Friday, May 20, 2011

There's a lot of side notes in this: Do you read them while you're reading or save them for the end?***

Today I had a telephone review of my SSI benefits, and while it went about as well as could be expected*, it has caused me an untold amount of anxiety. Between Wednesday, when they pre-called (out of nowhere) to tell me to be ready for this morning's call, and the actual call, I spent a lot of time trying to figure out what the hell could've gone wrong. Was I over my $2000 limit? ** Was there some mix-up with the new bank account (I'd changed to direct deposit, so maybe that was it)? Had my use of some other agency/program counteracted with my SSI benefits? There were so many ways this could have gone wrong, and I thought of almost all of them, I'm sure, in those two days.

While it turned out to be a routine review - something that seems to be happening to more and more of the government sponsored programs I belong to as the economy works on its imitation of a black hole - it's one of those things, one of those semi-degrading things - that winds up making me feel like an eternal loser. I usually don't worry about money - and I'm very lucky in that I don't: Living with my parents, contributing as I can, when I can is a situation that I am more than grateful for. I absolutely know that if it weren't for them, I would be homeless/dependent on the state (which can amount to practically the same thing). Back when we were living with Nana, and the PUS were tormenting our daily lives, I went so far as to sing up for state sponsored housing, because I knew that the situation we were in was poisoning all of us, and I wanted out. Of course, it turned out that the state's waiting list was between 2-3 years (I think), and none of the public housing had the accomodations I would need in order to be able to live there (regarding not just the physical space, but also things like chemicals and smells and things like that). My only other option was state sponsored medical/rehab/halfway houses: places for people with disabilities that require help with activities of daily living. There are a number of reasons why I hope never to have to take that option, but I don't forget that the only thing keeping me from having to use it is my parents' generosity.

And today's phone call was just a reminder of that: the rough estimate of our monthly household expenses (and the fact that I could not be specific when queried about such costs as gas or house insurance, like any other "grown-up" would know), divided by the number of people living here, and my entire SSI check comes out to be much less than my fair share of the expenses. That means even if I were to just turn over my check (and there go all of the 'extras' of my life like clothing and craft materials, take out or - as is the case this week - birthday presents for little girls), I would not even meet the amount of money I could reasonably be expected to contribute. And that is a hard thing to acknowledge, even if I already knew it.

So I've been feeling a little low about that, but trying not to, because I know it's not the end of the world, and I tend not to think that making money is the be all and end all of a person's life anyways, but it's just another example of feeling like a burden, only this time it's all there in black and white. It's been proven, like those geometry proofs we used to have to do. 'If'' x , then 'y'. Show all the properties that make it so. I knew there was a reason I hated math.

In other news, I am trying to get my writing mojo back, if only to be able to tell you all about my new insomniac friend, 'anxiety dreams'; how to plan a wedding shower for a wedding I wasn't sure was happening until a month ago (and it's now 77 days away); the story of 'Burny', my old/new computer that decided to smell like fried hair; and how a soon-to-be five year old gave me the finger three times in the course of one afternoon, all the while pretending that she wasn't. Doesn't that sound like fun?

*Side note: What is the first thing they tell you about your social security number? "Never give it out over the phone, or the internet, or even in person, unless you absolutely have to. It's not safe." What's the first question some random person claiming to be from the government will ask you when they call to talk about your SSI benefits? "Can you confirm your social security number, please?" Even though I had no idea why they were calling, or what this was about. Seriously, SSI people? I will also NOT confirm my mother's maiden name or my bank account number. Let's me in person, shall we?

** Side note the second: Did you guys (who aren't on SSI) know that there's a limit to the amount of funds you are allowed to accumulate if you are receiving benefits? It's $2000. Later on we can have a nice discussion about the institutionalization of poverty for individuals with disabilities, and how the system creates an environment that basically requires poverty by limiting the amount of personal wealth an individual receiving SSI can have, but for now let me just say, as a saver, that being constrained to the $2000 limit is quite difficult for me. There's no sense of security there, at all. There's nothing to 'fall back' on, and if my benefits were to disappear, or decline, or become delayed, the situation would become very dire, very quickly.

