" Is there anything worse than dress shopping? I would rather ...

have my toenails peeled off one by one with pliers than spend five minutes in the dress store."*


After a rather disastrous round of ordering, trying on & returning dresses, my quest for an acceptable dress to wear to my sister's wedding continues. Let me just say this -

- I am not good at clothes shopping, unless it is for baby clothes. I could shop for baby clothes for hours, happily. As opposed to what I've been doing today, which is shopping very unhappily for grown up clothes, also unfortunately for hours.
- I am totally judgmental about jumpsuits, and do not understand why they are 'fashionable' again. I will say, though, that it's probably just because they look really comfy, and I'm jealous that other people would leave the house in them.
- Although I am generally good at visualizing, I am particularly bad at visualizing how something will look on me .I have this sort of fake "what I wish I could wear" mindset, and wind up buying things that would never ever look good on me. This is evidenced by every hat I have ever bought, the existence of anything empire waisted in my closet, and the fact that I own a choker.
- On the topic of empire waists: Why do people, fashion type people, insist that plus sized women look good in these? Certainly there is a certain segment of the plus-size population that can wear these types of things and look great, but as a top heavy lady, let me just say: this style is not doing me any favors, can I please have some other options? When there is a very obvious line between where your boobs are supposed to be and where they're not, and that line falls somewhere in the middle of your actual boobs, it is not flattering. And yes, I have a great bra, and yes, they're where they're supposed to be: they are just too big to fit in the section you have assigned them. Now would be a good time to try something else, except 89% of what is out there is in this style, so that kind of makes it a little more difficult.
(Other variations on this theme include - Sleeves - Can we have some?; Belts - Now completely unnecessary!; Prints - Being fat doesn't mean I'd like to resemble my couch; and Colors - did you know there are more colors than black and blue?)
- I never got the "I must have shoes" thing ( you only get two feet, and I'm just not that interested in fashion), but given that I don't have to actually walk in any of the shoes I buy, I can pretty much go for the most outrageous shoe out there. This is actually pretty reassuring, as I look at the spiky torture devices the models are exhibiting in some of these pictures.
- And that turns out to be a less than fair trade-off when you consider that nothing looks as good sitting down as it does standing, and I'm going to be sitting down the whole time I'm wearing this thing. Nobody thinks that sitting makes that much of a difference in whether you look good in something or not, but let me assure you, as one who is sitting 99% of the time, it really does. Standing is slimming, it's allows for air to flow and the natural movement of the dress (in this case) to occur. Sitting scrunches things, makes you realize that the neckline is too high because you can't breathe anymore, squishes other things, makes things you wouldn't have thought of bulge in strange ways. Plus it makes everything hotter, because you're just sitting there sweating in it for hours and hours. Trust me - always sit in something before you buy it, you won't be sorry.
- I think online stores should have more reasonable return policies - you know we can't buy these things in store, for the most part, so why don't you have free return shipping? Why don't you have in-store pick up options, if you're going to charge me $17 to send me the damn thing and it's your fault your store doesn't carry plus-size on site? Grumble, grumble, grumble.http://www.blogger.com/img/blank.gif


That is my rant on wedding guest dress shopping, for the moment.... Now I'm off to try again. See if I can't find something that works. Although if you have an infant you'd rather I outfitted, I am open to and available for all distractions...

No? Nobody? Ok... fine.

Have a great, safe 4th of July weekend, everybody.


*
Little Manhattan

Ladies who lunch

Went out to lunch today with some of my girlfriends from college, and some of their kids. I had a pretty good time, but it was, as always, bittersweet. They talked about their jobs and their families, their moves and houses, and when it came around to my turn to update everybody, I just talked about all the things everybody else in my life was doing - getting married or graduating from college, moving in/out or heading to the 6th grade - as I had nothing new to report.

SSDD, Ladies. Well, Same (enhanced) Shit, Different Decade, honestly. It's frigging frustrating, for sure. But even with all of that, and the general left behind feeling that follows, I'm glad I got to go out for a bit, be around different people, people that I care about & who care about me. I got to meet new babies (4 and 1 year olds aren't exactly babies, but new to me, anyways), and talk about things that are not my family or my health, which is all I ever seem to have to talk about (as is evidenced here by recent posts, as well as lack of posts). And a friend who lives just down the road a piece volunteered to give me a ride home, so that was even better because I rarely get to go places 'on my own', and not having to wait for your mother to pick you up does help you feel slightly more adult.

Doctors always say things about getting out more, and making sure you have a social network, people you can count on, when you're living with chronic illness. And it definitely has its upsides, for sure. Tons of benefits. But I think they underestimate a) how hard it is to build that network in the first place and b) the toll it takes - not just physically, what with the energy you have to expend to be social and leave the house and all that (and holy jesus, I forget that leaving the house to see other people requires things like makeup and non-holey clothing) - but emotionally, to maintain it. It's hard to see them all moving on and going forward and to still, still feel like you're stuck. I am so sick of being stuck.

Anyways, like I said, it was mostly good. I'm trying to focus on that. Although I should have remembered to take a picture, because one of the girls is moving to Tennessee in a couple of weeks, and who knows when we'll see her next, but that didn't occur to me until about three hours ago, so what are you going to do?

Tomorrow the kids will be over, and I have no plans for what to do with them, but I'm sure we'll figure something out. We always do.

It was strange: There was a perverse comfort in inertia.*

So I'm having a bit of a hard time lately, and I'll tell you, it is not becoming. It's one of those times when there's a lot of stuff just underneath , and you spend a lot of your time (or at least I do), measuring your words and acts carefully, because you're sure that what's underneath could come bursting through at any moment, and that it would not be a good thing if that happened.

Some of the underneath stuff is not my own, just mine to figure out how to navigate - all of that fun (and incredibly high-pressure, fast-paced) stuff related to putting together a wedding with a bride who has a bit of difficulty making choices (and then sticking with them); the trying to incorporate the opinions of everysingleperson ever, apparently; and two sisters with a tentative truce and a still rocky understanding of each other who are trying to collaborate on about 400 different aspects of a wedding in a little over a month. So there's that.

And then there's all my under the surface stuff, like the fact that Soon-to-be Sister-in-law sort of decided that it wasn't worth it to bring the kids up here anymore, only she didn't come right out and say that so I'd get up in the morning expecting them and instead find a text saying no one was coming. Although we've renegotiated for the summer, and she told SisterJ that she did it because she thought bringing them up here was burdening us, I was left with a bad taste in my mouth and the feeling that all the effort and time I spend with the kids (because I want to!) is not really worth all that much to her, while here I thought I was helping to raise them for the past eleven years. I guess I am more hurt by that then I let on, even though I know she didn't mean to hurt my feelings, and that - in general - they both appreciate the time we watch the kids.


And, of course LilGirl will be starting kindergarten in the fall, so that means our twice a week commitment with her will be ending anyways, so I was trying to pack as much fun stuff into the summer as I could, because once school starts, we're all weekend sleepovers, and that's just not as much time. LilGirl is not the only one disappearing come the fall - SisterK will be in Iowa to go to grad school in August (right after the wedding), and has been off gallivanting on trips to England and Vermont since she graduated so that I have barely seen her.

