sanity is very fragile right now. But I tried because I’m an idiot, and now I feel totally hopeless. I feel like the whole world wants me to fail, like they don’t want me to be able to get a degree so I can never get a job that will let me escape poverty. I feel like they want me to kill myself because I’m a worthless burden on society. I know that’s crazy, bordering on paranoid, and yet…I can’t convince myself out of believing it.
I hate my brain. I really, really hate it.
I don’t expect things to be easy. Like the quote at the top, I think things should be hard. But not like this. My life right now is too hard. It’s impossible for me to succeed. It’s the Kobayashi Maru, only it’s not a simulation and it doesn’t end once I accept that I can’t fix the impossible situation. Making my life work should be hard, but it should be just a little easier. But I don’t have the advantage of running into any White House staffers in a bar who can craft policy inspired by my difficulties. I barely have a voice, and nobody who has power to change things really notices me, not enough to see how hard things are.
I don’t know if I’m being hypersensitive or if my roommate is being a passive-aggressive asshole. Or possibly some of both.
I know I tend to be overly sensitive, especially with people who’ve triggered my PTSD. Once I’m in that state of heightened alert, everything seems like a potential threat. I know I’ve been wound up more than usual since her screaming-on-the-phone-and-banging-around-for-hours thing a few days ago. My anxiety’s been through the roof, and my depression has been worse than usual.
Then this morning I get this text: “Not to be a pain or anything cuz I’m sure your [sic] busy knitting or something but my older sister is stopping by tomorrow night for dinner so I’d appreciate it if there was some type of usable communal space on the counters or living area so that I can be able to cook and quite frankly I’m not going to make her eat in my bedroom.”
I’ll ignore the blatant abuse of the English language here, but this whole thing comes off as really snide to me.
For starters, half the crap on the counters is hers. Yeah, I had some empty boxes and stuff, but that took all of about 30 seconds to get rid of. I’ll wash the dishes I left out. No big deal. Meanwhile, has she cleaned up any of her stuff off the counter? NOPE. Has she even taken the trash or recycling out a single time? NOPE.
I told her from the get-go that I’m disabled and can’t always do a lot around the house. I never made that any kind of secret. In the three weeks she’s been living here, I’ve had three doctors’ appointments and an ER visit, so it’s not like she doesn’t know I’ve been sick. The fatigue has been really bad the last few days, and I’ve barely managed to make it from my bed to the bathroom without passing out. Doing anything more than that has been virtually impossible. Still, I cleaned the bathroom last night, on my hands and knees, because it was gross, and I didn’t want her to have to live with it.
This morning, I tried to clean up more, but I had to sit my butt down on the kitchen floor because I was about to pass out. And if you’ve ever tried to sweep or mop while using a cane, you’ll know that’s pretty much impossible. So if she wants to floor clean, she can damn well do it herself. As far as I can tell, she’s done no cleaning since she moved here. Ordinarily, that’s not a huge deal to me as long as things don’t get gross. But then she wants to act like it’s all me?
(Yes, I think I am going to illustrate this whole post with Joe Biden gifs because of reasons.)
But I think what really got me was the line, “I’m sure you’re busy knitting or something.” I don’t know how to read that as anything but bitchy and passive-aggressive.
Again, this is a case of, “You knew from the get-go that I’m disabled.” I never hid that.
Most of me wants to jump in with, “Nah, bitch, I’m organizing a third of the state for a fucking election in two weeks, much of which, yes, I do from home. But that doesn’t mean it’s not fucking real or important.”
But the truth is I haven’t been doing much organizing the last couple weeks because I’ve been too sick and fatigued. And you know what? That’s fucking okay. I don’t have to justify my goddamn existence with what I do. I get that she has a regular nine-to-five job, and I don’t. But that doesn’t make me any less of a person. It doesn’t make me any less worthy of respect or compassion. Just because I don’t get a paycheck the same way she does doesn’t mean that what I do isn’t also important.
(I do have Biden gifs that aren’t from the 2012 VP debate, but that debate was just so glorious.)
But I have Chronic Nice Girl Syndrome, so I’ll go clean the whole kitchen and living room, do all the dishes, and pretend like none of this bothers me. I’m so afraid of conflict that I’ll literally sacrifice my health to make Roommate happy.