***I usually save them for the end.

Thursday, May 19, 2011

It's the way we answer the question, How can such things be? Stories suggest that sometimes -not always, but sometimes, there's a reason

I've fallen in love with more than one writer, during the course of my life: I've talked before about how I'm a certified Noraholic, and how the fact that there isn't a new Harry Potter book coming out this summer (or any summer, :sob:) makes me want to cry. But it's always been this way for me: loving books, loving writing, loving writers.

Even at a young age, the ability of Laura Ingalls Wilder to make me feel like I was living in the Great House in the Big Woods (where children would rejoice to receive oranges in their stockings), or of Louisa May Alcott to convince me that maybe having three sisters (at that point, I only had three sisters) wasn't, in fact, the worst thing in the world, seemed like magic. Beverly Cleary got me through some tough times with her Ramona, who was as much of a pest as I was, and poor Anne, out there on Prince Edward Island, trying to make the most of her dratted red hair and freckles, was not just a friend, but a true Bosom Friend to me. Probably, a lot of young girls - young, literate girls, anyways - could say the same. Even today, I'm pretty sure I could find an eight year old who - while everyone else is outside hooping and hollering (or inside playing Call of Duty, more likely) - is alone in her room, crying, because Amy just fell through the ice, and maybe Jo and Laurie won't be able to pull her back out in time.

But the summer I turned eleven, I fell in love with an author so inappropriate that even my grandmother - a fifth grade teacher and stout supporter of my right to read "anything you can get your hands on and your mind around" - was appalled. That was the summer I fell in love with Stephen King. Later on, when I got to high school, I would find out that boys had also fallen in love with Stephen King around the same time, but I didn't know that then, or that he had fan clubs aplenty and movie directors vying for his next, scariest Baddie. At the time, I felt like it was I alone who had discovered him, like he was writing just for 11 year-old, gawky, and often times completely invisible, me.

The book was It - not his most famous book, perhaps, but surely the cause of more than one person (including my younger sister)'s coulrophobia. It was around a thousand, tissue thin pages of absolute terror, which, had I known what I was getting myself into, I more than likely would never have started. In fact, although it was the first book that made me feel like I was on my way to being a grown-up, I only started reading It for the most childish of reasons - because someone told me I couldn't. Between getting the rare kibosh from my Nana and my older (male) cousin's insistence that there was no way I'd be able to read it the whole way through - because I was a girl, and would get too scared - I basically had no choice but to read it. And the thing is, I think King would have gotten that, might even have gotten a kick out of it: the whole 'I dare you, chicken/ this is forbidden' vibe. Of course, that's exactly the kind of vibe It wound up having, so sometimes, maybe, the book you pick picks you instead.

I remember lying on my bed, in the middle of a summer afternoon - windows open, cars zooming by, other kids outside running through the yard, every so often yelling at me to 'come and play' or taunting me for being a 'four eyed bookworm' (back when I wore my glasses just for close-up work) - reading this book. Knowing that I had to finish this chapter (or the next chapter, or the next) before the sun went down, because there was no way I was reading it in the dark of my room by streetlights that night. Something I would have no problem doing with any other book, certainly. I often think, now, that if I had known about Joey's trick of putting a scary book in the freezer, the pages of that first copy of It might have frozen off, instead of worn down over the years. And, while it was - by far - the most frightening thing I had ever read, that is not what kept me reading.

What kept me reading, aside from the hope that the scariest-ass clown in the entire universe would eventually get what was coming to him, was the people. A bunch of eleven year old nobodies, playing around in the overgrown wilderness on the edge of their town, ignored by just about everybody, brought together through a series of chances, and calling themselves the Losers. A real group of Losers, who were like kids I knew (hell - they were like the kid I was), who wound up taking on the biggest, baddest Evil of all time - a timeless Evil, even - with their slingshots and asthma inhalers and the knowledge that if they didn't do it, nobody else would. That's all they had - the idea that it had to be done, the certainty that nobody else was going to do it, and each other.

