Tag Archives: disability

Existential Boredom

I’m not as intensely suicidal anymore, but I really just don’t see the point of being alive.

Since the election, I have nothing to do with my time.  Literally all I do is sit in bed all day and waste time on my computer.  There is no point to my existence.

Nothing holds my attention.  I try to knit, to watch Netflix, to read, to write.  Nothing interests me.  I force myself to do it, but that doesn’t work for very long, and there are so many hours to fill.

And I hurt.  I don’t know what it is with the roving joint pains–one joint will hurt badly for weeks or sometimes months, and then for no reason that pain will stop.  Soon it starts back up in a different joint.  Right now it’s my left wrist again.  I have a brace from when I sprained my wrist doing kung fu, and it helps some…but it makes it hard to type or knit.  And my belly hurts.  I think I might be heading into another UC flare, which is awesome, especially since I might have to come off the 6-MP soon.  I’ve spent the last two weeks telling myself it was just PMS-related mini-flare symptoms, but since my period hasn’t happened, I don’t think I can blame PMS.  Oh, and it’s IBD Awareness Week, so clearly my body has impeccable timing and a fucked-up sense of humor.

I barely have an appetite, either.  I mean, I get hungry, but I don’t eat for hours because I just don’t care enough to get food.  C made me a gluten-free vegan cheesecake a week ago.  Ordinarily I’d have eaten the whole thing in about two days (no judging), but I’ve still got some left over.  I’ve got a big container of Thanksgiving leftovers, too.  They’re good, but I haven’t touched them.  Oh, and there’s also lentil soup C made.  It’s not even that I’m too tired/weak to prepare anything–literally all I’d have to do was take them out of the refrigerator and microwave them.  But I just don’t care enough.

I’d fooled myself into thinking the weakness was getting at least a little better, but it turns out I only thought it was better because I didn’t do anything beyond sitting in bed and getting up to use the bathroom.  Yesterday I cleaned my microwave.  It took all of five minutes, and that’s a generous estimate.  But then I couldn’t stand up, collapsed on the kitchen floor, and had to crawl back to my bed.  How am I supposed to have ANY quality of life when I can’t even stand for five minutes?  I’m terrified that whatever’s going on is getting worse.  I still haven’t had any luck reaching my gastroenterologist for a referral to a neurologist.  I might ask C to see if my ex-nurse, S, can make some calls.  Often medical professionals get a much better response than patients–sad but true.

I’m just so tired of existing like this.  There’s no light.  I don’t feel an immediate need to kill myself, but I can’t just keep living like this, either.  I want to feel like there’s some meaning, but I can’t see anything in this fog.

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I’m Still Here

For now, at least.  I’m just tired of talking.  It doesn’t seem to get me anywhere; it just leaves me feeling more alone and hopeless.

Everyone wants to tell me I should live, and honestly, I just can’t take hearing it anymore.  That probably makes me an asshole, but I guess that doesn’t really matter anymore.  Maybe you’re seeing who I really am now, when I can’t keep up appearances anymore.  Maybe you’ll hate me.  Maybe it’ll make you understand why I can’t live.

I’m tired of people trying to fix me and solve my problems.  I’m pretty damn smart, okay?  And I’m pretty damn resourceful.  If there were resources to be found, solutions to be invented, I would’ve figured them out already.  I’m tired of being polite when people suggest the same things over and over.  Yes, I’m on disability and food stamps and Medicare and Medicaid, I’ve applied for energy assistance, I’m on the waiting list for housing, I’ve been to the food banks, I’ve tried the buses, I can’t afford paratransit.  I’ve tried forums and self-help books and support groups and CBT and DBT and EMDR and psychoanalysis and ECT and the Department of Mental Health and Community-Based Flexible Support.  I’ve been to respite, the ER, more psych units than I can count, two trauma units.  I’ve gone to church and prayed and mediated and done yoga and changed my diet.  I’ve been on antidepressants, anxiolytics, mood stabilizers, stimulants, and anti-psychotics.  I’ve taken 5-ASA’s and steroids and chemo and immunosuppressants and biologics.  I’ve consulted psychiatrists and chiropractors and reiki masters and neurosurgeons and physical therapists and acupuncturists and gastroenterologists.

Nothing helps enough to make my life survivable.

You can’t fix me because I’m too many problems to solve.  It’s depression and complex PTSD and DID.  It’s ulcerative colitis and hearing loss and brain surgery and mobility impairment.  It’s disability and isolation and poverty.

And you can’t solve just one because they’re just a big knotted mess.  You can’t untangle one thread from another; they’re all felted together now, and there’s no extricating them.  And nobody can fix the whole big mess.  Not even me.  I did everything I was supposed to do.  I tried so hard for so long, and things just get worse.  Now, I just can’t try anymore.

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I feel like the only way to make anyone in power notice how desperate I am and how much I need help is to die.

