Friday, October 31, 2014

My Space; My Experiences

So, I know I've been largely absent from here for a bit. I'm rethinking my whole blog thing, lately, since it's been so semi-abandoned, but for now, I'm just going to jump right back in as if we've only stopped talking briefly.

Because I've somehow, yet again, found myself in a dim room, in the early morning hours, listening  to the rumble, rumble, whoosh of an oxygen machine and watching the chest of someone I love (as discreetly as possible, of course) to make sure it's still rising up and down. I'm somehow, once more, a keeper of someone else's med and meal schedules, daily logs, VNA appointments, doctors binder, and various other illness-related pieces of flotsam and jetsam.  I'm struck, one more time, by how unfair life can be; by how easy/hard it is to pause my own life and help grip the ragged edges of someone else's; by how often I want to hug people; by how excruciating it is to feel both completely useless and optimistically helpful at the same time. By how much of my own illnesses I can cover up, and how much just won't let me even try. By how much I would give for just a couple days off, for all of us.

At least this time, I can be thankful that the couch I'm 'sleeping' on is brand new; that my brother and I somehow managed to make it through all the stages in our youth that would have insured our mutual destruction; that some days spaghetti and meatballs is the meal you've been waiting three weeks to watch somebody eat.

My sister-in-law's cancer came back.

Viciously, and without warning. It came back; it attacked; it took over a lot of places it had no business being; and (in a day I hope is much farther away than it feels right this minute) it's going to take her away from us.

And this is Not About Me.

And I think that's partially why I haven't been writing here: because this blog is about me, and my feelings about things that are going on, and about what kind of mess my brain has conjured up for us on any particular day. But all the stuff that's happening right now, is decidedly Not. About. Me., and so that left it pretty muddled in my mind; pretty difficult to think about, talk about, much less write about.

But I'm on my second week of overnights here, and while today had a bright spot that many of our other recent days have sadly lacked, I feel like if I don't give myself permission to use my words SOMEWHERE, it's going to be bad news for all of us, so... here I am.

Talking about what's not mine, but also what is.

Like memories - still too fresh - of having done this so many times before, and the heavy feeling that settles into my shoulders at the thought of ... well anything, to be quite honest. Staying. Leaving. Helping. Hurting. Waking her up to take her meds or letting her sleep through a dose. Reprimanding her daughter for being late, because I know rules are important, especially now, even though she looks as though I broke her heart for doing so. The taste in my mouth that's dry and bitter and coppery and won't go away.

Of the kiddos I sit here watching - one of them trying to pretend he's not constantly watching his mom out of the corner of his own eyes, as if to reassure himself that she's still there. Who's stressing out about football practice and hockey games and missing CCD and getting - God Forbid! - Bs this semester (his first in high school) in subjects he knows he could master if he Just Tried Harder!!! Never mind that his body is constantly coiled and he tenses up and quiets down when the grown-ups are talking about medical stuff, in the hopes of learning something he thinks might be being withheld from him. As if I can't see how sad he is already, and how hopeful, still. As if I could pick which one of those hurts most.

Or his sister, as she sits and reads her required reading aloud to us each night (Ramona Quimby FTW!), snuggled as close as possible to someone, ANYone, some nights; other nights tucking herself into the lonely corner of the sofa and evil eye-ing off all trespassers into her personal space. Who pouts more and preens more and pretends more and escapes more and seems so god damn confused about everything right now that I just want to secret her off to an abandoned island where she could be safe, and free, and P L A Y without being shhh-ed for making too much noise or reminded, by my mere presence, that the rules are different right now, and she doesn't know how they work. How anything works, because mama is sick and daddy is a mess and all of these other people are 'helping' and she doesn't know why.

Of their mother, the only bonus sister I'm ever going to get, (I assume: my single sisters seem to be set in their straight orientations, but you never know), who sometimes pisses me off and mostly just fit in as best she could/can amidst our crowd of misfits, troublemakers and complications. Who sleeps away another day, and laments her lack of energy, focus, clearheadedness, ability to participate in anything at all, even as she's aware that the meds that are making her that way are supposed to give her more time to stick around and participate in the 'long run.' (and oh, how that phrase chafes and means new things now.)