And the fact that the author - a grown-up - understood that sometimes kids have things that are so big, they can't tell their parents, or their sisters, or anybody who wasn't there and felt it too. That sometimes they do things that are so out of the realm of possibility of who they normally are, it's hard to imagine it was them. That kids have lives of their own, even at eleven, and that they have So. Much. Power. - the idea that King got that, and got it enough to write such this book, was like magic to me.

It still is - maybe even more so now that I'm a grown-up. Now that I have a nephew who is eleven, and I cringe to think of what his own power might have to be used for, or what his private world might consist of, and I see just how easy it is to pretend that it just doesn't exist. That kids are just kids, and not young people. It's amazing to me that anybody is able to remember that experience - and retell it in such a powerful, truthful way.

I quickly glommed all of his other books - I am a backlist whore, more often than not: if you write something I like, I must read everything else you've ever put down on paper - and many of them, particularly the short story collections, also became favorites. The Mist , is my mom's favorite, and it still turns up to tickle my brain on a day like today when the sky couldn't be grayer, and even the headlights don't cut through the fog enough to show you which way you want to go. I loved The Body , another story about kids and powerful friendships - and Stand By Me, the movie they made out of it, of course: I can't read it now without Richard Dreyfuss doing the voice over in my head. Pet Semetary and The Stand, Needful Things and, later Insomnia all sped their way through my head and into my heart (and my keeper shelves): the only King books I didn't immediately like were from the Gunslinger series, and I think that's just because I wasn't a fantasy reader when I read them: they're certainly in my TBR pile now.

And when he wrote his tome On Writing , the writer in me rejoiced. (And cried - my previously friendly relationship with adverbs had to come to an abrupt halt. I wrote that last sentence just for him. ) It is still one of my top two books on writing ever: it makes sense (King's writing style is both chummy and no-nonsense); it talks about writing as a J O B (not just something any fool can sit down and do, as some people might purport) that you have to get up and do every day, but also as "magic" (which is what it winds up feeling like, if you ever finish anything); and manages to balance the menial (grammar and editing) with the grandiose ("And if I am able, even briefly, to give you a Wilkes'-eye-view of the world - if I can make you understand her madness - then perhaps I can make her someone you sympathize with or even identify with. The result? She's more frightening than ever, because she's close to real.")

The majority of Stephen King's writing is creepy, sure. His books, more often than not, will keep you awake at night. And that's why I can go years without reading them - when things are already heavy, when your grandmother has cancer or your own body is betraying you yet again or when everything after "wake up in the morning" on your to-do list seems like an impossibility, it can be hard (at least for me) to be reading about other people's terrors and nightmares - I'm the kind of reader who looks for happy endings when I'm stuck in the middle, a shining light instead of more dark. But sometimes, that extra dark is just what you're looking for. Sometimes, even if you're not looking for it, it turns out to be what you need.

This weekend I culled through my (bookcase-sized) To Be Read pile, and pulled out one of King's latest, Full Dark, No Stars , yet another short story collection. (I think if I had known that it wasn't a full length novel, I would've tackled it before now, but that belongs in another story - about the overwhelmingness of my TBR pile - as opposed to this one.) It was a horrifying and overwhelming read, for one reason: because each of the stories was all too real. Almost too true.

There are four short stories, each build around a significantly simple premise -
You've killed your wife;
A short cut leads you very far astray;
There's a price to pay for everything (but you sometimes might be willing to pay it);
You never really know anyone, not even those you love the most

- and goes off in directions that only King could take them. The best part, for me, was - as I was fumbling for my sticky notes and trying to count how many pages until the end of this story, because could it really end this way? - finding out, or remembering really, that I am still in love with King. He's not my steady, any more: I find I need more happily ever afters as I get older - but he's still my guy & I'm still his "Constant Reader", and when the afterword comes (oh, how I love a good afterword, and King never disappoints) , I know that I'll be back again to see him sometime.

