Never that Easy

2012-01-27T22:53:00.000-05:00

Got caught up watching M*A*S*H* marathon: How awesome is M*A*S*H*? When I was in high school, and being home tutored for most of my classes, M*A*S*H* was on about three different channels at different points during the day, and I made my way through what I assume was all eleven years worth of shows. (M*A*S*H* was only one of a few shows I could watch with Nana and not have to listen to her complain about how horrible the world was during every scene: A show about war, she had no complaints about the downfall of our society; Friends, on the other hand made her think the apocolypse was right around the corner. :shrug:)

Every so often though, I am flipping my way through, and TV Land will have one on that I either didn't catch back then, or have completely forgotten about. But the one that sucked me in tonight was the one where the reporter comes and does a documentary on the whole crew, and how a M*A*S*H* unit runs, and is basically a highlight reel of the seasons up till that point. And even though I know it is coming, when they show the clip of Radar reading the message that Colonel Blake has died? I can't help but tear up. Considering I didn't watch the show until 13 years after it had gone off the air, I had no idea what was coming, and so it was still unexpected for me, still shocking. And I thought about what it must have been like, watching the show religiously, back when it first aired, and to have that happen. It's not real, obviously, but that kick, that gasp, that's real.

When my father died, I had just turned twenty, and we hadn't really spoken - aside from terse politeness and arguments during which he berated me as unsympathetic and I struggled not to cry - for quite a few years. He was a less-than-functional alcoholic, and I was his oldest daughter, the one who had to take care of all the things he forgot - like having a birthday party for my nine year old sister, or picking up the pieces when he had disappointed my brother yet again, or helping my grandmother figure out how to deal with Child's Services when his ex-girlfriend called and reported him just for spite - and I had, by that point had my fill of it. He was irresponsible, and I, Ms. Uber Responsible, was just done playing along like everything was fine. When the back porch door to my grandmother's house would creak open, I would automatically tense, look at the clock, and hope against hope that it was anybody but him.

It was the ultimate reversal: as a little girl, whose daddy was in the navy her entire life, I had spent years wishing that he would come home again. But during that period, after he'd been kicked out of the Navy and moved back home to live with my grandparents, I spent an awful lot of time wishing he would stay away.

But today, watching M*A*S*H* and remembering that tiny gasp I had when Henry Blake's plane crashed over the Sea of Japan, I was also tackling a chore I'd been putting off for a while - going through the Mass Cards, regular cards, and funeral book that I somehow gained custody of after my father died - and I remembered the much bigger kick, the full body freeze that I felt when my mom told me he had died.

And I remember thinking that it couldn't be true, that I was somehow misunderstanding her, and looking at my brother's face, and the horror and fear that was so clear in his face, and thinking: "I should be feeling like him." But I was frozen, at first - I'm not sure I can explain how stuck I really seemed to be - it was like people around me were talking and acting in a way I thought was appropriate to the situation, and I was a step back, physically doing the things I knew I should be doing - heading straight over to my sister and grandmother, holding them while they cried; comforting people at the wake; not breaking down when his mentally disabled brother couldn't understand why he wouldn't get up out of the casket - but I wasn't in my body while I was doing those things. I did them because that's what you do: wakes and funerals and phone calls and thank you notes - I took the steps one after the other, and did the best I could.

But here I am, twelve years later, having carried all of this stuff - the flower cards and 'guest book' (they should really call it something other than that), the crucifix he held and the ginormous bible they gave us along with his ashes - to the new house, packed away in a box in the basement, forgotten. Except we're trying to clean the basement, and there was this white paper bag, full of things I didn't want to face, and didn't know what to do with.

Here are all the lists I had to make post-wake, in order to organize the thank you notes, which I had taken charge of (Please, god, give me something to be in charge of!): who knew these people, which great-uncle's church group had sent this card, did anybody have an address for Mr & Mrs So & So? (My father's death came in the middle of clump of family deaths - one each summer for three years - so I had learned a lot about funeral etiquette at my grandfather's funeral the year before: how you're supposed to put your address on the envelope of the Mass Card, so that grieving people don't have to track you down to say thank you. But my friends, my brother's friends, my sister's friends - they were all young... some as young as nine, and (luckily) inexperienced in the ways of funerals, and so there was some extra legwork to be done.)

Here are the 45 or so perpetual Spiritual Bouquets, for a guy who was over the Catholic Church and what he called all its hypocrisy. Here are the smaller cards from the flower bouquets - one from my brother sister and I, one from his mom, one from his brothers and sisters. And the memory of a card which is missing - that of his volatile ex-girlfriend.

{ I can't seem to find a post in which I talk about how crazy fucked up my father's wake was, but it's long so I'm not going to get it all in here tonight (Maybe tomorrow's post, if I can get it to make sense to anybody who wasn't there). Suffice it to say, she was not welcomed at the wake, and her flowers were disposed of. }

But there's all these things and I don't know what you're supposed to do with them: Do I have to hold on to them forever, because it seems disrespectful to just toss them in the recycling? Should I ask my brother and sister if they want them, even though neither of them are practicing religious anymore either? I don't know who left me with all of these stupid grown up things to have to think about.

In the end, I weeded through them, keeping some of the ones I figured would be most important (although I still might get rid of those as well: I know who was there for me then, I don't need these cards to prove it), and putting the rest, with a thankful heart, in the bin. (Even though it felt a little sacrilegious, even to this extremely Ex-Catholic.) I'll give my brother and sister a heads up that I have some, if they want them, and I'll get rid of the rest, no sense dragging it along if it just feels like baggage.

And I'm surprised by how much baggage there still seems to be.

"The first fall of snow is not only an event, it is a magical event. You go to bed in one kind of a world and wake up in another quite different, and if this is not enchantment then where is it to be found?"*

2012-01-21T10:06:00.001-05:00

It's finally snowing here in Massachusetts - three quarters of the way through January, and the shovels have only been out once (a freak storm the last weekend in October): if that's not some evidence that the climate is screwy, I don't know what is. I've mentioned before that I find the snow both calming and serene - an unpopular opinion around here, which undoubtedly stems from the fact that I don't do any of the shoveling, or really have to interact with its actual coldness and freeze at all, but I'd much rather it snowed in the winter than rained. Winter rain is the most depressing weather: too gray and sad, all of the wet and none of the fluff of snow. It m akes me shiver just to think of it. Spring rains feel necessary, as if we need a good hosing down before moving into the next, and summer rains are almost always exciting: refreshing after the heat, filled with thunder and lightening, moving quick and powerful like. Rain in the fall is like the clean up crew again - scrubbing clean the trees, stripping things bare and a reminder that the year is coming to an end. But winter rain serves no purpose - 'it's not cold enough to snow', it tells you,' but it might as well be. You feel how wet this is? It's all for nothing.' Snow is just cozy in a way winter rain will never be - even its isolation is beautiful.

No, if there has to be precipitation in the winter, it ought to be snow - something you can watch coming down and remember all the times they cancelled school and you got to watch game shows all day long, or all the snowmen you tried to make that never made it past your shin but you were still proud of them anyways.

It's funny because last winter it snowed so much they started talking about holding school on Saturdays, kids had missed so much time. And this year, so far, there's not been more than three or four inches at a time, and most of that has blown or melted away on its own. Even today, although it's been snowing for a couple of hours now, the grass is still poking through in some spots, the inch or so that we've got seems thin, just enough to muffle things a bit, not even a full blanket. It's supposed to go for most of the day, though, so there's hope for a more complete covering.

Either way, I'm planning on spending the day with some hot chocolate, the radio, some blankets and something good to read. I hope your Saturday is filled with things that you enjoy, as well.

*J. B. Priestley

In the ball pit

2012-01-20T10:46:00.000-05:00

I do this thing where I start thinking - really thinking - about something that's important: Have you noticed this about yourself? Is there a reason why you have to run your mouth like that/act so awkward around new people/ be unbelievably cranky for no good reason? And as soon as the truth about the thing starts rushing at me - as soon as I'm starting to get to the meat of the issue, or when it starts to sort of click in my head that this is not a unique occurrence, that I sometimes act like this and maybe it is a pattern... well, when the truth starts rushing at me, I start rushing away. Is there anybody who needs tending or talking to, or playing with? Isn't there a show on right now that I can escape into, be mindless with? Isn't there a book I could read that would take me anywhere but here, facing the truth? It's such an uncomfortable feeling, this realizing things about yourself, and I would do just about anything to avoid it, I think.

When it does come, and I have seen the whole, frustrating, ill fitting truth about myself, it sticks in my brain: a large scaly burr just big enough and irritating enough to block out anything else. I have no other qualities except this uncomfortable truth - I am no longer a good person, a caring sister, a hard worker - I am only an inveterate gossip, a gigantic fraud, a loathsome individual who feels lonely until she's with people and then wants nothing more than to be left alone. Even though I know that this is not true - that all the good things I am or do are not obliterated by some newfound/newly understood flaw in my character - it is how it feels, and sometimes how it feels is how it is.

I have recently come to quite a few uncomfortable realizations about myself, and trying to integrate those things - a certain pettiness here, a confounding inability stick to the straight facts there - into my vision of who I am is proving more difficult than I'd have guessed. I have always known that I wasn't perfect ~ contrary to what others may think, I am well aware that my goody-two shoes image is just something other people see me as - I have never seen myself as such, and wouldn't really care to. But these inconsistencies in my character - the difference between who I want myself to be and who I really am, these are things I want to fix, to change. And that means recognizing them first, figuring out how deep they run and (maybe) where they come from, and how to stop doing them. It's a lot of heavy mental lifting, and, for a person who has limited reserves of any kind of energy - physical, mental, emotional - it certainly seems Sisyphean.

So I keep looking for low energy escapes - can I ever get my Google Reader below a thousand again? Is Reddit being entertaining or insulting today? Is there any way I can get my uncle to have a conversation with people so that they don't think he's an ogre? Let me organize every photo you've ever taken in your whole life! - and then condemning myself for needing these escape routes. It feels like I'm stumbling around kicking at little pebbles, all the while trying to avoid all the heavy boulders I know I have to move if I want to move forward, but just can't even look at yet.

It feels that way about everything - about all the work I have to do to manage my illnesses (and the question of when I decided that just 'managing' is enough for me), about all the things in my own behavior that I'd like to change; about all the topics in my family that need addressing, and all the ways we find of not addressing them; about not making time for friends and then wondering why they aren't making time for me; about the world as a whole and all the things spinning out of control in it. It just feels like there's too many important things that should get looked at, poked at, lifted up and examined, fixed, and I don't want to touch a single one of them.

A perfect example in the physical world is that my space is still not undecorated from Christmas - oh, the actual decorations are down, but the furniture is still all in the wrong places for every day living. Thus making it more difficult to do things like get towels, because we moved the cart that holds the towels behind the chair, so you have to climb over the chair to get ready to take a shower. It's little ridiculous things like that, but also huge life changing things like deciding to call the PT again, and see where that takes me, or actually changing my diet enough to prevent this diabetes thing from happening - and I just don't want to face any of it at all.

And here I write the necessary caveats that "we've all been sick since Christmas! - and I mean sick sick, like the flu that won't die sick" and "I've just spent two months caring for a wonderful lady, whose head is harder than the stairs she fell down!" and "blah blah blah Chronic Illness, you idiot!" but all of that - while true and real and just so much - doesn't feel like enough of a reason to let everything else pass me by. I never feel like I am juggling half of the balls I need to juggle, there's just me, standing with maybe the three or four largest, most fragile balls, throwing them up and catching them (sometimes by the skin of my teeth, but still, catching them), and all the while, the floor around me is littered with a million other smaller balls.... It's basically me, standing up to my waist in the ball pit of Chuck E Cheese, trying to catch all these biggest balls, but knowing I've let a thousand more go. And not knowing which of those thousand was the next most important - the one that needed me now, and I won't get to it for another three weeks.

I don't know what to do about all that - how to climb out of the ball pit, or juggle better, or even begin identifying the colors of all the stupid things I'm standing in. I know this feeling will pass, or fade, because it has in the past, but it never goes away... I'm always fumbling something, and I wish I knew how to stop.

Flu

2012-01-15T17:16:00.001-05:00

I suppose, after that title, I don't have to do a lot of explaining as to where I've been. Without going into too much detail (you're welcome), I had a pretty rough week, and am still on the mend here, but finally feeling semi-human again. Now I just need Mum to recover from her bug ~ which seems to include a hacking cough from which I was thankfully spared - and then I'll be able to take a real shower again, and up hopefully up that to actual human being. Just exhausted, mostly, still. That's going to linger for a bit, I know, which is frustrating.

I will mention, however, that the flu bug most likely came courtesy of my grandmother's visiting nurse, who TOLD US, the day my grandmother and uncle both came down with it, that she probably brought it in with her the previous day, as "all her patients seemed to be getting it." Hmm... Maybe - and this is just a thought - you should check your hygiene practices if you're going around spreading the flu to your (mostly elderly & infirm) patients? I think you might be missing a step somewhere. Now, if I could just get UJ to hand them all the Purell bottle when the walk in the door. (Although 3 out of 4 of them always smell like it when they come in, and usually do it again as soon as they take off their coats. But it's that fourth one that sneaks up on you, I guess.) Both Grandmother and UJ had it, then I brought it home with me, and poor Mum picked it up last. Everybody is doing much better, but I'm going to make Mum call the doc tomorrow about that cough (with her COPD, it can get complicated pretty fast).

So flu. Which leaves me with no interesting stories, no internet wanderings to report, no nothing. But I figured I'd check in and tell y'all that, even though this winter has been unseasonably warm, it is still finding ways to kick my ass. Now, let's have some good stuff happen, so I have things to talk about, shall we?

Am heading to my (overburdened and I know it has erased all the oldest thousands of posts) Google Reader next, to see how all of you are doing out there. Hope none of it includes the word flu.

On the plus side, though, I did re-watch all of Firefly yesterday (I still haven't written the post about how traumatizing it was when I recently lent the DVDs to my sister and she gave them back because it was - gulp - 'boring and talky' I may never recover enough to lend them out again); caught a marathon of Quantum Leap (no lie, I definitely had a crush on Dr. Sam Beckett when I was younger. And yet I didn't think I was a geek? I obviously did not understand the word); watched 34 episodes of Match Game 76! (I miss game shows: aside from Jeopardy, the ones on now aren't worth watching, and that makes me sad); and cleaned out about 50% of my DVR - so I definitely accomplished something.

In which I morph from Grumpy to Weepy, all in four short paragraphs!

2012-01-05T20:16:00.000-05:00

For a large portion of the day, I felt so grumpy that I didn't think I should be allowed around other humans. I almost typed "grumpy for no good reason", but then I thought about it, and it was more like "grumpy for a thousand good reasons, but none that I can do anything about right this second", which basically amounts to the exact same thing. I came here, all prepared to write (yet another) endless rant about lord only knows what, but sometime in the last half hour, while sitting at the table with my family eating a very late dinner, the majority of those bad feelings shrunk down to manageable, and I think I'll save the rant for another day. For tonight, I think I'll tell you how glad I am that I'm just sitting here, wandering around through the internet, while most of the people I love are accounted for.

It seems, at least to me, that my life - and the lives of the people I am closest to - has become a series of blundering our way through one emergency to another, from one crisis to the next, ricocheting from one hectic gathering to the last, often leaving very little time for essentials of life, such as breathing or eating. Every day has taken on an urgency that didn't used to be there, and at the same time, leaves me with such a useless, futile feeling: It's as if I'm running as hard as I can, and getting nowhere, not understanding that there's a treadmill beneath my feet as opposed to a street.

Moving all the time - at least mentally - and making no progress. Even the areas where I can see progress being made, it feels like so little, too little to ultimately matter. I am that prototypical lone sailor, trying to bail out my boat with a teaspoon, only some days, it seems more like a thimble. So it's a rare treat when I can stop running for a little while, put down the teaspoon/thimble, and just be.
And even a half hour of just being. Of just letting a good book take me far away, or sitting with my family at dinner listening to them bitch, or here, in the dark talking to you fine people, is invaluable. (Literally had to just google invaluable to make sure it meant what I wanted it to mean. It does: you guys are priceless, google says I say so.) Back to the bailing, would appreciate larger spoons.

Oh goodness (AKA here are some parenthesis that I think you'd find interesting)

2012-01-04T20:55:00.000-05:00

So ~ how was your December? Eventful, I'm sure. Mine, as well.

In lots of good ways (holidays, Grandmother getting discharged from rehab, lots of sleepovers, etc, etc) and lots of not so good ways (pretty much that exact same list, plus all of the illness-y issues myself and others were kind enough to contribute) as well.

I took a bit of an unscheduled break there, for a little bit, but only because... well I didn't have any brain cells, energy atoms, or unattended moments to spare. (Did you know that your inbox will stop receiving e-mails after a certain number? Or that Google Readers could - not literally - overflow? Or that the entirety of the world wide web would continue without you? Now you do!) Not because I didn't have posts I planned to write (and composed on during my daily drives out to/back from the rehab), or because I needed a break after NaBloPoMo (quite the opposite, actually: I was pretty psyched to keep going), but just because there was none of me leftover to sit and type with, at least not at an appropriate time, anyways (as in, when I was near the computer). So, unscheduled blog break, it is.

