naamah_darling: Glass of tawny port on a table branded with a seven-pointed star. (Port Wine and the Morning Star)
The disability thing: I'm not getting as much money as I think I should be, but I'm getting an amount we can maybe work with, and possibly increase.  I still don't really want to talk about it or hear horror stories or even hear "It'll be really hard but eventually they'll give you what you want."  I honestly don't have the energy for "really hard" right now.  Even "moderately difficult" makes me want to throw myself out of the chariot and dash my head against a rock, so hearing that it will eventually be okay is really really not reassuring.  I just want to say that I'm . . . 65% okay with it.  It's just made thinking about anything else really hard, which means my ability to do necessary things has suffered.

But I'm improved.  Much less upset.  Might have something to do with the fact that I misheard or misremembered what Sargon said, and so for two whole days I was walking around thinking I was getting HALF what I am actually getting.  Might account for me being kind of a mess.

Smut: We're releasing the Golden Mask ebook next week on Amazon and on Smashwords.  We'll let you know when that happens.  Right now I'm doing the formatting for the print books, and I have to say, I'm not a fan of the process.

Really Bad Smut: Since I started this experiment on the 14th, I've sold around 80 copies of my horrible short story bundles.  At a profit around $0.30 - $0.35, that's, like, a little under $30.  So, not much monetarily, but sales are pretty good.  Debating whether to continue the experiment, but I think I should really give it a few more months of adding new stuff every week, and see how that goes.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
No check in my bank account yet.  Haven't heard from anyone.

It's going to be like this.  Calling people, bothering them to keep the wheels turning, re-applying for things when necessary, letting them look at my financial records whenever they want basically forever, never saving money or owning anything of great value.  No assets.

I'm trying to reconcile myself to a life spent waiting for other people to do their jobs so I can lick up the scraps they throw me, trying to live off those scraps, and I'm not having a lot of luck.

I got approved, and I'm supposed to be happy.  Things are supposed to be getting better.  And I'm reacting to this whole thing really, really badly.  I didn't expect that.  Maybe I should've.  I mean, there are about a thousand reasons for this, and they are all completely legitimate.  I'd just expected . . . I don't know.  I'd expected that maybe things wouldn't be so bad.

I'm trying to just . . . let it go until we know more.  Until we have a chance to sit down and crunch the numbers and see how badly we're screwed.  So I'll save my enumeration of all the ways in which that is very likely to happen for another time.

There is no "should", when it comes to how you feel about something like this.  You don't get anywhere by telling yourself you "should" feel differently, that you "shouldn't" be angry or hurt or scared.  I know that.  I do.  But this bleeds outward.  It's affecting my husband, who has his own serious issues to deal with, and doesn't need my relentless grieving over the whole mess.  It's affecting my ability to do anything constructive.  It's making me angry and bitter, extraordinarily so.  It's affecting my attitude toward just about everything.  I'm having a hard time, just now, understanding why I wanted this.  I don't understand how it can possibly help, long-term.

I don't know what to do.  Because honestly?  Killing myself is not an option, lord, no, but . . . I feel like I'm having my life taken away from me.  Again.  And when I do die, eventually, I don't want it to have been . . . like this.  I'm tired of being helpless and having no options.  I'm tired of feeling guilty for hating my life when I have so much more and am so much healthier than other people I know who are going through similar things.  I'm tired of digging my claws and teeth in and being able to do nothing but slow my slide toward the edge.

I'm tired of being scared.  Tired of being unable to want things, because I've forgotten what it feels like to be able to dream bigger than what I can do tomorrow, or maybe next week.  I'm tired of being melodramatically upset.  Tired of being sick.  Tired of everything.

I thought the hard part would be getting approved.  Turns out it's the part where I have to live the life that limits me to.  Who knew.