I have an uncle, who I am not very close to but still love, who is suffering from cancer and seems unlikely to make it to through the summer, and it also seems highly unlikely that I will get anybody to go up to where he lives with me, (and once there, I'm pretty sure I can't make it into his antique cabin because of stairs). Hell, I can't even get people to walk next door for me to deliver a pie I spent three hours baking (squeezing lemons is not in my skill set), which is another issue simmering underneath everything else. It also turns out that I am eligible for yet another social service program, which might change both my financial contributions to the house and the responsibilities that my mom would have when it comes to helping me out. Unfortunately, our current working relationship is not working out as it is, mostly because she's not been in the best health either (physically or mentally), and it is making it so that I don't always get the help I need. Having this between us, when we are so close, is hurtful, because I wind up feeling both resentful - not that she's not well enough to do something, but that she insists she is and then it doesn't get done - and trapped - we depend on the money my mom makes as my PCA, so if I try to give some of her hours to someone else who could do some of the less personal, errand running type stuff, then I'm taking away money that our family needs; and I assume that she feels pressured and misunderstood, because I am just not ok with the things that are getting left behind. It's very stressful, as you can imagine.

Along with that are some new health issues - not setbacks, exactly, but issues - that have kind of shocked me, and left me unsure of what to do next. It is likely that my body (jokester that it is) is just playing tricks on me, but either way, it's starting to seriously complicate matters, and that is not appreciated. Not to mention, although I hate hate hate the analogy of the biological clock, that certain ticking numbers, including my age and hormone levels (never mind my single & sick status), are making me wish I'd gotten knocked up at fifteen, before I got sick, so that I wouldn't have to worry about it maybe never happening now. (And even just typing that makes me literally sick to my stomach, which is why I am avoiding thinking about it as much as possible.) And of course, every one I know is pregnant. (Well, two cousins, two friends, a zillion bloggers - it just feels like everybody.)

And, if you've been here any length of time, you know that when I'm avoiding things, I take up residence solely inside my own head. Where I can either choose to zombie out - play a few "click a lot and blow things up" games, reread a series full of happy endings, Facebook stalk - or swim in the muddle and try to salvage some sense. Can you guess which choice I have been making lately? If I told you that the Bridgertons are doing just as well as they were the last time I read their books, and that I have a new high score on Big Money, would that help you out at all?

Yes, I've been zombie-ing out, which includes, of course, letting the blog fall semi-silent because "what the hell am I going to say that makes any sense to anybody?" But, as is often the case, it just took me a while to get things into place, just enough, that I could write about them some. So here's some of the stuff that's floating around underneath for me, thanks for letting me vent a bit.

I promise tomorrow's post will be full of ... something else. Hopefully a good something else. :) Have a great weekend you guys.

*Jeremy Groopman, The Anatomy of Hope

Well worth applauding, I'd say

Last week, I turned 32. Those numbers still don't seem real, in relation to me, but I'm working on it. I'm thinking of throwing myself a big party next year, for thirty three, but I'm pretty sure that's another one of those things that sounds better in your head then it winds up being in actuality (you know, like pretty much every big party ever?), so for now it's just a 'thinking of'. I'm trying to be honest when I say that there were a lot of times I didn't think that 32 was a year that would apply to me - I mean, sure, when I was a little kid, thirty whatever seemed like "Ok, when I'm 3X I'll be a grown-up" and I had some vague notions of where I'd be and what kind of life I'd be living (read: nowhere near the life I am actually living right now). But in the past 10 years or so, as my diseases have taken more and more of who I thought I was, and presented me with a whole new set of challenges to face, there were more times than I'd care to admit that my thirties seemed to be a goal that I might not make.

And yet, here I am, two years into them. Still facing all sorts of challenges, still not where I'd hoped to be, but Still Here. Which is the most important part, when it comes right down to it.

For my 32nd birthday, I spent the day at my niece's first dance recital, which is - for me - a huge deal. Because I was a dancer for 13 years, and an assistant instructor for three years, and this is the first recital I've ever been strictly an audience member for. (Well, that's not actually true, I'd just rather forget about my other experience as a member of the audience: the year after I got sick, the year I had to quit dancing, I went to my former school's recital and tried to watch the show. I felt heartbroken, sitting there, barely able to walk unaided anymore, watching all my former friends dance the solos I would've danced and receive awards I would never receive and between holding back my jealous tears and the loudness of the music, I wound up with a migraine that left me incapacitated for the next three days. It was not a pleasant experience.) But this time it was different: I was there to enjoy myself, to cheer for Lil Girl, to clap at all the steps I knew were hard, even if they didn't look tricky.

Lil Girl did great - she had a big smile the whole time, she and I talked about being the tent-pole (the tallest dancer, middle of the line) and how it means you have to hold your pose the longest while you're waiting for the curtain to close, and we both watched the older girls dances with glee, so I hope this will be just the first of many recitals of hers I'll be willingly sitting in the audience for.

I also got to re-choreograph numbers in my head, and move things along at a better pace, and basically pretend it was my dance school's program, and how I'd make it better. (One of those vague things I thought I'd be doing in my thirties, if you'd asked me twenty years ago was operating a dancing school with my sister(s), just another one of those dreams that got put up on a high shelf a lot of years ago). Remembering years worth of selling wrapping paper and window clings and random candy bars in order to pay our way into competitions, I bought raffle tickets from the dance company girls, and won a basket full of coffee & other things I don't drink and quickly divvied it up between family members. I took pictures that came out blurry because you can't use your flash, and I remembered just how invisible the crowd seems from the stage when the lights are blazing in your eyes. And although I missed out on the post-show Chinese food, a tradition that even my brother remembered fondly ("Remembered? It was the only part of the whole thing I had to look forward to" was his response), I still enjoyed it very much.

It was a great way to celebrate a day I wasn't sure I'd make it to, and I'm still not sure I know how to deal with (numbers don't really matter so much, sometimes. Until they do. And when you're thinking of how much you want to be a mom, those numbers are all of the sudden much more important than they ever were before). And while all my brother could talk about (on the times that his little angel wasn't on stage, that is) was how much of a rip-off it was that the tickets cost $15 a piece and the costume was $65 and all some of the kids were doing up there was "playing ring a round the Rosie", I remembered how much fun it was to be the teacher in the wings, while the three-year-olds you'd been teaching for nine months, and you were sure weren't going to anything approaching an actual dance step, finally figured out how to link hands and make a circle. And, ignoring his statement that "clapping only makes it go on longer" , I applauded as much as I felt like it.