Yesterday was our first full day without any extra people (people I love dearly, but now it is so! quiet!) in the house since Christmas, and I spent it at Grandmothers, trying to make sure she had what she needed (a little dose of "sanity", and a sponge bath care of Mum) and chatting about relatives I never knew, some apparent candidates for sainthood and others surely roasting in the fires of (imaginary) hell. I am still trying to decide if it would be better if I packed up & moved in over there for a little bit, but it's an impossibly difficult decision for a million (totally overwhelming to only me) reasons, and I'm just doing the best I can to be in both places (often at once) for now... that might have to change soon, I don't know. And today I was back over there to monitor her PT while my uncle drove SisterK to the airport to head back to Iowa, plus my mom had to have a liver biopsy (as follow up to her stint in the hospital), and then I came home just in time to be scolded by no less than 4 people (for completely ridiculous/arbitrary/WTF-ish reasons), and it's been a wonderful sort of day.

In other words, things are SNAFU( Situation Normal, All Fucked Up) here in NTE-land.

BUT: I am going to start eeking out some writing time, because I'm doing that 'my brain is a ticking time bomb' thing again, and that's not good for anybody. (ANYBODY) In the meantime, Happy New Year, everybody... have we decided yet if we're hoping for the Global Thermonuclear Zombiepocalypse this year, or not? Cuz I'm still kind of on the fence. (Ok, not really. But I might be, if I have to watch any more Republican debates/caucus/still in existence crap.)

Just... no

2011-12-15T10:39:00.000-05:00

Doing some of my christmas shopping online this year (as most years), I've come across some things that are definitely NOT on my giving/receiving lists. I thought I'd share a few of them with all of you, in case you wanted to punish someone on your list:

Beer Belly - a pouch you can fill with liquid, wear strapped to your stomach, and drink out of with a tube. This sounds reasonable to people? (Oh, and in case that's just not girly enough for you, there's also the Wine Rack, which is basically a sports bra you can drink from.)

You say you're not a big drinker, but still, somehow want to show that you have no manners? Try these Bear Claw Forks, so you can just rip right into your food.

You could buy this Hand Grenade Soap for any of your lovely friends, so long as you're not flying anywhere over the holidays.

Now see, this Magazine Cover Pillow Case isn't such a bad idea, at its core. But the ad for it - in all its sexist glory - pissed me off so much that even if I loved them, I wouldn't buy it.

That's just the beginning of the ridiculousness I've seen so far... If I find others worth commenting on, I'll be sure to pass them on.

Checking in

2011-12-11T21:55:00.001-05:00

Guess I needed a little breather there, huh? Actually, it's just been more of the same: rehab with Grandmother most every day, driving back and forth (worrying about making mom drive me out there every day, when she's supposed to be taking it easier herself), trying to get Christmas stuff done in the in-between times... same old/same old. Grandmother is improving by (smallish) leaps and bounds: her bruising has gone down remarkably, her arm is healing bit by bit, and she's itching to go home (albeit to the first floor) in time for Christmas. We'll know more after her review meeting with the staff on Tuesday. Christmas is progressing as well... I'm not as close to finished as I would like to be with my shopping, but I'm getting there. Tomorrow is Santa at the mall day (I'm pretty sure No Longer Youngest Nephew is just about over that, which makes me saaad, but I'm going to enjoy it full out, if it's his last one), and I might try to peek at something while I'm there (although that usually doesn't work out so well). And that's about all I have to say today, but I will try not to be be so scarce now that I've got some words back.

How's your December going?

Made it!

2011-11-30T15:34:00.001-05:00

Here we are at the end of yet another NaBloPoMo, which makes my 5th November NabloPoMo and my 6th overall (I did a July a year or so ago), all of which I have completed. Even though at least one of those Novembers included one of the most horrible holidays I've ever experienced, and more than a quarter of the posts tend to mention how I'm either a) feeling horrid or b)not able to think of anything good to say. I said something, though, for each of those days, for all of those months. I finished them, and that actually means a lot to me, because I'm so much more likely to see myself as someone who doesn't finish things - not always by choice, but usually by circumstance - and to know that I persevered with this, it definitely feels like something to be proud of. Especially since Novembers seem to hate me, and this one has been doing its best to ground me into dust. Still. Here I am: not dust. Having completed a goal, and feeling pretty damn good about it. And to know that I'm here, six years into blogging, and I still (mostly) feel like I've got things to say, and people who show up to listen to them. So: Thank all the gods and goddesses, including the FSM, that November is over, and let's bring on December and some good news, shall we?

Nope, not writing today

2011-11-29T21:47:00.001-05:00

At least not anything that requires brain cells cooperating with each other. Am thoroughly (oh my goodness, if you could see how badly I spelled that before spell check fixed it, there would be no need to complete this sentence) exhausted, and not feeling creative at all. Spent a pretty hard day at the hospital with Grandmother. Hard only because her pain meds make her confused, and so there were some tough moments when she couldn't keep things straight or thought people who aren't alive any more were still going to come and visit her, but I can deal with that. It's hard to see her in pain though, and to see how frustrated she is by the fact that she can't do what she wants to do.

Her roommate has a bleed on her brain somewhere, and her behavior is often confused as well: at one point the OT had her up and walking around, and when she saw Grandmother's face (which, thanks to her blood thinners, is spectacularly bruised), she almost started crying and just kept saying "What happened to you? What happened to your face?!?" Grandmother kept asking me who she was, and telling her that she fell down the stairs, but it just got loud and started to spiral up into semi-chaotic cloud of craziness. At that point, it took a lot for me not to start crying too, because between the two of them it was just randomly intense... they each played into the other's bewilderment, and I heaved a huge sigh of relief when the doctors came in to talk to the roommate (who seems like a perfectly lovely woman, btw) and her family. Her family seems so lost, I could see on her daughter's face the sense of "what the hell is going on? and why can't the doctors fix it?" and I felt so badly for them, wishing I could help. And knowing exactly how hard it is to look into the face of someone who has loved you every minute of your entire life, and not know how to help them.

I seem to be spending a lot of time doing that lately, and I am not appreciating it AT ALL.

Sometimes being a grown-up really sucks, you guys.

On the plus side, we all apparently survived the end of days

2011-11-28T21:02:00.001-05:00

In an apparent effort to ensure that a member of our family has to visit the hospital at least once every two weeks, my 94-year-old grandmother fell, face first, down the fifteen (thankfully carpeted) stairs in her home early yesterday morning. My uncle heard her fall and rushed down the stairs, where she was gushing blood from a nasty gash on her forehead, struggling to sit up, and frantically asking him if she had gotten any blood on the new wallpaper. (She had not, in case you, like she, care about that at all: I, in case you were wondering, do not.)

I spent most of the day today at the hospital with her, where I was shocked at her battered appearance, although, I don't know why, since she fell down a flight of stairs - she's mostly black and blue, with two huge cuts on her forehead, as well as numerous smaller cuts on her face. Her main injury is a broken shoulder bone, which was immediately operated on, because it was putting pressure on (or cutting off ? My uncle is not so good at communicating medical stuff) an artery. She has various pins and screws holding the arm in place, and the artery was repaired by a graft, but she's in pretty tough shape. Between her head injury and the pain meds, she wasn't completely on target while we were there - the nurses kept asking us if she was usually more lucid, and I said that she never takes more than an aspirin and she banged her head up pretty badly, so I thought she was doing pretty well, even if she did say "Bahama" was the president, and that we were in a library that she was afraid would be closing soon. (Also: it is December 28th, 2012 - hence this post's title.)

They're talking about weeks of recovery - hospital and rehab - and this is her second go 'round with all of that, so hopefully it will all go as smoothly as it did last time. I'm just glad she's doing as well as she is... it was pretty terrifying to read my uncle's e-mail ( I mentioned, about the not being good at communication, right?), and then seeing her today was pretty rough as well. But tomorrow will hopefully be a little bit better, and we'll get this healing show on the road.

After all, we have to be in fighting form for the apocalypse, right?

PS - why do hospitals have to smell like that? It is hideous.

For getting up in the morning purposes

2011-11-27T20:50:00.001-05:00

(especially if you are the sister who reads my blog: just for you!)

Nymphs are not what you think they are

2011-11-26T21:50:00.000-05:00

Did you know a baby llama is called a cria? Yeah, me either. There were some other surprises too: just finished reading Chuckling Ducklings and Baby Animal Friends to LilGirl for her bedtime story, and I was not aware of a lot of those names... Elvers (baby eels), leveret (baby hare), eyas (hawk). A lot of new information for two very tired brains. I have a feeling we'll be reading it again tomorrow, just for some clarity. But the pictures are adorable, and it's pretty cute, overall. She really loved it, and her big brother was paying attention when we were naming some he didn't know either, so that's a bonus. It's great when facts are presented in a fun way, you know, so you can trick kids into learning.

By the way, the title refers to one that wasn't in the book: did you know that a nymph is another name for a baby cockroach or grasshopper? I'm going to go with grasshoppers, just because roaches should not have such evocatively beautiful names.

2011-11-25T20:29:00.001-05:00

I had a piece of one of these for breakfast, and I'm considering having another piece to take my last round of meds. Pie is totally a health food: FRUIT (or VEGETABLE, depending)! EGGS! SPICES! ~ Good for you! (If you have ever seen Bill Cosby: Himself, then you should have the song 'Dad is great, Give us the chocolate cake!' running through your head right about now, like I do.) Anyways, to repeat myself, YUM.

Hope yours was happy too!

2011-11-24T21:05:00.001-05:00

Our Thanksgiving was peaceful, full of yummy food, and about as stress-free as I think I am capable of at this point, so that's pretty awesome. We played Pictionary, which is always good for some laughs (or rants, depending on how the rest of the day is going): Today, my brother-in-law (I am still not used to the fact that I now have TWO brothers-in-law) was drawing on his team, and he wasn't feeling great, and they were doing so poorly that he decided to just draw a picture of a sad face, with tears. "This is me, not wanting to play this anymore," he said when the timer ran out. I am still laughing about it five hours later. Because he did look so woebegone, and I thought he was just going to lay down on the floor and take a nap, that's how tired he was. (And, considering that at least a quarter of the other people in the house were sleeping already, I don't know why he didn't just find a soft spot and curl up, but I am not the boss of everybody.) Besides, then we would've missed out on his beautiful drawing skills.

I am not planning on doing any shopping tomorrow, at least not from anywhere except the possible comfort of my computer screen: If you are, more power to you. I can't think of anything that I want badly enough to go out there with those people, but if you're after something special, I hope you find it easily (and safely!) As for me, I'm hoping for some quality heating pad time, and am getting a jump start on that right this minute. Just wanted to sneak in and wish y'all a Happy Thanksgiving, before it was over.

It is pie day.

2011-11-23T20:09:00.001-05:00

Four hours, and four pies later, I am to sore to write much. But the pies look really yummy. Happy Pre-Turkey Day all!

In which I tell you about a random website, and you waste time typing a hundred or more words

2011-11-22T19:18:00.001-05:00

I'm sorry, what is this website about, again? I get a kitten every time I get to a hundred words? This sounds worthy of an investigation. So I am typing right on through here, and am about a third of a way to a kitten already... what type of kitten is this anyways, Written? Kitten!? I'm wondering if it's a real picture of a cat, or what? Or a little animated kitten like that stupid paperclip that used to pop up and ask if I needed any help from way back in MS Office, circa 1996? (Since I specifically remember that ridiculous thing showing up during a particularly taxing English paper Junior year.) Question answered - it is a picture of a cat (or in my case, the back of a cat), from what I assume is some random site on the internets. I am going to keep typing, however and get to the next hundred, just to double check that it results in a kitten picture every time. Let's see... it just occurred to me that this would be a time where using the phrase "here kitty, kitty" would actually be appropriate, and, when you're typing, those occasions do not occur often, (Just FYI - it was another picture of the same kitten, only this time I got to see its face.) Also? you can adjust the word count that you want to reach (100, 200, 500, 1000), which might have come in handy back when I was typing up those ridiculous papers. Although: Fair Warning, the site tells you copy and paste often, because it doesn't automatically save your work. Which would be a major drawback for me, because I often forget to to save things until right after they crash, and I am left starting over again, but if you are smarter than me (Oooh: new kitten. Also cute: It's got a little freckle on it's nose!), or more obsessed with kittens, then you might want to check it out. The address is writtenkitten.net/# Enjoy!

Ghost girls

2011-11-21T21:04:00.001-05:00

Supposed to be feeling thankful, and right now, I ain't feeling it. I ain't feeling anything, honestly, besides jealousy and .. longing. All of the family posts at this time of year, and it hurts some that I don't have the family I want.

I'm going to let you in on a little secret. Back in June, around my birthday, when all my cousins and friends were turning up pregnant (again), and my littlest nephew was being all toddlery up two hours away from me, and I realized that this fall would be the first time I would not be participating, in an every day active sort of way, in the raising of a child, I felt an overwhelming sadness. It was horrible: because I was happy for them - some of them worked really hard to get to this point, and others were just so excruciatingly happy it was catching - but I was so sad, for me. I am still so sad, for me.

One of my oldest friends has been doing IVF for about a year now, with no results. She's discouraged, but not completely, and she and her husband have decided to give it a rest until February, just to have some space to breathe. She and I have talked about how hard it is to want something and feel like you're never going to get it, and I think we mostly understand each other, but not completely. Our situations are the same, in that we want kids, but our bodies just aren't able to provide them right now, but in almost every other way, our lives are very different: She has a high-paying, successful job, and a husband, and two houses, and I barely make it to the kitchen to feed myself some days, haven't even considered dating in years, and I live in a room (and a half, if I'm being honest) at my parent's house. So we can both be disappointed about that one specific thing together, but, for the most part, I feel like she doesn't get where I am coming from, and I know she feels the same about me - she's actively trying to have kids, and is finding it doesn't work, whereas I haven't tried once, and can't know if it would be as easy for me as it seems to be for teenagers the world over.

I know my sisters want babies, and that there's stuff keeping them from having them, and when we've talked about it, we can sometimes get on the same page. But the response I get most often is something along the lines of "How can you even be thinking about that right now?" And I don't have a good enough answer for that question, really.

So, back in June, like I said, I was really really sad for a few days; it just seemed like I've been waiting for things to get better for so long, and all that waiting had really gotten me was older, and fatter, and sicker. I mean, I've been proactive - I've done the things the doctors tell me to do, but ... it just hasn't felt like I've done much of anything, you know? So after the being sad, I made a decision: starting in September, which was when all the kiddos I usually have around me would be going back to school, I would FULLY commit to me: I would push this 'getting better' thing for all it was worth.

This is probably a good time to tell you that this is something that happens fairly often: this cycle of "Full Court Press"/"Shit this isn't working, what am I doing wrong?"/"Why the hell don't doctors know anything that actually helps me?"/"Fuck it: I'm not going to the doctor again unless I am on fire." The results have been, to various degrees, semi-positive, mostly negative, completely hellacious, and/or neutral to the extreme (as in nothing freaking changed). The best full court press I ever did was right before I went to college, and the doctors diagnosed the orthostatic intolerance that was making me pass out. They gave me the wheelchair, and meds that worked (for a little while), and things were on an upswing. That upswing only lasted about 5 months, and then the meds stopped working, and I've been stuck in the chair ever since. The worst cycle of complete nonsense was when I started doing PT while I was in college, and it was so exhausting and debilitating that I had to drop all my Monday classes, even though I was taking PT on Fridays: I would still be too worn out to attend them, and barely made it to any of the others during the week either. Luckily, I started this right at the end of a semester, so the teacher didn't mind the absences so long as I did the coursework, and then I crashed so badly that I was stuck in bed from the beginning of May until the end of August that year. I literally got up to use the bathroom, and that was it. It was not a fun summer.

But still: full court press, because the thing I want most, in my whole life? Is a child. That's all: I want to be a mom. And I know that in order to be a mom, I can't be this mom ~ which isn't to say I have to be healthy and fine and normal... I know that's never going to happen. But I can't take care of me right now, so adding a baby to that isn't a smart choice. So I was going to commit myself to making a whole lot of real positive changes, and finding out what the hell I'm not doing that I should be doing (including, and this is one I HATE to even consider, but PT, again. Because they swear that water PT is good for FM, that it works and doesn't wreck you. And I don't know if that's true, but I won't know if it works for me unless I try it, right?)

But then: September. September 1, my last full weekend with the kiddos, and I fall and hurt myself so badly that I am barely functional for the entire month. And a half. And my sister-in-law starts her chemo, and I'm trying to do the supportive thing, semi-long distance, but I know I'm not giving it my all, because I've only got half as much to give right now.

So we're halfway through October, and I'm starting to re-emerge from my injury seclusion, and this doctor tells me I may have diabetes, and that doctor tells me that I don't have diabetes, but I might have it soon, and both of them tell me to see a nutrionist who wastes four hours of my time trying to explain how to read the caloric counts off the side of the box. And I am left pretty confused, but trying, and then, all of the sudden, completely unable to eat. And throwing up, and now it's the goddamn flu, and this is what I get for not getting the flu shot, but I got the flu shot last year and still had the flu, and you know what? This doesn't feel like the flu, because my FM isn't any worse, because I don't have a fever, but food won't stay down, and how can I count carbs, when the only thing I have been able to keep down for 5 days is mashed potatoes? Screw carbs: eat potatoes, they don't make you puke.