Note: I don't want to hear anything even remotely "WELL HERE'S A STORY OF HOW I GOT SCREWED" or "HEY HERE'S ANOTHER WAY THEY COULD FUCK YOU SO MAYBE WATCH FOR THAT OKAY."  No advice, either, please.  I'm not in a place where I can even contemplate making a phone call because it's all just leading to more shit I can't fucking handle.  Questions they won't answer.  I fucking hate this.

naamah_darling: A tiny week-old tabby kitten with her paws raised and her eyes half-closed. (Kittens)
They screwed up the appointment, but we still got in to see someone after waiting for two hours. So, approved, will get money, they can't say how much, but I might find out in the next week or so.

Can't celebrate yet, but at least the gears are still turning.

Gives me at least a little satisfaction to spend the time I'm forced to wait in a government office writing perverted incest porn.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Thane)
Okay, so this is fucked up and hilarious and completely, unexpectedly awesome.

I wrote about being denied for disability here: Time and tide, and a complete lack of surprise.

Except . . . the letter wasn't a denial letter. It was an acceptance letter. The most backhanded piece of mail I have ever received, one that masqueraded almost perfectly as its opposite. It said, in one line buried in three pages, "we have determined that you are disabled." But it then went on to say that I was not eligible for help, so no cookie for me, and that is what the whole rest of the letter was about, and so I didn't really understand what I was seeing, because all I was seeing was the big red NOPE where the money I desperately need should have been.

So we talked to a lawyer, and the lawyer explained that this is what happens when they don't have current financial information on you, because they've dragged their heels so long they can no longer use the info they requested from you at your initial application. They want new proof of our liquid assets, that's all.

We called the Social Security office and talked to someone there about it and yeah, that's the truth. I'm approved, contingent upon my ability to prove to their satisfaction that I need their money, but they aren't arguing that I'm not crazy.

We now have an appointment to go see them on April 12th, though that might get moved or shuffled about, I don't know.

The important part is that I haven't been determined to be eligible for financial aid.

But I have been found to be disabled by the state.

And that's . . . that's the big one, isn't it? The hard one? That's the part I was fighting for, and so afraid of? The thing that never happens, that I knew would not happen: they admitted I was disabled with my first try.

I mean, I . . . I did it. I didn't even know I did it, but I did it. And . . . I don't . . . I just . . . I feel so incredibly weird about the whole thing, and there is a lot to unpack. I have complicated feelings about it, and I am afraid of the restrictions that will be placed on me because of it -- there are some, regarding how much money you can make or whatnot, and I don't know what those are, and won't, until I talk to the people in April. I am still afraid this will be taken away from me.

But they want me to bring my bank account and routing numbers for direct deposit, guys, and it just . . . it could be a real thing. And I don't . . . I don't . . . really? I mean . . . really?

It's too soon to be really super-happy about it, because we don't know about the financial situation and how much help I will be eligible for, if any. But I want to be happy. Because this is . . . huge. Isn't it? This means no hearing in front of a judge, no lawyer fees, no more testing, no medical records, no notes from doctors. This means no warpath, less bracing myself for more of what I've been getting, which is kicked. This means 75% less fighting. I was ready to do it. One hundred percent, I was ready to do it. And I probably won't have to. Not the way I thought I was going to.

I don't know what to think. I don't know what to feel. But that, over there in the corner, that little, fragile, half-invisible thing, that is identifiable hope. And I don't want it and I'm trying not to feed it, I'm trying to ignore it, but it's there, no matter how unwelcome. Not hope for the long term, not hope that I will someday become rich and powerful and have an army of minions in neatly-coordinated suits. Hope that, in a year, I will be able to go to the doctor or the dentist without waiting months and months. Hope that I will be able to live a life less devoid of a meaningful future. Hope that I will be safer, and less afraid. Less afraid. Less afraid.

Less afraid.

Fucking hell, I have spent literally most of my life feeling unsafe. "Less afraid" is all I have ever fucking wanted.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)

Hmm . . . this sounds familiar. And not in a good way.

I figured it out! I figured it out!