Of their dad, my original only big brother, who has all the high emotions that run in our family, but none of the healthier release valves some of us have been able to find. So he chaws his tobacco, and I watch the pill bottles closely. He isolates himself in the cellar, and I make sure to send a kid down every now and then to fetch him, so I can feed him up and send him to bed. But he surprises me. He says more open, honest things - to her, to me, to the lovely nurse who helped us on a day when we were sure things were taking a tragic turn - in the short time I've been here than I've probably heard him say in his entire life. Who walks around like he's got an open wound already, even though his wife is still with him. Even though.

Who asked for my help and somehow thought I'd be able to say no.

So here we are - heading into another NaNoBloMo/NaNoWriMo, I might add - and I'm giving myself permission: no REQUIRING myself to stop just letting it soak my brain and hope it'll get better. I'm using my words, about a situation that sucks and is scary, and is too big and huge and makes me want to build a pillow fort (or, even better, just move into a previously constructed pillow fort, with no muss or fuss) in order to hide away from all of this "being a grown-up" bullshit.

I'm determined to be helpful, and if what I can do is sit on the couch and play guard dog so my brother, who really should be sleeping, does a 1am-10am shift to make up for the fact that he has to miss so many days of actually working; than that's what I'm going to do.

And that's were we are, on the eve of this November, on this scariest of nights. Wishing I was five again, when the scariest thing in my life was that creepy as hell mask my dad bought and then decided to jump scare us all (as many time as possible, of course). But confident that even though the illness is Not Mine, and the sum total is Not About Me, I can still have this space to talk about the things that are happening, because the experiences, those are mine. The feelings - the fear, the frustration, the anger, the trepidation, the wanting to, NEEDING to help - those are Mine.

And so is this space, so I'm bringing them together again. As much as I can.

Thursday, September 11, 2014

Forgot to mention

But I'm publishing a review a day for the month of September to catch up with my Cannonball Reads 6 queue - I took a break there sometime around 20 books and the end of April. I've read about a million and a half fan-fics since, but have fallen waaay behind on my book reading, and even further behind on my review writing, so if you're interested, or if you just want to see what I have to say about a bunch of books and maybe you don't already follow me on Goodreads, c'mon over.

A review I wrote last week got a comment by the author on it the other day, so that was pretty exciting! Exciting because I actually liked the book...so she was pleased by the review and I was pleased that she had seen it. It definitely could have gone the other way - I wrote a not-so-great review about another book a few days ago and it still doesn't feel great to me, because I hate to say mean things. I mostly just tried to play the "this really isn't my style" card, but... there were a lot of issues, and I mentioned that a few times. I wasn't actually mean about it, I know that, but it was hard not to follow the "if you can't say anything nice, don't say anything at all" rule.

For the most part though, I'm on a pretty good streak of books, and I think, if I survive September with any brain cells, and anybody's interested, I may link a few of my favorite fanfics and talk about them, come October. (Apparently we can review them for CBR, but since the point is to raise money for charity through Amazon, I'd feel badly since there aren't any Amazon-links to click in the AO3 fics. But this is my page, so I can do what I want. Also, at some point, I should probably recognize that I have been writing here for 9 years now, I think. It might be 10 - time to dig through the archives for that first mess of a post, and see the date again. But I know it was September, so I've got a blog-aversary coming up. And a sick-aversary come October. I'm just full of happy days [and made up words.])

So come check it out, if you feel so inclined.

Tuesday, September 02, 2014

This post may only be interesting to sociology/history/word nerds: I apologize in advance.

I somehow made it through our (granted unseasonably cool) summer months without putting in my air conditioner, and now that it's September, I want it with all of my soul.

