And then I fell over... backwards

If only that title was a movie reference or something. Nope: I literally fell over backwards. About two weeks ago, we took the kids to a local low-key amusement park, I got out of the car and into my chair, put my front two wheels up on the curb, thinking that Mum was right behind me, lifting up the back two wheels - like we do a million times, all the time - but she had turned back to the car instead, and I somehow lost my balance, tipped back, slid up out of the chair a bit & my head and upper back met the concrete in an intense and immediate way. Besides being shocking - What the what??? - and completely embarrassing (although some very nice older gentlemen came rushing to help and made lots of jokes about revoking my license and ha ha, not uncomfortable at all!!!), it was.. majorly painful. "Majorly painful" is, in fact, the most definitive of understatements, but since I can't think of an all encompassing word for how bad I have felt since then, it will have to do.

After a few hours of trying to be in total denial ("I'm fine; let's go play skee ball!!) and downing both migraine & pain meds, I realized that I was in fact doing the opposite of fine, and I got myself all checked out at the ER. Where a snippy nurse tried to insist on getting my weight (No: I do not stand up well on good days, today is a very bad day, screw off, sir and take your "but you look fat to me, so I have to know the number" attitude with you); I got to spend a few hours looking at screwed up wall murals and trying to figure out if if it was me or them that was off (It was them); and a very nice doctor ran me through the CAT scan, pronounced me mildly concussed and apologized for the fact that fibro + fall = major suck, and sent me home.

Where fibro + fall has, in fact, equaled complete and total suckage. Although I was kind of shockingly unbruised, the part of my back that hit the ground has been untouchable. As in, I've been wearing button down shirts backwards and unbuttoned for two weeks, keeping my door closed so I can be a lay around Lady Godiva, because holy hell clothing is not allowed to touch that part of me. I've attempted attacking with every painkiller in my arsenal, but it's not doing much. That's not true: it's helping more now, but those first few days, it was like I was taking baby aspirin, or sugar pills, or swallowing pieces of paper, for all the good it did. I never even felt them. My back/neck have always been my most sensitive spots, but there have only been two or three times the pain has been this bad - mostly when I've been sick or flaring in other ways - and never due to something that I had done to myself. It's not exaggerating in anyway to say that I am not sure how I got through those days. Those first three days, there wasn't a person here - it was all just a big pulsing block of pain - I don't even know.

And then, when the pain had dialed back a bit just enough that I could put my eyes on a piece of paper and focus on them, I took myself as far away as I could go, and wandered through all 40 or so (the ones I have here) of J. D. Robb's In Death series. Started back at the beginning of 2058 with Lt. Eve Dallas and all her cohort, and tried to live with them through the next three years or so of her life, so I wouldn't have to be in mine. I know I talk about reading a lot, and how important it is, and it gets to be all blah blah blah books, but if I didn't have a place to escape to, if my mind didn't have a chance to just shut down and follow Dallas and Peabody and all the rest through their cases and humor and horrors and becoming a family, if I couldn't escape the pain by going there, or to Hogwarts, or to Avonlea, or Concord during the Civil War - I don't think I'd still be around to live through things. And that's just plain truth.
(Also honest truth? If you haven't read the In Deaths, you are majorly missing out ~ can not recommend them enough!)

I'm doing better now, tiny bits at a time - still avoiding shirts at all instances (which is not me-like at all, I must confess, and feels incredibly odd) and popping whatever pills are left in my stock, but bit by bit, getting better. It's still complicated since I can't lay on my back, and I can't normally sit up for too long anyways, and either side has time limits on how long I can lean on them, so it's complicated, but it's improving. Talked to a couple of people on the phone, so they would know I wasn't dead. Checking back in here, and in other online spaces, to see what I've missed. Reading voraciously through my poor neglected Google Reader. Actually turned the TV on this morning - before the noise and mess and lights and all that were too much, too confusing - to find a 98% filled DVR: unacceptable with new seasons starting, missy. So I'm battling back, and I just wanted to say hey!