Okay, the big thing that upsets me about the inspirational meme stuff like the one above is that pairing images of disabled people with messages like "It's all in your attitude" or "think positive and you can do anything" and "there are no disabilities, only bad attitudes" is basically pairing images of us, people with disabilities, with the sort of trite crap that is used to deny us when we ask for help and shove us down when we try to explain that there is a problem and something is wrong.

See, when a depressed teenager is failing at school, she is told to study harder, try harder, that she's got a "bad attitude." When a person with chronic pain is told that there are no excuses for not exercising every day and keeping a perfectly tidy house, and they react by getting justifiably angry, they have a "bad attitude", a "chip on their shoulder", they're "too sensitive", and they're "lazy" to boot. When a poor disabled person who cannot afford a wheelchair is told that the only disability is a bad attitude, and this is illustrated with pictures of $15,000 prosthetic legs*, and they don't happen to feel inspired by this, they just aren't grateful enough for what they do have. Telling someone to "think positive" when they are in the pits of bipolar despair is not just mean, it's indicative of grave ignorance and a sad disregard for the person's basic humanity.

All this stuff is doing is perpetuating the myth that leads to the stereotypes that lead to the neglect, bullying and abuse that make our lives much harder than they have to be . . . and it's perpetuating it using pictures of us.

And it is doing all of that in order to motivate and cheer up people who are not disabled.

And that is just messed.  Do you see how awful that is?

The messages alone are harmful and frustrating, even when pasted over pictures of sunsets and flowers. When put over images of us, when those words, OTHER PEOPLE'S WORDS, are literally written over our bodies and faces, that is really hurtful.** It silences us. It uses us as symbols of something that often doesn't even apply to us.

Don't erase us like that, okay? Those aren't our words. Those aren't our voices.

Don't use us to make yourself feel better about your odds of making it if you just try harder.  Don't use us to point out to your underachieving friends that they could try harder.  Because we try as hard as we can, we do, and it is often not enough.  Do you know how many of us live below the poverty line, struggling to survive because we cannot get help from state agencies without years-long battles that we are often too sick or too tired to fight, or won't live long enough to win?

This is not a game to us.  This is not a joke.  This is not a teachable moment.  This is not a moral to some inspirational story.  This is our life.  I can't be sure I will be able to afford to go to the doctor this month and buy the medication he will prescribe me.  I mean, I could wring it out of the budget, sure, but that's going to cut somewhere else.  I have no savings.  I take money from my father, from friends, because the state is dragging its heels in acknowledging how very, very sick I am.  Do you think that the low-income health programs cover my health care?  They don't.  All they will take care of is my baby-making parts, because that's all I am to them, and the rest of me is just so much defective meat.  And until I am declared officially disabled, and given a piece of paper and a number and an official designation to tell everyone else what I already know because I live it every damn day, it won't cover my medical care.  So I hurt more.  I get sicker.  Don't ignore the unpleasant reality of many of our lives to capitalize on the inspiration value of the things we do manage to accomplish.  Our adversity is not something for you to use to prop up your self-esteem.

You can have your inspiration. Nothing wrong with that. You can even find our stories inspirational; it's not the main reason I blog about disability sometimes, but I certainly don't mind if someone who is not mentally ill finds my occasional victory inspiring, or takes heart from my supposed strength or stubbornness. I don't begrudge you that.  I don't.  The fact that I can help other people by talking about this?  That is, about 75% of the time, the only thing that makes the thought that this is forever and ever until I die tolerable.  I don't care who it touches.  If I am alleviating pain, I'm happy.

Don't use us, though, to talk about yourselves, or other people.  Especially not to other people. We -- in our identity as disabled people -- shouldn't be used to represent or illustrate or talk about anything in a way that does not directly center us and our perception of our experiences.

We don't belong to you. Our lives don't belong to you.  Our bodies don't belong to you.  Our experiences don't belong to you. We aren't your inspiration. We don't deserve to be "that guy" you are glad you aren't, and we aren't brave saints who have navigated the minefield of life and emerged on the other side, triumphant, smiling, and with the wings of eagles.