So then I eat potatoes for three weeks, bringing us into the middle of November, and it turns out it wasn't the flu, but probably my gallbladder. Or my gallbladder AND my liver, which has decided to act up again, after 5 years of silence. And then Mum is in the hospital, and parts of her are falling apart too, and I don't know how to help her with that. And now it's the end of November, and the liver guy can't see me until March, and I have achieved an absolute zero on my "making strides/full court press" agenda, and actually have more things wrong with me than before, and more people to worry about than before, and I am definitely onto phase 2: this is complete and utter bullshit.

This is complete and utter bullshit. I want to get better. I want to build a family. I want to have all those Christmas mornings and temper tantrums, homework hassles and squalling, red-faced baby nestled into his mother's arms at the hospital photos. I find myself, in this season of giving thanks, not constantly thinking about the things that are missing - not even daily thinking about them - but feeling they are missing so acutely sometimes that I want to burst into tears.

My grandmother asks me how my cousin's youngest is doing and I tell her about his colic, she replies "I'm so glad to have those days behind me" (she raised 9), and all I can think is "Will those days ever be ahead of me?" Mum's in the hospital, and even though I know it's not serious, I start to think... what if I keep waiting and all the people I love aren't here to see me finally get there? Dad, in his extreme melancholia while Mum's in the hospital, likes to start conversations with "Well this person died right when they were achieving their dream" and "You know, I think it's a real tragedy that you can't have kids: you'd be an awesome mother." I can't seem to just take the compliment and let the rest drop - it crawls inside me and echoes: will I never be an awesome mother? Will it be a tragedy, for always?

It's not all the time, this ache, but it's there, and so deep sometimes it throbs: I hold my newborn (2nd/1st once removed) cousin, and stroke his cheek, and have to turn away so nobody notices I'm crying.

If you want something, go after it. That's what everybody says: You have to have a plan to achieve the things you want in life; specific goals and ways to meet them.

I have the goals, I have the things I want; I just can't figure out the plans, the steps, the hows. For me, it seems, there's more and more obstacles, and less and less clarity. More things to overcome, and less answers (or hell, even applicable suggestions) on how to surpass them. And I know, I really do know, that it won't always feel this way, that other people have been in a lot worse situations and figured their way out of them, that it won't be the worst thing in the whole world if this is a dream I simply can't accomplish.

But the wanting, right now, is sometimes so strong that I feel like I am sitting with a ghost, of the mother I could be, or the children I could have. The ghost of who I could've been, of the girl/woman I thought I would be: that's something I deal with all the time... I think if you have a chronic illness (or if you have a thousand other things happen in your life), you can get this feeling, this picture of the person you might have been... a ghost of a person past. But this is a new ghost, for me, this ghost-girl of the mother I still could be. And I want to be her so bad, that sometimes, when the image fades, I am heartbroken... to not even have the illusion of her.

And I don't know if any of this makes any sense to anybody but me. (This is that post I've been re-writing so much that the words all sound ridiculous and make-believe, at this point.) And maybe it won't: Not entirely. But I think there must be others out there who live with ghost selves, who deal with the what ifs of the past, and for the future. So I hope that this makes sense to some of you, and explains where I am right now, to the rest of you.

"But when it comes to fiction, the writer's only responsibility is to look for the truth inside his own heart. It won't always be the reader's truth, or the critic's truth, but as long as it's the writer's truth - as long as he doesn't truckle, or hold out his or her hat to Fashion - all is well.

2011-11-20T20:49:00.001-05:00

I have now written three drafts of a post I'm trying to get just right, and have been fighting with over the course of about a week, and every draft (while making minor improvements) seems so far from where I ultimately want to wind up, that it's discouraging. Sometimes the words just don't want to come. Sometimes too many of them come, but they're all the wrong ones, or they're wearing the wrong outfits, or they showed up to the party three days late. It's a good reminder that writing is a craft, and that you have to work at it. Of course, I'd rather that the words just showed up, appropriately attired, when and where I want them to, but that's not always the way it works. So, tonight, because time is running out to actually get something up, you get this instead - a post (whose title is probably longer than the actual post) about how I'm having trouble writing the real post, and I get to go try to coax the words out of wearing sombreros and galoshes for a little while longer.

*Stephen King, Full Dark, No Stars

It's time to light the lights...

2011-11-19T23:07:00.001-05:00

I know I've told you that I am wicked excited about the Muppet Movie coming out this week. I am a huge Muppet fan - from Sesame Street through Fraggle Rock, The Dark Crystal, and every Muppet movie or show I could get my hands on (I liked Muppets Tonight, people!) Miss Piggy, although suffering from a more than a bit of Smurfette Principle, was the first character doll I ever had: dressed in a purple gown, with gloves and, oddly, a turban - I wanted to be her, purple sparkly turban and all. So, I'm psyched about the Muppet movie, and am going to get someone to take me (which actually might turn out to be pretty easy, because one of my sisters has a crush on Jason Segal). How about you - You interested?

In the meantime, head on over to Tor, for their awesome Muppet Week reads. If you're in the mood for a little early Christmas viewing (which I am not: come Friday, it's fair game, but today I'm still in Turkey Mode), I can heartily recommend Muppet's Christmas Carol (which one of my other sisters will roll her eyes at the fact that I watch it every Christmas season). Oh, and here's a picture of my Miss Piggy Doll, although you can't see her turban (with ear holes) all that well:

Friday Night Lite

2011-11-18T22:43:00.001-05:00

Don't especially feel like writing tonight. Don't especially feel like doing anything but sitting in the rocking chair and wishing it was somehow powered by something other than me, because rocking seems like it would take too much energy.

So here's some stuff that other people I feel like sharing this week, just because.

On the subject of families and traditions:

“If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive in this moment. Each is present in your body. You are the continuation of each of these people.” — Thich Nhat Hanh

Lifenut talks about Snoopy Thanksgiving at her house, and the importance of building traditions.

"You can’t begin a tradition without making some promises to tomorrow. Tradition implies a respect for the past and a dream of the future bright and open. It’s recognizing something good and wanting that same goodness for people they won’t meet for years ~ their children."

In the same vein, there's this Chuck & Beans comic, from the Hallmark Shoebox blog -

And... that's all I have got for you tonight, because I am dragging. Just plum worn out, from trying to accomplish regular things, like normal people, and getting about 1/1400th of what I wanted to do accomplished. :shrug: Must stop trying to make words work well together, because none of them even really make sense to me anymore. Nighty Night!

Why can't we unfriend?

2011-11-17T21:33:00.001-05:00

Sometimes looking at the updated feed from my Facebook page is so cringe inducing that I can barely stand it. Occupy Boston was a large 'offender' today - since they were holding up traffic and making people late for their football games and date nights, and God forbid some of the people on my friends list can't get their drinks immediately following the end of their work day. I really only have two or three highly offensive friends - people whose politics and world views are so far afield from my own that I have trouble remembering why or how I ever liked them in the first place. The worst offender, by far, is my older brother's childhood best friend, who, previous to Facebook, I was not aware was a right-wing, "anti-PC" (meaning totally pro-any ism you can think of) windbag. I only follow him so I can see pictures of his adorable children, although even that makes me think: "oh crap, those kids are going to be haters, later." I even have a cousin who is on Facebook, and I am friends with his wife, but... I know that if I ever want to be able to speak to him in person again, it's better for both of us that we're not FB friends.

Those two or three fanatically off the deep end friends though, they have friends, and usually, those people's comments are even worse, and I have to just deep breathe and press the little x. Spraying the Occupy Boston crowd with bullets was suggested, as was that they all get jobs and stop wasting tax payers' money, and my favorite was the suggestion that it was "just an excuse so that the rapists and pedophiles can hang out and rape people and kids." Yeah: I don't understand how I live in this country, and that there are people who think that protesters, who have specific (and, in my opinion legitimate) complaints about the way our country is run are the same as pedophiles or rapists. Or that we should just line them up and execute them as a way of "thinning out the herd".

Seriously?

Do not comprehend.

Let's take a pretty realistic example: I do not (as previously discussed) find much/any value in the Tea Party movement. I think it's run by corporations looking to avoid paying taxes or acting as responsible members of our society, and that most of the people (not all, but the majority) are not just ill intentioned, but ill informed. That's my opinion, and I have a right to it. When they were here protesting, which they've done numerous times, I have rolled my eyes at their comments, signs or behavior; laughed out loud, sometimes at the complete ignorance when it comes to the issues; and done my best to ignore their existence. That's what you do - you complain on Facebook about the inconvenience of the rallies, or the lack of spell-check on the signs, or their unapologetic hypocrisy or display of privilege ("there's no such thing as racism anymore," I remember hearing that come out of some (obv. white) Tea Partier on the news a while back). It's ridiculous, literally: worthy of ridicule, and so I feel free to ridicule away.

But I've never said - or thought, even - let's "mow them down, while they're all in one spot". Or that, for sure, the Tea Party was just a cover for NAMBLA. It's just not something that occurs to me, to be honest - the reality of the situation is bad enough, so why think of ways it could be worse. I get being opposed to what a group of people are doing, and saying so, vociferously, wherever possible. But when I see all of the vitriol directed at the protesters that many consider too liberal, I wonder a couple of things -

A) When did so many of my friends become friends with douchebags?

B) Isn't it amazing that other people are so against a group that has done nothing besides say "Hey: we think this is broken?" They have done nothing - which is part of the reason I am not 100% behind the movement, I feel like there needs to be some actions involved - and yet they are mistreated by the police, falsely portrayed by the press, largely forgotten by the public, and that's just accepted

and, sadly

C) Remember how naive I used to be about our society, and how we were all working toward a common goal? That we had unalienable rights (not saying that being an asshat on Facebook is a violation of those rights, just that it reminds me of all the violations that nobody else seems to care about)? That people weren't just mean for the sake of being mean? Yeah... let's be 9 again, shall we? I think I need a refresher course.

Anyways, that long rant about Facebook and cretins, and of course the solution is very simple. And topical, as it turns out, because today just happens to be National Unfriend Day, which I swear I didn't even know until I just heard this song on another blog (Synergy!) So it's time to clear out some of the unwanted friend clutter, if you've got some. Scumbag former acquaintances, who will never even notice that I'm not your friend anymore? Adios.

Lovely readers of my unusually curse-heavy today blog? Please to enjoy this song, in honor of National Unfriend Day

American Censorship Day

2011-11-16T20:34:00.001-05:00

If you've been on the Internet at all today, you might have seen something about American Censorship Day. I first noticed it on Reddit, and I didn't know what it was about, but as I spent more time wandering through the web, there were about fourteen petitions floating around, begging for signatures. Honestly, it seemed pretty straightforward to me - the government and entertainment industry are looking for greater controls over the internet, the ability to shut down certain sites, should there be posts of copyrighted materials. On the surface, I can see both sides to this - Copyrights are protected for a reason: the artists and business people who create films, music, art, etc, work hard and should reap the rewards of their crafts, to the largest extent possible. On the other hand, letting the government, or a movie studio (for example) have the right to shut down, fine or punish an entire website for the postings of one user? Seems like an extreme overreaction.

I saw this video, and it made a lot of valid points I hadn't considered, regarding the economic ramifications of the bill(s):

PROTECT IP Act Breaks The Internet from Fight for the Future on Vimeo.

For myself, even though I respect that copyrights are important, my position (if I've understood what I've read and seen today correctly), is that this is a bill that should not pass. This bill is way too strict (in terms of penalties), open-ended (in terms of who has the power, and what powers they would have), and doesn't really address all of the (or, honestly, any of the) concerns I, as an internet user, have about systemic censorship. So I signed a couple of petitions, and I'm going to see what I can do about calling my Congressmen tomorrow. Because, even though I haven't heard of it before, this is something that's frightening to me: Giving corporations (even entertainment industry corporations) more power than they already have? Not a fan. Punishing all users as if they are monolithic entity? Not a fan. Limitless ability to ban websites with very little (or any, as far as I could see) oversight? Not a fan.

Censorship in America is so 18th century (if only); Let's keep it that way.

The text of the bill is here; the Reddit thread I first heard about this from, and which shows that the websites of the bill's own co-sponsor would be in violation of the bill, should it pass, as well as a ton more information, including how to best contact your Congressperson, is here.

Also, PS? The idea that the Washington Post says that Tea Party advocates are against these bills gave me more than a moment's pause. I will freely admit that I do not want to be on the same side of just about anything as the Tea Party, since they are generally... the polar opposite of my every instinct. So I took a little longer to research, after I read that, just in case I was missing something. But no: They're worried about "business strangling power" that the government might have, if the bill is passed, so I guess, even though we have different reasonings behind it, there's a first time for everything.

I'm working on it...

2011-11-15T22:26:00.001-05:00

Got a couple of more in-depth posts in the works, but in the meantime, I thought I'd report back on my no-roll pie crust experiment . I threw it together with some frozen strawberries and blackberries, a little oatmeal/brown sugar crumble, and am eating it for dessert right now. Grades are good - it's fairly sweet, but very flaky and hands down the easiest pie crust I've ever made. I'm not sure how I'm going to adapt the blueberry pie, since that tends to require a top crust (and this would not be pretty enough for that, I don't think), but I'm definitely using it for Thanksgiving pies. Thumbs up, for sure.

If you're interested, the recipe I used is:

In a medium bowl, whisk together:

     1 1/2 c flour

     3/4 tsp salt

     2 Tbsp sugar

     1/8 tsp baking powder

With your fingers, work in:

     1/4 c (57g) frozen butter, grated

     1 Tbsp plain cream cheese, room temp

In a small bowl, whisk together:

     1/4 c oil

     2 Tbsp cold milk

Add the liquid to the larger bowl and mix with a fork until all the floury bits are wet.  It will be shaggy – that's okay.

Dump the dough into a pie dish and press it into the bottom and sides of the dish.  Try to get it as even as possible.  Freeze the dough in the dish while you prepare the filling, or for at least one hour before blind baking.

To blind bake, set the oven to 350F/175C and line the dough with foil. Weigh the foil down with baking beans or uncooked rice (don't eat the rice afterwards) and bake for 10 minutes. Remove the foil and weights and bake for a further 4-6 minutes uncovered, until golden brown.

And it was originally found here . The best part was the idea of grating the frozen butter, rather than trying to cut it, mix it, refreeze it, wait, then cut it up again. Grating: why didn't I think of this sooner??? Anyways: Yum. Off to finish dessert now.

Patients For A Moment

2011-11-14T21:43:00.001-05:00

Kathy, over at FibroDaze will be hosting the next Patients For A Moment blog carnival next week, and her topic -

"When you have made some sort of peace and are coping with the chronic illnesses you do have and “life” throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?"

is, unfortunately right up my alley.

I'm currently trying to get a handle on at least two startling new diagnoses - That I am either diabetic or pre-diabetic (depending on when I take the stupid blood test), and that my gall bladder seems to want to attack me for no good reason at all. (Which, unfortunately, makes it not all that unusual from any other organ or part of my body - "Reasons? We don't need no stinkin' reasons!") I'm also undergoing some testing for an undiagnosed liver issue, which will bring my sum total of chronic conditions up to Way Too Damn Many + Infinity.

All three of these new issues, plus an injury from a recent fall, have definitely thrown me - More than once I've thought to myself, "But I barely have a handle on everything I already knew was wrong, I don't know how to add these into the mix!" And I won't sugarcoat it ~ So far, my main coping mechanism has been flat out denial: I will deal with it by not dealing with it. That is what I would like to do with each and every illness I happen to have ... I'd like to ignore it until it goes away. Until it decides that I am no longer worth its time, energy, or effort, and just ... leaves. But I also know that there is no way in hell this is going to happen. I mean, it's not like I don't recognize that this isn't a great coping skill; it's just my fallback position.

Still, denial can only last for so long (I hope), and eventually my brain turns back on, and I realize I have to do something. I'd say I'm currently smack dab in the middle of this second phase of coming to terms with the newest issues that have been heaped onto my plate: Full out educational immersion.

Deep down, I'm a geek, a scholar, a nerd. I live my life with the firm belief that there's just about nothing that can't be made better by reading about it - even when I'm upset, I'm curled up with a book, trying to connect to something that will make me feel better. (The way I knew, all those years ago, that my depression wasn't just run of the mill sad/a tiny bit of malaise? Was that I stopped being able to enjoy words - reading them, writing them, interacting with them... it was all suddenly bland and useless, and that's when I knew something was dreadfully wrong.)   So, faced with new challenges that I have no idea how I'm going to meet, I head to books, I head to the computer, I head to the library, and I start stuffing as many facts and theories and strategies into my brain as is humanly possible, in the hopes that something will make this easier.

So far, I've done a done of reading up on diabetic food choices (not diets, because I am not good with diets, but choosing foods that will work better with my body's new issues), which is good, because the nutritionist they sent me to explained things like "you have to eat some vegetables every day" and "the way to figure out how many calories are in what you are eating is to read it right here on the box, let me show it to you", and was utterly useless in every single way. I've researched what my blood glucose numbers might mean - again, thanks for all your not help, Nutrition Lady - and why the Hemoglobin A1c test that I took could have such varied results, and how I'm probably not diabetic, but I should try to address things before I become diabetic.