But after this, I’m done. She’s done no housework, so I’m not going to either. Eventually she’ll get the point, or so I hope. Just because she has a regular job and I don’t, that doesn’t make me automatically responsible for all the cleaning for an apartment we use equally. If she’s not going to do any work, then I’m sure as hell not going to either, especially since it takes much more of a physical toll on me than it does on her.
When I started this blog, I chose the name Hope. I think I was mostly just trying to convince myself of something I didn’t feel, and it hasn’t worked. I rarely feel hope, and I definitely don’t feel like Hope.
So I changed my display name to “nobody.” It’s how I feel about myself: like I barely exist, that I don’t really matter, and that my disappearance wouldn’t make much of a difference to the world.
Several people have pointed out that calling myself nobody is not very kind to myself, and it just reinforces the negative things I already feel about myself. They’re right, of course.
But there’s no other name that feels like it fits me. I have so many names. My real, legal name, none of it belongs to me. My first name is my maternal grandmother’s, my middle name is my paternal grandmother’s, and my last name is my father’s. None of them are truly mine. Different parts have their own names, but none of them are mine or ours, collectively.
In many spiritual traditions, a person takes a new name when their life changes or when they’re in need of healing. I think I fit both of those criteria. Traditionally, a religious leader or community gives the person their new name, and it reflects something that’s either already characteristic of them or something they can aspire to. I don’t really have a community in real life; the blog world is the closest thing I have.
So I’m looking for suggestions. I’m looking for a name.
(It’s very hard for me to ask for this, and I don’t know exactly why. I think mostly I feel like I don’t even deserve a name.)
I’d thought I was doing really well handling my PTSD symptoms. Turns out I’m only actually good at handling them when there are no triggers.
All morning, my roommate has been yelling at her parents on the phone, banging around the apartment, slamming doors. These are major triggers for me. These were the things that came right before my mother’s rages. Then there would be hours of her screaming at me, telling me I was a terrible person, telling me I was ruining her life. Sometimes she’d hit me. Sometimes she’d throw things at me. Often, she’d threaten suicide and blame me for it. Then she’d disappear–sometimes for hours, sometimes for days. I would be left alone with my sisters, and I never knew if she was coming back or if she’d actually kill herself this time. I’d do the best I could to take care of my sisters–we ate a lot of cereal, sandwiches, and macaroni and cheese because those were the only things I could cook. I made sure we all got on the bus on time in clean clothes. I didn’t know exactly what would happen if any grown-ups found out my mother kept disappearing, but I knew it wouldn’t be good. I hid it all, but I was a child. Children aren’t really very good at hiding things, but no one noticed because they didn’t want to notice. When I was ten and my depression got so bad I couldn’t function in school, when I tried to kill myself the first time (albeit very ineptly), no one ever investigated why such a young child was so severely depressed. No one investigated what was going on in my life, and I couldn’t tell.
I was left completely alone with a situation too huge for me to deal with, but I didn’t have any choice. I didn’t have any way out.
And that’s how I feel now, even though I know it’s old trauma stuff. My roommate is not actually going to hurt me, and even if she tried, I know how to take care of myself. But my heart is racing, and I can’t stop shaking. Every noise makes me jump. I have my earbuds in with music on, but that only helps a little. It becomes overstimulating–sound is the worst for me, for some reason–but that’s better than listening to my roommate. I’ve done all the grounding stuff, and I’m not dissociating–but I don’t feel safe. I really need to get something to eat, but I can’t leave my bedroom. I can’t deal with seeing her or talking to her.
I really, really wish I could afford to live alone. I do so much better that way. Living with people is triggering, even if they’re people I’m comfortable with. I just never feel entirely safe when there’s someone else in my space. Roommate is nice enough, but it turns out she’s kind of immature and a drama queen. From what I can gather, she’s having some kind of dental problem, and she’s upset because her parents didn’t call her or come take care of her. I mean, she’s almost 30. I try not to be judgmental of people’s distress, but when her distress is so out of control that it causes me distress, I lose tolerance. I mean, I nearly died when I first got sick with UC, and there was literally no one there for me. I was 500 miles away from home and 600 miles away from my family, and my family wouldn’t have been terribly concerned even if I’d been right next door. My mother didn’t take care of me when I was sick as a child, let alone as an adult. It sucks, yes. It hurts when our parents don’t take care of us the way we need them to. But you grow up and deal with it as best you can. You don’t spend hours screaming about it. You acknowledge that it sucks, but then you take care of yourself as best you can.
