The Game

In college, I lived in the nerd dorm (a dorm just for students and professors in my integrated honors program).  We were big on games: chess, Risk, and Dungeons & Dragons were often played in the lobby as well as many video games (mostly MMORPG’s) in the TV lounge and computer lab.  But there was one game that was the ultimate game.  It was simply called The Game, and the only rule of The Game was that when you think about The Game, you have lost.  It was no uncommon to hear someone mutter, “Dammit, I just lost The Game!”  That was inevitably followed by groans of, “Goddammit, you made me lose too!”

The point of this, besides making all of you also lose The Game, is to express how I feel about positive thinking and gratitude in our culture.

There are times when I genuinely feel positive and grateful.  Those are nice experiences, and I relish them.  I also know that gratitude and positive thinking work for a great many people, and that’s awesome.  I’m glad people have found things that work for them and make them happier with their lives.

But my problem is how often people demand that everyone be positive and grateful.  There’s this moral imperative at work, and in a lot of cases it’s used as a way to silence people who aren’t feeling good, who lack things they need, who are pointing out real problems that need to be addressed.  Too often, positive thinking and gratitude are like The Game: if you think of anything negative, you lose, and you will be publicly shamed.

It’s my experience that it’s utterly unhelpful to tell people how they should feel about anything.  Not only is it unhelpful, but it’s often destructive and creates a cycle that makes people feel even worse.  Picture this scenario: I mention to someone that I’m depressed and anxious because I don’t know if I’ll be able to pay my rent, and their response is, “Well, you should just be grateful that you have a roof over your head at all.”  I feel invalidated–he doesn’t think my problems are important because other people’s problems are worse.  I feel anxious–oh god, I can’t say anything about this, and I need to be grateful, why am I not grateful yet, oh god oh god, come on, be grateful right now or he’s going to hate me, come on, what the fuck is wrong with you, it’s not that hard, just be grateful, for fuck’s sake!  I feel guilty–I shouldn’t have bothered anyone with my problems when other people are worse off.  I’m a terrible person, and I should probably just kill myself so no one else has to deal with me.  Now I feel worse, and I’m feeling like I can’t trust anyone to talk to them about what’s worrying me because I might be invalidated again.  Now I’m depressed, anxious, suicidal, and totally isolated.

I’m sure that the people who’ve told me to think positive or be grateful for what I have were trying to help, and I totally get that no one is perfect and always knows the right thing to say to someone in distress.  I know it’s hard to see someone in distress and feel helpless.  We want to fix things, and if there’s nothing material we can do to help, it’s easy to fall into the trap of telling people to just feel differently.  But distress is like The Game: the more you try not to think about it, the more you lose.

I can’t speak for what helps other people, but when I’m in distress, what’s much more useful to me than prescriptive gratitude is having someone just be present with me and validate my experience.  Most of the time, what helps most is, “Yeah, that really does suck.  I’m sorry you’re hurting.  You don’t deserve that.  I’m here, and I care about you.  Is there anything I can do to help?”  What helps most is people remembering that I exist, even when I’m quiet–calling, stopping by, just generally letting me know that they remember me and care about me.  I don’t expect anyone to fix me, and I don’t want to put the burden of making me feel better on anyone.  I just want to feel like I’m not alone and invisible and insignificant.  I want to feel like my feelings are real and invalid and important and allowed, even when they’re not easy ones to experience or witness.  Those things, rather than being told that I should feel grateful, are what make me feel grateful.

If writing gratitude lists or reading self-help books about positive thinking helps you, great.  I’m truly glad you’ve found something that makes you happier–everyone deserves that.  But please don’t assume that that approach will work for me, and please don’t keep beating me over the head with it.  I mean, I often need suppositories and enemas to maintain my health, but you don’t see me shoving things up other people’s butts when they have GI problems just because that’s what works for me.  (Sorry, you know I had to throw a poop joke in there somewhere.)

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.

Surrealism and Detachment

I talk to my mother on the phone.

Even that’s surreal, after several years of no contact.  She’s changed.  All my life, she expected me and my sisters to meet all her emotional needs.  Now she’s married, and she has someone age-appropriate to meet her needs.  She’s not as crazy anymore, not in the harmful ways she used to be, and I can talk to her without getting sucked into the crazy demands.  I still don’t trust her.  I know she’ll never acknowledge the harm she did to me for most of my life, but I also like feeling like I finally have a mother.  She hasn’t said anything cruel or manipulative in the year or so since we started talking again.  But it’s like she’s both my mother and not my mother simultaneously, on a number of levels, and that’s surreal.

She tells me my uncle, her brother, just sold his computer security company to Raytheon for $420 million.  I literally had to write that down because my brain couldn’t translate how many zeroes that was.  I can’t relate to that amount on money.  Right now, I have $7 to last me the rest of the month.  I only bought four rolls of toilet paper because I couldn’t afford any more than that.  I don’t think I’ll have enough money to pay December’s rent, and my power and heat bills are overdue.

But my uncle just sold his company for $420 million.  That’s $420,000,000, in case any of you also can’t conceptualize that many zeroes without seeing it.

He worked hard, and I don’t begrudge him his success.  But certainly the law of diminishing returns kicks in at some point, right?  I can’t even comprehend what you would do with that much money.  To put it in perspective, that’s more than three times the annual budget for the National Endowment for the Arts.  It’s surreal.  I don’t even really know him anymore, but even if I did, I don’t think I could ask him for it.  But it’s bizarre, realizing that a man with whom I share 21.9% of my DNA (yes, that’s an exact and oddly specific figure) has $420,000,000 and I don’t know how I’m going to pay $400 in rent.  How can that even be real?