Here's one of the less blurry shots of our tent-pole girl, in all her glory:

I kind of hate bridal showers

So, Miss Janice asked me the other day who was getting married, and it occurred to me that I hadn't written about SisterCh's wedding since she announced she was engaged, last New Year's Eve. The reason for that is that it was, until about three months ago, a nebulous sort of thing - "We're getting married in 2012, so we'll be married before the world ends" or "We're getting married next year, when we've saved enough money" are both actual quotes regarding when the wedding would be happening. And then, suddenly, around April of this year, a near nervous-breakdown SisterCh came to the house one day and just let loose - Why weren't we helping her? Why didn't anybody care about the wedding? Why was she having to do everything all by herself? There was some other stuff, of course, because we are a family, and there's always other stuff, but this wedding stuff was mostly out of nowhere, for me, anyways. I told her that the reason nobody seemed to be helping with the wedding (even though I felt like I was doing what I could) was because it didn't seem like there was an actual wedding to plan yet: She had a sort-of date, but no real plans aside from that, and that I kept expecting her to change the date (for the third time) because they weren't ready financially. When she insisted that the wedding was happening this August 6th (as in less than two months from today) even if it meant courthouse steps and Little Debbie cakes, I let her know that I was totally on board to help out as best as I could.

So here we are, with a little under two months to go, and we just finished the invitations this weekend. And now, SisterJ (who has made miraculous and tentative peace with SisterCh, thank the lord) & I have to plan a bridal shower pretty much immediately. Ideas are easy - it's the follow through that's tough.

The other thing that makes it tough is that I find parties where grown-ups sit around watching another grown-up open presents for an hour or so boring, intimidating, and anxiety producing. I mean, I've never had a shower, but I've been to my fair share, and I know that no matter what, you're expected to open the gifts right there in front of people. Which brings us to Problem A and Problem B.

Problem A is not my problem so much as it is everybody else's, but they insist on making it my problem, which is annoying. I am a slow present unwrapper. On Christmas, I sit with my pile of presents and watch everybody else open theirs first, because I hate to miss anything. Then I start lifting the tape off of each end, and - without fail - at least one person will be complaining before I even finish that first present (sometimes before I even start opening that first present). When it's just my family, I figure "screw you" and do as I damn well please - unwrapping presents is almost as much fun as wrapping them, and why should I rush through it just to make you happy. Even so, I can't recall a Christmas where someone hasn't stepped in to 'help', and moved things along faster. But I think I'd be too self-conscious to take my time unwrapping in front of a larger group of people, who are all sitting there watching me, with no presents of their own to enjoy in the meantime. It would be wicked awkward.

Which brings us to Problem B, aka Why is everybody staring at me ? Seriously: at most parties, even birthday parties, there's a whole lot of mingling, a little bit of focused attention during cake cutting time (when it's dark, at least, while a roomful of people who can't really sing sing you a song as loudly as possible), and then more mingling and eating and then everybody goes home. Showers (baby or bridal, take your pick), are pretty much the opposite - a whole lot of undivided attention focused on that one person, broken up with occasional stupid games, nibbling of foods, or mingling with the people you're seated with. Too much eye of the storm for me, thank you very much.

And, thankfully, that is not a problem I have to deal with right now. Right now I have to figure out a date to have the thing, where to hold it, what to feed people, what to make them do while they're here. I have basically two ideas - a theme and perhaps the beginning of a family tradition? And I pretty much have to do all of that in the next three or four days, because there's very few weekends left between now and the actual wedding. So, I'm going to pin down SisterJ tonight, see if we can't get something started here.

Wish me luck.

And also feel free to comment on any non-boring bridal shower you've ever been to, because we could use all the help we could get.

Catch-up

I'm loathe to say that I am back, for fear that some other part of my (brand! new!) laptop will decide to commit Hari kari, but I did just want to check in. The tornado that hit Massachusetts yesterday was luckily not in our area - although we did have some pretty intense thunderstorms, which, under any other circumstances I would have called awesome, but, considering, have decided to stick with intense. Tornadoes are atypical in our neck of the woods though, so it's pretty frightening to think of how close they were and how they just decimated the entire area. I watched about .5 seconds of the news coverage today, but when they reported that a mother had died while protecting her toddler, I lost it and had to turn it off. It certainly made all my computer related nonsense seem trivial, though.

So no complaints here, just gratitude that everybody's doing ok, and that I get to catch up with all of my Google Reader friends very soon.

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.

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.

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

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

Getting ready...

Oh my goodness you guys, I just went through all my previous BADD posts, and they're all so negative. I'm going to try to come up with something more positive, but I'm in a pretty gnarly mood, so the rant I've got rolling around in my head right now might be it. :shrug: it's Ableism, it's not all going to be shiny and nice, right? Anyways, please consider Blogging Against Disabilism, this Sunday May 1, 2011. You can sign up here, at the beautiful Goldfish's place.

(PS - Spell check? If Unreedemed is a word, why isn't unredeeming?)

I spent the week feeling like I was in the middle of an ocean, floating and bobbing along, attempting to eat crackers and drink ginger ale without having them revisit me. That's what I get for trying new drugs. And now that that is starting to truly pass (hey: I ate real, non-cracker foods today... this is a plus! Except do you know what happens to your stomach when you try to put non-cracker foods in it after a week of crackers? It does not take kindly to the intrusion, I can tell you that!), I get to have huge emotional upheavals instead! Hooray!

Seriously. Sometimes I think moving to Australia* might be the wisest choice. I'm starting to think of aliases, see which ones fit me best. I don't want to talk about it again, right now, but suffice it to say that I have both cried and cursed more in the last 8 hours then I have in the last three years. Easily. If you are guessing that the drama is somehow sister related, you would be correct. You would also be correct if you guessed that there was no actual resolution (peaceable or otherwise) /conclusion achieved in the final analysis of the day. In fact, while I think some very important things were said, I'm not sure if any of the important things that needed to be accomplished were accomplished. But I tried. God almighty, I don't think I could have tried any harder, and that's all anybody can ask of me.

By "anybody", I of course mean 'anybody but me ', since I apparently am not satisfied with having done my best, but instead am upset that I wasn't able to achieve miracles and (our little) world peace while I was at it, but that's just because I am kind of a jerk to myself.

I am going to go and find something completely unredeeming to watch on television, or some cracktastic type of book to read, or a computer game that will devour my soul for a few hours. (Or perhaps all three of those things at the exact same time.) Anything to not be me for a little bit.


I'll check back in with you all soon, and hope your weekend is full of bright spots that don't include crackers or drama (unless crackers &/or drama are your idea of happiness, in which case, have at it!)


*Bonus points for all children's lit majors who managed to find the Terrible, Horrible, No Good, Very Bad portion of today's post.

Postage Stamp Island...