It won’t help me, of course; I’ll be dead.  But I keep thinking maybe it would be the tipping point so that The Powers That Be would have to notice what their lack of compassion and refusal to help is doing to poor people, disabled people, mentally ill people.  Maybe by dying, I’d finally make them notice and listen to me.  I obviously can’t accomplish anything while I’m alive, so maybe I can finally do something good by dying.  Maybe it’ll make someone listen.

But who am I kidding?  I’m not important enough for anyone in power to notice, let alone listen to.  When I die, I won’t even be a statistic.  I don’t even matter enough for that.

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Triggers

Sorry I’ve been absent.  I have been/still am really triggered, and I haven’t been able to read–blogs or anything else longer than a few sentences.  Still really struggling and not sure I’ll be able to write coherently.

See, Thursday we went to Boston for a post-election party.  I thought it was just going to be the party, an overnight at someone’s place in Boston, and then home.  Instead it turned into bar-hopping with the campaign staff.  If you’re thinking that sounds like fun, you’re wrong.  See, alcohol is a trigger for me because my father was often drunk when he abused me.  Between the UC and the meds, I can’t drink.  Well, everybody else is getting fucking wasted, and they just leave me sitting in a corner by myself for hours, not even talking to me.  I told my RFD that I’m not physically capable of running all around Boston, and it was raining to boot.  Usually he’s really considerate about my limitations, but that night, he really didn’t seem to give a shit.  Maybe it was the alcohol, or maybe it was just that it was his last night with the rest of the campaign staff.  Whatever it was, he basically treated me like I didn’t matter–I got dragged to four different bars, and predictably, I eventually fell on a slick sidewalk at 1:30 in the morning and couldn’t get up for several minutes.  Oh, and for most of the time we were bar-hopping, our 20-year-old intern was just left sitting in his car because she couldn’t get into the bars.  I wanted to go sit with her instead, but my RFD made me stay because his phone was dead, and he needed my GPS to find our way back to where the car was parked.

In the second bar, while I was sitting alone in the corner, the only sober person, this drunk businessman in a nice suit comes over and starts hitting on me.  Then he grabbed my breast, and I just froze.  I just sat there and let him.  I have extensive martial arts experience, and even though I’m not physically capable of as much as I used to be, I could’ve gotten away from him.  If nothing else, I could’ve hit him with my cane.  But I didn’t do any of that.  I didn’t say no, I didn’t say stop.  I just sat there and let him do it.

Now I really hate myself.  It’s just like with my father.  I mean, okay, when I was a kid, there wasn’t really anything I could do about it.  Even as I got a little older, he had me believing that he’d kill me if I fought or if I told anyone, and I didn’t have the reasoning skills to realize he wouldn’t have gotten away with that–he’s really just not smart enough.  So back then, I had an excuse.  But I let it go on when I was old enough that I knew he wouldn’t kill me and I really could’ve stopped him.  I mean, I was 19 the last time he raped me.  There’s no excuse for that.  I just let him.  If I’d fought or said no, he probably would’ve stopped, but I never did.  So that’s on me.

Now I just want to tear myself to shreds.  I want to cut my breasts off–I never wanted them anyway, and if I did that, no one would want to touch me.  I’m also really struggling with sexual self-harm urges.  It’s something I used to do but haven’t in a long time.  But I can’t stop the flashbacks and the body memories, and it would put me back in control.  I know how fucked-up that is, but sometimes it’s the only thing that works.  If I do something worse that any of them ever did to me, then what they did can’t hurt me anymore.

And on top of everything else, my roommate is being horrible.  I came home to a gross apartment–mold in my microwave, a half-empty beer on the kitchen counter, an unflushed toilet, and sopping wet washcloths and a giant hairball in the bathtub.  I just pulled the washcloths and hairball out of the tub and dumped them on the bathroom floor, and this morning, she pitched a hissy fit over it, stomping around and slamming doors and shit.  (Another big trigger, on top of all the other triggers.)  I’m sorry, but you’re fucking 29 years old, and I’m not your goddamned maid.  I pay rent too.  I don’t mind messiness–books and papers and stuff sitting around is not a big deal, but I don’t want fucking mildew growing in my bathroom or mold growing in my kitchen.  In general, I don’t want things growing in my living space.  (Although right now growing some pot for myself sounds pretty ideal.)  How fucking hard is it to dump out the rest of your beer or to hang up your fucking washcloths?  But EVERY FUCKING DAY when I go to take a shower, there they are.  I don’t leave my shit for you to clean up, and you have the goddamn nerve to pitch a fit when I move your messes somewhere obvious as a reminder that maybe you should, you know, be a fucking adult and clean them the fuck up?  Bitch, get on the NOPE train to Fuckthatville.

