When you least expect it

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.

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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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Ideology v. Survival

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.

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inevitability

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.

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Hat tip to Schrodinger

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?

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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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We Don’t Need More Awareness

miawarenessweek

Apparently, it’s Mental Illness Awareness Week, and apparently, since I’m a crazy person, I’m supposed to care about it.  Well, I don’t.  I think it’s bullshit.

Lack of awareness is not the problem.  We all know mental illness exists.  I doubt you could find anyone in this country, in any developed nation, who doesn’t have a lived experience of mental illness or know someone who does.  Plastering banners on Facebook and wearing rubber wristbands and pointing out that 25% of us are bughouse nuts doesn’t actually help anyone.  We don’t need more awareness.

What we need is compassion.  We need people to stop treating us like we’re all axe murderers who will hack them into pieces at the slightest provocation.  We need people to stop being afraid to let us be around kids.  We need people to stop ignoring us because they don’t know what to say or how to make it better.  We need people to stop treating us like we’re intrinsically different from them.

We need to look at the epidemiology.  We need to look at the fact that people of color and poor people are more likely to be diagnosed with mental illness.  We need to look at the fact that trauma is probably the single biggest predictor of a psychiatric diagnosis.  We need to look at how being mentally ill puts us as much higher risk for being emotionally, physically, or sexually abused.

No, it’s not even that we need to look at those things–we have already established these as facts.  What we need to do is prioritize finding solutions to these problems.  Psychiatric treatment doesn’t address the underlying issues of poverty and racism that, in many cases, cause the emotional distress.  Most psychiatric treatment is still not trauma-informed; in fact, it is structured in a way that takes away all of the patient’s power and makes it even easier to abuse them.

We need more involvement in the system.  We need to remake the phrase “inmates running the asylum” into a good thing, into a working model for treatment of emotional distress.  We might not know exactly what we need in our moment of crisis, but people with lived experience know better than any guy with a white coat and a diploma on his wall.  We need professionals who will work with us, who will respect us as whole, competent people even when we don’t appear that way.  We need to hold the choice in our treatment and the power in our lives.  We need to stop being so afraid of violating boundaries that we leave people suffering all on their own.

We need a system where the patients hold as much power as the clinicians, or close to it.  It can be done; I’ve seen it work.  But it’s only available to rich people.  We need to find a way to make that available to everyone who needs it.  We need healthcare that doesn’t discriminate against people with emotional distress.  We need doctors who take our physical problems seriously instead of telling us it’s all in our heads.  We need to be listened to, heard, believed, included.

We need a system that doesn’t turn people away because they’re too sick or not sick enough.  We need a system in which the quality of care doesn’t depend on the amount you can pay for it.  We need a system that can offer people support beyond one hour of therapy a week if that’s what they need, but without threats and seclusion and removal of freedom.  We need a system that, instead of isolating us further, brings us into a community–first a community of other people experiencing emotional distress, and then into the larger community

But awareness?  No, we’ve got plenty of that.  All it does is reinforce the broken system that’s currently in place, so count me out.  I’ve got all the awareness I can stomach.  Instead, I’ll leave you with a poem.  To me it says everything I’m saying here except much more clearly, so here’s hoping you guys can understand it too.

Formaggio

The world
was whole because
it shattered. When it shattered,
then we knew what it was.

It never healed itself.
But in the deep fissures, smaller worlds appeared:
it was a good thing that human beings made them;
human beings know what they need,
better than any god.

On Huron Avenue they became
a block of stores: they became
Fishmonger, Formaggio. Whatever
they were or sold, they were
alike in their function: they were
visions of safety. Like
a resting place. The salespeople
were like parents; they appeared
to live there. On the whole,
kinder than parents.

Tributaries
feeding into a large river: I had
many lives. In the provisional world,
I stood where the fruits were,
flats of cherries, clementines,
under Hallie’s flowers.

I had many lives. Feeding
into a river, the river
feeding into a great ocean. If the self
becomes invisible has it disappeared?

I thrived. I lived
not completely alone, alone
but not completely, strangers
surging around me.

That’s what the sea is:
we exist in secret.

I had lives before this, stems
of a spray of flowers: they became
one thing, held by a ribbon at the center, a ribbon
visible under the hand. Above the hand,
the branching future, stems
ending in flowers. And the gripped fist–
that would be the self in the present.