And to remind everybody about the Disability Blog Carnival, hosted here, by moi, in just a few weeks. Keep me busy people ~ Help me catch up on some posts that I've missed!

Being Seen (pt1)

A while back, when my sisters were still fighting (and oh, what a miraculous, fragile peace has somehow bloomed there, and oh, what a frightening and vivid relief it is), one of them found the other's blog. The blog in question was semi-anonymous, in that I knew about it, and her husband and some friends, but she never really said to anybody "Hey: I am writing a blog - Why don't you come check it out?" Well, through some confounding sort of linkage that I am unclear on, the blog was discovered by the sister she was arguing with, and, of course, there were some ... unflattering things posted about her there. Later, in one of my many, futile peace-brokering discussions with her, she brought up something that had been written in the heat of anger, saying "If you can write something like that about someone, can you really love them?"

That discussion has had two clear impacts on my blogging - First, I've become more frightened than ever that some casual linkage, forgotten signout, or dropped conversational hint, will bring my anonymity here at NTE to a close. It's a terrifying thought for me, since I know that as myself, without the slim protection my pseudonym provides, I could never be this honest. Aside from the fact that I've opened up hidden parts of myself and shared a lot of things here that the people in my life would be quite surprised to know, I've also written more than one post in the heat of anger, said some things I would regret if they were read by the person they were written about, and what I've written would be sure to hurt some feelings.

Which brings us to the second impact - that fear of being found (which I know I must be, eventually, and here I am, coming up on 6 years blogging) is acting as a very real barrier to the honest writing I've accomplished and been proud of here. I find that I'm stumped, wanting (as always) to say what I want to say, knowing that it's my truth (even if it's only my truth in that moment, and changes immediately afterwards), but temporarily lacking the courage to accept the consequences that will come about when my anonymous bubble is burst.

The clearest example of this is the sister who already knows about my blog, and has (thankfully, sweetly, fabulously) kept it to herself for however many years she's been reading: I know there are times when I censor myself - what I'm going to talk about or not talk about, how I'm going to say it, whether I add the pros to a piece that started out more as ranting compilation of cons - because I know she's out there, among my proverbial audience. (Even though, in all honesty, I've seen her Google Readers - she has two! - and I'm pretty sure she's a zillion posts behind.... Hi SisterJ: How's January of 2013 treating us? Did we survive the Zombie-pocalypse? ;) )

Between this element of self-censorship - the fear of how others will feel about what I've said about them - and the fact that everything I want to talk about lately is all part of a big sticky, jumbled up mess that my brain just laughs at instead of trying to make sense of, I was pretty sure that I was going to be shutting down the blog - at least for a while, and maybe permanently.

It was not just that, though: It was everything - It was because every time I come I see that the footer banner is 2 years out of date, and I'm sick to death of the color scheme, and I don't have the energy to re-vamp the whole thing right now. It's that I've already said everything that could ever be said about the power of books and the suckiness of living with chronic illnesses, and I have maybe 7 readers, and aren't they sick of listening to me already?

It was a lot of bullshit, really. A lot of excuses I was letting myself get away with, because I was too scared to come here and say I was scared. That I'm stuck: again: Still. (seems like) Always. It's the reason that my last post was the easiest, and most honest thing I've written in months: because the reasons not write, not to post, not to share are always there, and wouldn't it be so much easier if I just gave up on talking to the world-at-large (on my very small scale) and just tucked it all back inside again?

Hells. No.

(But also: Absolutely.)

So I'm afraid: what of it? I'm nearly terrified of pretty much every single thing my adult life has thrown at me thus far - why should this be any different? Maybe the fact that it's getting scarier is a good thing? Because I'm doing things I ordinarily wouldn't do: Putting down truths that are hard to think, let alone write. Taking my time when I need it, even as I feel the rest of the world speeding forward without me. Letting shit go, if it doesn't matter, and not letting shit go, when it does. Being a fucking grown-up, when you come right down to it.