Hi ho, internet friends ~ I don't know about you, but September has brought with it all that is muggy and unbearable up here in Massachusetts: We had some thunderstorms tonight that I was hoping would bring some relief, but no such luck. My asthma is so unsure of what to make of this, because some fall pollen is already out, so it's doing double duty battle, and there's some telltale rattling happening.

Calling the fall and the cooler weather, please, since I guess this doesn't even technically count as Indian Summer, as summer hasn't even officially ended yet. But September should be cooler than this.

So, I had this big check-in post planned, originally, with those first couple of paragraphs leading into some stuff that's going on here (besides the weather), when, in the course of typing out the words Indian Summer, it occurred to me that I have no idea how offensive a term that might be, and maybe I shouldn't be using it. And so, a whole new fascinating post (and at least three hours worth of rabbit-holing with Google) were born.

I had to start with the assumption that if it made it into the lexicon as something Indian, it probably didn't start out as a huge compliment, given both the word (Indian vs Native American) and the time period during which it would have emerged (which I was just guessing on, but I figured to be pre Industrial Revolution). Given those, I was not startled to find that there are many opposing viewpoints on its origin, its meaning, and its potential offensiveness.

After a (by no means exhaustive) search, it seems likely that it means "false summer", a kind of fake-out, reminiscent (to me) of Indian Giving, only this time, on behalf of Mother Nature. There are other explanations, sure - Fools summer, maybe; named after Indian Gods who sent the wind, perhaps; or (in a highly unlikely, but poetically, stunning turn of events) having to do with the actual Indian Ocean and its famed shipping, but most of the sources I found seemed to agree that there's a degree of dishonesty or falseness to it.  The majority of the other suggested definitions aren't particularly positive either - Indians burning things, or trickery of some sort - so they're not really helpful in terms of judging its offensiveness.

 Most interesting to me, however, was this blog post from the humorous news site, PTSOTL (whose author also writes for the Boston Globe and other major publications, and who did as good a job Googling as I did, since we came up with many similar sources {even if he is completely wrong about Tumblr, but that's another post}) which talks about what Indian Summer is referred to in other countries, and makes some pretty clear inferences as to its meaning:
Almanac.com has another guess for the meaning. 
The most probable origin of the term, in our view, goes back to the very early settlers in New England. Each year they would welcome the arrival of a cold wintry weather in late October when they could leave their stockades unarmed. But then came a time when it would suddenly turn warm again, and the Native Americans would decide to have one more go at the settlers. "Indian summer," the settlers called it.
 Sneaky bastards, right?  Surprisingly, the American term for the weather singularity may not actually be the most offensive one. Check out a list of all the different terms for the return of unseasonably warm weather from throughout the world in the Wiki entry here, including more info on my Russian friend from above.

In many Slavic-speaking countries, the season is called Old Ladies' Summer...
Only thing worse than a back-stabbing heathen Indian, of course, is a woman, right? Women are the Indians of regular people. 
In Bulgaria, the phenomenon is sometimes called "Gypsy Summer" and in some places "Gypsy Christmas"....
Gypsies are the Indians of Europe, right? Native American European Non-Europeans. Surprisingly, Germany and Austria, always known for their mannered approach toward cultural differences, may have the most reasonable expression:
In Germany and Austria, it is called "Altweibersommer", or if referring to mild sunny weather during October in particular, simply "Goldener Oktober" ("Golden October").
It gets worse though. 
In Hungary, it's "vénasszonyok nyara" (Old Ladies' Summer or Crone's Summer) because the many white spiders seen at this time of the year have been associated with the norns of Norse folklore or medieval witches.
Maybe, or maybe because you can't trust a spider anymore than you can an old lady.

Women, Gypsies, Old-Women, Spiders, Indians - So, it's basically "Outcast Summer"? "Persecuted Peoples (and assorted arachnids that help witches)" Summer? Yeah... I'm thinking perhaps that's not the most stigma-free term I've ever used.