My mother keeps saying how much she’s looking forward to seeing me for Christmas.  I tell her I’m excited about the trip too, but I’m detached.  I really don’t believe I’m going to live that long.  Three weeks, but I don’t think I can make it.  I think I will probably kill myself when I can’t pay my rent.  But I tell her I’m looking forward to it because I can’t exactly tell my mother I’m probably going to be dead before then.

Everything feels surreal, and I feel like I have no attachment to anyone or anything, like a helium balloon floating away.

Angry All the Time

Lately, I’m noticing that I’m angry all the time.  I don’t like it.

I feel like I’m trapped in a life I don’t want and have little control over, no matter how hard I try.  I feel hopeless.  I feel abandoned because I’m not getting the kind of support I need.  I keep trying so hard to make my life work, but it feels like almost everything is beyond my control.

So I’m angry all the time.  I want to lash out at all the people who could be helping me but aren’t.  I want to make other people feel as hurt, powerless, and hopeless as I do.

I feel like a monster.

But the truth is I don’t really want to hurt people.  I want to be helped.  I want to connect.  But I don’t know how anymore because all my efforts have failed, so I end up angry and bitter, wanting to lash out and pick fights and hurt people.

I feel so stuck, and the world around me is just getting darker and darker.  Is there any help for me?

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.

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?

Right now I resent all the people out there who have support–friends, family, partners, therapists, whatever.  I know it makes me a terrible person; resenting what someone else has isn’t going to bring it into my life.  But they have people who love and care about them, who talk to them and touch them, who would notice if they were sick or sad or gone.  And I don’t, and it’s not fair.

What’s so bad about me that I don’t deserve those people?  And yes, I know that’s a logical fallacy; I know it’s not actually about deserving or not deserving.  But that just means the universe is cold and empty and doesn’t care that I can’t get my needs met.  So either way it’s ugly: either I’m too bad to deserve care or the universe doesn’t care if I exist.

I want somebody to hug me and hold me and talk to me and take care of me.  The world is too big and scary for me to deal with, but nobody notices I don’t leave my apartment or my room or my bed.  No one cares that the world is too much for me.

Since there’s no one to love me, I might as well die.  And that makes me a bad person too.

But I haven’t succeeded in killing myself yet.  Probably because I don’t really want to die–I want someone to notice and care that I hurt so much I want to die.  Because I want someone to take care of me…but eventually, I probably will kill myself because no one is going to love me.

In the meantime I’ve been purging again because words aren’t enough for how fucked up I am.

nihil

Last night I kept dreaming of being in institutions–boarding schools and psych units.  For once, the psych unit dreams weren’t bad.  It was being somewhere that people noticed I existed every day, not just once a week or when they needed something done.

In my real life, I go days without talking to anyone.  I rarely leave my bedroom, let alone my apartment.  If I disappeared, who would even notice?  It would take weeks for anyone to realize I wasn’t here anymore.  Probably not until rent or bills came due and didn’t get paid.  Then add a few days before they’d decide it wasn’t just that I was depressed and ignoring my phone.

It’s like I’m barely here.  Right now, I’m not even sure I really do exist.

So I sleep, and I dream, and in my dreams, I am real, I exist, there is a space for me where I am held.  And then I wake up and there is nothing, I am nothing.

overwhelmed by exhaustion

I don’t know how to cope with this exhaustion anymore.

I slept 11 hours last night, and right now I can barely sit up.  My body won’t sleep anymore, but it’s not functioning, either.  I’m supposed to be doing a predictive dialer phone bank tonight, but I think I’m going to have to cancel.  I mean, my hands are so weak I’m having trouble typing.  I’m having to wear my wrist brace again because the latest joint pain is my left wrist.  The brace drives me crazy, but it’s the only thing that keeps my wrist from hurting every time I move my arms.

Something is wrong with me, and no one is taking it seriously.  My gastroenterologist, who’s otherwise awesome, just blows it off as a symptom of the UC.  I know some fatigue is normal, but not like this.  I mean, I’m not flaring, so there’s no UC-related reason I should be this fatigued and weak.

I should probably go back to my primary care doc, but how would I even get there?  It’s now a two-mile walk on a road with no shoulder to get to the bus stop, then two buses.  I can’t physically handle that.

I’m going to look into the paratransit buses that pick you up and drop you off at your door, but without a diagnosis, I’m not even sure I’ll qualify.  I don’t have a doctor to write a letter saying I’m too sick to use regular public transit because I can’t even get to a doctor in the first place.  Plus, the paratransit service is 2-3 times as expensive as the regular buses, and you have to go to an in-person interview at a place half an hour away.  How the fuck do you think I’m going to get there if I don’t get paratransit?

I just can’t deal with this right now.  Everything just feels so overwhelming, and I want to just go back to bed.  But I have to find a new roommate.

There’s always a boom tomorrow.

I was doing pretty well for two days after my friend’s wedding, but now the depression and apathy are back.  I haven’t done anything about my housing situation.  I think some part of me just wants to destroy the life I’m just barely holding together.  I think subconsciously I’m frustrated that no one sees how hard it is or that I’m NOT okay or doing well, so I want to make the outward appearance of my life match my internal state of chaos and hopelessness.  Then I will know for sure if anyone thinks I’m worth saving, and if they don’t, maybe I won’t feel obligated to stay alive anymore.

I know that’s profoundly screwed up.  I know how terrible it makes me sound, and maybe I really am that terrible.  I just can’t keep going like this with no help or support.