–by Louise Gluck, from Vita Nova

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please save me

What am I supposed to fill all these hours with, except dying?  There’s so much empty time and nothing else I want to do, nothing that holds my attention.

Would it really be so bad if I killed myself?

That’s a shitty question and you should know better.  If you’re going to kill yourself, take responsibility for it yourself.  Don’t try to make other people give you permission.  That’s a shitty thing to do to people.

I don’t even really want to die.  I just want a way to survive.  But without that…what?  I stay alive out of guilt, knowing that everything’s going to come crashing down around me soon?  Is that really better than being dead?  I mean, I hardly leave my apartment, so who would even notice my absence?  It would only be noticed when someone wanted something from me, something I can’t give because I have nothing left, nothing.

I need somebody to save me, but no one can–or will–I’m not even sure which is more accurate anymore.

I could take some more pills.  Sleep some more.  Supposed to be going grocery shopping with C tomorrow but I could email and say I’m not feeling well enough.  I don’t want to hide this anymore, but I feel like I have to.  I mean, the only “help” left to me now is the hospital, and that would make things worse instead of better.

Dying is the only solution that makes any sense to me right now.

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I did a stupid thing

Saturday night, I overdosed.  And here it is Tuesday morning, and I’m still barely able to function.  I can’t spell basic words without a lot of thought, and I nearly pass out when I get up to go to the bathroom.

I’m not sure if I wanted to kill myself or not.  I was at least half-dissociated, so I don’t even know how many pills I took.  (Or, for that matter, which one[s] of us took them.)

I think I wanted either to die or to make someone notice that something is very very wrong.  But I ended up not accomplishing either of those things.  So I feel like a failure in every possible way.

I feel like I NEED someone to take care of me.  To hug me and tell me it’s all going to be okay, to listen when I’m freaking out, to take care of all the everyday things like bills and food that overwhelm me.  I want to go back to a residential program like Sheppard Pratt, but I can’t afford it.  I have maybe three weeks left of my lifetime inpatient days still left.  I can’t use those up now–what if I need them more later?  Besides, Sheppard Pratt always has a waiting list, and I need help now.

Everything about real life is just too overwhelming.  Most of it, at this point, comes down to money, and I feel greedy for saying that.  Money can’t buy happiness, but the lack of it sure can fuck you up.  If I had a car, my life would be so much easier.  I could get to appointments, to the grocery store.  Hell, I might even be able to have a little bit of a social life.  But even if someone gave me a car for free, I wouldn’t be able to pay for insurance, gas, maintenance.

And if I had more money, I could get more psychological support.  I wouldn’t be stuck with these useless people from DMH.  I would even be able to travel if I found one who’s good but not on public transit lines.

And I just wouldn’t have to worry all the time about everything.  Right now, all it would take for my whole life to blow up in my face is for one little thing to go wrong.  Just one thing, and I’ll be sleeping under a bridge in winter.  One little thing, and I won’t be able to pay for the meds that keep me alive.  This is the reality of my life.  More money wouldn’t cure the underlying emotional injuries, but it would make them a hell of a lot easier to deal with.

But that money, that help, that support–none of it is going to come.  How do I keep dealing with the utter hopelessness of that?  My compulsion is to berate myself, to tell myself, “You don’t need any of that.  You’re just a pathetic attention-whore who wants everybody to pay attention to her all the time.  You don’t deserve to have needs.”  And with that comes the impulse to starve myself again.  It would be so much easier, and it dulls all the feelings.  And it seems easier than staring at the black hole in the center of myself and knowing that no one will fill it.  I mean, when my own government tells me I don’t deserve enough money to be able to meet my basic needs, who am I to argue?

And on top of the money issues, there’s the chronic illness.  It’s never going to get better.  It will continue to control my life for as long as I’m alive.  I’ll have to keep taking toxic medications that make me almost as sick as the UC does, albeit in different ways.  I’ll always be in pain.  I’ll always be so weak I have to use a cane to walk and still can hardly manage even with it.  I’ll always have to control my diet so strictly I’ve given up on eating out.  I’ll never not be sick.  In fact, I’ll probably just get sicker.  There is no relief, no remission.

And this is where I’m stuck, all day, every day.  I’ve done all the things they’ve told me will make me better, and none of it is working anymore.  So I have to choose between living like this for another 60 years or killing myself.  I want to feel like there’s some reason to live, but right now the pain is so bad nothing matters except how to make it stop.

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