And yet, I've never heard/read/found someone say they were offended by it, so I don't want to just assume it's offensive, but I also don't know many Native Americans people personally (and the one lady I could ask would probably just laugh hysterically in my face, and then roll her eyes at me, because that's the kind of relationship we have: I love her to pieces, but I'm pretty sure she thinks I am the Liberalest Liberal who Ever Liberalled, and, since she loves me back, she just pretends that's not true.).

I'm already anticipating the eye-rolls I will get if I mention any of this to members of my family, because I constantly get crap from them about being "too PC" and "going overboard". I honestly don't believe there is such a thing, but whatever - that's not what I'm trying to do here: It's more checking my terminology and adjusting for how people want to be spoken to/about. Nobody has every mentioned this to me, and I'm not reading some large scale (or even minor scale) treatises about it online, so... I'm not making a huge deal about it because it's not my place to.

It's just one of those phrases that's slipped into our vocabulary over time that I wanted to know more about. And now that I know more about it, I'm troubled. I'm left wondering if it wouldn't be nice if there were a different term we could use here, and if I saw a story tomorrow about how Native Americans found the term Indian Summer to be racists, I wouldn't be surprised.

At least now I know. At least now, if someone asks me to not use the term, I'd have a way to explain it to the eye-rolling people, even if that wouldn't be good enough for them and their "PC monitoring". It's enough for me to know. Maybe I'll start using the German word, that was pretty.

No, actually, Wikipedia has some better ideas: Latvia calls it re/summer ("atvasara") and China calls the period autumn tiger (qiū lǎohǔ (秋老虎), which ROCKS ---> either of these are obviously better vocabulary choices, popular lexicon. Get with the program and let's just start calling it ReSummer - a brief period of summer again after frost/cold -, alright ?

That way nobody gets hurt, no one's culture is ridiculed or appropriated, and it makes literal sense. Problem solved.

Also of scientific note -

  • Some countries have very specific ReSummer criteria (such as dates and temperatures that must be met before it can be declared as such). I did not know this until I started writing this post, and I'm pretty sure the weather people on TV are also not aware of this, because I have heard them say it already, and even I know that it can't be Indian Summer until after the end of Meterological Summer, which is September 22. 
  • According to The Phrase Finder,  "The incidence of Indian summers has increased significantly over the past decade or so (in the UK at least - I can't speak for other countries) as one symptom of the unstable weather caused by global warming."
  • Apparently, haze is also required, according to Almanac.com: "As well as being warm, the atmosphere during Indian summer is hazy or smoky, there is no wind, the barometer is standing high, and the nights are clear and chilly." (Then today DEFINITELY doesn't count, because while we have haze, there is no chilly night happening here.)  

So that's what I learned today, and now I've shared it with you. More stuff you didn't know was racist until you put a little bit of thought into it and realized, "Of course, that seems likely!" This, by the way, describes basically my entire sophomore year of college, if you also include sexist/abelist/ageist/homophobic/etc. Liberal Arts educations are very eye opening, and also make you feel like you have not been paying attention to anything, ever, in your entire life (at least, for privileged people, that is).

 Now back to our regularly scheduled sweating.

Seriously, with the heat: Stop. 

Wednesday, August 27, 2014

"You may never have proof of your importance, but you are more important than you think. There are always those who couldn’t do without you. The rub is that you don’t always know who."

In the next week or so, everybody around here who's going back to school will be heading back. I've already got a steady influx of teacher friends on Facebook lamenting their return to lesson plans, field trips, and core curriculum. I've gone through an initial round of first day of school pictures, and will be prepared for the next round to hit right after Labor Day, when most Massachusetts kids head back to books, backpacks and (hopefully) brain expanding in various forms. It's a time of year that hits me hard, usually, since I am not among those going back to school.