As much as my brother-in-law might laugh at me for attempting to rap (or, more accurately 'sing a rap song',) my current life resembles nothing so much as the line from Grandmaster Flash's The Message "Don't push me, cuz I'm Close. To. The. Edge. (I'm trying not to lose my head)"


My pain has been turning it up to eleven lately, following a couple of infection setbacks and my dumb insistence that I do not need as much down time as my body thinks it requires (because "downtime is boring!" ... So is suffering, you ass). Because of that, I am living with the near constant feeling that my muscles and bones are attempting to burst through my skin, as if I've taken some excess Skele-gro* without the accompanying broken bones. You know how on the Hulk (original TV show Hulk), his eyes would glow green, and then his clothes would start falling to pieces as he just expanded into this terrifying green monster? Yeah, it basically feels like that, complete with bonus "Hulk Smash!!!!#!@!" anger because who the hell wants to feel like that? It hurts to breathe, or move, or put clothes on - I literally cried the other day, when we had to leave the house and I had to put on a bra. (And yes, I know it is beyond stupid to put whether or not you look good over whether or not a piece of clothing makes you hurt so much you cry, but I can't get over it: Leaving the house without my bra makes me feel naked and not in a good way.) Sleep is a joke, because rolling over in bed is as dangerous as rolling through a field of landmines, and the other day I just got up and baked cookies at 2 in the morning because if I laid there for one more minute, I was going to flip out.

This is usually the point where my readers who don't have chronic illnesses say something like "Why don't you call your doctor and tell him/her that you're hurting so much?" And I appreciate the thought, I really do, but here's the thing: My doctor's know. They know, and it's not that they don't care, because they do - it's that they don't have the answer for me. They just don't know it. They keep trying - I am, in fact on my third new medication trial in as many months - but if you don't know the answer, you just don't. So calling them and telling them that I feel like the Hulk, it doesn't get either of us very far. "Give the meds more time to work" they say. Or "Did you take the narcotics I gave you - you don't have to be a hero" Right: because wanting to be present, even vaguely in my own life, is heroic. No - I am medicated to the gills, as much as I can be without just being completely out of it (and I can't guarantee that either, sometimes), but (so far), we just don't know the answer.

So there's that. But it's not just that: I feel near the edge on just about everything.

While I won't be homeless if the government decides to go offline this weekend (as I know some will), if it continues for any length of time I will be medication-less, which, for me is quite a serious condition. (I depend on my government to allow me to breathe: what do you depend on it for?) There's no way I could afford the $400 required for a 30 day supply of one of my medications, let alone the over a thousand dollars that would be their sum total - and that's just for the basics, not the 'optional' things like the stuff I use to treat my allergies or the cream I use when the allergy stuff doesn't work. Financial worries would start building if the government was shut down for any length of time, but that's biting off more worries than I need, at this point. But we're there - at the edge.

I'm at the edge with my family, with sisters who are so hurt and angry and frustrated/ing that I just feel like everything I do is wrong. With my mom who's obviously hanging on to her own edge, but won't admit it. With my dad who's having problems at work and thinks it's funny to come home early and say things like "I got fired." (Hint: it is not funny.) With pregnant cousins and non pregnant me, with sisters moving to freaking Iowa or getting married (with no plans, yet!) in the fall, and brothers who don't see the glory of their own children. With a grandmother who asks you for help picking out her funeral clothes when you go over to visit her, in the same breath that she tells you how well she is doing. ("It's not morbid: it's practical. I'm going to be 94." Well, let's be the opposite of practical, then, shall we?) With best friends who don't call or write, and with myself for not calling or writing.

I'm just so close to the edge that it feels like everywhere I turn, there's another edge. Like I woke up on an island, all of the sudden, instead of a continent. Like there's no place safe.

And yet, between me and those edges are little girls with curly hair who say things like "My tooth is loose, even though you can't feel it move," because the girl down the street got money from the "Tooth Bunny". There's 11-yr-olds who direct their own 60 second movie clips on low res digital cameras, that include such action packed sequences as "Fort elephante & how it crumbled!" There's three derpy fluffy bunnies made out of pom-poms and googly eyes, named KC, Sunshine & Band. There's meringue cookies at two o'clock in the morning, and the fact that I can make them sans recipe. There's the fact that the nurse at Zack's office, the much loved Maryellen, worked for five days to get the approval I needed for this latest medication, even though the MassHealth people were being assholes about it. There's Facebook statuses from people far away that I miss very much. There's the fact that my window is open right now, even though it's freaking April. There's all these words typed into little boxes all over the country that show up on my screen, right here on my bed. There's a lot of stuff that pushes me back, and I try to remember it.

The edges are still there though, and my island's getting smaller.


Print Available Here

*Shout outs** to Harry Potter, the Hulk, KC & The Sunshine Band and Grandmaster Flash in the same blog post? Yeah, I'm complicated.

** Using the term 'shout-out'? No, you're really not.

Cursed wombats are so loud!

Well, I took my pain pills at noon, and now it's about 4:30, and they're just kicking in. That's the short explanation of why I got almost nothing accomplished today. (I did manage to run out this morning for a blood test I needed to get done, so that's not absolutely nothing, it's just almost nothing.) All of the phone calls and errands and what have you will be postponed until another day, because I am not feeling my best. Now would probably also be an appropriate time for us to discuss why pain medications are so useless for my chronic pain condition, but since none of us (as far as I know) are chemistry geniuses, we'll just put that aside for now*.

Instead I've brought you some random internet interestingness, in case you wanted to know where my mind has been wandering lately.

First up, this Cracked article about "Seven basic things you won't believe you are doing wrong," which is not only curious, but quite informative. I was originally led there while digging up more info on deep breathing, but the other six (particularly that part about sleeping in segments) were intriguing enough that I thought I'd pass them along to y'all.

I've also found a ton of stuff in/through Pinterest, which, if you are not on there and do not have copious amounts of time to be sucked into gorgeousness, probably you should continue to maintain your distance. I'd link you to my pinterest account, but it has my real name, because I had to sign up through Facebook, originally and then FB friends starting following me, so I couldn't very well un-connect them. But here's one of my favorites from there, anyway: A lovely book nook:

Go here for some grammar nerdiness.

Wishing I were in New York for this weekend's Philharmonic performance of Company, with the most amazing cast.

And lastly, the blasted wombats (via Damn You Autocorrect)




PS - If you are a chemistry genius, could you please get started on creating something that works for my chronic pain condition? I'd appreciate it; K Thnx Bye!)

The WALL

There is a wall between me,






and Everyone Else.



And I don't know how to climb
it.

And I'm not even sure
I want to. (I want to)

But the wall just stays there, and sometimes I poke
at it, or
peel it back a bit.

And other times I ram it
as hard as I can with
the strongest object I can find.

But,
without fail, I build it back up again, sometimes
with my eyes
closed.

I am goddamn sick of this wall, I tell you.


And I think
I need better
battering rams.

Adventure-land

In a completely unusual and unexpected move, I actually got to leave the house tonight... SisterJ took me out moon - I'm sorry - Super Moon shooting tonight; we drove down to the beach, where it was flipping cold, chasing the super moon with our cameras. (We're about five minutes from the beach here.) The moon was humongous, and brilliant, and a little spooky, even, and I was glad to get the chance to see it in person (you know, not on TV or through the windows or anything).