I've looked up the gall-bladder (anatomy - who remembers where all those stupid organs are hiding?), and tried to make sense of the internet's explanations of how something that lives under your ribcage, down by your belly button (ish) can cause pain up behind your shoulder blade, because that is some real ridiculousness right there, human body, and it must be explained.   I've tried to figure out how to peacefully combine the gall-bladder attack prevention diet and the pre-diabetic food choices into a livable mealtime strategy. (Have not succeeded, by the way, but am working on it.) I've gone back to some of my favorite chronic illness blogs and looked for relatable, motivational & understanding words; Have reread a couple of books I find inspiring, in the hopes of prodding myself into taking next steps.

I'm accumulating wisdom by the bucketloads, so that the next time I go to the doctor, I won't be so blindsided by what they're saying, and will hopefully be able to ask relevant questions and actually make progress on things.

It's not the final thing I have to do to make things run more smoothly again - at some point all of that theory and supposition will have to turn into action, and I am sort of dreading that step already - but it's still vital. It's the 'getting my feet back under me' portion of adapting to change. The process I have to go through to go from "Hell's no: this is not happening again!" to "Ok: it's happening, let's deal... I know I can pull this off!"

Yes, I'm disappointed to find myself, 17 years later, under continued attack from so many various parts of my body. Yes, I'm frustrated as hell that, instead of improving, things just seem to keep getting worse and worse, and that I still haven't gotten to the root of these illnesses, or figured out a way to get rid of them, or how to achieve all the things I want to achieve in my life. It's beyond frustrating, so much so that when I went to the thesaurus just now to look up a stronger word, one that fit better, I couldn't find one. It's all of them - upsetting, disheartening, prohibitive, discouraging, defeating, baffling, hindering, depleting - every synonym, all combined together and multiplied a few thousand times. All of those words to the nth degree.

But, when I find myself here, at a place that is both familiar and shockingly not, faced with new diagnoses all over again, at least this time I've got some idea of how to get further along down the line: Stuff brain with as much as it can handle, take breaks in denial land as needed, and know that you can handle it, whatever comes.

I'll share what I like, where I like, Google: You're Not the Boss of Me.

2011-11-13T22:26:00.001-05:00

I know I just talked about how much my internet was bothering me, you know, yesterday, but I've got another internet related complaint that I want to talk about today: The loss of Google Reader's like and share functions. I didn't use the Share in Reader option too often, only for things I was exceptionally excited/depressed about, but I miss it just the same. Mostly because I could follow other people, and their shares were usually amazing and awesome. And I miss the ability to like things, because I could just press L when I liked something, and my reader would remember it for later, and I had all these requirements for starring something vs. liking it, and Google has messed all that shit up, because now I have to "S" all the things, and that's just not right. (Whatever: doesn't everybody sort their feeds into a million categories?)

Google tells the detractors to the new Reader that there's a +1 button, and that it's almost exactly the same as share and/or like, but there's one big difference: In order to +1, I have to register for Google Buzz. In order to register with Google Buzz (in my experience, and what I've been reading about other's on the web), you have to forgo any shot at internet anonymity. In other words, I have to use my real name. My Google Reader was just initials, and I was able to share stuff with two separate groups of people: People who knew me IRL and knew my initials, and I told them how to find my reader OR people who knew my G-Mail through this website and found me that way. So I could share things with people, without sharing ME with people.

So I'm stuck with not sharing, and not liking, and so I came here to tell you that I don't like the un-liking and un-sharing. It's stupid. But, because this is my blog and I can put anything I want here, here are some things I would have liked or shared, over the past little while.

This AMA Reddit thread, where my favorite astrophysicist, Neil deGrasse Tyson answers questions (Which, technically did not come through my Reader, but my Reddit & Twitter accounts, but still: Is too much awesome not to share.) Example of said awesome? When asked about things that blow his mind:

2) That Quarks come only in pairs: If you try to separate two of them, the energy you sink into the system to accomplish this feat is exactly the energy to spontaneously create two more quarks – one to partner with each of those you pulled apart.

How cool is that? And how cool is it that I know that now, something about quarks? I won't forget it either, which is why I heart Neil deGrasse Tyson: He makes science relevant and interesting.

This post by the Smart Bitches, where they're asking for recommendations for books whose main characters have disabilities. Because I am constantly reading these kinds of books, and want MOAR, and because the Bitchery manages not to drag out a lot of tropes that I can't stand (Magical Cures: No, Thank You), or, for the most part, calls out the tropes when they see them... Exception to this rule - some people there have recommended books by Catherine Anderson, because the heroines have disabilities. While that is the truth, they are just... not good. I refer you this recent Goodreads thread, but also, just to common sense: the only thing these books are about is that the character is disabled. So that's all the author has to talk about as far as those characters go. She is "Girl in Wheelchair", "Blind Girl", "Deaf Girl" (and always girl, never woman); it is the sum total of her characterization, and the result is some horrible stuff. Anyways, aside from that, a lot of good recommendations (I've read some, added some to my TBR, and will go back to mine it again.) I can post some of the best, or links to my Goodreads reviews of them, if anybody's interested in some of the better ones.

(And that last item reminds me that I haven't talked about the return of Barbara Gordon as Batgirl. Which I am definitely going to do, as soon as I read the first three issues of Batgirl, to see how I feel her return is being portrayed. But I can say, even though I haven't read them yet, that I already miss Oracle. And what she meant to a lot of readers with disabilities, and specifically me.)

And speaking of comic books, there's this article, regarding what one writer sees as the hypocritically sexist 'neighborhood' of superheroines. She makes some points that I think are valid:

Most of all, what I keep coming back to is that superhero comics are nothing if not aspirational. They are full of heroes that inspire us to be better, to think more things are possible, to imagine a world where we can become something amazing. But this is what comics like this tell me about myself, as a lady: They tell me that I can be beautiful and powerful, but only if I wear as few clothes as possible. They tell me that I can have exciting adventures, as long as I have enormous breasts that I constantly contort to display to the people around me. They tell me I can be sexually adventurous and pursue my physical desires, as long as I do it in ways that feel inauthentic and contrived to appeal to men and kind of creep me out. When I look at these images, that is what I hear, and I don't think I even realized how much until this week.

and others I can't comment on because I'm not an avid comic book reader, but it was definitely something to think about. Comments not recommended, by the way: horrid.

This quote

Those are the best things about having kids, is just those everyday, really funny, weird moments that you could never predict, that completely change your mood and, you know, open up your heart.

and this photoset of Amy Poehler, that sums up exactly why I want to have a family. Why you'd put up with the colic and the clutter and the "oh my sweet jesus, why are you not wearing clothes-we have to leave right now and you are suddenly naked for no reason" and the "holy god you are only eleven years old, you do not get to pretend you know everything already" moments, just for a "My pleasure" every now and then.

On a more serious note, there's this HuffPo piece by Eve Ensler, which sums up pretty much everything I feel about rape and rape culture. I'm over it, too. And neither of us is alone: here's Amalah's post about Penn State (her alma mater); and how over it she is as well.

And two webcomics to round things out. First up, from Cowbirds in love :

Cowbirds in Love is awesome, in case you were wondering.

And lastly, from I don't know where, and I hate it when a backlink disappears: , which basically sums up my entire life right now.

Anything that is not doctor related is a plus, at this point.

2011-11-12T21:02:00.000-05:00

Firefox is kind of getting on my nerves, because it is lagging behind for no good reason. I'm sure there's a good technical reason that opening certain pages - Words with Friends, Gmail, or 750.com for example - makes the whole damn thing freeze up, but I am not accepting those limitations: Come on Firefox, you can do it! Because all of my family - the ones who won't come over and play a game in person unless you threaten to withhold their Christmas presents - is all of the sudden obsessed with playing fake-Scrabble, and I have to be able to (make up) play words like 'cwms' and blow everybody's mind. ("CWMS: Pronounced 'cooms'; welsh for cirque"), even though Scrabble, real or fake, is one of my least favorite board games ever. When it comes to word games, I'm more of a Boggle girl, myself - or Upwords, where you can fix other people's stupid mistakes (like stealing all the good bonus spaces). But if we're playing a game, then I'm in. So fix yourself, Firefox.

In unrelated news, I did manage to leave the house for an hour today - to go somewhere that was neither MY doctor/hospital/ER/medical appointment or anybody else's doctor/hospital room/medical appointment. This is notable because it is the first time since September 1st that I have managed such an outing. So that's progress. Considerably less progressive feeling is that my local Target was all decked out for Christmas, and I am still unsure that Halloween has actually passed. Contributing to my seasonal denial is the unseasonably mild weather we're having here in Massachusetts - three days this week were over 60 degrees, and even though the nights are below freezing, it still might make it to 70 on Tuesday. The words "70 degrees" and "Thanksgiving" are not compatible, in my estimation. (The only Thanksgiving I remember it actually being warm like that was one of our holidays from hell, actually, so I'll pass, all the same: Bring back the fall!)

I was going to say that running to Target is all I accomplished today, but considering how it good it felt, I'm going to exclude the "all" and call it a pretty good day, overall.

Late in the day, again

2011-11-11T22:28:00.001-05:00

I keep putting it off and pushing it back - "Oh, I'll write at 7 o'clock, when this show is over, at 9 o'clock..." And somehow now it is after 10 o'clock, and I haven't put two words together. I know you all are shocked at my procrastination skills.

I do have good news to report, however: Mom is home from the hospital, and, while pretty exhausted (anyone who thinks a hospital stay is restful and recuperative has obviously never had one), she's doing pretty well. Got some stuff to follow up with in the next couple of weeks, but definitely a lot better than she was. (She ate food. Voluntarily. Twice today that I know of. It has been weeks since that happened, so that's a big step forward.)

Also, I didn't procrastinate all day: I did in fact make cookies today. Hooray for following through on something. I made two batches of cookies, froze half and baked half - because we honestly don't need five dozen cookies on just any regular day, like today, and because there's nothing better than knowing that all I have to do is cut a chunk of the frozen batch and I can have a couple of warm cookies any old time I please. Plus: I am already there doing it, all of the ingredients are out, I might as well throw it together. It doesn't take very long, the second batch, and I can do it while I'm waiting to pull the first round out of the oven.

I also attempted to make a no-roll pie crust, and froze that as well. I'm hoping for homemade pie crusts for my Thanksgiving pies this year, and meant to start two months ago, trying to settle on a recipe I like - and then things (my body, other people's bodies, the world at large) kept going wrong, so here I am just starting. I am not a huge fan of the crust part of pie, for some reason, and pie dough rolling is nearly impossible for me, strength-wise, so it's hard to make my own. I usually resort to the store bought, but I know it's not the best ever. (And I like to make best ever pies, so it's a conundrum.) I found a recipe on the internet for no-roll crust, and I'm going to see how that turns out. It was wicked easy to make, but the recipe doesn't say anything about freezing it, long term, so I'm sure there will have to be a practice run on the pies before Thanksgiving rolls around. (And I am not even thinking about the fact that that only gives me two weeks. IGNORE.)

Still, although I am currently sore as all hell, I love baking, and wish it was something I could do more often. It takes a lot out of me, partly because we don't have a table at the right height for me to cook on, so I have to hop up and down from the counter in order to see into the mixer and make sure I'm doing things right. (Oh, standing: why are you so difficult?) And the hopping is exhausting, but I haven't figured out a better way yet. (Recently, they put a long table in the kitchen for me to try, but someone must not have liked it there because before I even got a chance to try it, it was quickly moved back into the dining room. That's ok, because I think it is still too high, but I kind of wish I could've tried it first.) But hopping and soreness aside, I do have a bunch of mini-chocolate chip or butterscotch cookies to nibble on for my snack tonight, and that certainly tips the scales in favor of baking, however I accomplish it.

Pro tip: I realize that some of you probably already know about this, but it is my favorite cookie-related tip in the universe, so I'm passing it along anyways. When you're storing your cookies, like in a tupperware container or something (we use old takeout containers: reusing for the win!), put a piece of bread in there with the cookies, to keep them soft and moist. For whatever reason (and I know I am a geek, but I am not a science geek, so I can't explain it), the bread will get hard and stale, but the cookies will not. Change the piece of bread every couple of days - if your cookies last that long - and the cookies will stay nice and fresh longer, which comes in handy if you are mailing baked goods as well. (And the bread you can use for homemade croutons, if that appeals to you, but I don't like croutons, so I just toss it.)

Time for that snack I was talking about... Thanks for all the well wishes for my mom; they are much appreciated.

2011-11-10T22:31:00.000-05:00

My mom's still in the hospital - her thyroid is acting up now (it always has, but to the extreme I guess) - and I am not liking that development at all. Prior to this, except for a day surgery here and there, my mom hasn't been in the hospital since my soon to be 26 year old sister was born. And the only time, before that, that she was a non-maternity patient, was when she was a teenager and had her appendix taken out. So, before I was born, basically. It's a frightening thing, no matter how serious or not serious it is. And my mom is a horrible patient - today she walked down to the nurses' station and asked them if they had anything she could help with. They had to laugh, and direct her back to her room. You can't see me, but I am shaking my head. Because that is how ridiculous she is.

She not unused to hospitals - between my grandmother, me, my grandfather, my aunt, even a great uncle or two, she's been designated care person a lot of times, but not for herself. (And will she let me do it? No, she will not. Frustrating!) And it's like everything she has learned about hospitals - that rounds are ridiculously early and blood draws happen at 4 a.m.; that you have to keep after the nurses, even when they're doing their best, because otherwise the doctor has gone home for the night before they manage to get in touch with him; that it's ok to ask for things like help untangling your cords so you can get to the bathroom; that sometimes it's nice just to have somebody sit next to you for a while, even if you're not doing anything, and even better to have a second set of ears (and questions) when the doctor wanders in - all of those rules and experiences, she can't seem to apply to herself.

So there's that.

Tomorrow, she's supposed to come home. This is the third tomorrow in a row, though, so I am not holding my breath, because I remember how hospitals really work, and that one random number in your blood tests can mean more than one inconvenient delay. Instead of holding my breath, I am making cookies. Even though I can still barely eat, and food, for the most part, is unappetizing: I want cookies, and I want to make them from scratch. So chocolate chip cookies, here I come.

That's my Friday plan, how about you guys?

PS - Thanks for all the Twitter love; I'm pretty sure I'm an idiot, because even though my real name was NOT supposed to show up, it did. I don't even know where my brain was, or how that happened. I think it's fixed now? It looks fixed on my computer, anyways. The sister who knows about my blog was commenting (in real life) about how I am really kind of of two minds about the whole 'screw it if people find me!'/ 'Holy Shitballs ~ someone might find me!' faux-internet-anonymity thing: It's true, I am, and I guess I must talk about it a lot. Sorry if that's boring to you. I don't get the sense that it's going to resolve itself, really; I'm going to want to be both public and private at the same time, and I'm going to have to know that there's a very small long term possibility of that happening. For now, the risk is worth it. It might not always be, but I can't tell you how glad I am to have this place, just today, just, right now.

Glad enough that I would send you all cookies, if I could.

Tastes like... chicken?

2011-11-09T22:42:00.000-05:00

I just finished reading the most intriguing book, The Particular Sadness of Lemon Cake , by Aimee Bender. It had such a unique premise - a little girl who suddenly develops the 'skill' to taste, in the food that someone has made, their true feelings. It's kind of a tempting, exotic idea - to almost be able to read people's minds just by eating something that they've made - or even handled, as she can tell if the factory worker is disgruntled, if the truck driver is ready to retire, if the farmer is lying about how organic his crop is. But with all 'gifts', there are some very severe drawbacks; When Rose first eats the birthday cake her mother has made for her, she is totally unprepared for the overwhelming hollowness that accompanies it, and that, she realizes, must reside within her mother's heart.

The story was both foreign - what an odd concept, when you really think about it, to be able to decipher the thoughts, hopes, dreams, disappointments, trials of a person's life by whatever part of their essence they've left behind in the food they are making - and completely familiar: hers is a mostly normal family, with mostly normal people. The way she talks about sitting at the dinner table and how each person at the table had such a distinct role to play - the brother who tunes them out, the father who pretends everything is fine, the mother who chatters away, the daughter who struggles to survive the next bite. The relationship - lack of, building of, hope of - between Rose and her father was especially poignant to me, definitely reminded me of some of the times I've spent with my dad (either of my dads, really), and the sense of occupying the same space, but entirely different planets.

The quality of the writing here was kind of startling, as well: I haven't heard of Ms. Bender before, but I've already added her backlist to my bookmooch wishlist, because she has a really excellent storytelling voice. And every once in a while, one of her sentences would just sneak up on me, pounce: Truth! Example: "After the incident in the ER, I no longer wanted to advertise my experience to anyone. You try, you seem totally nuts, you go underground. There's a kind of show a kid can do, for a parent - a show of pain, to try to announce something, and in my crying, in the desperate, blabbering awful mouth-clawing, I had hoped to get something across. Had it come across, any of it? Nope. " (p 106) "You try, you seem totally nuts, you go underground:" That sentence there sums up a large portion of my life - you put yourself out there, and if people don't get it, if people don't get YOU, then back into your shell you must go, immediately. And it takes a hell of a lot to try again.