My landlady is away for the weekend, but I’m thinking about talking to her about this when she gets back.  I’m hesitant to do that on the one hand, because I feel like we’re both adults and should handle our own problems.  But on the other hand, I’m so triggered by her screaming and slamming doors and stomping around that I literally CAN’T deal with it like an adult because I dissociate and switch, either to a terrified child or a really aggressive teenager (hence all the swearing in the last few paragraphs), neither of which is good for dealing with a tense situation.  Plus, if I do want to kick her out, I’m going to have to go through my landlady because Roommate is on the lease now.  I’m not even sure I legally CAN kick her out.  I just know I can’t deal with much more of this.  I’ve been taking photos of the grossness when it happens as documentation, but I’m not sure what the laws are.  I just know I can’t live like this.  I spend a lot of my time afraid to come out of my room when she’s home because I will snap if she starts yelling or bitching at me.  I just have so much other shit to deal with that I really cannot deal with hers on top of everything else.

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Scattered Thoughts

  • 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.

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Hypersensitive?

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.

biden_cameralook

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?

biden_ryan_wtf

(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.

biden_no

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.

biden_factsmatter

(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.

biden_dealwithit

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Come On, Cosmopolitan

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.

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Check Your Privilege: Financial Stress Edition

There may be be a day when I write a post that isn’t rage dressed up like sociopolitical commentary…

butitisnotthisday

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.)

2014-10-09 00.03.30

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.

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Collapse

So today I collapsed in the Walmart parking lot and proceeded to have a sobbing meltdown.  Apparently I’m one of THOSE Walmart people now.

I understand why it happened: I’m finally just getting over the sinus infection, I’m still dealing with the gut problems, and now I’ve got my period on top of that.  I could barely stand long enough to get from the bed to the bathroom, but this was the day C could take me grocery shopping.  I thought I could push through it.

Apparently I can’t.

I told her just to take me home, even though I hadn’t done any of my grocery shopping.  She offered to go into Whole Foods and buy my groceries for me, but I said no.  I just wanted to go home…but also I couldn’t come to terms with not being able to do such a basic thing for myself.  I mean, C’s not going to be around forever.  She’s not even supposed to be seeing me at all anymore, but we just mutually don’t mention that.

And next week I get to hear my gastroenterologist blow off my fatigue and weakness because my labs look fine.  I really like him for most stuff, but I feel like he just isn’t taking this seriously.  I mean, at my last appointment, I told him I have trouble standing up for more than 60 seconds, and he told me to reduce my dosage of iron.  I know I’m probably reading too much into it, but I keep thinking he thinks I’m just being histrionic because I have a psych history.  I really like him most of the time, but I don’t know how to make him understand how bad this is.

Maybe I just need to collapse in his office and start sobbing on the floor.  Too bad I can’t do that at will.

My RN friend is going with me to the appointment, though, so maybe she’ll be able to help get the point across.  Of course, then he’ll probably just send me to some other specialist, and that’ll take weeks to get an appointment, and then they’ll do tests, which will take more weeks, and meanwhile my level of functioning will continue to decrease.

Oh, and for added fun, it’s going to be yet another month before I can get my Nexplanon implant, too.  It has to be done during the first five days of your period.  I called today when my period started, but apparently their supplier screwed up.  They don’t have any implants, and the nurse couldn’t tell me when they’d be getting more.  And my NP wasn’t working today, so I have to wait for her to call me back tomorrow and find out what the hell we’re doing about that.  Or I may just beg her to do a hysterectomy if the pain doesn’t let up.

Could something, ANYTHING, please go right for me?

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I Don’t Matter

I feel like an asshole every time I say I don’t matter.  People keep telling them I matter to them, and I don’t want to ignore that.

But it feels like it only matters if I matter to people who have the power and money to make my life survivable.  It feels like they’re the ultimate judges on whether I deserve to exist.  Clearly, their verdict is that I don’t, so it feels like it doesn’t matter that I matter to anyone else.

I hate myself for thinking that way, for being that person.  Because it means I’m essentially telling everyone else that they don’t matter.  Emotionally, that’s not how I feel at all, but that’s the logical conclusion to what I’m saying.  And I hate that because it makes me a collaborator.  I’m affirming a system that tells you that you don’t matter unless you have money or power.  Even though in my mind it only applies to me–everyone else in my situation absolutely deserves to exist and to have their needs met–I’m still buying into a fucked-up system.

But I don’t know how to believe I matter when I can’t make ends meet.  If someone matters to you, you take care of them.  You make sure they have a place to live and food to eat and warmth when it’s cold.  That’s how you treat someone that matters.  But my government, a system I’ve worked my ass off to improve, obviously doesn’t think I deserve those things.  Because I’m sick, because I’m disabled, because I’m poor, because I can’t contribute to the economy, I don’t matter.  They don’t come right out and say they want everybody like me to die, but what other conclusion can you draw when the government won’t give you enough help to meet even your most basic needs?  There’s a reason suicide rates are much higher among people living in poverty.  We’re stuck in an endless cycle of deprivation and need, and then we’re blamed for our own circumstances.  There’s no hope, never an end in sight.

So when people tell me I matter, I want to believe them, I really do.  But it seems impossible when I’m staring straight at evidence to the contrary.

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