So that's my plan: keep plugging. Don't let the bastards get you down! Lots of cliches about overcoming obstacles!

And one way I'm going to be doing that is by setting very real, publicly posted goals: Not letting myself get away with all the excuses.

Which is one reason I'm excited to be hosting my very first every Disability Blog Carnival, should ya'll be interested in contributing/attending/watching from afar. It's going to be on September 27th, and - since I was always the kid in school who liked a little bit of a framework - I've decided to provide a non-compulsory theme to help out those who feel they want it: Being Seen. It's something I'm struggling to work out for myself, so I figured I'd ask how you all are handling it - How do you want to be seen? How are you seen? Do you feel invisible? What aren't people seeing that they need to see? Are you looking for a way to get noticed, or are you hoping that nobody will?

Please don't feel like you have to stick to my theme, though: if you've got something to say, I will find a way to make sure it's included. Since I don't tweet, and my FB is obviously off-limits because of anonymity, you can either leave a comment here with your e-mail or a link, or you can send it to my e-mail (link above). Looking forward to all the entries, and on being back here, in my space, saying what I need to say.

I stopped writing because ...

I stopped writing because everyone I know is having babies, and I'm not. Because all of my friends first children are in school now, and I'm not even their teacher. Because I've spent eleven years raising nephews and nieces, and there will be nobody to raise come September.

I stopped writing because everything hurts, and there's nowhere that doesn't, and there's no way to bear that, only you have to. Because it never gets better, and only gets worse. Because there's no word for how much it hurts, so nobody understands.

I stopped writing because everything smells, and there's no way to block it out. Because the smells choke me, and gag me, and the words stay plugged up in my brain, with no way to flow out.

I stopped writing because my parents are drinkers, and my sisters embrace or enable chaos, and my cousins live so close to the edge. And because no one in my family can seem to do what's right for themselves without trampling fifteen others on their way. And because being Switzerland is hard work, especially when you can't even have chocolate to balance it all out.

I stopped writing because other people were saying everything I had to say, only better. Wittier, worldlier, wiser.

I stopped writing because of another damn doctor, another damn test, another damn failure. Because for every little nudge forward, there's a giant chasm of backwards to fall into. Because there's new medicines to battle, new insurance issues to curse, new hope that I don't even want to acknowledge. Because there's another tube to lie down in, another unanswered set of questions, another nowhere to start at.

I stopped writing because the dark didn't make sense to me, and the light was too bright. Because there was nothing to share when you are both inundated and empty.

I stopped writing because I can't even depend on the people closest to me, because there's nobody who sees me 100% and nobody I trust enough. I stopped writing because I stopped depending on myself a long time ago, and I don't know if I trust myself enough to try again.

I stopped writing because everybody else started living in my brain, and there was no space left for me to try to craft things - thoughts, words, whatever. Because I forfeited the ground out of self preservation, and when I started to reclaim it, there was more than one protest.

I stopped writing because I sought out distractions, brainless, effortless, Calgon-like distractions, in any form I could find them. I'm lucky that my vices aren't extreme, or punishing, or expensive, but they could be, if I let them. And sometimes I really want to let them.

I stopped wiring because it takes energy to write, and I didn't have any to spare. Because lifting my body into my chair and out again became all that I could manage, and there was still lunch to be made, to eat, to clean up after.

I stopped writing because there were chairs to rock in, people to nurse, hellos and goodbyes to be said. Because there were things to be made, parties to plan, hugs to accept. Because there was no pause button, no matter how much I needed it.

I stopped writing because other people have bigger problems than I do - life threatening illnesses, children they don't know how they'll feed, father in laws that make passes at them - and all of my problems seemed to be both mountains and molehills. Because I felt like complaining, and, at the same time, knew that I was blessed.

I stopped writing because I couldn't find the connection - because I couldn't plug back into whatever conduit there is in my brain that lets the words come out meaning something. Because trying to write when I'm not plugged in is really just typing, and I don't need the extra practice there.