I was greatly impressed by this book, by Rose and her family, and the secrets they all had. By the way Rose just keeps sticking her neck out there, as best she can - and by the way she maneuvers her way through when she doesn't feel strong enough to try again - those days (weeks, months, years), and the getting through them matter too. So: Excellent and intriguing story, one I think is going to stick in my mind for quite a while.

2011-11-08T21:24:00.001-05:00

I'm a little bit behind today because, in addition to other fascinating developments, my mom was admitted to the hospital last night. It's only a semi-big deal, because she was admitted because of really low potassium levels, after a week and a half of not really eating. So, dehydration plus, basically. The plus is: what caused the nausea that made it impossible for her to eat for almost two weeks? Originally, we thought she had the same bug I had, but since mine turned out to be my gallbladder, it's hard to imagine that that would be contagious.

Then she figured that it was switching from one dose of meds to a larger dose, which is still the leading theory, but because they're not sure, they spent the day ruling things (like her gallbladder!) out, just in case. And she still there tonight because of another 'just in case': her EKG was slightly abnormal, and the potassium is not as high as they'd like it, so one more night of observation it is.

It's frightening, even though I know she's in there for a minor issue, to see your mom laying in a hospital bed. And she was in great spirits - mostly like her normal self, just hooked up to an IV and the oxygen cannula (she's got breathing issues that come from smoking for 35 years, so that's why the oxygen stuff). It definitely gives you an odd twist to your gut - My mom, while not exceptionally healthy, has managed to not be admitted to the hospital since she delivered her last child - the child who'll be turning twenty six years old come January. That's a pretty good streak, and there definitely feels like something's wrong to have it broken.

The thing is, my dad deals with that odd twist of the gut in all the wrong ways: I know that he has some pretty poor coping mechanisms - we've talked about his issues with alcohol before, for example - but one of the worst is his ability to catastrophize (I think that's a word, but spell check says no: my psychology background says yes.) It's just ridiculous: since coming home at nine o'clock last night, I have heard about three 'they were so young' deaths; the time when he was a teenager and his grandmother had a stroke and he came home to an empty apartment; and how the neighbor down the street caught MRSA while he was in the hospital for a routine surgery. He told me about his friend's sister-in-law who won the lottery - $60 million - eleven months ago, and then dropped dead last week.

And I know - I know - that he doesn't mean to be annoying, and that his mind is going there because he's worried, but for god's sake - stop putting those images in MY brain!! And the thing is, he doesn't understand boundaries. So I can say, while he's telling this first story about an 18 year old who got hit by a bus, survived and then was killed by an infection in the hospital, that I don't want to hear about these things right now. That tragedies are not exactly what I need to be focusing on at this particular moment in time. That he is stressing me the fuck out.

And he'll stop. Sometimes in the middle of the story, most of the times he finishes it and then says "Ok, I get ya."

But then 20 minutes later, he's back at my door, armed with a little bit of small talk - how was dinner? is the music too loud? do you know how to make quiche? - and somehow it gets from there to tale of a 45 year old wife and mother who was smothered in her sleep by a guy she met online. And when I tell him, more forcefully now, that I need him to shut up and keep that crap to himself, he'll make a serious face, and say things like "Well, it's life; that's life, and you have to remember that." Or when I interrupt him and tell him to knock it off, he'll nod and say "Dad's stupid; he's a guy; what do you want from me?" (I don't even know what that means).

Worst of all, he's talking about how horrible his life will be without mom, and how miserable he is that she's just not here right now. Meanwhile, I can't even get into how many issues they have with each other, or how I'm not certain, most of the time, that they even want to exist on the same planet as each other, but whatever: Sure, your relationship is AWESOME, super, Perfect!!! So there's a bit of denial there, (a bit: ha!) , and then there's the fact that he wants to play Who'll Be Worse Off when my mom dies.

A) NO - I don't want to talk about that.
B) It's stupid to be thinking about this right now, when she's in for dehydration, which is something they can easily fix, and yes, it's worrisome, but (I can't type the rest of that sentence about how it's not serious without it feeling jinxy, but pretend I wrote that, ok?)
C) WTF? Why is this necessary? ALL OF OUR LIVES WILL BE HORRID WHEN THIS HAPPENS so why are we even asking this question???
D) Why are we asking it right now, when B) and we're already nervous about the damn thing?
E) Why are you an asshole? Really - why?

Then he started talking about how she's his wife and that relationship is so vital to him, he won't know how to go on. (I . Can't. Even. ) And she's "just" my mother, and yes, it would be difficult for me, especially me, since I'm so dependent on her, but she's his wife, and that's a whole nother level that I just wouldn't understand.

And then I punched him in the face.

No: Unfortunately I did not. But I shut him off damn quick, because HELL NO. At first, while he was spouting off that last bit, he looked at me, sort of waiting for me to be all "Oh, yes, of course: you will have it much worse than me", and then he saw my face, and he stopped talking post haste. I could see that he wanted to be all explain-y and start justifying what he was saying - because it's a goddamn contest to see who's suffering more? - and I just said "We are Done. Talking. About. This. Now." and he thought twice about whatever it was he was going to say.

Which is good, because otherwise, I probably would have punched him, and then neither of my hands would have been workable for typing out this post, but that's another story, and tomorrow's another (NaBloPoMo) day. In the meantime, we could use some positive vibes over here, if you've got any to spare. Between cancers and gallbladders and hospitalizations and arguments and tension and just getting through the day, I say a few stray happiness vibes are just about due in our neck of the woods.

Good night, bloggy world: Let's all hope tomorrow's a better day.

A little surprise archeology

2011-11-07T20:27:00.000-05:00

Doing a little room re-organization around here - which is to say, in my quest to keep from being buried underneath piles of stuff, I asked for help & people moved my room around. It actually looks much larger and more open (the wheelchair and going around large pieces of furniture are not good combinations. Ask any piece of furniture I've ever gone around), and, while it's not perfect, it's a lot closer than it was before. Of course, move one thing, find another 19 projects that have to be completed, and since we (they) moved every stick of furniture in the room around, you can multiply that by about 300 to get the picture of how much work was unearthed.

In the course of clearing out today's boxes, I found the microrecorder I used way back when I was in college. Originally, I bought it to take notes, but I quickly realized that I wound up transcribing all my notes anyways, because I needed to read them to understand them better, and so I stopped using the recorder in class. Instead, it became a way of recording the fights the PUS and Nana were getting into, the aftermath discussions we were holding downstairs in my room, and basically a lot of Nana saying that she wasn't going to put up with this shit anymore, and they were going to be out on their asses. And by 'a lot', I mean at least 7 years worth of it - just snippets of conversations about the latest brouhaha and her insistence that my former uncle and his family would soon be out of her will, her house and her life.

Listening to all of that again was like flicking a stress switch in my brain - I remember, so exactly remember, the feeling of impotence, sitting there, listening to her, knowing that nothing was ever going to change. Until it did. Until she wasn't there anymore to listen to, and I was left with all these tapes where I could hear her voice, but not her spirit - listen to little pieces of her soul get carved away all over again. I fast forwarded my way through a few of them, just so I could label them and not come across them accidentally again. ( I know I should toss them. I even started to. I think one day I will, but it wasn't today. Because it's still her voice.)

I wouldn't have even bothered with the fast forwarding, except I knew that I taped other things during the course of those years - a brainstorming session for a story I was writing here, a research paper's theories there - and I found those too. (And Oh God: does anybody like the sound of their voice, because I absolutely HATE mine: I sound like a snotty little kid all the time, and I don't know how anyone ever talks to me!)

But then I came across something I had forgotten - the thing that made my day, and made all the trips down twisted paths of memory lane worth it: A recording of No Longer Youngest Nephew, when he was just a little baby, probably 15 months old - practicing singing "Happy Birthday" for his mama. His baby voice is both foreign and familiar - It's not him anymore, but wow do I remember when he sounded like that. I can picture his little chunky self sitting in his high chair, talking about "cake" and "mama" and trying to sing along with us while we prompted him. It's startling, really, how clear memories can be - especially ones that were tucked away somewhere, waiting for someone, or something, to sift through and unearth them.

(This would be a great time for me to have a wav. file or whatever of the recording, but the only way I could think of getting it on here was running my webcam, and then setting it up that way. But a) then you would hear my annoying voice and b) I didn't get a chance to even think about doing that, so you're going to have to take my word that he's adorable. Then and now.)

2011-11-06T20:30:00.001-05:00

I finally decided to take a page from the rest of the internet, and joined Twitter. I'm @NeverThatEasy, if you're interested. I have yet to make a single tweet, however, so there's not much to be interested in, as yet. Right now, I am basically using it to stalk awesome people: Wil Wheaton, Rainn Wilson, Neil Tyson, Nathan Fillion. Random awesomeness, in 140 characters or less. I can see why people like it so much, but if there's anything that proves I'm a horrible over-thinker, it is my complete inability to compose a 1st tweet.

So much (wholly imagined) pressure!

Because tweets are forever, like the rest of the internet, but also because... well the awesome people I follow are so good at it, this wrapping up your life wittily in a minimum amount of words. I - as you know if you've been here for any amount of time - am a bit more wandery in my worditry. (See: also, I like to make shit up. Although that seems to go over well on Twitter, so that works in my favor.) Also, really I have very little to 'update' as I go through my day. "Haven't left the house except to go to the doctor in over two months" is neither pithy nor interesting, but it's true.

My truth is pretty boring right about now, so I'm trying to come up with some imaginative stuff to tweet. And not tweeting is no big deal, at this point. I'm just gonna Twitter stalk the amazing people, and I'm sure something will come to me eventually.

If you're on Twitter, feel free to put your handle in your comment, and I'll follow you, too: give me some more awesome sauce to stalk. (Or if you follow the funniest/most interesting/most relevant person, let me know that too!)

Ah, Twitter: yet another time suck!

Just in time

2011-11-05T21:49:00.003-05:00

As I was looking around here yesterday, I noticed that I have written only 43 blog posts, in total, this year. That's less than half of what I wrote last year (or the three previous years), and basically just a November's worth of posts by itself, on any other year. I don't know why this year has been so writing-lite (although the fact that things around here have been commentor-lite certainly makes a lot more sense now): I didn't even realize it had been until I saw the numbers over there... I mean I knew things were hard, and that writing has been challenging, but I didn't realize just how slow things had gotten. I guess NaBloPoMo showed up just in time.

A few links for your Friday Night

2011-11-04T21:34:00.000-05:00

Here's one that nearly had me in tears: An Open Letter to the Fat Girl I saw at Hot Yoga in NYC. The part that got me?

Oh Fat Girl at Hot Yoga in New York, are you at war with yours, too? Has it let you down? Are you angry with it? I am. Righteously furious, actually.

This stupid body that has failed me in so many ways these last two years. It has been endlessly sick. It has required surgery and bed rest and vicious medication that got me well, but made me feel sicker.

I AM VERY ANGRY WITH IT for being sick, for getting fat, for not doing what I SAY.

But I am nice to it anyway, three times a week, at Hot Yoga.

Because I am A-OK, ALL FULL UP, TOTALLY ON BOARD with the being angry at my body. I would excel in that class, were it offered. But I'm sorely lacking in the being nice to it anyway department. She says 3 times a week for 75 minutes, she cuts herself a break, takes this class. I can't remember the last time I had a nice thought about my body and what it was able to do. When even breathing hurts, it's hard to be happy that you're taking a breath. It's hard, but it shouldn't be impossible. So I'm going to work on that.

Then there's the beautiful Kate, over at sweet|salty, who writes (with such grace and clarity) about something a feeling that is neither graceful nor clear:

The word 'anxiety', especially preceded with the word 'my', needs to be benignly neglected in the way that you ought to benignly neglect that kid who keeps saying the f-word at supper. The word 'anxiety', in its reference to a constant and entirely unspecial human state, needs a yoga retreat with a workshop about how inspiration is a myth that will only stunt its creative process and land it in the 75% of writers who will never type The End.

She talks about fitting in, and excluding yourself anyways; about jumping into the ocean and braving sharks, but hiding away while your friends roast marshmallows. She talks about living, really. And fear.

Sometimes, it's nice to know that other people are on the same page as you. That's how I felt when I read this post from Black Hockey Jesus:

Do you remember, little girl, where we were when we read that book? There was no you or me or the circus of problems where the mind loves to play. We weren’t in a bed in an apartment nor could we be confused with the characters in The Miraculous Journey of Edward Tulane. We were simply gone. We gave way. We became the empty place where stories arrive, where they show, come to be told, appear, where they happen. Because it happened, didn’t it?

The magic of reading is overwhelming sometimes, and in his letter to his daughter, BHJ manages to capture that so, so well.

Lastly, there's this, a quote I had in my files for a while, but I saw it somewhere this week, and it was like a life preserver. Delivering some hope, when I need it most:

It doesn't matter how long we may have been stuck in a sense of our limitations. If we go into a darkened room and turn on the light, it doesn't matter if the room has been dark for a day, a week, or ten thousand years -- we turn on the light and it is illuminated. Once we control our capacity for love and happiness, the light has been turned on.
—Sharon Salzberg

See you guys tomorrow!

Sand Art

2011-11-03T16:16:00.000-05:00

Had my ultrasound this morning - hurt some, but it was manageable. All the while I was laying there, thinking thoughts that shouldn't be thunk .. like how this is probably my 17th ultrasound, and every single time I have one, I'm laying there in that dark room watching the wand scroll through the shadows of my insides and wishing I was there to see the shadows of someone else instead, or of how many other people have laid on that same table, staring into the tv screen or at the flowers painted on the ceiling, hoping for something: for something to be there, or for something not to be there, and holding their breath either way.

And I'm holding my breath too - as directed, of course - and trying not to cry, even though the pressure - the pushing of the wand and the weight of the world - seems immense and overwhelming, when you're laying there in that dark room. My stomach is covered with goop, and now bruises, and I'm once again worried that this can go either way - they'll find it or they won't, they can fix it or they can't - and that, either way, it never seems to help much.

I don't know if you ever did this kind of thing when you were a kid, but they used to sell these sand art kits, where you'd take different colored sand and build layers into patterns or swirls or whatever, and keep them in little jars that you could give as gifts. I made a bunch of them when I was little, and when I was teaching, used them in a lesson on pattern making that the kids all seemed to love. Lately, I feel like my health is one of those jars - just layers and layers of different problems, each sort of shifting now and then, each building on the other, mixing in a bit here and there, all of them just continuously accumulating. And there are patterns, sure, but maybe they're accidental, and some of them might be on purpose, but even so, it doesn't matter all that much, because you're still stuck with the final outcome - all of those layers have built something, only, in my case, it's not something I'd be giving anyone as a gift.

All of those layers just seem to keep adding up, and instead of being on the outside looking at them all, I feel buried underneath them.

There is no cure for chronic illness - I get that. I happen to have a bunch of chronic illnesses for which there is not only no cure, but very little in the way of effective treatments - I'm not happy about it, but I get that too. The part that I can't seem to come to grips with is how those layers just keep adding up - got an infection, got exhausted, started hurting, just never got better. Got dizzy, started passing out, stopped being able to walk. Started using the chair so I wouldn't be bed-bound, started gaining weight, stopped having an appetite. Started hurting more, stopped exercising altogether, got different pains. Got more infections, got random infections, got constant infections. Got nauseous, couldn't eat, gained weight anyways, started existing on a comfort food diet because it was the only thing I could keep down, got some random new disease. Got hospitalized, couldn't bounce back, ruined sleep cycle. Got surgery, couldn't bounce back, got sicker. Did stupid shit, did smart shit, did NOTHING - still didn't get better: It just seems like layer after layer, more questions on top of more problems, and nothing ever gets solved.

Even things the doctors told me would be solved haven't been solved - are my sinus infections down since I got my tonsils etc taken out? Sure; they've decreased by about 1/3, which is nice, but is still a sinus infection every three-four weeks on average. The pain meds help, certainly, but not even by a third, and still I haven't had a pain free day - or even a pain-lite day - in over ten years. Ten Fucking Years. That's a long time for hurting. A lot of layers.

I don't know: I promised myself, after yesterday's rant, that I'd write something more positive today, but I am just not feeling it. I'm feeling trapped and overwhelmed, and out of control. I'm stuck at the bottom under all of those layers, and it's hard to breathe under here.

And that's all I could think about this morning, laying there in the dark, knowing that other people have it worse than me, and some people have it better, but either way I'm still stuck with what I've got. And I don't like what I've got, not even a little bit right now.

Ways November is sucking so far, as of today, November 2nd, 2011.