It's been 12 years since I've headed back to school on a crisp September morning ~> before that, I'd done it steadily (and with great enthusiasm, for the most part,) for the previous 19 years, as both student, and then teacher. And I miss it. I miss having to meet my class in the brisk schoolyard before the bell rings on a December morning, watching them all fidget their way into the building, seeing as they mentally prepare for the day now that they've got enough of the school year under their belts to know what's expected of them.
 I miss circle times and study guides and picking the exact right book to introduce the exact right concept. (Not that I have stopped doing this: you can ask pretty much anybody and they'd tell you that my solution to almost everything is the Exact. Right. Book.) I miss the hugs you'd get spontaneously when a kid just overflowed with happy, and the look on their face when something you've been trying to squeeze into their head a million different ways suddenly fits just right, and they get it. I miss having a kid in my class draw a picture of our class, with me in my wheelchair, as if that were the way we were naturally supposed to be drawn. I just miss it, sometimes, is all. And it makes Septembers hard.

But I also think about all the things I've been able to be a part of because I haven't been working. All the days I would've missed out on if I hadn't been able to live with people and make not working a possibility. (Because, health wise, working is not a possibility. But financially, not-working means being incredibly poor. Or, in my case, homeless without the support of my family.) A lot of the things I've been a part of in these past 12 years - good and bad - are things that, had I been at work - I might have missed out on. Or, at the very least, I wouldn't have gotten to experience them as completely as I have.

It's only because I wasn't working that I was able to stay with Grandmother during her final summer:a As hard as that was, it will always be precious to me. Same goes for the time I spent with Nana. I was able to spend a significant amount of time helping to raise the children in my life - thinking of all the times I was able to rock one of them to sleep or help them learn to read or argue with them about politics or introduce them to a particular obsession of mine, those are things I'd never trade. I know that I am lucky to have had those times, to keep having them. I've been able to sit with loved ones who were sick or sad or lonely or lost; I've had the time to lovingly craft things for those I wanted to show how much I cared; I've read all the books in all the land (never: but I'm at least attempting it); I've done good things and tried to be a good person.

It isn't as if I would have consciously made these choices - be sick, don't work, stay sick but learn how to care and express your caring in whole new ways - but things happened, and I did make choices, I have TRIED.

So here we are at another September, and I miss it again: the lure of being normal, of doing what I set out to do with my life is strong. And still: there's another situation in our family where I realize, yet again, if I were working, how would I help? How could I be available when people needed me? It's a real mixed bag, this life. Because I could not be more grateful that I CAN be around for those I love when I know they need me most, but I still hear the siren call of school bells, still get that little twist in my gut when the bus drives by, still sometimes send my teacher friends ideas for lesson plans, unsolicited.

September was always the New Year for me, logically. It never made sense in January, still doesn't. September's when things start changing, when the weather wears down and turns vivid, when the air gets fresher, when the routine starts anew. Our routine this September is going to be a tough one, one of holding together the pieces for as long as possible, and cursing cancer, and helping kids to understand things that there just aren't any Exact. Right. Books. for. And I feel miserably underqualified for this, and too far away, and too close, and yet: that's what you do, I told my brother, as he calls me and worries about his wife. "It's what you do, even though it's torture. You show up, you walk through, you do your best, because you love them. It's all anybody can ask."

So I let myself be sad about missing the work I wanted to do, and I show up. I do the work I've been doing, and instead of sharpening pencils, I try to sharpen my wits. And instead of grading tests, I try to judge where on the emotional breakdown scale my nephew might be falling today. Instead of lesson plans, I work on treatment plans. And I do my best not to do too much, or too little, and I just show up.

---Title quote: Robert Fulghum, All I Ever Really Needed to Know I Learned in Kindergarten (where he, by the way, agrees with me about the whole September = New Year thing.)

Thursday, July 17, 2014

*But literally: just enough.


God it has been a shitty, shitty day. Week. Couple of months. Couple of years. (Peppered with just enough non-crap and actual happiness to make it worthwhile, I suppose.*)

"Say what? She's going to near disappear for most of two months and then come back with this complaint-clusterfuck?" Yes: yes, she is.