I hope this screaming and crap doesn’t become a long-term issue with Roommate. I really cannot deal with that, at all. Somebody just buy me my own place so I never have to live with anyone again. Those tiny houses are pretty cool; I could go for one of them. Just as long as it’s mine.
A friend of mine posted a Cosmopolitan article on her Facebook page. It’s about measures of health other than weight.weight loss/BMI. On the surface, that sounds promising. God knows I’d love to see an end to weight shaming and the rhetoric of fat=unhealthy/skinny=healthy.
But when I clicked through, I was sorely disappointed. Cosmopolitan seems to have traded in weight-shaming for ableism.
To be fair, the article is titled “Signs You’re Healthy,” and I’m not exactly healthy. But the article uses the word “healthy” as a moniker for “acceptable” and “good enough.” It subtly shames people who aren’t doing the things listed, the implication being that we’re not trying hard enough to be healthy, which is apparently something we owe to society. God forbid we should become useless, disabled burdens on society.
Let’s look at Cosmo’s signs of “health,” shall we?
1. You eat more whole foods than processed foods.
Is diet-shaming really that much different than weight-shaming, really? It still promotes the idea that certain foods are good or bad, and since you are what you eat, you’re bad if you eat bad food.
My UC has severely limited my diet. I can’t eat anything containing dairy, gluten, or corn in any form. I have to severely limit my fiber intake. This means very few fresh fruits and vegetables. It means more processed grains, like white bread and pasta. My disease also causes severe fatigue, so cooking is usually not something I’m capable of. I basically live off of one brand of frozen meals that are free from all the foods that make me sick. If I followed the diet generally recommended as healthy, I would be in a constant UC flare, which could literally become life-threatening to me.
I’m far from the only one for whom the stereotypical healthy diet advice doesn’t work. Diet is highly individual, and you can’t reliably judge someone’s level of health by snooping through their grocery cart. I already get intrusive comments from grocery store clerks and baggers, so I don’t need any more diet-shaming from Cosmopolitan.
4. You move your body and call it exercise.
At this point, when I move my body, I just hope it supports me. When I move my body, I pray it won’t collapse in the middle of the grocery store. I beg my shaking muscles to hold me up for just a little longer. I wish my aching joints would stop grinding bone against bone when I move. I hope that I can make it from the bed to the bathroom without losing consciousness. I hope that I will not lose control of my bowels and crap my pants again.
Two years ago, before I got sick, I exercised vigorously. I ran about three miles four or five days a week, I practiced martial arts three days a week, and I walked almost everywhere I went. According to this, I was very healthy–and yet I still got life-threateningly ill. My immune system turned against me, and I nearly died. Now my illness has taken away my ability to exercise, but that’s not because I made unhealthy choices.
6. You have some sort of connection to your community.
Boy, that would be nice, wouldn’t it? I used to. I used to connect with people through my martial arts school and political volunteer work. But when I lost the ability to stand and walk reliably, I lost all of that. No one stuck around; our society doesn’t teach us how to relate to and support people who are sick with no hope of getting better, so instead people just disappear from our lives. Illness and disability isolate us
8. You can physically accomplish the things that are important to you.
Well, I guess I should just give up now, then. I can’t stand for more than a few minutes, even with a cane. Most days even taking a shower is more than I can manage. Cooking is out of the question. My muscles give out and leave me collapsed on the floor when I’m trying to grocery shop. I see my doctors more often than I see my friends. I have to make compromises every day because, while there are many things that are important to me, I have the energy to accomplish very few of them. It’s a good day if I can get through all the things I need to do to take care of my basic physical needs. Anything beyond that is a bonus.
9. You can manage your day-to-day life — or feel like you have the kind of help you need to get by.
So if I can’t manage some aspects of day-to-day life and the help I need isn’t available to me, is that my fault? That is not an unhealthy choice, Cosmo. That’s the reality of circumstances. Because I’m chronically ill and disabled, I’m poor: people with disabilities are three to four times more likely to live in poverty, and the programs in place to address poverty are woefully inadequate. Most poverty programs don’t take into consideration the special needs of people with disabilities. Other community programs don’t either: for example, my town has made the bus system mostly inaccessible to me because most stops don’t have benches for me to sit down while I wait, and they eliminated the stop near my house. I’m not physically capable of walking the mile to the next stop. There’s no service to provide rides to the grocery store or the doctor’s office. There’s no service to have someone come in and cook meals for me so I have healthy food when I’m too sick to cook for myself. Even therapy to help me deal with the depression and hopelessness that come from all of this is inaccessible to me. That’s not my fault. I’ve learned that I cannot demand my body do more than it’s capable of or I will get even sicker. I cannot push my body beyond its limits to try to access services that won’t adequately meet my needs anyway. Ultimately, Cosmo, that is a healthy choice, if not the most ideal one.