Unfortunately, after about three shots, my camera batteries died, and although SisterJ had extras, her backup batteries also refused to function, but through some mixed up finagelling (one of hers and one of mine) I bought myself an extra ten minutes or so of picture time. We left the house without anything, really - still in our pajamas, but with sweatshirts (and it was much too cold for just sweatshirts, at the beach, ladies: what were you thinking?) and shoes. You know, the basics of leaving the house. Minus all of the things I almost never leave the house without - like my bag with my back up batteries & inhaler and meds and money in it. The kind of stuff that is a little bit important, maybe, you think? Especially when the cold triggers your asthma, you big dope? (Whatever: I was actually ok till we got back in the warm house, and then I had a little issue, but at least my puffer was close by at that point.)

SisterJ didn't even have her license - I don't know why - it wasn't like we had to hurry, but we just decided to go and went: there was very little thinking (and obviously no planning) involved.

And, like most photo sessions lately, I was left frustrated by my inability to get what I see in my head translated into what my camera actually takes. I definitely need to take a photography class - I'm just trying to decide if I can actually do one in person or if I should try an internet version.... we'll see. It's on this year's agenda, though, for sure. Because (as my camera's little red battery light started flashing before it died the second time), all I could think was that if I really understood F stops, I'd be able to get this shot without it being completely grainy and/or blurry. I mean, some of it is my point and shoot, which is about five years old now and more than one tumble off my lap/drop from a child's height past it's prime. It eats batteries like they're candy, sometimes the lens won't open fully, and without all the fancy lenses and options that DSLRs tend to have, everything up close comes out blurry, and everything far away comes out with so much fuzz I have to run it through three programs to smooth it out. But some people can take awesome pictures with a point and shoot - I've even taken some great ones with it, so I know that if I knew what I was doing, I could make any camera work out for me.

So obviously the majority of the problem? Is not found in my equipment, but in me. I can't get what I want in automatic, so I mess with the settings, but I just wind up getting even worse than what I started with. I know just enough to be dangerous, as my Nana would say. Not enough to actually get it, but enough to think that I kind of get it, and so can take things into my own hands. I definitely need some learning, and this year has to be the year, because I am finally starting to save enough money that I can buy me some better equipment, and I don't want to spend all that money and wind up with the same bad shots... I'm going to conquer the camera.

But it's so frustrating to me because, usually, I am generally a good book learner - I can pick up a skill based on something somebody has written down. I am great at studying and memorizing and all that stuff - but it is not doing me any good when it comes to the camera - I need some hands on stuff, and whether that means actual hands on, or following along on an online course where i can ask questions and stuff, I'm not sure yet, but this is not a skill I can teach myself for some reason, so I need to figure out how I'm going to learn it. Anybody got any good suggestions? I'm open.

I'm uploading the moon pictures now, and if any of them comes out even halfway decently, I'll let you know. In the meantime, have a nice weekend, everybody.
----------------------------------------------------------------------------------
In other news, I also want to say my good friend, who knows who she is, that following your gut is a brave and wonderful thing, and I know it will serve you well: I'm proud of you, and hope this will lead to only good things in the future.
----------------------------------------------------------------------------------

"... handing tickets out for God"

I started writing (one day last week) about the Jesus Freaks who stopped by with their version of the "Good News" and somehow wandered way off topic and started going on and on about how I used to be a Jesus Freak myself, and therefore I don't mean the term in any offensive way, but more in the way former band geeks talk about current band geeks or ex-goths talk about emo kids: You've been there, so you know, and almost feel a sort of kinship, but you're really glad you're not there anymore. I don't think there's anything worse for a believer than a former-believer: all of my sarcasm and surety that I was made a fool for so many years is always right there, and I'm sorry if sometimes it slips out. I try not to be patronizing - I really am glad for you that you still believe - but when they start trying to convince me, all bets are usually off.

So that's the way the post was going, and then I realized that I'd written that post before - multiple times. Yes: the Catholic Church and I used to be BFFs and yes; I could probably write another 17 posts about that, but that wasn't the post I sat down to write, so it wound up in the draft folder (like a million other posts: seriously - my draft folder is a scary place). And now I'm back, attempting to tell you what it was about the Jesus Freaks that pissed me off .

It took me a while to put my finger on it myself, but eventually it boils down to this: It is the sense of judgment I feel when they're telling me how easy it is to fix who I am.

Here's the thing: Remember in the fall, how when I was living at Grandmother's house, helping her with her post-stroke recovery, things here at home were progressing on the 'build a ramp so NTE can get into the house more easily' front? Well, now we have this beautiful ramp that's slippery as hell in the winter, and takes up our entire front yard but makes my life about 200 times easier. And yet: it is a beacon for the 'people of the Lord.'

While we were building it, a woman walked by and asked my dad what the final product was going to be. When he explained that it was going to be a wheelchair ramp, she said "I'm so sorry," then returned a few days later to drop off some rosary beads and a scapula she thought I might like. I found them on my bed when I came home for a shower that week, and my dad didn't understand why I didn't think it was the 'sweetest neighborly' thing for her to do.

Twice (that I know of) since then, we've had various forms of preachers come to the door: The first time, the guy was Mega-pushy, and I felt no compunction about not letting him in the house or giving him a chance to speak: I kept him on the porch, while he started his spiel about 'those who turn to Jesus will find a way with him,' and how 'putting my feet on the path would help them walk again.' I know that you all know me well enough that I can admit I was sorely tempted to just walk out onto the porch just to see the look on his face, no matter that I would've fallen down eventually, or that it would've hurt like hell: I still am kinda sad that I didn't, because the "OMG: I AM TOTALLY WITNESSING A MIRACLE" moment would have changed one of our lives forever. ( I know, I am damned to hell, so I might as well enjoy it, right?)

This latest preacher though, was a very nice gentleman (and he came with a silent friend), and he specifically said "I don't want you to let us in, I'd just like to tell you some things, if that's alright with you. " Well now, I'm not a heartless bitch, so I opened the screen door and gave him the ok, give me your best lines, preacher-man, and I promise not to laugh. (Again: I'm good with you believing, but once you're trying to get me to believe, I can't promise that I'm going to be able to hide my skepticism.) So he starts off pretty swell, talking about God's willingness to help people, and how it was his job to try to find those that most need God's help and bring them his Word.

And then this well meaning fellow, with his quiet and (I could honestly tell) earnest sense of caring starts talking about miracles, and Jesus making the blind see and the lame walk, and I'll tell you. it took everything in me not to slam the door in his face. I just - can't hear it. I just... I don't even know how to explain how badly that makes me feel, how irritated it makes me just to hear it.

Just to have that experience of - once again - being a person, going about their normal day...I was making breakfast when the doorbell rang, playing with my 1 yr-old nephew and chatting with my sister... when all of the sudden someone interrupts your life to tell you how you are just not right, just not good enough the way you are, just not the way a person should be. I am not saying that that is what he said , because, again, he was kind of a sweet guy, but that is the way he made me feel. I had to sit there and be irritated and frustrated and ashamed, all because - in society's eyes, and I guess in 'God's' eyes too - there was something about me that was just wrong. Something that called for miracles and saving and the power of God.