I stopped writing because things gathered up around me, in heaps and in piles, until I couldn't find anything I was looking for and I was forced to attack them back. Because I couldn't find a place to put the words until I could find both paper and a pen, and I knew they had to be at the bottom of the stack I couldn't tackle.

I stopped writing because every last thought was trapped in there, somewhere. Because my brain became a cell, and I couldn't find the key. (It was probably buried in the stack as well.)

I stopped writing because there was a frenzy, and I don't do well in frenzies. Because it's my last defense, and the universe decided I should be defenseless.

Because... honest to god, I don't know why.

And I started writing again because I couldn't not.

Where have I been?

I see that it's been nearly a month between postings, and I didn't want you to think I'd forgotten you... nearly everyday I have a "You should say something to the nice blog people" moment, but it isn't accompanied by the energy and effort that's been required. There's a lot of reasons for that - health issues (surprised?), other people's health issues, summer with the kids, life in general. And there was SisterCh's wedding, which was nearly two weeks ago, and I am still recovering from it.

The wedding itself - the whole getting married part - was wonderful and sweet and short and simple, and I couldn't be happier for my sister and new brother in law.


Everything else? The planning and the crafting and the being the peacekeeper and the living in a family of 'always lates'? Was capital K Krazy. It was like drowning in a pool of anxiety for days at a time, and not knowing how to come up for air... as if I had dove into the deep end of an actual pool and someone through the plastic pool cover on while I was floating underwater: It felt like I spent a lot of time frantically clawing at it, digging for a way to surface. I don't exactly know why it was like that - some of it was me, some of it was other people, some of it was those stupid health issues I was talking about, and some of it just falls into the 'holy shit: this is my life?' category - but it was heavy, and - as much as I love my sisters & love to be able to help them out - I am so glad that nobody else is engaged right now. We'll talk about it more later, for sure, since I've been dissecting it in my head ever since, and trying to learn from my mistakes, but I'm too exhausted to go into it in detail tonight.

I am once again in recuperation mode, but there's a lot of unavoidable stresses that are making that pretty difficult. I'm getting there, though, slowly but surely. In the meantime, how about a picture of the happy couple, just so neither of us leaves with the impression that it was a completely horrible experience? (It really wasn't: I need to do a better job explaining soon, so it doesn't seem like it. Promise it won't be a month before I come back!)

It's one of those days where everybody else is at Comic Con and you barely survived your midnight showing of the Deathly Hallows. (I don't think there is a sentence on earth that could proclaim to world at large "I am a geek" as well as that one.) No really: I know not everyone is at Comic Con (I even know that some of you have no idea what the hell Comic Con is or why you would care about it), but if you looked at my Google Reader this week, you'd get the impression that most of the world's population is actually there. I didn't even know about Cons until the internet (I didn't even really know there were groups of geeks anywhere), so I'm glad for the updates, and only a tiny bit jealous.

My trip to the midnight showing of HP & DH Pt2 did not exactly go as planned - There was much less community spirit than I was expecting, because I wound up watching the show with about 8 other people, as opposed to the packed theater we had been staking our seats out in. Due to a malfunctioning reel or some such BS, the show I was at couldn't start. As in, we saw the previews twice, the 'here are the exits' message three times, and were treated to the lights dimming and rising - as well as the curtain opening and closing - no less than four times, before someone came out and told us that there was an 'issue'. Really? We couldn't tell. Their 3-D version wasn't malfunctioning, though, so we could either stay where we had been staking out seats for an hour and a half and watch in 3-D or go to one of the other theaters. As we have previously discussed, 3-D is NOT FOR ME, so SisterK and I hightailed it to one of the other theaters, where the movie had already started! I can't even...