2011-11-02T20:14:00.000-05:00

Three months ago, my soon-to-be-sister-in-law was diagnosed with breast cancer - they say, even though she caught it really early and, according to her doctors, "saved her own life", that it's late stage one, and very treatable. Today is her first day of chemotherapy, which she is (quite reasonably) terrified of. STBSIL and I aren't as close as I would like - We have some tensions based on her perception of my illnesses (see exhibit A), plus she mostly seems to think my brother is an ass, and (even when I agree with her), that can make it difficult for us to discuss really intimate type things. Added to that, our relationship is just now changing, because LilGirl is in school now, so I don't see her or her parents every couple of days, which is basically how it's been for 11 years, and it's very odd to try to figure out where our lines are now, and how to communicate with each other and all that. So it's hard for me to know how to 'be there' for her - she'll talk to me if we're in the same room, but since I don't drive and she can't right now, that's not happening all that much. I'm not a phone person, but I am trying to put that aside in this instance, to be supportive, and to let her know I can help with things, but she doesn't come right out and say what she needs, so I don't know what to offer help with. It's frustrating, this not being able to help thing, and I don't know what to do with it. But, for today, I'm mostly just hoping that the chemo turns out to be easy peasy, and, if it isn't, I'll figure out a way to help her in the way she needs help.

I'm feeling useless when it comes to other people in my life as well: For some time now, my mom has - quite obviously - been battling depression. It's mostly been presenting (to me) in the 'I can't get motivated to do anything but sit here/I'm thoroughly exhausted just looking at the shopping list' vein, but I can tell there's a lot going on there, and very little of it that she's willing to share with me. She's seeing a therapist, and is trying different medications, but ... so far there's been little improvement. This is challenging to me in a couple of ways - The most important being that she is miserable, and I can't really do much about it (I do send lots of Internet links and things that give her brief smiles, since I remember how important those felt to me when I was at the bottom of the pit, but that's about it). Further down on that list is that there are a million things that should get done that aren't getting done, and I can't physically do a lot of them (laundry, dishes, dusting, meals), so they sit there, taunting her (and me), and as they accumulate, so does the stress and pressure - both internal and from other members of the family. It's another hard reality of my diseases - like not being able to just drive down and sit with my STBSIL - that I can't help out with the heavy lifting, when other people get tired of it.

Which leads to yet another, and more selfish, problem I'm having - with Mum as my PCA, a lot of the things I need help with are falling by the wayside too, and I'm stuck with having to a) ignore them and pretend they don't need to be done, b) add pressure to her by requesting that they be done, or c)try to find somebody else who can do them for me. You'd think c) would be the easiest/smartest choice, but you'd be forgetting that the money Mum makes as my PCA contributes greatly to our household income, not to mention that to find somebody else to do things means I would have to fire my mother , while she is suffering from depression. Oh yeah, that'd feel wicked great.

There are numerous other household issues, too - my sister and her husband are way tired of picking up the slack, which I don't blame them for, and yet can't help worry that it is harming our relationships, on the whole. My dad is feeling crappy because he has RA, and he just started the medication for it. No Longer Youngest Nephew and his dad (Only Brother) are having huge conflicts lately, and I can't understand why my brother won't just back off a little and cut the kid some slack, which is causing conflicts between us. SisterCh seems to be in some newlywed bliss, complete with ability to ignore everybody else for weeks at a time. SisterK is both thriving and homesick in Iowa. SisterS is off in her own little world with her boys again, but still manages to send Facebook barbs about how I'm not making the right life choices. Grandmother is lonely, and I can't stop spreading germs long enough to get over there. And I'm sick. Again. Newly. Always.

(Note to you: Do not read the following paragraph while eating, since I talk about things that may negatively impact your ability to do so. Sorry!)

Three weeks ago, I had a sinus infection, on top of my injured back still hurting so much I was having trouble wearing clothing. Two weeks ago, my back started to improve a tiny bit, but my sinus infection rebounded so that I had to have another round of antibiotics. Last week, I had an MRI, which caused a setback with my back, and then I either screwed the pooch with my migraine meds or caught some stomach bug, because I spent three days throwing up, and haven't stopped being nauseous in over a week. During that time, I did something really wrong to my insides - I thought at first it was a gas bubble from not eating for two days, then, when it got worse and hurt so much three days later, I figured I'd pulled a muscle or something, what with all the puking. It's a very odd pain - sharp, just underneath my right ribs, worse when I'm breathing (which is wrong, because I usually do deep breathing to help with pain), and radiates up behind my right shoulder blade sometimes. It was so intense those first days, I kept wondering if it was possible for an appendix to grow back - but because I am stupid stubborn, I refused to go to the Emergency Room again (it would have been my 4th trip! In under 3 months!) I still don't know what it is, but after today's appointment with Zack, he's leaning toward yet another part of my body revolting against me: this time, my gallbladder.

Are you kidding me, body? What did I ever do to you? I'm scheduled for an ultrasound, ultra-early in the morning, and that's going to be SO MUCH FUN. And then... well, we go from there, and see what's what. However, I think we can all agree, given this rundown, that I might have some real grievances here.

And those are just some of the various reasons this November, this special month dedicated to counting your blessings, is sucking for me so far. You've got 28 days left, November - you're on notice, and you better start improving.

Maybe tomorrow, I can try to write about some happier things. Or, alternatively, I will be on so many pain meds post-ultrasound - I know they don't bother other people, but for me, with FM, and the fact that wearing clothes or being touched at all significantly hurts? It's painful - that you will get some very interesting prose. Come back and see, and we'll all be surprised.

Game On.

2011-11-01T19:55:00.002-05:00

Here it is November First, all over again. And for the first time in five years, I have given very little thought to participating in NaBloPoMo, where you agree to post at least one blog entry for every day of the month. I am seriously doubting my ability to complete the entire challenge, not because of something big and world changing, but because of a million different little things. I talked about it some in this post, already, but I'm still finding it difficult to put words to paper (or, more likely, computer screen) in a way that seems legible and laudable. I mean, I can just say random things for thirty days in a row, I'm sure, but I don't particularly want to do that: I think this blog and I are past the point of just posting to have a post up. (At least, I hope we are.)

No, I want what I say here to matter, and that's half the problem right there - it matters so much that it grows and grows in my mind until I can't write anything, because what can I say that's going to be new or different or interesting or worthwhile? And while I have tons of things I think it'd be great to write about, more often then not, they get all stopped up in my head together, and I spend an entire hour trying to untie them enough to type them out, only to wind up with a mess of nonsense that's definitely not publishable.

So I'm not making any promises on my ability to complete the month, but I am going to commit to sitting my butt down and trying to get the words to come out in a way that makes sense, for three reasons. First, I need to follow through with something - I feel like I'm letting too many bits and pieces of who I am slip through my fingers. Second, we all know that having all of this stuff log-jammed up in my brain is not doing me any good, and it'd be great to get some new perspectives on some of this stuff. And lastly, I always feel such a sense of pride and accomplishment when I complete NaBloPoMo, and I'd hate to either lose that feeling or break my streak.

I could use all the good feelings I can get, at this point. So I'm here to kick of November on the right foot, and cross my fingers that it goes as well as it can. Tomorrow we can talk about all the ways it is sucking so far, but for today, November: let's do this!

Need a dustbuster for a cloud that big

2011-10-23T09:27:00.005-05:00

As usual, my absence here at the good ole' blog is both really complicated & startlingly easy to explain: I got sicker, in one way or another, and writing fell way down on the to-do list. Which, we all know, is never a good thing for my headspace, but for some reason I can't seem to remember that until it's been weeks since I've been here - or written anything longer than a grocery list - and my brain has retangled itself into the jumbled position that writing isn't important enough, that "it's too hard/I'm too boring/it doesn't even matter." And then it takes me forever to actually make sense of anything that's up there in a cohesive way, and more time passes, and then I start feeling the pressure of that time passing, and my thoughts and emotions get so scattered and confusing, I imagine they swirl around me in a Pigpen-esque cloud.

So here are a few health bulletins I can manage to decipher from all that mess:

My back is getting better, and considering that next week it will have been 2 months since I fell, I have to say it's about damn time. It's never going to be great, since that's where my sensitivity is usually the worst anyways, but it's starting to get back to my 'normal' for longer periods of time. I may even put a bra on this week, which I am both dreading and resigned to: with girls as big as mine, bra-less in public is just not a good choice - (Not that I haven't done it a few times in the past two months, because, there was no choice, but if I can put it on, then I should - so I don't feel like a huge slob, anyways.)
The biggest surprise, and mental blow, that I have been dealing with healthwise, just recently, is the news that I am either pre-diabetic or diabetic. A few months ago, after yet another Infection From Out Of Nowhere, I had to see an emergency gynecologist (who knew there were such things?), and during the course of our appointment, she commented on the fact that sometimes, when a patient is getting a lot of random infections, she's found out that their blood glucose levels have been really high, and maybe we should check for diabetes? I shrugged my compliance, fully expecting that it would be just another test in the unending series of meaningless theories doctors have when it comes to my body. Besides, I know Zack runs a blood glucose test on me every time I'm in his office, and he would have told me if mine was wonky. A week later, the gynecologist calls me back, and she says it came back really high, and that means I'm positive for diabetes. It was actually a Hemoglobin A1c test, which measures your average blood sugar during the past three months, and a good number is less than 5%, a pre-diabetes number is less than 6.5%, and anything over that is considered diabetic.

Mine was an 8.2, and I burst into tears when she told me. Mostly because I never considered it wouldn't be negative, and also because diabetes, well, that's FOREVER and SCARY and HOLY SHIT SOMETHING ELSE THAT IS WRONG WITH ME!!! She seemed a little taken aback that I reacted so intensely, but told me that she would get in touch with my PCP, and she'd go over all the options and treatments and what not.

Here's what she didn't tell me, that Zack later did: Infections can cause really high spikes in blood sugar, and they can even cause diabetes. And, in a nice little cyclic twist, diabetes can cause frequent infections, particularly of the skin. It's also another clue into what the hell is wrong with me, according to him. He got really excited about it, because how had it changed so quickly (my blood numbers), and what did that mean - was it a new symptom of the greater autoimmune disaster he considers my body to be, or was it just a reasonable, if wholy unwanted, result of my size and inactivity and poor eating habits (which I didn't really consider all that poor, until I started having to track them)?

Even more mysterious is how, when I was retested by my PCP a week and a half later, the number had dropped again to 6.4, back into the pre-diabetic range. There were lots of "that shouldn't happen" discussions, because apparently an active infection should not cause your blood sugar to spike so dramatically, and since mine did, what does that mean? They don't know, AND I don't know, but what I do know is that even if I'm only part-time diabetic, meaning only when I have an infection, that's still more than half of the year, so I still have to find a way to manage it. Which right now means doing a lot of MATH during the day, and calculating my carb intake and all that fun stuff, which is better than I expected, but still not a lot of fun - it's MATH, people. (As in "Dear Math, Solve your own problems")
I found this out a couple of weeks before I fell, and then the math portion of my brain was out of commission for a while (in addition to any portions of my brain not concerned with pain blocking), and the nutritionist couldn't see me until last week, and then I got another infection - this time just a regular old bronchitis - and now that my brain is turning back on, I'm trying to really focus on what kind of changes I need to be making, and it's getting complicated, fast.
And, to end on a more positive note, some time shortly before my sister's wedding, I found out about a local Fibro study, and was accepted to participate. Unfortunately, it's not for some new miracle drug, but instead is using MRI imaging to study brain responses to painful stimuli, and how well certain coping mechanisms, like visualization and deep breathing and all that effect those responses. It's an easy enough study to be in - an MRI when we started, an inflated blood pressure cuff on my leg to create (manageable levels of) pain, lots of talky talk with the lead investigator for a few weeks, and then another MRI to finish it up, to see if anything's changed. The study itself hasn't been hard, but adding in additional doctor's appointments has been a bit of a challenge, but one I am (now that it's almost done with) happy I followed through with. This is the first real study I've been in (I've tried some protocols with my doctors, in conjunction with a study once or twice), and it feels like such a positive step - even though I know it's not going to be that longed for miracle drug, the idea of helping the doctors figure out what the hell is going on is something that makes me feel like I'm not just marking time, but actually doing something. Which is a nice feeling. Of course, I've been delaying that last MRI for weeks now, because it means having to lay flat on my back for 45 minutes or so, which was out of the question. So I'm hoping to finish that up in the next week, so I can move on to something else.

But I'm going to take a break for today. Lots of complicated medical rambling to start off your Sunday morning.... now I have to go and figure out what sort of breakfast I can forage up.

Rabbit's hole of procrastination

2011-10-09T20:14:00.008-05:00

I'm not sure what most of you use to surf the internets, but I prefer Firefox.* In the latest three (or so) versions of Firefox, there's a new "Group your Tabs" option which is both the best thing ever (!1!11!) and possibly the key to my downfall. Here is what it (basically, only larger and with less concealed) looks like:

All of those little white squares, within the larger light blue squares, are websites that I am in the process of reading, or writing a comment on, or playing a game with, or having a discussion on: They are basically some of the little pieces of my brain that are floating around the internet in some capacity. The light blue squares and rectangles are the groups - I've got a crockpot recipe one going, all the crap I've got to pin (If you're not using Pinterest, you are missing out on one of the greatest procrastinatory tools of our times - sorry I can't share my link: I had to sign up with Facebook, which is obviously not anonymous), videos to watch when I don't also have the TV running, book reviews to read and books to add to my TBR pile, and various other things, including a large group of "read these more carefully" which includes about 2 months worth of Dear Sugar posts, and lord only knows what else (Quite possibly your posts, if we're being honest, since I have run out of space in my Google Reader). When the large squares get so full of little squares they don't fit anymore, you get that layers of paper look that's in that rectangle to the left of center there: that just means there are so many pages to read that I have filled up the group size. (Then I usually shrink it down so it doesn't look like so many, hence the "Books" group being so tiny.) So given that I have all these new ways to organize the things I'm reading/pinning/watching/playing, would you like to take a guess as to how much of the time I spend organizing rather than reading???

Ah, procrastinating my main way of procrastination: it's like Inception for procrastinators! And it's just asking for trouble, I tell you.

Anyways, that's what's new in my world ~ a way to spend more time on the computer and actually get less accomplished, a goal I would have said was near to impossible just a few short months ago! What's news with all of you? You may have said something about that in your latest blog posts, but since I'm still more than a thousand posts behind in my Google Reader, and Firefox has made it so nifty for me to move your post directly to the "Read this more carefully" portion of both my screen and my brain, I can't promise you that I've read it yet. I will get there though!

In the meantime, nice to see you, and I'm sorry if you still use IE: there's really no reason for that. (I may hold a grudge against certain IE related fails from way back when, including the time the program itself seemed to "melt" - actual computer person's terminology that I still have no idea what it means - and took a good three hours worth of schoolwork with it, but that's just my own prejudice.)

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*If I were to put this in SAT terms, it would read My preference for Firefox is to my hatred of Internet Explorer as Eating Cookies:Eating Rotten, Raw Eggs. I have dabbled in Chrome a bit, but Firefox is my platform of choice (if only for awesome plug-in capabilities).

"When I get caught up in the web of feeling, tied up til I'm completely ensared in those slender threads of pain -

2011-09-27T18:58:00.026-05:00

that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make? Kiss it and make it the same. Carrie Fisher

Thanks for showing up for the September Disability Blog Carnival ~ I had such fun (and a few minutes of trepidation, I won't lie) putting this together, and I hope there's something here that is meaningful to you.
I had the tentative theme of Being Seen, and I think we managed to get some great posts that address just that.

I'm going to start off with a rather sociologically bent contribution,Embodied Ontology Model: A Way Forward, which was suggested by Jon. Although it focuses most specifically on the Deaf community and its needs, I think its ontological perspective is pretty compelling for anybody who's interested in the larger sphere of dis/ability. There's a lot of talk about the pros and cons of the medical vs social model of disability, and the gaps that people can fall into if you're looking at it in an either or type of way:

The desire to belong and to fit into society is a strong human need...Recognition of difference, or ...‘otherness’ is crucial for minority groups in negotiating their place to ‘belong’ in the diverse cultural landscape... Yet there is considerable resistance or social inertia to acceptance of any form of difference within society.

I think there's a lot of interesting stuff here about being seen: wanting to be accepted, to belong, but also to have the recognition of differences, and the making a space for (or, alternatively, isolating) those differences along the way. It's definitely thought provoking.

One of the more interesting aspects of being seen, for those of us with 'invisible' illnesses, is the idea of disclosing: How and why and when do you tell people about this part of yourself? Leslie, at Getting Closer to Myself, discusses disclosing, and her specific hows and whens, in this recent post . She's so honest about the need for connection, and the vulnerability that you can feel in those situations: it's definitely worth a read.

The ever-wonderful Laurie, over at A Chronic Dose, has a provides her thoughts on disclosing as well, both as a teacher and as someone who suffers from chronic illnesses.

Next, I'm including a post from the uber-famous Bloggess, about how it feels (to her) to be living through an RA flare, for a couple of reasons. For one, as a person with FM, I'm all too familiar with the hideousness of flares and her words really resonated with me:

"Life passes. Then comes the depression. The feeling that you’ll never be right again. The fear that these outbreaks will become more familiar, or worse, never go away. You’re so tired from fighting that you start to listen to all the little lies your brain tells you. The ones that say that you’re a drain on your family. The ones that say that it’s all in your head. The ones that say that if you were stronger or better this wouldn’t be happening to you. The ones that say that there’s a reason why your body is trying to kill you, and that you should just stop all the injections and steroids and drugs and therapies."

and made me wish I had someone in my life to tell me "“It might be easier, but it wouldn’t be better.” Secondly, since we're talking about Being Seen, I thought it was important to note that such a prominent blogger was able to shine a spotlight on something that doesn't often get discussed. To me, seeing that there are other people out there who get it? Is vital.