10. You can find a way to feel awesome about how you spend your days.
I try, I really do. But let’s set aside all the inspiration porn about people with disabilities: being disabled is frustrating, isolating, and depressing. Positive thinking has its place, but there are some things it’s impossible to reframe to make me feel awesome. When I wake up and find myself and my bed covered in poop because once again, I’ve leaked during the night, that’s not awesome. When I spend all day in the ER because I’m in severe pain and one of my five hundred doctors thinks I might have a bowel obstruction, that’s not awesome. When the meds I have to take to keep myself alive make my bone marrow stop producing red and white blood cells, that’s not awesome. When I collapse in a parking lot because my muscles have just stopped working, that’s not awesome. When I try to make my life meaningful by doing volunteer work, but the people I work with give up on me and forget about me because accommodating my disability is too much of a hassle, that’s not awesome. When poverty and inaccessible public transit leave me effectively housebound and isolated, that’s not awesome.
I would love to feel awesome about how I spend my days, but honestly, I spend most days in bed and in the bathroom. Occasionally days are spent in doctors’ offices or the ER. There are certain advantages to a life spent in bed: my bed is really comfy, and I’m an expert at cheat codes for The Sims 3. I have connected with some amazing, supportive people through my blog, and I value that. But mostly, the way I spend my days is boring and lonely and depressing. Add to that that a lot of society is committed to rhetoric that characterizes me as a worthless drain on society. Then consider that the government, in its failure to sufficiently fund anti-poverty programs, is basically telling me that I don’t deserve to be able to meet basic needs like shelter, food, heating, and medical care. For disabled people, society’s message is that you either have to be an inspiring super-achiever (think Oscar Pistorius or Stephen Hawking), or you’re a totally useless burden on society. It’s pretty impossible to feel awesome about myself and what I do all day when I’m inundated by those messages.
So here’s a radical idea: let’s stop teaching people that their value as humans depends on their health, or whatever markers of it society is currently obsessed with. Let’s stop implying that people are only unhealthy because they choose to be and that bad health is a moral failure. Instead, let’s teach ourselves that we don’t have to earn the right to exist. Let’s teach each other that we’re already good enough. Let’s create a society that includes people with disabilities instead of shutting us out of our communities. Let’s change our perspectives so that we can see and value the contributions all of us make to the world. Let’s start valuing people as they are, not as we want them (or ourselves) to be.
Today my psychiatrist told me I’m too sick not to eat meat on ethical grounds.
He’s a functional medicine guy, and I trust him about this stuff. I’ve actually been thinking the same thing myself for the last few months, particularly with the anemia and the severe fatigue/weakness. But I just can’t quite stomach the idea of eating meat again.
I’ve been vegetarian for more than ten years now. For me, it’s an ethical and environmental issue, but even before I went vegetarian, I was never all that excited about meat. It was never hard for me to give it up, and I’ve never missed it. Now, the thought of intentionally putting meat in my mouth makes me feel queasy. He wants me to start with bone broth, and that will be easier, I think–it should be easier because it’s not actual physical meat. But I still have to buy bones and roast them and boil them. Even that’s going to be hard for me.
My psychiatrist loves to tell illustrative stories. The first one today was about a Russian Jewish soldier who was stationed in Siberia. He wrote a letter to his rabbi to ask what he should eat because all they had was pork. The rabbi’s answer was, “Eat the pork, but don’t suck on the bones.”
“The moral,” my psychiatrist said, “is you don’t have to enjoy it, but survival’s more important than doctrine. We understand that.” (I assume by the “we,” he was referring to himself as Jewish, but I got the odd impression that he might’ve thought I am too. Not sure where he would get that from–I don’t think I’ve ever mentioned my own religious practices to him. But whatever.)
Then he launched into a story about a former Karmapa (leader of a specific sect of Tibetan Buddhism). Many Buddhists are vegetarian, but in Tibet that’s basically impossible. So the Karmapa was traveling, and someone served him shrimp. After dinner, they asked how he liked it. He replied that he enjoyed the taste, but he was sad that so many living creatures had to die to make one meal He said he preferred beef because one cow can feed a hundred people, so there’s less destruction of life. “If I must eat meat,” he said, “I prefer beef.”