(They were still talking to Griphook, so I don't imagine we missed more than 3-7 minutes, but still)

And then we watched the movie which was beyond amazing, and even though I am an avid book of the fans and knew there were a few inconsistencies (which parts of the internet are very up in arms about), I enjoyed it so much, and it hit so many of the high points that I couldn't help but love it. Which is basically my reaction to the series as a whole, too, so points for consistency! I can't say enough about the actors (because there could be no other Snape, at this point), and most of my favorite/least favorite parts were in there, and I even liked the Epilogue (which I think puts me in the minority, but who cares?) There were some tears, but I expected those. I wasn't a huge fan of the final Voldy & Harry fight, because I can't watch zoom-y type things, but SisterK said some of the faces during that were so horrible as to incite nightmares, so I guess I didn't miss out on much. Love, love, loved it.

They also gave us free passes to go to a different show, whenever, because of the inconvenience. Since the chairs there are (like regular movie theater chairs) Chairs of Fibro Doom, I will be passing my tickets on to someone else, but I appreciated them owning up to their mistakes. Now if they'd just install couches or something...

Sincerely, NTE

Dear Internets,

Thank you so very much for all of your wonderful, fabulous, fantastic links on today, Harry Potter Day! I am quite enjoying them. So much so that I am going to share some of them here, in case anybody else has missed out.

Zoot, who wrote the original template I used for this blog, so I've been reading her for at least six years, and her older son are adorable here. Cheers for tolerant teenagers.

Jennie culls through the Collective's archives for some of the most amazing Harry Potter-related posts ever.

s. e. smith (posting at Tiger Beatdown) talks about accessibility - or lack thereof - and why it is a bitch for people who like things or want to be happy for a little while that nobody (with the power to change things) cares about it very much.

Gretchen Alice compiled the Harry Potter project, full of other people's stories about their HP experiences. (Which I meant to contribute to, but just didn't get around to)

and Tumblr, dear Tumblr is chock full of magic today as it is every day.

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Dear Chunkys,

You are not to be thanked for having only one 2-D version available (and pre-sold) for your midnight showings of Harry Potter and the Deathly Hallows Pt2. Some of us require 2-D versions, and also really appreciate being able to sit in comfortable chairs for close to three hours. Yours is the only local theater that is truly accessible to me, on most days, and you went and ruined it by insisting on 3-D (which is completely inaccessible, unfortunately).(Please see Tiger Beatdown link, above.) Since I have to choose between a Fibro-flare and unmanageable migraine & dizziness, I'm going to go with the flare, and take my business elsewhere for the show. But bad call, Chunkys; bad call.


(PS - I will be attempting to take my nephew to the same movie sometime next month - see if you can figure this out better for next time, won't you?)

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Dear Other Movie Theaters,

I do not really like you, because your chairs are very uncomfortable, and I do not have the option of ignoring that. You are also often inaccessible in other ways, and to many people other than myself. I recommend that you read the Tiger Beatdown link above, as well, and try to remedy that ASAP. As for tonight, I would appreciate it if you did your best to not be so stinking uncomfortable that I am unable to focus on the movie... there is much crying and squeeing to be done, and - while I realize your place of business generally forgets that people like me exist - I want to do my share. Also, on a more positive note, thank you for adding 2-D showings to your midnight offerings - it is much appreciated.

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Dear Fibro-flare,

I know that you are making yourself at home, post-SisterCh's shower and family bad news, but I'd rather you didn't. As a matter of fact, should you choose to abandon me, I would be most grateful. In the meantime: do not mess up my very last chance to attend a midnight showing of Harry Potter... I would be most displeased. You wouldn't like me when I'm angry.

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Dear Readers,

Hello! Have you read all the fabulous Harry Potter posts the internets are sharing with us today? In case you were wondering, I am wicked excited about attending the midnight showing tonight, and super psyched about the whole thing. We've talked before about my Harry Potter love, but I'm going to try not to rehash all of that right now (in order to refrain from writing about how 'magical' the whole thing is). Suffice it to say that the fact that it is coming to an end - the original series and all that goes with it - is bittersweet, for sure.