Here is what we are: we are struggling, hurting people who navigate the shit life throws at us with varying degrees of success, battling all the way. We never win. We just hold it off a little longer. Life is wonderful and amazing, but it is also very, very hard. There is no finish line, not for anyone, except the big black. And the days we don't win that fight, those aren't failures that happen because we didn't keep our chin up. Those are failures that happen because the world is a hard place, and being disabled in one way doesn't come with built in compensations that make us better at dealing with the hard things, or confer advantages in another area. We are as shitty at life as anyone else. And that doesn't mean we aren't trying as hard, or make us less deserving.  It makes us human.

We are warriors in a war story that never ends.  There is no happily ever after. There is just the fight. Every. Day. For the rest of our lives.

Respect us. Please.

We don't get to look at pictures of you and feel hope. We don't get to look at pictures of you and feel good about ourselves. So don't make us look at pictures of ourselves while you tell yourselves how much you can achieve, because hey, life is so easy even disabled people can do it and smile, right?

Well, no. It's really, really not.

* Let me just talk about those cheetah legs. They are made of carbon fiber, engineered to replicate the spring action of the world's fastest land predator. They are so incredibly effective that South African Olympic sprinter Oscar Pistorious, pictured with that cute little girl above, was barred from competing in the 2008 Olympics because his cheetah legs were found by a committee to bestow upon him advantages that non-amputee runners could not match. That makes using this picture kind of inappropriate. The fact that the legs cost $12,000-15,000 combined with the caption make the pairing actively revolting. Those legs represent the absolute pinnacle of prosthetic technology, and they are extremely expensive and thus accessible to very, very few people.  You not only have to be rich, you have to be the right kind of amputee. Not everyone can afford them, and not everyone can use them. Those two people, that amazing athlete and that precious little child who is obviously having a grand adventure, are very, very lucky, and with all my heart I wish them the very best in the world, but there is no comparing that kind of luck with a good attitude. A good attitude will not buy you the world's most incredible legs.

Also, there is no prosthetic for mental illness.  Many people barely even acknowledge that it exists as a legitimate thing, not just a cluster of inconveniences and lies and concocted justifications to be browbeaten out of anyone who claims to be mentally ill.

** Yes, at least one of those quotes WAS from a guy with no legs. He doesn't speak for all of us, or even most of us. And it is super-important that you realize that.

FINAL NOTE: YES, YOU MAY LINK TO THIS, OR QUOTE FROM IT IF YOU CREDIT AND HOPEFULLY LINK BACK HERE.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
I filled out the functionality report this week, which is a many-pages-long form that they send you when you apply for disability. You have to fill it out and send it back, and they use your answers to help them decide how fucked up you are.

What a bastard.

I had not expected it to be as difficult as it was. It's like the world's worst homework. Ever.

First, the Y/N questions. "Do you finish what you start? (For example, conversations, chores, watching movies, reading books.) Y/N" "Are you able to leave the house? Y/N" "Do you prepare your own meals? Y/N"

HOW ABOUT "Y/N/SOMETIMES?" Radical notion.

Most of those questions came with a space for you to explain any "no" answers, so I put down "no," and explained the shit out of that. But some were just Y/N, and left sitting there on the page like an unburied cat poop.

That was just annoying, though. That wasn't really painful.

What was painful were the six lines they give you to answer "Explain how your condition affects you."

I told Bat_Cheva that I could do it in four words: "Fucks my shit up." But they want specifics. "Fucks my shit up on Monday, Tuesday, Wednesday. . . ." is not the sort of specifics they want.

Maybe for someone who is missing part of a leg or has no arms or is blind it is easy to describe how you are affected. At least the people looking over the application most likely have arms and legs and eyes and so on, and therefore no matter how stupid or non-empathic they are, must have at least a rudimentary idea of what those parts are used for and what it might be like to not have them.