It was a strange conversation; my conversations with my psychiatrist usually are, but I like that. But today, I had so much ambivalence it felt like I was being dragged in two different directions. Not so much about food–about survival. I don’t really want to survive…but on the other hand, since I’m still alive, I’d like to be slightly less miserable if possible. So I bounce back and forth between feeling like it doesn’t matter since I’m going to be dead soon anyway and feeling like I might as well try because what else have I got to lose at this point?
So I’m just sitting in the middle, waiting. I don’t even know what I’m waiting for.
Lately, I’ve been in a weird noncommunicative place. Either I’m posting explosive blog rants because I can’t contain myself, or I’m dead silent because I don’t have anything to say that’s more important than silence.
I don’t really know how I am. I feel like I’m just existing for no reason, so the moment something big goes wrong, I’ll want to kill myself again. It’ll be money stuff–it’s always money stuff. I can’t afford to pay my bills and I don’t know what I’m going to do and when I think about it I start to panic.
I have an appointment with my psychiatrist in the morning, and I don’t want to go. I like the guy, I do. He’s into functional medicine, and he doesn’t get caught up in all the mainstream psychiatry bullshit. But he’s just going to want to run a bunch of tests I can’t afford and then tell me to take a bunch of supplements I can’t afford. So it’s just…what’s the point, you know?
But that’s kind of how I feel about everything. What’s the point of any of it? I know everything’s going to blow up in my face, and I’ll try to kill myself again, hopefully successfully. So why even bother–why not just do it now? I think the only reason I don’t is I’m not motivated enough at this point. When it’s freezing and I can’t pay for heat, then I’ll be motivated enough. It’s fucked up, I know. But it all feels inevitable.
Right now–not sure if I exist…or not. Real or not?
Can anyone even see me? Hear me? I think I have spoken, I think I have been heard, but then…nothing. Silence, absence, vacuum. If the phone doesn’t ring, it’s me. There’s a face in the mirror but it doesn’t look real. Inexplicable–of course it is real, but no, it’s not, or the person behind it isn’t real, I don’t know.
You’re not making any sense.
There are so many names but none of them are mine. None of them fit. The voices too. And there’s no air in my lungs. I keep breathing but it doesn’t help.
Do I exist?
You can’t ask that question because you can’t define your terms. Define “I.” All you know is what you are not, or what you think you are not. Creating negative space around something doesn’t create matter in the positive space. Now define “exist.” You don’t know that either.
What I know is something is wrong and I need it to stop but I don’t know how to make it stop. How can you stop something if you don’t even know if it’s real?
There may be be a day when I write a post that isn’t rage dressed up like sociopolitical commentary…
I think at this point rage and stubbornness may be the only things actually keeping my body going.
Disclaimer: I know a few people who know me outside this blog also read here, but this post is not about you. It’s not about any one person–more about an amalgamation of people or an archetype, something like that. So if you think this is about you, it’s not.
Okay, on to the rant.
I’m really sick of people with the privilege of economic security telling me I need to stop worrying about money. There are different varieties of it: God Will Provide, You Attract What You Put Out Into the Universe, We’re All Stressed Out About Money, If You Would Just, and It Can’t Really Be As Bad As All That. There are probably other variations, but these are the ones I keep running into.
God Will Provide
I’ve written a whole other rant about American religion and its relationship to poverty, complete with historical references from John Calvin to Calvin Coolidge. (Okay, I don’t think I actually mentioned either of them by name in that post, but c’mon, it’s great symmetry.) At best, this kind of response is a polite way of saying, “Don’t make me notice things that create cognitive dissonance with my belief system.” At worst, it’s victim-blaming: if God doesn’t provide for your needs, it must be because you’re a bad person/because he’s judging you/because you don’t believe the right way. I think most people fall into the first category–they don’t know how to respond to the reality of poverty, so they fall back on what’s most comfortable to them. Still, it’s dismissive, and it’s disrespectful to those who may not share your particular religious beliefs.
You Attract What You Put Out Into the Universe
Again, victim-blaming, which is probably the most common reaction to poverty. The reality is that positive thinking can’t fix everything. Meditating on my checking account balance will never actually make the numbers go up. If positive thinking makes you happier, makes your problems more manageable, awesome! I’m happy for you, truly. But there is no scientific evidence that positive thinking has lifted anyone out of poverty. And again, this is a spiritual belief that the poor person you’re talking to may not share.