My family has had a bittersweet week itself - SisterCh's shower was beyond amazeballs - a lot of hard work (SisterJ rocked it out of the park, SisterK really showed up at the last minute and helped us pull it out), a few cranky "I don't play shower games"-ers (neither do I - but if there are games, the least you could do is pretend it isn't going to infect you with something), and a mess I've barely begun to clean, but still - she was quite happy, and people were definitely impressed - I'm going to have to steal some of the pictures SisterJ took, because I'm sure the only ones I got were of present-opening, but trust me, it went really well, even if said Fibro-flare tried to make me miserable (Fail!). The bitter came, unfortunately, later that same day, when we found out that my uncle - who was quiet and funny and far away - lost his battle with brain cancer. He is the fourth of my grandmother's nine children to die in the past twelve years, and the only one whose death we were (mostly) prepared for, but it's still been tough. To sit with my grandmother, and hear her talk about being superfluous and wondering why "He" would keep doing this to her. To hear from all the cousins and aunts and uncles who are grieving and remembering fathers, mothers, brothers, gone. To live through it all, again & to know that there'll be more grieving coming, and just want to run away and hide, and not have to face any of it. It's not an immediate loss, for most of us - because he was the recluse of the bunch, for sure - but it's still a loss, and I'm sick of losing.

Ahem. So - The movie better be amazing (and I have heard that it is), because it feels like I've been waiting for-ever for it, and for the chance to go to the midnight show (sans costume, unfortunately: things came up - although I'd make a pretty good Bellatrix, if I just didn't brush my hair), but mostly because I just need it right now. I just need the magic (crap: puns, there is no avoiding them when it comes to this subject: sorry!) and connectedness and community and love. I need the fandom and the characters, and the knowing that there are a million other people sitting out there in the dark somewhere, tonight, crying their way through the Forbidden Forest with me.

Total bonus is that I get to go with SisterK, seeing as how she's moving away in a couple weeks and is all "being a grown up" now and stuff. She was younger than my Oldest Nephew is now when we (BigBrother & I ) took her to the first one. She was eleven - just like Harry - when she started reading the books. And I'm pretty sure she's the only one in my family (besides me) who is still disappointed that no owl ever showed up for her. She got her drivers license (way late) especially for this - well, this and the fact that she has to drive halfway across the country in a few weeks, but let's just say it was for this. And I'm going to buy really expensive popcorn and not care at all.

I've been seeing a lot of "Thank you, Harry!" or "Thank you, Jo!" type posts around, and I'm in love with them all. Because those are my people - people who get that books and movies are more than words and pictures, and that characters can be true friends and stories can be more powerful than you can imagine. People who understand that the gift of forgetting about your own life for a little while - no matter how good or bad it may be - is a treasure. And who don't take it for granted.

Technically, I was 'too old'* for Harry Potter - it wasn't my childhood, or even my teenage-hood. I started reading them as they came out, but it wasn't until college. They've been important to me, just the same. Sharing it with my sisters, even though they were only kind of into it; sharing it with my nephew, even though he reads s o o o s l o w l y; battling my brother to get back my copy of the last book; laying on a bed with SisterK, trying to read more slowly so the day wouldn't end: these aren't things that I take lightly or will ever forget. It's good for me, today, this week, to have those things to remember & it's hard for me to believe that they all came about because one lady decided to start writing things down in a coffee shop somewhere.

To someone who loves words as much as I do, that is pretty much a miracle. That the writing down of words; the creation of a universe so different from our own, and yet fundamentally the same; the invention of spaces and spells and specialness; the journey of a boy and his friends, could come to mean so much, to so many.

It won't be the end of the world, when there's no more new Harry Potter movies, just as the world didn't end when George Lucas decided there'd been enough Star Wars movies (of course, some people rejoiced, but that's a little bit off topic), but that doesn't matter - it doesn't make it less sad that there's nothing new coming down the line. It's ok that it's sad - that's life. But the best part is, fifteen years ago, I'd never heard of Harry Potter, and neither had anybody else, really. So there's always the possibility that tomorrow, some other journey will start, and we'll all fall in love with somebody else. That's life too: exciting and surprising.