With mental illness, not so much. Being crazy fucks up parts of your mind you didn't even know you had. Parts of your mind that lots of people don't even believe in. Like, all those "You can choose to be happy!" people who are all "You can look at the negative or the positive, so look at the positive, and everything will be fine!" and don't just apply it to themselves, but to you, too? Those people? They Do Not Get It. I can look at the positive all I want -- I do -- but when the problem is "I am frequently incapable of feeling happy, or even somewhat content," all the half-full glasses in the world won't do a damn thing to change that.

So you are left trying to describe the horrific thing that is devouring your life to someone who a) does not know you and therefore does not in any way care, b) is motivated to find reasons to reject you, and c) might not even understand that depression is a real thing that screws up even the most basic parts of your life.

Then there was the part where you have two lines to explain how your social life has changed since you became disabled, or describe what things you are no longer able to do that you used to be able to do, or the bit where it asks how often you are able to do things that normal people do every day and you have to admit that you are able to do them maybe a couple times a week, if it's a good week.

Or they part where they ask you to describe your typical day, and you do, and then you feel like a pathetic failure because it goes pretty much like this:

Get up. Brush teeth. Get reminded three times to take your fucking pills. Surf the internet. Wait for someone else to cook your goddamn food. Try to write something meaningful. Fail. Watch Youtube videos of explosions and bathtub farts. Try to make something pretty. Fail more often than not. Think about calling a friend. Decide that the phone is evil and should be avoided. Play video games. Think about doing some chores. Decide that you would rather give yourself a lobotomy with a rusty icepick. Watch a movie. Fall asleep halfway through. Answer some email. Pet the cat. Maybe take a shower. Go to bed. Get up, take pills you forgot to take. Go back to bed. Sleep badly. Wash, rinse, repeat.

Which, admittedly, describes a not-very-functional person's day, but you try writing that about yourself without feeling crappy about it.

It's not that I judge other people for being this way, or judge myself. It's that I hate that I -- or anyone -- must live with this. It's that it genuinely does suck, it sucks unbelievably, and having to describe it is so depressing. Especially when odds are good that they will look at this and somehow decide "Yeah, this person could totally go and get themselves a 40-hour job and support themselves without going completely off the deep end."

It doesn't help that my typical day during which I am supposedly disabled looks a whole fucking hell of a lot like most folks' days off. You know, excluding the failing at doing anything constrictive bit, and the part where I am crushingly depressed some days, and the bit where I can't cope with normal things like going three different places in one day or making food for myself or cleaning up the goddamn kitchen.

Frankly, most of my time involves sitting around desperately bored and wanting to do something else, and wishing like hell I felt like doing something else. And we are taught from a very young age that this is wrong. Not just an incorrect way of feeling, like giving the wrong answer to a simple question, but a moral failing. When you say "I wanted to go and paint and I tried and I couldn't," or "I wanted to write, but I couldn't," or "I wanted to get my room cleaned up, but I couldn't," people hear "I didn't want it enough."

Believe me. I want it. I want it so fucking bad. But we are taught that if we want something really badly, we can get it. You just have to want it enough. We aren't taught that sometimes, just wanting will not bridge the gap between desire and ability to execute that desire. We are not taught that we may have drives and desires and hopes and dreams that cannot be fulfilled. We aren't taught how to deal with that, not for ourselves, and not when we encounter it in others. And when people like me complain that we are not made for what we want to do, we are told we are spoiled, that we expect engraved invitations and silver platters, that we should be ashamed, and we should shut up and work harder. Or we are told that we should want something else, as if it is just that easy.

During the evaluation for the low-cost mental health care I'm in the process of getting, the trainee doing my intake survey asked me "What is your purpose in life? What is your goal, what do you want?"

I thought about it, and I told her that at one point I would have said "It's to be the best companion I can be, the best person, the best friend and partner. To be a good person. I am here to make the world a better place."

Then I explained that, fuck that shit, I want to be the best at doing the things that only I can do. I want to write the stories only I can write and make the art only I can make. As far as I am concerned, that is why I am here. That is what I have to offer that no other human being could possibly offer. Yes, I want to make the world a better place. I want to do it by expressing myself fully, not by trying to make other people happy.