Here's a poem Megan at Mirrored Lens posted for Invisible Illness Awareness week, about wanting your doctor to see you (but I know my eyes plead fix me) that I think many of us can relate to.

thatwordgirl spends some time talking about how she wants to be seen, and how she can make herself be seen differently, in this post about being the It Girl. I envy her her costume geekery: although I've gone so far as to paint the Batgirl insignia on my hands for the trick or treaters, I'm not quite bold enough to go full-out Oracle for Halloween.

This post, by Wheelchair Dancer, about the audience's reaction to the dancing vs. her own perception of it is illuminating. I've seen some of those "weaker choreographed" pieces (not from that troupe specifically, but in my internet travels, certainly), where the dancers in wheelchairs somehow seem to be props for the more 'able bodied' members to show off around. And they're kind of heartbreaking. Because I've also seen the wonderfully choreographed ones (and am now wishing I could find them - YouTube, why aren't you cooperating?), where the chairs are neither props nor handicaps, and all of the dancers dance.

Sharon Wachsler spends some time calling out Esquire Magazine, and a few other organizations, in her post Disabled Writers Need Not Submit:

"Nobody has to say, "I wasn't thinking," because they don't have to think . . . about disability. About us. That's what ableism is about. That's what privilege means: not having to think about what you don't struggle with."

Surely it's hard for people with disabilities to be seen if they can't even access opportunities to tell their stories?

And on the subject of telling stories for PWD, I wanted to point out this post, by s.e. smith, because I'm a total bibliophile, and this discussion of Mental Illness in Young Adult literature added more than one book to my TBR pile. Since books mean so much to me, and there's so many just plain bad - poorly written, stereotypical, not at all feasible, miracle cured! - books out there about people with disabilities (for all age groups: I did my thesis on disability representation in picture books, and there was more than one groan-worthy inclusion, let me tell you), I am so glad when someone gives kudos to authors who are doing it right. As smith says "These characters were carefully researched and sensitively depicted, in a way that resonated for many readers."

Thank you all so much for coming to this edition of the Disability Blog Carnival! Next month's edition will be hosted by Spaz Girl (Cara) at Butterfly Dreams. I know she and Penny will keep us posted.

Then she said, “You know, it’s so funny. What keeps any of those people in that dining room from being like me is just a virus, a thing in my body over which I had no control. Why did I get it and not them? Fate. Circumstance. Luck. But I have a place on the earth, just as they do. I have rights. ... When the shrink talked about how the disease would affect my personality, I talked about how my personality would affect the disease. I didn’t understand why nobody… I kept thinking, ‘I am me! I am still me!’” Her voice began to shake and she closed her eyes, then opened them. “Wipe my tears away and give me a chocolate,” she said." Elizabeth Berg: We Are All Welcome Here

2011-09-23T00:00:00.002-05:00

Nope. Nope, I'm not going to go on and on about how I should be posting more - a) there aren't any shoulds out here in the Wild Wild West.com of blogs, and b) I am doing what I can, so that's going to have to be enough. And also: I realize the guilt I feel is coming from me and not some clamoring of readers who are demanding that I provide them with words to read every ten seconds, so I'm going to just try to cut myself a break or two here... for at least this paragraph.

On to new deals - Things here are going ok-ish. By which I mean all of my old problems still exist, and new ones continue to crop up: You know SSDD. For the most part, though, I'm recovering from my fall (almost a whole damn month ago now), with frustrating slowness, but still recovering so I'm going to just take what I can get there.

In the good news department, my cousin - the one who has been on bed rest for the past 4 months because every time she got up she had contractions - has safely given birth to a very healthy, full term baby boy. This is majorly good news, and I"m hoping to get over to visit the little guy and his mama at some point today (if I can bear to put on my bra long enough to accomplish said task). Some sacrifices must be made, and between her bed rest and my not leaving the house nearly ever, it'll be an adventure, that's for sure. Of course, at the end of her adventure, she gets to go home with a little cuddly cutie, and I get to think up creative ways to get my bra off in the car without anybody noticing, so it's not exactly an equality type situation, but what are you gonna do?

I also want to remind people that I'm hosting the Disability Blog Carnival next week, the deadline is Tuesday the 27th, and I am going to swallow my pride a little here and say that there have been very few contributions, and I could use as many of you who would like to participate as possible. Again, you can leave your links on this original post , or send them to my e-mail, link above. I'd really appreciate it.

Somehow or other it's turned out to be Friday again, so have a great weekend everybody!

And then I fell over... backwards

2011-09-12T14:31:00.001-05:00

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)

2011-08-28T00:12:00.001-05:00

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 ...

2011-08-24T10:45:00.003-05:00

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?

2011-08-17T20:12:00.004-05:00

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!)

2011-07-22T19:21:00.000-05:00

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

2011-07-14T14:42:00.005-05:00

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.

-----

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?)

---------------------

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.

-----------

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.

----------------

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?

2011-07-07T22:49:00.003-05:00

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

2011-07-02T21:44:00.003-05:00

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 ...

2011-07-01T19:53:00.004-05:00

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

2011-06-29T19:59:00.003-05:00

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.*

2011-06-25T08:21:00.004-05:00

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

2011-06-14T08:08:00.005-05:00

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

2011-06-07T09:10:00.004-05:00

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

2011-06-02T18:08:00.004-05:00

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?***

2011-05-20T20:45:00.002-05:00

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

2011-05-19T12:51:00.000-05:00

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

2011-05-07T11:11:00.004-05:00

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

2011-05-05T11:36:00.004-05:00

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...

2011-04-29T09:00:00.003-05:00

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?)

2011-04-15T19:12:00.001-05:00

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...

2011-04-08T12:23:00.004-05:00

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!

2011-04-04T18:14:00.003-05:00

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

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

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

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

Go here for some grammar nerdiness.

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

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

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

The WALL

2011-03-26T17:21:00.002-05:00

There is a wall between me,

and Everyone Else.

And I don't know how to climb
it.

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

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

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

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

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

And I think
I need better
battering rams.

Adventure-land

2011-03-19T21:22:00.003-05:00

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

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

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

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

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

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

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

2011-03-08T23:48:00.002-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You know what I'd like...

2011-03-05T22:09:00.000-05:00

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

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

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

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

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

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

A book recomendation

2011-02-25T14:27:00.000-05:00

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

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

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

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

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

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

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

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

Thanks a lot, Oprah, for blowing my cover.

2011-02-21T09:23:00.002-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

I figured it was time

2011-02-07T19:20:00.001-05:00

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

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

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

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

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

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

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

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

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

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

NephTwo

2011-02-06T19:07:00.005-05:00

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

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

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

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

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

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

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

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

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

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

Snow what?

2011-02-01T16:44:00.004-05:00

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

Woo freaking hoo!

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

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

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

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

"Being alone is not the most awful thing in the world...

2011-01-29T19:38:00.004-05:00

You make out to do lists - reorganize linen cupboard, learn two sonnets. You dole out little treats to yourself - slices of ice cream cake, concerts at Wigmore Hall. And then, every once in a while, you wake up... and think I cannot do this anymore. I cannot pull myself together again and spend the next fifteen hours of wakefullness fending off the fact of my own misery."*

Today turned out to not be my best day ever... My original plan was to spend the day shopping with my mom and my sister, maybe have lunch, just be out in the world. (And, not incidentally, away from our house where my dad had declared he would be having a "taking care of me" weekend, the prospect of which is frightening at the very least.) But then my sister didn't feel up to going, so it was just me and my mom, who was in an off mood for whatever reason. But, equipped with lists and coupons and I even remembered to bring my own basket (mine is made of cloth as opposed to the ones in the stores which hurt like hell on my lap), we headed to our first scheduled stop, the craft store.

The store turned out to be wicked crowded and incredibly hot. And about 10 minutes after we got there, I knew that things were going wrong with me: There were a few too many smells, and too much noise, and it was so hot. I started getting weak and bumping into things, and even looking at my list, I was having a hard time concentrating on what I was looking for. I spent a while waiting for my mom to finish up her shopping, and trying not to slide out of the chair or topple over. I don't know why - it just happens like that sometimes. That's one of the things with CFIDS: you can't tell/plan when/why things are going to go to hell. It was so bad I thought I was going to pass out in the store, and waited outside while my mom went through line (she would not approve of that behavior, had she known).

I got the things I needed at the craft store, but between the intense heat and whatever was going on with my body, I was just done. Plum worn out. So instead of a full day of shopping and lunch and being out of the house, we headed home after less than an hour, where I was barely able to crawl back into bed.

A couple of hours of resting and Buffy marathoning later, I was feeling a bit better (less spinning head, more umph), so I turned the computer back on and started checking out the usual haunts. (For the record, those are basically my Reader, my mail, Facebook for chatting, and whatever other tabs I happened to not have finished the last time I signed off.) Reading through my FB activity feed, I see that one of my college friends has a new profile picture up, so I clicked on it.

And there sat nine little children on a couch, posing (as nicely as 9 children under 7 can) for the camera. Nine little children of all the girls I was most friendly with in college, our group of "Alumni Girls." The children of my closest friends, sitting on the couch of one of those friends, about oh 12 minutes down the road from where I am. Which means all of their mothers are sitting there too, and that I was not invited.

And I've missed out on a lot of things over the years - birthday parties and get togethers and weddings and whatnot - and I've not been invited to a few things too, as some of the girls and I hadn't seen each other for years, and grew further apart as time continued to pass. I know that, and, while it's hurt to have to miss things for health reasons, or because I just can't go, I've never really felt unwelcome before, never felt like I was deliberately not included.

Till today.

And I know that's not what it will wind up being - that there's no way anybody thought "Hey, let's not include NTE, because she's such a bitch," or whatever. I know that's not it. The way I figure it either my name never came up because all of my friends were arranging a playdate for their kids, and I don't have any kids, or they just decided not to ask me because the girl whose house it's at is inaccessible to me. So either I was forgotten because I'm not a mom, or I was not asked because they assumed I couldn't make it - but neither of those reasons really makes me feel all that much better.

And looking at that picture, of all those little smiling faces and bald heads and stuffed animals really just reminds me of how much I don't have, of how much I'm missing out on.

I don't have the family, or the kids. And I don't have a bunch of girlfriends that I can just have over to the house (I also don't have) whenever I want. I don't even really have anybody, outside of this computer, who will understand what it's like to not have those things. To want them so badly and just not be able to have them.

To instead be sitting here, with this body that won't even let you go unaided the 6 feet it takes to get into the bathroom, wondering what the fuck happened to the life you were supposed to have. To instead be sitting here in tears staring at nine kids - some of whom you've never even met, and others who call you auntie honorarily - and wishing there was a tenth. Wishing that their moms had thought to call you and say "Sorry you can't make it, but we'll be down the street today, want us to drop by after?" Wishing I'd managed being out in the world for longer than 45 minutes without having to rest for four hours. Wishing I knew how to get from where I am to where I want to be. Wishing I'd never seen the damn picture, and just kept watching Buffy instead, even if it was the one with the praying mantis teacher, and I've seen it 19 times before.

Just wishing.

*Zoe Heller, What Was She Thinking

Dear Neurologist,

2011-01-28T12:41:00.001-05:00

To be honest? I've seen better.

(And yes, I know that EPIC is the computer program they run our medical records on, but it's funnier if I don't.)

Your biggest challenge isn’t someone else. It’s the ache in your lungs and the burning in your legs, and the voice inside you that yells ‘CAN’T’.

2011-01-26T08:50:00.001-05:00

But you don’t listen, you just push harder. And then you hear the voice whisper ‘can’, and you discover that the person you thought you were is no match for the one you really are.” - Author Unknown

I think I need to start a diet - a distraction diet. I keep trying to figure things out: figure out my life, and all the different moving parts that go into it, and I can only concentrate on it for so long before I turn on the tv or pick up a book or wander through my Google Reader. None of which is a bad thing on its own, but when I'm constantly using them to shut off my thoughts, that can't be a good thing, can it?

I'm torn because, on the one hand I feel like it's all too much and utterly overwhelming, so shutting it down for a little bit is a good idea. And on the other I feel like maybe if I just sat with it all for a little while longer - overwhelming or not - I might eventually get to the point where I can figure out how to change something. As it is, once something starts to feel uncomfortable, emotionally, I kind of panic and find something else to focus on as soon as possible. And I don't think that's going to solve anything.

I know that part of it is the physical aspect of it all - if my physical pain is already so high, when something new starts to make itself known - physical or emotional - I try to shut it down so that it doesn't all swamp me at once. But this is only a good short term solution, because it's all still there waiting to be dealt with, and while I am a master at distraction - would you like me to organize your books in color order or find an online recipe for how to make food yummy if you can't have salt? - eventually, it's just me and my babbling brain again at some point.

I don't think anybody likes to sit and be uncomfortable. But I think I need to allow myself to just focus on that a little bit more, because ignoring all my issues is certainly not making them disappear.

There are so many of them, though, and just one of me. Trying to get them to take turns, or to prioritize themselves is also an impossible task, I'm finding. So the more crowded it gets, and the more important things become, and the more I just think "There's too much and I don't know where to start" and turn on the computer instead.

That's why my lists (I told you last week how I wrote lists for hours, right?) are turning out to be so important - if I can break smaller goals down into tiny to do lists, why wouldn't it work for humongous life goals too? It's got to right?

And the first thing on all of those life goal lists? Is going to be figure out what the hell you want to do with your life, because it ain't this.

And even just thinking that, even typing it, makes me want to panic, because, "well, I'm sick and I can't make plans, and the things I really want in life, like a family or a job or a relationship are so SO far from where I am right now, and it's got to be impossible to get from here to there and I don't even have the energy to lift that pile of books that's been sitting on my floor for three weeks so that I can put it away, let alone try to change the whole course of my life." Etc etc. And all that's somewhat true, and all that's very scary, but it's also part of what's keeping me where I don't want to be. I need to try to get past what I keep telling myself is wrong - all those little voices in my head that keep telling me I can't do any of this change thing I want to do so badly, and figure out what things I really can or can't do, if I give it my full attention, my full commitment and my full power.

Yes, I need to be realistic, because there isn't any way in hell I'm running a marathon (although this has never been, and will never be, a goal of mine), or even walking into the next room, right now, but there have to be somethings that I am just too afraid to try and that might possibly work out. I know there are, I can feel them out there, just waiting for me to try for them.

I don't know about physical goals, because my health makes those very dicey, and it's so hard to know which options I should take and which I should pass on. For example, should I start PT again, knowing how badly it went the last three times (major crashes)? Because I'm in a semi-stable state right now, and I have to decide to either a) use that momentum and all of the knowledge I have from my last PT attempts - about how not to push things, and how best to move my body - and hope that it helps this time or b) focus on something else because I don't want things to get worse, and, judging by past results, PT makes things worse. It's a real conundrum, and I don't want to make the wrong decisions, so I just ... don't decide anything and time passes, and nothing changes.

So physical goals are tricky, but I can't let that keep me from setting some. Personal goals are proving to be quite challenging to pin down as well, and the patience other people are always telling me I have seems to abandon me when I am dealing with myself, my own life and issues and problems. But I'm working on it.

I feel overwhelmed, and confused, and stuck, and like every little decision I make is both useless and potentially life changing, all at the same time. But maybe this is how I'm supposed to feel. Maybe figuring things out - major things about what you want your life to mean and how you're going to give it meaning - is supposed to be uncomfortable. I don't believe in the whole "no pain, no gain" maxim, because I've had a whole lot of pain with very little gain in my life, and because adding to that pain seems both irresponsible and ridiculous, but maybe being uncomfortable with who I am for a little while will be beneficial in the end, because it's the only way I'm going to be able to change things. If I continue to look away every time there's something I don't want to face about myself, then nothing is going to change, and nothing is going to get better, and I want things to, so I'm going to just do it as much and as often as I can.

But it's harder than I thought it would be, that's for sure.

I mostly never know the date.

2011-01-19T23:47:00.000-05:00

If you're a student, you write your name and the date on your paper everyday; if you're working, it's probable that you have deadlines to meet or e-mails to send that have the day stamped right on them; some kind of people even read the paper every morning, and one of the first things it will tell you - once you get past whatever headline is shouting out at you in its largest print - is what day it actually is.

But for people like me - whose numbers I can't be certain of, although I know there are quite a few - people who hardly ever have occasion to change out of their pajamas, or step foot out of their houses, or see other people in real life at all, things can be pretty different. There can be large stretches of time where I consider myself lucky if I remember the day of the week I happen to be inhabiting, let along the exact number it coincides with on the calendar. I've talked to SAHMs, and patients in hospitals or treatment centers, and - on the opposite end of the spectrum - vacationers who have similar issues ("You mean the 22nd is this week?? How the hell did that happen?")and for the most part - aside from having to double check my Google alarms for doctor's appointments and the like - it's not really all that important.