That me, just being me, requires the intercession of God on my behalf, in order for me to be fixed? Pisses me the fuck off, I gotta tell you. Of course I wouldn't thumb my nose at a miraculous healing, should one decide to take place, but you know what? I'm not broken right now, or maybe I am, but not in the ways that you think I am. And if I am it's none of your damn business... I'm not asking to be saved just by virtue of living as who I am. Just by having improved my house to the point that I can finally get in and out of it on my own, I'm not giving you the right to comment on my life.

It's something I get a lot of, in a lot of random ways: people who see me 'walk' the steps to my chair and tell me I'm not sick enough to the handicapped parking placard, or strangers who tell me they'll pray for me when I'm out in public. When you're visibly disabled, everybody's got the right to comment suddenly. I didn't ask you for your opinion on what I'm eating - the fact that I'm having a cheeseburger is not in fact the reason I'm in this chair, but thanks for telling me all about how you stopped eating meat and your rash went away. I don't have to justify my applying for aid to some arsehole cousin who thinks that all social welfare programs are tools of the Communist Party, and I'm lucky that I get to spend his "tax money" on my "frivolities."

All I am trying to do here is live my life, and as nice as that preacher was, when he left behind a scripture for me to read and "think over with your heart", I was all too glad to close the door behind him. I appreciate his belief that I could use some blessings (because, holy hell, yes, I could use some blessings), but I don't like the assumptions he made about who I am, or the life I live, in order for me to earn his blessings. It feels like pity. It feels like ableism. It makes me feel like less than.

So I know I won't be opening the door to any more preachers, because their blessings tend to feel like curses, and I have enough of those. I'll take all the prayers and warm thoughts and fairy dust you want to send me, but don't assume that I need them because I'm in this chair... I'd much rather have a family that was kind to each other than a body that worked correctly. Or a baby that I knew I could provide for. Or an understanding of how to be happy, regardless.

I'd like to be healthy, sure: but I'm living my life the way it is, and that's not sad, or in need of fixing, or less than anybody elses, so don't make me feel like it is.

You know what I'd like...

oh, about a million and a half things that aren't really things, but more like feelings. A million and a half positive feelings, that's what I'd like.

I'd like to be able to take a deep breath. And trust that the breath is going to go in the way it's supposed to and come out the way it's supposed to. Just to not have to doubt that.

I'd like to be able to leave a room without worrying about all the people I left behind in it. Or to not have to leave the room in the first place because of how uncomfortable I am.

I'd like for the words to flow, not get stuck up in my brain. Sometimes it feels like there's a clot there, a big negative clump, blocking all the good things from getting in, and all the good things from getting out: I know there are good things, but they rarely mean what I want them to mean.

I'd like to just be able to shut off the worry, for one goddamn day. Just all of it - off.

Hope you're having a good weekend - mine has been a little complicated (ugh), but I hope to be back soon!

A book recomendation

I just finished reading Raising Children Who Think for Themselves by Elisa Medhus, M.D., and it was incredibly thought provoking. I didn't always agree with her approaches or suggestions, but the main theme of the book - that children should be learning (through discipline, their environment, our role modeling and other means) to evaluate and assess their own behaviors, internally, based on their own expectations of themselves (that we've been teaching them) rather than external (either parental or societal) expectations of them.

In other words, kids who think for themselves. She raised a lot of interesting points, and provided a lot of practical examples of how to "guide, then step aside." I was really impressed with her knowledge of kids motivations for certain behaviors - and how to best guide them into turning their attentions in more positive directions.

I was, of course, horrified to see myself (or family members) in some of the more negative portrayals, because I know that the reasons we've done certain things have always been with the best of intentions, but the (often negative) outcomes are so easy to see when they're on paper like that. I recognized myself most when she talked about how often we step in to spare our kids (or, in my case, the nephews and niece in my life) from suffering & therefore eliminate their chances of learning from mistakes or problem solving their way out of them. I've noticed lately that I've become a 'warner' (my term, not the author's): I'm constantly saying "Maybe it's better if you tried it this way," or "do you really think it's a great idea to balance all of those dolls in one trip, why not make two?" Why not just shut your whore mouth (sorry: If you're not a Prankster, that probably seemed like it came out of nowhere, but I've been reading Aunt Becky a lot lately, and couldn't help myself) and just let the kid figure it out on their own? What's the worst that could happen? She drops the dolls and has to make clean up the mess? The horror! So I definitely recognized that I have a real need to step aside and just let them learn on their own - The worst part of this whole thing being, obviously, that I am a teacher, and know this already, so how did I get to this point of having to open my mouth all the time, but if I'm going to teach them to be willing to recognize when they've made mistakes, I have to step up and recognize my own as well. That's a problem area for Auntie NTE, and will be addressed posthaste.

So much of the strategies that Medhus proposes in her book are not new to me, but the practical parenting examples she incorporates into the text really made me think about how I am applying my training (and where I am failing to apply it), and how often, in the heat of any given situation, discipline doesn't stay true to it's logical guidance roots and instead turns into a form of punishment or control. It's easy to forget, when a four year old is throwing a tantrum in the store, that their problems are their problems, and I don't need to make them mine.

I will give myself a lot of credit for being the "this is unacceptable behavior" line draw-er in our house, but it's kind of hard to hold the line when there isn't a lot of follow through on the part of other people. After all, I am not these kids parents: They have awesome parents who love and care for them. But when the rules are so much different at Grammy's house then they are at home, it's hard to keep the behaviors that I consider unacceptable (whining and nagging, bickering and meanness) from bleeding over: Kids are going to get away with what they can get away with, and trust me, the kids in my life are no exception. So we have a little issue with consistency, and I know that doesn't help them to internalize things, but I'm really going to work on it for my part (and see if I can't convince my brother that he'd like to read this book as well).

Aside from "guide, then step aside", some of the other concepts that the author did a great job of explaining include the need for using guiding questions to help kids arrive at the right answers; the benefit of empathy in creating kids who aren't just focused on their own needs, but on the lives of those around them; the idea of respecting failure as a key step towards growth and that personal excellence is greater than perfection; the need for all consequences to arise as naturally as possible from a given behavior (and to be logical); and the vital role that adults play in modeling appropriate behavior.

It was all reasonable, common sense stuff, and it was presented in such a way as to not be overwhelming or tell you what a horrible job you were doing raising your kids: in fact, it was an optimistic and enthusiastic book whose title really reflected its overall goal - you can make changes in your behavior to help your kids make lasting changes in theirs. You can have kids who aren't motivated by whether or not they're going to be punished for doing something wrong, but rather on if something feels wrong to them and how important it is for them to follow that instinct. There are so many strategies for helping children gain confidence in their own decision making skills, in their ability to recover from mistakes, in their intuitions, and in their ability to do what's right when they recognize it.