You may have noticed that I have been largely absent, and that is because the part of my brain that writes the words (at least the words that make sense) has been taking a sabbatical ~ unscheduled and unapproved, I assure you ~ and every time some words make an appearance, I feel like they're not good enough, or sensible enough, or long enough, or enough enough for posting, and so... radio silence. (Here, at least. My tumblr, what with it's gifs and reblogging and queue never-ending is still going strong, and you are welcome to find me there anytime.)

But I'm breaking my word-fast today because my brain is boiling over and I can't rant about it on Facebook without getting a whole lot of well-meaning, but completely ridiculous faux-advice; Twitter's out of the question because 140 characters just wasn't cutting it; and honestly I would like to start writing here again and coming back and admitting I suck at consistency is sometimes the hardest part.

So, yeah: it's been a tough little while for me, and I'm having a hard time making my brain act like a reasonable adult brain, when all it wants to do is stress-eat (or never-eat), read (mostly Avengers' fanfiction, which, WTF: Now I have a lot of feelings about JARVIS, which ... is probably unreasonable? Seems unreasonable when I am not actively reading about a personified Dummy named DJ** who is super adorable and has to be reminded to wear pants), and move as little as humanly possible because everything hurts.

And I guess people say that a lot "everything hurts," and probably I say it even more often, because I feel like it has lost ALL meaning to people, including myself, because the reality of it is so freaking overwhelming that you can't really think about it all that much without overloading your brain. At least I can't. But I've been realizing just how much Everything and Hurts and All The Time is truly limiting me, and so, I made an appointment with a new pain clinic.

Even though my last three experiences with pain clinics were - in reverse chronological order - useless; 'hey everything you're already doing is exactly the stuff we'd tell you to do, so you're kind of shit out of luck'; and 'hey, i don't think it will really help, but i could try to stick this really big needle in the base of your skull and see it if will numb things for a while, wanna try that?' And I'll note here that I am kind of pissed that I didn't try the big, probably won't help but who knows needle in the skull, at this point, because fuck: did I mention that everything hurts???

My skin hurts. It hurts to wear clothes. It hurts to have the fan blow freaking air at me, even if it's 90 degrees and I'm dripping with sweat. Sitting in a chair hurts, sitting on my bed hurts, laying on every pillow I own (and I own a LOT of pillows) hurts. I've been spending my painsomnia nights designing suspended animation machines that make me float, where literally nothing is touching me, and they sound like the most wonderful things ever to exist. (Except that they don't and I can't design things, so basically, I lay around being jealous of cartoon cupids who can lounge on clouds, because damn, I bet that doesn't hurt.)

But: Pain clinic #4. First appointment: Really nice nurse, excellent office staff. Doctor's kind of an insensitive ass who didn't understand POTS or the wheelchair or why I wouldn't at least attempt to give him a urine sample in the bathroom that was too small to fit my wheelchair (so I'd have to try to walk, which: no.), but not a complete idiot or anything, and usually nobody gets the POTS, so I shrugged it off.  We did a mouth swab and he poked me all over, because taking my word for how much it hurts is never going to happen, I am aware of this by now. And then he comments on my hyperalgesia, which: duh - I just got finished telling you that I almost cried when I put my bra on that morning, but by all means, please rest your hand on my shoulder while you're talking. Also took not of my shading skills  - because you KNOW they all have that little naked generic human form and tell you color in the areas where you have pain, and, well, they mailed me my form, so I had plenty of time to be VERY SPECIFIC about where the pain was the worst (darkest) and where it was just tingles (lighter) and where if you touch me, I most likely will be unable to control myself and will want to punch you in your face (those were red. I like to issue clear warnings. Which he clearly did not heed because shoulders are RED.)  "Do you have enough pain meds to tide you over for a month?" "Yup." "Okay, see you then."

So, today was appointment #2, and the nurse is still nice and the office staff is still excellent, and the doctor walks in the room and says "The mouth swab we did last time didn't show any traces of DRUG I AM TAKING, so we're not going to be able to prescribe any additional medications for you from here on out." Literally, the first sentence out of his mouth.