So I'll go tonight to the midnight show (my first! midnight showing!) and I'll try my best to have an amazing time & knowing that it's not the end of the world, and that it will be incredibly bittersweet. And I'll love every minute of it, and be thankful that I'm here to enjoy it.

Miss you! Be back soon!

Topics, topics, who's got a topic?

I could write about how hot it is here, and how everyone else in my family would like that to mean all air conditioning all the time, but the stale smell of the air conditioning combined with general cooking smells that will not dissipate, plus the fact that air conditioning makes me frozen, added to the fact that parts of our house get a really good breeze makes me less than amenable to this plan. Which earns me a lot of dirty looks, I suppose, but it turns out I give just as many, when I come out of my non-air conditioned room to find that the rest of the house is iceberg cold. It's a game we will continue to play all summer, unfortunately, because the heat doesn't really bother me, and it seems to really bother everybody else. Humidity bothers me, asthma wise, and I have no choice then but to fall back on the A/C. Heat itself, however, because I am very low on the physical activity meter (& also a lot lower in the room physically - heat rises), doesn't mean all that much. Sun, humidity, all of the main accomplices of heat - we are enemies, but heat & I are kind of buddies.

(I recently told Zack that I have experienced a dramatic increase in my levels of sweating - "Usually, aside for fevers, I am not a sweat-er" I told him. "No: You're more of a jacket" was his completely straight-faced response. Zack is so pathetic, he can't help but be adorable, sometimes. Even if I have now been waiting four days for his substitute nurse to call me back - I don't like that substitute nurse very much.)

What else is going on here - OH YEAH - a big huge shower. Even though it is not really all that big or huge; it just feels like it because there are a lot of details and secrets and planning and crafts and last minute things that I hate, but you can't cook for a party three weeks beforehand, unfortunately. That's this weekend, in case you were wondering. I have no doubts that it will turn out to be lovely, but the anxiety of getting there reminds me that I would - despite awesome organizational and DIY-skills - make a poor wedding planner.

I always get nervous before parties, and can't really nail down what the anxiety is about (aside from things just completely falling apart). I know I am not truly anti-social, but there is a huge part of me that is introverted, and definitely socially awkward. I long to be one of those gracious hostesses who doesn't search for the right thing to say that makes people feel welcome, or who knows how to blend different groups of people together seamlessly, but longing for it unfortunately does not make it so.

In response to a previous query, I thought I'd tell you that we've decided on two games for the shower, neither of which require much of a spotlight or too much intense participation (which I am not sure we can count on from our guests) - a "How Old Am I?" guessing game, with pictures of the bride at various ages and stages, and a "Design a Wedding Cake" coloring thing that has so far only been hilarious in the number of ways my sister and I have miscommunicated about it.

Originally, I'd read something about creating cakes out of Play Doh, which I thought sounded like fun and was different enough that not everybody would have played it a million times already (toilet paper dress making, I'm looking at you!) We decided to scale it back a little, I think mostly because not everybody here is a big Play Doh fan (boo hiss: Play Doh is awesome!), and do models instead. I told my sister that there were cake templates that we could use, and then people could decorate their own and have SisterCh judge which was best. Now, what I was talking about was doing little Styrofoam models of cake - actually called 'cake templates' (the kind people use when they're learning to frost cakes) with real frosting and what not - still kind of messy, but silly enough that people were having fun. But what SisterJ (the matron (ha!) of honor) heard was templates - like a paper drawing of a cake, that we would then have people decorate. So I went out and bought 20 pastry bags, and the look she gave me when I took them out of the bag was as if I told her I had decided that I would wear my underwear on the outside of my clothing from now on. In the interest of space and cleanliness, we decided to go with the coloring page version of the game, and I'm hoping it will still have enough silliness in it to make it fun and worthwhile.