And even though I realize that he'll most likely greet me with some paralyzing glimpse into the darkness of my own soul - or down the sewers of any given city - I find that I'm more than looking forward to it.

*The Post title quote is, of course, from Stephen King, Full Dark, No Stars.

Saturday, May 07, 2011

More of other people's words

Before my *new, less than a year old* computer literally starts smoking (it smells like burnt hair), I wanted to say hey! But I have no thoughts, so I'm just going to share some of what other people are thinking instead.

“While people around me start to relax, I keep my eyes on the sea, waiting to be rocketed into it in a wave of fire. I’ll be ready for it to happen, and therefore it won’t happen. It’s a burden, being able to control situations with my hypervigilence, but it’s my lot in life.”
Tina Fey, Bossypants (the best book I've read in a while).

"there are your fog people & your sun people, he said. i said i wasn't sure which kind i was. he nodded. fog'll do that to you, he said. "
from Story People

“Sisters will leave scars on your body—and your heart. No one in the world can betray you with quite that eye toward perfection, and no one will ever regret it more.”
Barbara O'Neal

And because I need to remember it:
“Don’t look over your shoulder to see what relatives are perched there. Say what you want to say, freely and honestly, and finish the job. Then take up the privacy issue.”
William Zinnser, American Scholar, How to Write Your Memoir

Thursday, May 05, 2011

I'm only halfway through, but wanted to get something up

Well, despite all my good intentions, I completely missed blogging on BADD this year. I had a post all written, but was too sick to get on here to hit publish, or send my link to the lovely Goldfish. Now that I'm improving again, I'm making my way through all the links, and wanted to share some of my favorites.

And, by favorite, I find that (more often than not) I mean the ones that talk about the most despicable or moving or memorable abuses that people with disabilities face on a daily basis. A lot of these are also unfortunately, all to familiar to me, and to others with disabilities.

Under despicable, please file the unbelievable (or all-to-believable) but true story of Kimba, that Julia shares with us

You don’t even get a trial when your crime is drooling or not talking, when your sin is PTSD or autism, when the thing you did wrong was being born and then not quite meeting expectations. You just get put away.

(I can't post over there because I don't have Wordpress, but I just can't even express how Kimba's story has impacted me. It is heartbreaking and nauseating, and just... so horrid.)

Also see the things AngliKitten is doing wrong; Hannah's post about the accomodations her office refused to provide for her until it was too late to do her any good; or what Sue has to say about people who look away.

It's easy to get discouraged, reading all of this. It's easy to come away from BADD with a feeling of "why even bother?" I know, for me, it's especially hard to keep fighting when I haven't got the energy to do everyday things like brush my teeth or make it to yet another doctors appointment. Sometimes, I just have to step away for a little while, to take a breather. But I keep coming back because, whether I want to fight it or not, people are going to keep treating me and other people with disabilities differently, unequally, abusively. So I don't have the option of walking away permanently. Even if I did, though, even if I magically was all of the sudden no longer being discriminated against because of my disabilities, now that I know that other people are, knowing about it makes it my problem too. The reason there's a BADD, the reason I keep reading, and all of these lovely people keep writing, is because there's something to blog against. If there wasn't? Then we could all go on our merry ways, (off to fight another fight, most likely), and gather on May 1st to say "Look at that, it's all fixed!" But until then, it might help to think of it the way that Neurodivergent K put it:
They will fight for each other, but no one fights for us. I am tired of fighting, but I keep doing it because it's fight or die, and I am not dead yet.

Because we're none of us, dead yet. So we'll keep showing up, whenever we've got the spoons. (At least I will.)

For some slightly more positive BADD posts, there's Martha's post about thank yous; Fausterella's post on Being Vincible (and an ally); Where's Lulu's list of current TV actors with disabilities (to show that we are out there, sometimes).

Haven't made it all the way through yet, though, so I'll keep you posted as I come across more favorites. In the meantime, you can still read all of the Blogging Against Disabilism Day Here