We’re All Stressed Out About Finances
This is probably true of 99% of people, so no argument from me on the basic facts here. But the implication of this kind of statement is that all financial worries are created equal, and that simply is not true. Let me tell you a thing about a guy named Maslow. He came up with this hierarchy of needs that’s a well-known sociological model. The basic gist of it is that until you get your basic physical needs met, you can’t worry about anything else. Here’s a handy visual aid, mostly because oil pastels are a good conduit for my rage. (It’s a crappy photo. Sorry.)
Basically, if you can’t reliably meet needs like food, shelter, and bodily safety, nothing else matters. You can live without the top third of the pyramid. It may not be happy or fun, but it’s safe and secure. It doesn’t mean the higher needs aren’t real or valid or important, though. What it means is that when I’m trying to build the foundation of my pyramid, it’s hard for me to empathize with your struggle to meet needs higher on the pyramid. I get that you want to have another baby, but you and your partner want to buy a house instead of renting so your kids have a yard and you don’t have to keep paying rent. I get that it’s stressful to figure out all of that. But your need is not the same as my need to have reliable housing so I’m not homeless in the middle of a New England winter. When you put them on the same level, you’re dismissing the fact that my need is a matter or life and death. Your need is still real and valid and important, and your worry about not being able to meet it is still real and valid and important. But it is not the same as my need and my worry.
If You Would Just…
This one may be the one that makes me craziest, probably because it’s the one I encounter the most. Occasionally, it’s thinly veiled judgment: “Well, you wouldn’t be poor if you didn’t spend your money on that iPhone” or “Stop shopping at Whole Foods all the time and you’ll have more money.” Those ones are pretty easy to spot–there’s that signature body language and tone of voice we all recognize.
But usually I think it comes from a place of wanting to help. I think most people genuinely want other people to be happy. It’s hard to see someone suffer and acknowledge that we can’t fix it, so to soothe our own feelings of helplessness, we jump in with lots of helpful suggestions. “Apply for food stamps,” “Get on the waiting list for section 8,” “Have you looked at the food bank?” and so on. It’s nice that you want to help. Thank you for that. But please, stop before you start.
Offering unsolicited advice assumes incompetence. I’m a smart, resourceful person. Most poor people are incredibly resourceful–it’s how we survive. We probably already know about the resources available to us, and you’re probably the fifth person to suggest the same things to us this week. I try to be gracious about it, but it gets increasingly frustrating and I eventually want to stand on a chair and yell, “I am not stupid! If there were an obvious answer, I would’ve found it by now!” Generally, when I’m talking to someone in a peer capacity (i.e., I have not come into your office with questions about specific resources), I don’t want you to try to fix it for me. I just want you to listen and hear me and be present with me in what I’m struggling with. It can be hard at first to circumvent the hardwired imperative to fix people, but I’ve found that once I learned how to just sit with someone, it actually became easier for me emotionally, and it allowed me to connect with the other person much more deeply.
It Can’t Really Be That Bad
I don’t actually have that much to say about that beyond a resounding FUCK YOU. Of all the things I could say for attention, of all the things I could make up or exaggerate, why would I tell you something laced with so much personal and societal shame? If I want attention, I’ll tell you about the time I taught a college class the parts of the ear when I was three years old or the two times I’ve gotten to shake President Obama’s hand. If I want pity or I’m trying to make excuses, well, I don’t have to try very hard to find that. I have a disease that makes me shit myself because my entire large intestine turns into one giant, bleeding, excruciatingly painful ulcer. Most days I have to use a cane if I’m going to be vertical for more than 30 seconds at a time. It wouldn’t be hard to find sympathy if that’s what I were looking for.
But if I’m telling you about my experience of poverty, it’s not because I want pity or attention. It’s because I want you to understand. I want you to realize that even though I walk, talk, and look like a middle-class white girl, I’m not. I want you to realize that poverty has a lot of different faces, not just the guy at the corner asking for change. For some of us, poverty is less visible, better camouflaged. In many ways that’s an advantage–we get wider social acceptance, it’s easier for us to find jobs, we face less obvious prejudice and hatred and fear. But it also means that the few anti-poverty programs we have don’t always address our particular needs. It means politicians don’t talk about people like us when they try to address poverty. Nobody wants to be invisible, so when I tell you about my situation, it’s because I’m giving you the chance to see more of you than most people will. Please don’t make me regret that.