I am a good companion, a good person. Not perfect, but pretty good. It's not what I'd call easy, and I am working within some limitations, but I can do it. I don't need to make it a goal. I am already there, and part of being there is that you never stop trying to be a better person. So, you know, I actually think I'm doing okay there.

I certainly don't need to make my value to other people as defined by what those people consider valuable part of my goal in life. If I did, I'd go back to starving myself. I'd have gone to college.

I only need to care about the things that make me valuable to me. And that is what is fucking murdering me by inches every day. Those things, the things that I love and which define me to me -- specifically, the writing -- are inaccessible. Gone. The things I care about most are out of my reach. The things that make me me are out of my reach. I am unable to be myself in the ways that mean the most to me.

THAT is the effect that this shit has had on my life.

That is what I cannot put into six lines or less, and what they probably would not care about even if I did, because all that matters to the government is whether I can Keep A Job, no matter how soulless. I'm so goddamn broken-down from not even being able to be myself, there is not a chance in hell I could Keep A Job, even a wonderful one. I can't even cope with scooping the goddamn cat litter, or washing my sheets. I can barely cope with having a set time to get up once a week. Twice a week is out of the question. How in the name of Zeus' butthole could I work 40 hours a week? I am not kidding when I say that even if I was working at the all-day kitten-snuggling and incredibly attractive Brazilian model grooming and obedience training day center, I still could not do it every day. That, my friends, is sad.

So I had to finish that seven-page travesty and turn it in, with all the weight of what cannot be expressed in a few short answers to a few inadequate questions pressing in on me, and all the things I cannot say suffocating me slowly, with the knowledge that it will most likely be denied. That my human pain will be weighed, measured, and found wanting.

But I still fucking did it.

I think I did a pretty good job, and I feel sort of like a rock star.

Mad props to Sargon, who also filled out the version of the quiz for the person who knows you best, which can't have been easy. But I can't write about that, because I didn't have to do it. If I get through this at all, it will be because of him.
naamah_darling: A tiny week-old tabby kitten with her paws raised and her eyes half-closed. (Kittens)
I went out to the appointment last week and applied for disability on the basis of being so damn bipolar. Everything went fine; it was difficult but less harrowing than I was afraid it was going to be.

I just . . . I know they'll probably turn me down,* and that's when we call the lawyer, and I'm fine with that, mostly. Sort of. All right, not really, but I'm doing it this way because that is what I've been told to do. But . . . damn, guys, I've been so poor ever since I got married that before around 2007 I'd never been to the doctor for shit like, you know, the entire year I spent having two-hour panic attacks almost every day, or the eating disorder, or the not-suicidal-but-still-atrocious depression that I've had since I can remember. I've had this shit dogging me since I was a teenager, yet I have no documentation for it. It is so monstrously stupid and unfair.

I will persist, of course. There isn't another way open to me right now. Traditional employment is out of the question, I'm not able to write, I cannot take commissions, and our other ventures are not performing particularly well.

I am still depressed -- that isn't something that just goes away -- but knowing help is coming makes things easier. I don't necessarily expect that everything will get solved and I'll be as un-fucked as someone who was never crazy in the first place, but I am hoping to get some concrete advice about meds and coping strategies and all that, so that I can live with this if not more productively, more comfortably.

I am trying not to be all doom and gloom about this. It's just kinda rough, especially coming at a time when I am so low. And sometimes, with things that suck, just the truth can be doomy and gloomy. I am upbeat. You can tell, because I'm doing things like rearranging my studio closet and storage space, optimistically hoping I'll be able to work at least a little.

On a brighter note, we have gotten our sleeping schedule turned around in a good way, and I am hoping that lasts. I just got up about half an hour ago, at five thirty a.m. Being awake during the daylight is so weird.

* I'd strongly prefer not to have the "Did you know it's difficult and could take years?" conversation. I do know. That's why I didn't do this ages ago. I am choosing not to think about anything more difficult than the very next step. Nothing matters but that I take that one step. Nothing else even exists. Thank you. I know y'all understand.

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naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
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