I mean it's like needing to know what time it is in the middle of the night - I could make the effort to roll over, reach my glasses, put them on my face, and check the clock, but is it really worth the bother, since I can plainly see it is still dark enough out to be sleeping time? No, it's most likely not.
So finding out the date generally enters into the same category.

I know when important things are coming up, don't get me wrong: Birthdays and anniversaries and appointments and all that are filed (semi-obsessively, next closest event first) in my brain, but I tend to send things like presents or cards a week ahead of time, knowing that I'll most likely miss out on the exact date and figuring it's better early than late. Judicious use of Facebook friends' birthday notifications, as well as the aforementioned Google alerts and text alarms for appointments keep me - more often than not - where and when I should be.

When SisterK called last night with the news that my Grandmother had had another incident that required a rush to the hospital, I didn't immediately connect the dots.

She had been having leg pain, intense and kind of sudden, and so they called the ambulance, and when she got there they found out she had a lot of clots in her legs. Like, if you clumped them all together, the things they took out of her would form a softball sized mass, kind of lot. As I'm writing this she is thankfully through with her surgery and in the ICU recovering, with the hopes of getting moved to a regular floor tomorrow at some point, but it's still pretty serious because she was on Coumadin, which is a blood thinner, so this should not have been possible. (Of course they've also been messing with her Coumadin dosage since her TIA in September, which was also caused by a clot, so maybe they just haven't gotten it where it needed to be yet: I don't know. I do know the doctor's keep saying how hard Coumadin is to get right, which makes me wonder why we have 17 different forms of hair growing creams but only one acceptable, but completely ridiculous to administer blood thinner, but that's a rant for a different day.)

She's ok, right now, is the point. Resting and recovering.

But there was definitely a little while there that things were more than somewhat tense, and where I spent a lot of time trying to stay calm and calm down other people as I spread the word that things were bad. And then there was the moment that I almost had a complete breakdown: when I turned on the Daily Show for a few distracting laughs, and instead got punched in the gut with the goddamn date.

"January 19th, 2011" rang out the familiar announcer's voice.

And I nearly threw up.

Because January 19th, 2008 was the date that I lost my Nana.

And which I knew was coming up, but didn't realize I had somehow stumbled most of the way through without knowing the actual date. Three years ago today I was home, sick, sitting on my bed in tears, trying to figure out how a person I loved could have just stopped living. How I wouldn't get to see her again, ever.

And here I was, three short years, 5 miles and probably a million "if only's" later, worrying about my other grandmother, and whether or not I'd get to see her again. (We actually had plans for lunch tomorrow). Same date, same sense of dread, same knowledge that sometimes things just don't get better. But - thankfully, blessedly - different outcomes.

She's not out of the woods yet, and (even if she were) she's not in the best of health regardless, so there's still a lot of worrying to do, still a lot of fear to face. But at least THIS day is over, at least THIS date has past.

I miss you, Nana. Today, and every day.

It’s your own sweet self with whom you must rendezvous.*

2011-01-17T10:33:00.003-05:00

I spent a lot of time yesterday making lists. Making lists is one of my specialties; I can make a list for any occasion, discussion, event or job - and often do. Yesterday's lists wound up being twelve pages worth of flowcharts and sub-sections, due dates and color-coded keys.

The reason I started making the lists was that I was feeling completely overwhelmed: No matter what I went to do - everything from putting my clothes away to finishing up scrapbook pages had an additional twelve steps that needed to get done before I could even attempt it. Something as seemingly simple as sewing a button onto my winter coat began an unending domino effect of "find the damn needles and thread -> which are still in a box in the cellar somewhere -> I have to get down cellar to go through the boxes till I can find it, but there's snow outside and I have to go outside to get down cellar, which means I can't get downstairs -> so instead just ask someone else to look for the boxes -> but everyone else is doing their own thing already, so now I have to wait for them to have time -> now they are in the cellar, but they can't find the sewing box with the black thread, will pink work -> decide whether or not pink will work on my black wool coat -> Figure that it's not worth it, and continue to go around with an unbuttonable coat in freezing temperatures."

It was all kinds of ridiculous.

So I sat down and started making very detailed lists of all the things that need to happen, according to my full-to-the-brim brain box, relatively soon. Some of the goals were pretty simple, like Stitch the Names on the Christmas Stockings which I have been promising to do for the past three years, but forget as soon as the stockings get packed away with all the other Christmas stuff. This year, I put them in my craft pile, AND they are on my list, so they at least have a shot at getting done. Other simpler tasks include the aforementioned Button Sewing, Putting Pictures on a Camera Card for my mom's digital frame, Hanging up my 2011 Calendar (only 18 days or so late!), and finally get somebody to help me Arrange the Top Shelves of the Bookcases in the Library.

Other goals were more abstract like Have a Comfortable, Usable Bedroom and Be a Better Friend/Family Member, which includes steps like "setting a reminder to make weekly phone calls to people" (because I hate making phone calls, but don't mind it once I'm on the actual phone), and "finally respond to e-mails from three weeks ago". And still other goals are 1000 stepped behemoths that begin with things like "set aside a few hours a week" and end, forty-five arrow lengths later at An Uncluttered and Sensibly Organized Storage Area In The Cellar or Finally Stop Living Out of Boxes .

There are goals that I have to physically do (Call and Make Appointments with Lynne, Zack, and Neurologist ) and goals that rely more on me finally making decisions ( Start Taking New Prescriptions or Call and Say You Don't Want To ). There are goals that have a lot of steps missing, because I am not sure of how to fill them in, most importantly Feel Better and Have Less Pain, but even with out all the intermediate steps, I have starting points for most of these things, something to do or decide or think about that will help me make the next steps.

I didn't realize until I was about 3/4 (and 3 hours) into the process that some of these goals seemed an awful lot like what could be considered New Years Resolutions, even though that certainly was not my goal. Maybe it was the time of year that had so much busyness buzzing around in my brain, but I just needed to get some of it down on paper, get some of it in a place where I could say "Ok, I know that needs to get done, so now I can stop worrying about forgetting it, or never getting to it: It's there, and I'll get to it when I can, one step at a time." And as I was writing the list, and breaking these huge all-encompassing objectives down into their smallest pieces, it made me realize that there were things that I could actually be doing to help me achieve these things. I wouldn't say it made everything less overwhelming (because, hello: please see 12 pages of color-coded lists ), but it certainly made a lot of the stuff seem more doable.

I can't Get all of Last Year's Pictures into Photo Albums today, but I can "label and date a few packages", or "figure out where the extra albums are living". I'm not going to immediately Make Money Selling Extra Stuff , but I can constantly be "weeding out boxes into four piles: Keep Trash Donate and Sell" as I go through them.

And yes, this is not a revolutionary new system of achieving goals that I have created (because if it was, I would please to like my genius check now, thank you), but the same advice those "experts" on tv or in magazines have been giving since they became experts - Break things into managable chunks, or you won't bother doing them. It supposedly works for losing weight, for being organized, for "living the life you deserve," for whatever. I don't know how well it will work for me, in the long run, because I just made my damn lists yesterday, but I will say that it's helped me to think about where I want to wind up, and what kinds of things I can do NOW to help me get there, eventually, someday.

And if there were more blank spaces on the charts then I would have liked (for example, between "talk to Zack" and "start taking wonder drug that fixes everything"), then those are just a part of life - and especially a part of living with chronic illnesses - and I can deal with them when I get there. It's the knowing that I'm in charge of something even if it is as small as "write records request form for Specialist X", that gives me hope, and a sense of control. I might not have any choices about some of the things I have to deal with (hello: Hives; Parents who drink to excess; Living in a house with stairs), but there are still some choices that are only mine to make, and that feels - if totally overwhelming - still pretty damn good.

*Last week's Dear Sugar column

Anger.

2011-01-12T17:06:00.003-05:00

It's a simple word, but a complex emotion. Something familiar to everybody, but still absolutely unique to each individual. And, I realized quite recently, that it is the main obstacle I've been facing (for the last however long) when it comes to writing anything of substance in this space.

Sure, there's been the holiday havoc, and the shingles before that, and the family members' health crises and the three months away from my own home before that, and about a million other, tiny in comparison, issues that keep cropping up, but I've written through that kind of stuff before - I even sort of wrote through it this time. But more often then not, five years, and a gazillion stories and shared emotions into this blogging thing, lately every time I opened the little Blogger tab on my computer, I would find myself struck - and stuck - with all the things I couldn't say.

All the things I have been so angry about that I can't talk about in person - either because I can't figure out how to say them or because nobody actually hears them no matter how loudly I say it - just sort of clumped up in my brain, letting little drips and drops through here and there, but bottling up most of what could actually be said. And the thing about it was, that I didn't even realize it was anger that was keeping the words from coming until I started to let some of it out. I knew there was something: a wall, a block, a barrier between me and the world - even here in this virtual world - but I couldn't figure out where the wall had come from, or how to take it down.

And I still haven't figured it all out, but over the past few weeks something has been made abundantly clear to me (and probably to those people in my life who are paying any attention at all): I am pissed off.

I am pissed off about so many little things, and so many huge things, and just So. Many. Things. And it has shut me down.

It has turned off the flow of words from my brain to my fingers, so that when I come here to write something, all I can think to say is "Things here are busy/crazy/overwhelming, check back later." But I'm not satisfied with that, so I wind up writing nothing and hoping that you all haven't wandered away due to my inattention.

It's shut down my patience, which I'm supposed to have an unending supply of, because that's what people expect of me - To the extent that on Christmas Day I had to lock myself in my room and cry for ten minutes before I could come out and face people again because they were getting on my nerves so much. And the things they were doing would not ordinarily bother me that much, so I know it wasn't just that they were being assholes (even though they kind of were).

It's shut down my ability to put up with crap: I feel unable to take people's shit anymore, and want them to know and to see it as truth that I Am Done. Even the kids are getting a whole lot more of "does this look like my serious face or my joking face? Because I am not joking and you're going to want to stop it right now." I feel like all of my boundaries have been trampled over and over again so I'm left, walking the lines, retrenching, protecting myself - even if that means being overly sensitive and shooting anyone who comes within sight, deservedly or not.

It's closed of my sense of empathy and sympathy - particularly with myself: I am so upset with myself for being upset that I go around feeling like a heartless bitch and expecting people to treat me as if I am that. (Even though I know I'm not.)

It has also shut down my ability to express emotions with any clarity, in case you couldn't tell from that last paragraph. I keep thinking things like "I'm sad; but why?" or "I am feeling such rage right now, and it is out of proportion to the situation we are in, but I can't tell you why I'm feeling it." And it pisses me off even more when someone says something about it ("You seem tired/upset/not your usual cheery self." No, really: gee thanks.)

'So,' you might ask, if you have made it this far into this unending rant about... everything, 'NTE, why are you so angry?' And that's just the thing - I'm angry about so many things, only a quarter of which I can put an actual label on.

I'm angry with passive-aggressive commentary from my family, the kind that I'm just supposed to shrug off and pretend doesn't hurt me, and I'm angry with myself for making those same kind of remarks to them. I'm angry with my illnesses and doctors and the frustrating lack of ANYTHING that I've been confronted with, yet again, this winter. I'm angry with the ableist/racist/sexist/---ist discussions that take place around me, and that I'm not supposed to get angry at them, because that makes me "holier-than-thou." I'm angry at what a shit year 2010 turned out to be, and all the ridiculous drama that 2011 is already holding for us. I'm angry that I'm not doing more about all the things I know only I can take care of, and I'm angry at people who aren't taking the actions only they can do to fix things. I'm angry that there are situations I can't control, and yet I spend all my time trying to control them. I'm angry about things that shouldn't even enter into my life, on other people's behalf. I'm angry that no one seems to notice I am angry. I'm angry about the fact that nobody else is as angry as (I feel) they should be.

I'm angry with myself, with my body, with my family, with my doctors, with the Internet, with the world. I'm angry at my thoughts and feelings, and the fact that they buzz around in my head and heart and stomach incessantly, but when I try to get them down on paper, they become harder to grasp then vapor.

I'm just angry. Mad, frustrated, ranting, coiled, incensed, enraged, inflamed. All of those. And it's painful to be this angry, and to be keeping it all inside.

So when I finally (and I do mean FINALLY, because I have been feeling this way since, at least September, when my Grandmother had her stroke & I wound up semi-homeless again & my doctor told me that my shingles were stress-related hives instead of Listening To Me)... When I finally realized that this emotion that was bottling everything else up, that was clouding all my other emotions and dulling them to the point where I wasn't even feeling them sometimes, was anger, I decided to let it fly. I'm not keeping it to myself anymore. I'm trying not to aim it indiscriminately or disproportionately, but I'm not keeping it all bound up inside of me anymore.

Which may or may not bode entirely well for this blog and what it might become over the next little while, but I'll tell you one thing it definitely will be -

More honest.

Because part of the reason I haven't been writing all that much is because who wants to hear the ranting of an angry woman, especially if she doesn't even know what she's angry about? Would I keep reading a blog like that? I don't know for sure, and I can't answer it for you either. But I think I would, because it's true. And that's all I ever require in whatever I'm reading... that it come from a true place. And that's all I should require from what I'm writing too.

So if mad is what I'm feeling, mad may be what you get. But at least it'll still be the truth.

Welcome to 2011, everybody, let's hope it gets better from here, and if it doesn't, come join me in being righteously angry... because the only way through it is through it.*

*I can't remember which AA or Al-anon or substance abuse program pamphlet I got that from, and a Google search only shows up random religious theologies, which I know is not where I got it, but it still applies. Or, if you prefer: "If you're going through hell, keep going." Winston Churchill

2011-01-01T12:19:00.001-05:00

Hi Guys!

Happy Last Day of 2010! Hope all of you had a very Merry Christmas, and that things have been peaceful around you. My day was, as almost all days are, both good and bad. Highs and lows - extreme and within minutes of each other - are no new thing around here, but they can still be ridiculously exhausting, and that is one reason why I didn't manage to post anything in the past week or so.

The gear up for Christmas is so frenetic for me - even if I take it as slow and easy as I can manage, it is still (at the very least) doubling the amount of activity I do every day. But I still love it, no matter how difficult it may be. Plus, I am learning some tricks as I go along: Online shopping? Yes; Malls on a weekend in December? Hells No. Cookie dough made in extra large batches at least a week ahead of baking day? Yes, genius (also make enough for leftovers!); Trying to make every good recipe I have bookmarked in the past year, Definitely not. Trying to organize present opening so that it doesn't resemble the tornado twist of the Tasmanian devil, give you a panic attack, and make it completely unenjoyable? Yes please; Realizing that not everybody wants to play along with that and taking some deep breaths along the way? Completely necessary. It's not perfect, but it's getting there.

And after Christmas this year, here in the Northeast, brought us the extra surprise/complication of a blizzard the next day that left everybody stuck where they were for a day and a half. Which was ok by me, mostly, except that we were supposed to visit Grandmother, who was not feeling well enough to come to our house for Christmas, and we haven't been able to get over there since (because I need the snow shoveling to be done at her house and not just ours). Also, my sister and her boys came down from New Hampshire for their post-Christmas mini-Christmas on Wednesday - they'll be here till Sunday, and in that time we will try to squeeze in the following things: a 1 year old's second first birthday party, a sleepover for at least three kids, and most likely the fourth, come tonight; the ushering out of an old year and welcoming of the new; my mom's 50th birthday for which I have no gift; finally getting over to see Grandmother; a week plus of my dad being on vacation; feeding all those people for however many days there are, plus a group gathering on Saturday, even though nobody's been to the damn grocery store since before Christmas; and probably a partridge in a freaking pear tree.

I am saying that the year is ending as it went along - momentary joys and happinesses (watching all my nephews get along together, talking to my sisters like the adults we supposedly are, sitting here in my rocking chair typing away while everybody else is sound asleep) surrounded on all sides by stress and drama (the most active one year old I have ever met - and considering I worked in two separate day cares, that is saying a lot -, my parents and their drinking - which, I can't even discuss right now else I will lose my calm -, trying to keep a 10 and 14 year old entertained without just plugging them in front of the TV/computer all day, and on and on and on).

Part of the reason I haven't written this week is how busy I am and part of the reason is that I am having a hard time getting geared up for 2011 - I am as jumbled up about that as I seem to be about just about everything right now. I usually like to breathe in a New Year, with all its freshness and possibilities, in huge gulps, but I am not feeling anything new or fresh in my life right at this moment. At this moment, I'm having trouble breathing in anything, let alone basking in hope and optimism about how different and great 2011 is going to be. The number changing doesn't mean my life is going to change, and I am old enough to know that by now. Which doesn't mean that change isn't going to come into my life next year - for sure it is, and it isn't all going to be good. There are worries aplenty on my list and some joys I am counting on to get me through all that worrying - SisterCh's wedding, SisterK's graduation, not to mention LilGirl Tuesdays and Thursdays, or NephewA's sleepovers.

I guess it's that I can feel - I can see coming - so many hard things I am going to have to tackle in the next few months, that I just want to hit the pause button for a few minutes and have a chance to just be before it all comes rushing at me. But that's impossible, and it's all coming no matter what I say, or don't say, so I should just, dive in. Deep breaths, everybody, here we go.

Happy 2011, let's have as much peace as possible.