I thought it was a worthwhile read, for parents and teachers (and aunties ;) ) because it helps you clarify what your intentions are as you raise your kids, or as you contribute to the raising of children: I know I want the kids in my life to be able to make their own choices and find their own ways in life, to be able to recognize happiness in whatever form it takes for them, and to have the courage to reach for it (regardless of if society says it is something they should strive for or not). I want them to be able to think for, and act, and believe in themselves, and I'm glad that I've got some more strategies to try in order to help them achieve that.

Thanks a lot, Oprah, for blowing my cover.

Maybe it's just me, but everywhere I turn on the interwebs lately, people are talking about Internet anonymity and how it's truly a farce. How there's no such thing, and you should never write anything on your blog that you wouldn't want broadcast on the evening news. How easy it is for people to find out who you really are, and any attempts at anonymity are both fruitless and delusional.

Cue intense fear and current radio silence here at Never That Easy.

I mean, I know that what I write here is not secret, but, back when I first started, I thought it would be impossible for anybody I actually knew to track me down. This is not because I am any great whiz at the complexities of Internet anonymity, but more because I am stupid: I was using my own, very first ever and totally known by everyone in my life e-mail address, and - as I found out when one of my sisters did find me - this site was the Google search result of entering my e-mail address. Talk about naive. (Although, in my defense, I couldn't imagine that anyone in my family would actually be bored enough to put my e-mail address into a search engine, but it turns out that I had obviously underestimated the extent to which certain people would procrastinate at boring office jobs.)


I have since published pictures of just about everyone in my family and written posts with enough identifying information that there could be no mistake - if someone who knows me happens to wander past, then they will know it is me. Which made me start wondering if I should just stop trying to hide behind the three initials, and start using my own name.

It made me wonder that for about .3 seconds, anyways.

I admire people who write under their real names, or even pseudonyms but you know who they are in real life (Dooce = Heather, for example), but I am just not ready to be one of them. I had a horrible nightmare a while ago that Oprah used one of my Internet comments - a comment I am particularly proud of because I managed to say what I wanted to say and avoid the Internet trolls at the same time, which you might know is particularly difficult on some sites - in a show about the topic we were discussing (budget cuts and Planned Parenthood's cuts, specifically). And when she read the comment, behind her on that big screen, she showed a picture my site. And she mentions that I am a blogger with a chronic illness, and you can read more of what I said at the site name.

And of course, in the dream, I am watching it with my mom, who is not focusing 100% : like me she's a TV multi-tasker, so she's usually on the computer or crocheting while she mostly listens to what's going on. And I am breaking out into a cold sweat, and trying to not show that I am panicking and - here's something you all don't know about me, because we haven't met in person, but in person? I am a horrible liar.

Everyone in my family agrees (although I don't, because I can keep secrets, which is a form of lying, so there) that between my not being able to make eye contact & a dislike for lying on a whole, I am served particularly unwell when presented with the task. I mostly get a lot of "Why do you even bother trying to lie?"

So in the dream, trying to hide that I am going to throw up because there is my baby picture up on Oprah's show (and while many other people might not recognize my baby picture, which was good thinking six years ago when I was trying to pick a damn avatar), my mom certainly would, so I must keep her from looking up.

Thankfully, since I sleep like crap, I woke up then and got to obsess over the dream while wide awake and tossing and turning. And all I could think of was that instead of being proud that someone had liked what I had written well enough to quote it, and to say to other people, 'hey, check this out,' I was so worried about my family knowing about the site that I wanted to throw something at the TV just so she wouldn't see my picture.

I think that shows a certain reluctance to embrace the openness of using my own name, how about you?

I've definitely said some things here that would hurt them, and I don't have any interest in doing that. I've definitely said some things that they wouldn't understand or that I'd rather not have to defend to them. It's just more drama than it is worth, basically.

So I'm going to keep writing, and be proud of what I'm writing, but I'm also going to continue keeping it to myself, because, as much as I love them, I love this too. And I wouldn't write like this if knew that when I went into the kitchen, people would be discussing and dissecting it. I wouldn't write like this if I had to keep thinking about whose reaction I just didn't' want to deal with. And if/when anybody else finds me, I will deal with that, and hopefully convince them it's in all our best interests to keep our mouths shut.

I figured it was time

for an update to my family tree link, so that if people are interested, the information is centrally located and clear. So here's the deal

Me, NTE age 31, chronically ill auntie and educator, currently living with my parents and one of my sisters and her husband.

My Mom & Dad , ages undisclosed (because if they ever find this, my mom will want it that way), who own the house I'm living in now, and have been together almost 30 years now. My mom is also my bosom friend and my Personal Care Attendant, which makes our relationship a tad complicated. My dad, well, he's a hard worker, a fabulous cook, and a lot of other things both good and bad.

SisterS is going to be 35 when November rolls around, and she lives in Cow Hampshire, about 2 hours away. She's lucky enough to be the mama of my wonderful oldest and youngest nephews, Oldest Nephew who is 14 and actually enjoying his freshman year of high school, and BabyB who just turned one and has more energy than everybody else on this list combined.

Big/Only Brother will also be 35 this year, and he's the partner of Soon to be Sister-In-Law as well as the daddy to two of the most fantastic children ever: NephTwo (who's turning 11 this May), and LilGirl, who is 4.5, going on 14.

SisterJ (otherwise known as the Sister who reads this blog, because she managed to find it a few years ago and was nice enough to not sell me out) is turning 28 in two days (Happy birthday girl, you are still not 29!), is awesomely crafty and sweet enough to live upstairs with my excellent brother-in-law BrotherlyK (who hasn't had a name until now, because I always just say my awesome Brother in law).

SisterCh moved out this spring and into an apartment with her fiance, and by the end of this year I will probably have a new brother in law, so we'll call him BrotherlyS. SisterCh is lucky that I have not renamed her the Cat Lady, because in the 9 months since she's moved out, they've accumulated four cats and they all have outfits. Many, many outfits.

SisterK is our baby sister, but we probably can't call her that because she'll be graduating from Harvard this spring, and you can't really call college graduates baby, can you? She's majoring in poetry and English and some sort of humanities, and has no idea what comes next, but who does, really?

You should also know about Grandmother who is 93.5 and beyond awesome, although unfortunately ailing as of late; Nana my other grandmother, who passed away three years ago and still has a huge place in my heart and in our family; and My Daddy , who will be deceased 12 years this July, my father was in the Navy for most of my life, and (unfortunately) an alcoholic for a lot of that time too. (But that doesn't mean I don't miss him.)

That's the basic outline of who's who here in NTE land: I appreciate you taking the time to find out more about us!