I'm off to finish printing the pictures for the How Old Am I game, as we speak, so wish me luck. Let's hope whatever any of us wind up doing this weekend will be fun and fruitful!

Constant vigilance

Am imagining myself in Italy with Nathan Fillion, instead of lying here in bed, with a headache the size of that leaning tower he's probably posing next to right now. (Nathan Fillion is actually too cool to pose as if he and the tower are both tipping over, I'm sure, it was just the largest thing my poor tired brain could think of.) I actually had a pretty eventful day - wedding crafting with my mom and sisters, which went relatively well.

When it comes to my sisters - to any of my family, really - "relatively" is the operative word. Members of my family have long accused me of being "overly sensitive", and I probably am, but I feel like I am certainly not alone in that personality trait - none of us is particularly immune to the barbs and arrows that are routinely slung around here. Only, for the most part, I feel like they are all only sensitive to what's coming at them, not at what they're dishing out, while I have to be on high alert for everybody's issues. (Hello: I'm an adult child of three alcoholics: I like to try to stave off any emotional conflict before it completely & disastrously explodes - Pleased to meet you!)

But I am apparently the only one who is on hyper-vigilant putting-out-fires-before-they-flame-up duty, because it often feels like every time I tune into a conversation, I see somebody standing there, dropping another match.

It's like they can't see each other's tender spots - or when they do see them, they underestimate the impact on that person when they poke at them. When they're doing it it's "just teasing/joking/making an observation", but if it's done to them, then it's a deliberate insult.

I know people do bite their tongues, which makes me grateful that they have some internal sensors, but I don't feel like anybody else is as tuned into trouble as I have to be. Nobody else seems to see that looking to SisterJ for what comes next is probably putting more pressure on her than she needs/wants, or that continuously laughing at Mum's attempts to cut straight leaves her more embarrassed than amused. Perhaps there's more than a kernel of truth in these things, or in the fact that SisterCh would rather play with her her music list than make a decision, but when people keep poking the same spot over and over, I find myself waiting for the inevitable to occur, and for some to go just one joke too far.

And Lord only knows what happens then.

Part of my apprehension is, of course, this newly formed/found peace between SisterJ and SisterCh, which (it seems to me as a semi-outsider) is being constantly strained and tested by the multitude and magnitude of wedding STUFF TO BE DONE, and while I know it is not my responsibility to try to police their interactions, I keep finding myself doing exactly that. (And then writing super long, run-on sentences about it!) I hear myself re-interpreting something one of them just said to the other, trying to soften a verbal blow that I hope was unintentional, or have to physically stop myself from following after them when they leave a room together, worrying about what might happen once they are out of earshot. It's unreasonable, and I know it, but I haven't figured out how to stop feeling it yet.

They're actually doing a lot better than I'd have imagined, but the potential for danger and chaos is frightening to me, and I know that it's kicking my control freak tendencies into high gear, leading people to tell me how bitchy I'm being, which, when you are really only trying to help, feels pretty awesome, let me tell you. So then I try to dial it back, and wind up seeming uncaring to somebody else. Balance: I need it. (You can't control other people, I keep telling myself. But knowing it and following through on it are two different things.)

What's really evident to me now, though, is how much it hurt when they were fighting - not just them, but me too, - and how powerless I felt during that whole thing. I don't want to feel that way again, so I am trying to throw myself on all the grenades I see now, before they blow us apart again. Of course, this is a stupid strategy, because A) maybe those aren't grenades to anybody else besides me, B) constantly watching for grenades is exhausting, as is trying to diffuse them before they blow up, and C) everybody involved is an adult, and I'm never going to be able to predict or control their behavior, so it's useless even to try.

I am well aware of all those points, and it helps, some, to calm me down when we get to spend a day like to day where there were three separate bouts of laughter-induced tears, two semi-completed projects, and a whole room full of very stubborn people who each gave the day their absolute all, but I have a feeling that this relationship repairing stuff is going to take a lot longer than I want to be on guard duty for, and am going to try to work on that.

" 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!)