NephTwo

Yesterday's life was full of nothing in the morning, a long game of Life Twist and Turns in the afternoon, a little Addams Family at night, and reading an outdated atlas with one of my favorite, favorite boys. I loved how he was able to identify just how out of date the atlas must have been to include things like the USSR and to exclude all the -stans. Never mind the half of Africa that was all confusingly different. Today we compared a current world map with the atlas from 1984 and we came up with 34 new or differently shaped countries in the past 27 years. That's pretty outrageous, especially considering that I was alive for all of those 27 years, and I knew about maybe 10 of them off the top of my head. (Germany as opposed to East/West Germany and the USSR being the major ones.) It was one of those experiences, though, that made me wish I could homeschool him, instead of him getting sent to public school: it was just such an authentic and child directed learning experience, the kind teachers are always searching for but the harder you try to manufacture it the further away it goes.

NephTwo (As I've decided to call No Longer Youngest Nephew) is such a smart kid, and he's genuinely interested in so many diverse subjects: When he was a baby it was cars, to the point where he'd point out the window and name the type of car and I'd have to say "Yes?" because I knew nothing about cars. At all. After that, we learned about dinosaurs. And not just "Oh, this is a T-Rex" kind of dinosaur learning, but "Well the Oviraptor was called ovi because he's an egg stealer and ovi means egg" and "All the ceratops named dinosaurs were herbivores which means they only ate veggies, which I don't like." When he was 2. Dinosaurs lasted for a good long time, and I had to memorize more than an entire era full of creatures that I really had no interest in.

Somewhere around the same time, he watched A Night to Remember with his Grandpa, and it lit something up in his brain. All of the sudden we had to learn about ships. About the Titanic specifically, but about any ship that ever sank. I had happened to go through a Titanic phase myself, way back when - when the original National Geographic documentary aired, my Nana taped it off the TV and we watched it over and over again that summer. I don't know why, but it sparked something in the seven-year-old me, too, so I was kind of excited when NephTwo was so interested in it.

Of course he was only 2 or 3, so we had to adapt somethings along the way. We read Robert Ballad's Discovery of the Titanic, and learned about the Knorr 's search and how Alvin and Jason Jr managed to get down there and take pictures of the wreck. We saw all the pictures of broken china and suitcases covered with algae, shoes with no matches and bathtubs encrusted with rust. We watched any version of the sinking that we could find (fast-forwarding through the little naked parts in the Winslet/DiCaprio version, of course). He managed to learn all the details, and would often play "Saptain Smith" and order everyone into our lifeboats, being a stickler and not allowing his dad on them, because he was not "a girl or a baby". He would recite the tragic tale to all of us, every day, or, if we were out and about, even to people in lines at stores.

Eventually, the Titanic wasn't enough, and we had to learn about other shipwrecks and sea disasters.
I ordered a ton of books on shipwrecks off of Amazon, and he surprised our local librarian by reciting all the facts about how the "Californian was there, but they thought the rockets were for happy reasons, and so they didn't come, and then the Carpathia showed up and fished out the people in the icy cold water" when we went searching for even more information. He knew about Titanic's twin sister, Olympic, and the Stockholm and the Andrea Doria. He knew about underwater mines and missile strikes and the dangers of drifting in the fog.

After the shipwreck stage came trains (and Thomas the Train specifically, and let me tell you I did not enjoy that nearly as much as the ships), then space (he used to build little models of the galaxy and memorize the order of the planets and how many moons they had. He was crushed when Pluto lost its planetary status), and then, eventually his interest shifted to things on our planet. The geography of the world, the history of certain places, which countries did what and whose land was in a cold area and whose land had oil and which groups of people didn't necessarily get along with each other.

The geography thing has been high on his list for a few years now, and during most of our sleepovers, he drags out the giant world map we found at Costco for $3 and and DryErase markers and redraws the boundaries of the world. Sometimes he expands the United States into a true empire, conquering Canada and absorbing Europe; other times he usurps Mother Nature and decides it will snow in the desert and freeze in the tropics. Often, he tests my knowledge of the world, making a game of matching flags to countries or having me guess the capitals of places like Djibuti and Honduras (stuff I used to know, but my brain now protests trying to remember). It's amazing to watch him interact with the world this way, and it makes both the auntie and the teacher parts of me gleeful.

Today's experiment in finding the differences between the way the world looked when that book was published and the way the world looks now was only the beginning: We wound up talking about the revolution taking place in Egypt, and the recent voting in the Sudan on divvying up their country. (I swear, knowing that he will ask these type of questions is half of the reason I pay attention to what's going on out there.) He told me that he knew more than his teacher about something we'd been discussing two weeks ago when he was here last, and how the teacher had to Google it to check if he was right. How awesome is that?

Anyways, I've been doing a lot of (probably necessary) complaining about and assessing of the current status of my life, so I thought it would do me - and my loyal readers - some good to remember that I've still got some pretty bright spots here and there.

And this boy (seen here with his super ball version of our galaxy) is definitely one of them.

Snow what?

Welcome to our Second Annual Random Eye Infection Week! This year with added "oh, well it could be related to your shingles" action, and, for the very first time, now including special "It's the 'Snowmageddon' so you must a) come in every single day and b) find an open pharmacy that has this drug that no pharmacist has ever heard of before" complications!

Woo freaking hoo!

I hate having to put yet another sad depressing poor-me post up, but this is where I am right now, so what good is a personal blog if I can't complain about it a little bit? On the upside, I actually got to go out in the snow, which I haven't done in forever, and that means that I - in stark contrast to just about everybody else in the entire Northeast - really enjoyed being out in the snow. I always did: it's got a kind of a hushed, secretive aspect to it that I appreciate. It feels like the rest of the world is as isolated as I often am, and, in a weird way, that makes me feel more connected to everybody. It's difficult for me to get any place, what with the wheels and all, but sitting outside for a little bit this morning while we waited to see if yet another drugstore would have the eye drops I needed (nope) was a nice change of pace for me. The entirety of Massachusetts may be sick to death of the snow - which is too bad because we're supposed to get another foot or so before this storm moves out on Thursday - but I liked it.

Sure, there are some real drawbacks - I miss my days with LilGirl - this is our third day without her in a row, and Thursday ain't looking too good either - but since I can only half see things anyways, maybe that's for the best. SisterS, who lives in New Hampshire, in the middle of nowhere, was complaining about the snow up there today, on her Facebook page. But at least they've got lots of places to put it... around here, the streets have gone from kind of narrow to simply straw-like; there's not a whole lot of maneuverability on the roads. Which works out ok for me, most of the time, because I don't have to go anywhere. Until I have to go somewhere, like this morning's eye doctor's appointment, in which case I feel really bad for everybody who's got to dig me out and drive me down there, even if, on a good day, the office is less than 3 minutes from here. (Today it took us 15.)

I tried to take a picture for you guys of the beautiful snowfall and all of that, but I have one eye that I can't open and one that was still recovering from having bright lights shone in it repeatedly (Off topic a bit here - does that make anybody else want to fall asleep? As soon as she started shining those lights in my eyes, I was so drowsy. Note to self: maybe the cure for your insomnia is bright lights in your eyes), so I didn't wind up with the clearest picture. None the less, it'll give you some idea of how things look around here, I hope.




If you're having some snow, I hope you're enjoying it. Or, at the very least, having a cup of hot chocolate because of it. (mm... marshmallows...)