And I... didn't understand what the heck he was trying to say? Like... "I don't get it." I must have said that a few times, because he started to get impatient with me a little. And I was still trying to process the whole "not going to be able to prescribe medications" bit, because: I'm sorry, that's the whole reason I'm coming here??? So, then he starts talking about "Well we have a few ways to measure compliance with medications, and your drugs didn't show up in your swab, like we would have expected them to if you were taking them..." and he blathers on a little bit before it actually unscrambles enough in my brain for me to blurt out

"You think I'm selling them or something - that I'm not taking them?"

Which: probably not the best response, but I was gobsmacked. I mean... It still is sitting there in the part of my brain that is trying to make sense of the whole thing and ...

Now he's looking at me: "No, I'm obviously not saying that. I would have no way of knowing that. It's just that IF you were taking them, as you say you are, then we'd expect that it would show up in the swab, and the fact that it didn't...." And his face tells me very clearly that yes, yes he is saying that but he is not allowed to say that aloud.

And here I'm going to have to give 6-hours-ago-me a little slack, because I have thought of A HUNDRED MILLION BETTER RESPONSES than getting choked up and almost bursting into tears, but that is, in fact, what happened. I just... couldn't process it. So I tried to to get him to explain it to me like I was five: "If my prescription says take as needed, and I'm trying to keep from becoming, I don't know addicted or completely tuned out of my life, and I freaking PUSH THROUGH THE EXTREME PAIN OF MY EVERY DAY LIFE to save those pills for flares and really bad days and the like, you're telling me that that's a bad thing? And now you won't give me anymore of the stuff that gets me through those really bad days? This.. makes zero sense."

And now, tears are slipping out, and I. Hate. Crying. During. Arguments. Because it makes me feel weak and it feels like playing a dirty card, and the other person obviously sees it as a sign of a lesser argument or something, but I DON'T KNOW HOW TO STOP DOING IT!!! Granted (and again, with the slack-cutting) I held back the sobs that were sitting right there, clustered in my sinuses, clogging in my throat, but some tears definitely slipped out and he knew it, and he was all "Well, if you're not taking it as prescribed then it's non-compliance, and we can't give you anymore meds, in that situation."

And I'm still trying to understand the whole "AS NEEDED" part, and he's still rambling, but what it basically boils down to is "If you hurt as much as you say you do, you would obviously be taking this every minute of every day, like the doctor told you to, so No: I don't believe you, and No: I won't give you anymore."

And at that point, my brain, so GOD DAMN FUCKING SICK OF NOT BEING BELIEVED ABOUT MY OWN GOD DAMN BODY, just refused to accept anymore input. He said more things about "maybe another clinic will see you, but I doubt they'll prescribe for you either. Or take your non-insurance." and I knew I had about 2 minutes before every sob I was holding back just burst out of my throat (possibly with this morning's breakfast), so I just said screw it. Fine. Nodded while he told me how glad he was to meet me, nodded at the very nice nurse who looked at me and knew I was going to explode and didn't try to stop me as I just rushed past her desk and into the waiting room where I told my mother that we had to leave Right. Now.

And I didn't make it 3 seconds out into the corridor before the dam burst, and my poor mom looked like someone had shot her and kept asking what she could do, and all I could say was just "Go. Just go."

Super-fun-happy-awesome-times!

So now it's some hours later, but I'm still angry. I'm angry about - and so unbelievably weary of - not being believed. Not, for one single moment of this entire 20 years of being sick having everybody on my side. And, usually? Having almost nobody.

I'm so tired of having to fight with doctors in addition to fighting whatever the hell is going on in my body. Of having to explain to and make excuses for and prevaricate with and never fully trust the people who are SUPPOSED TO BE HELPING ME. Of having to do so much of this on my own, and knowing that I am messing it up but not knowing how to fix it. And having nowhere to turn.

I just.... don't want to do THIS anymore.

I am so sick of fighting for every minute of every day. Of being punished, or paying the high price, for any moments of happiness, because my body is just ...  the way it is.

And the more I think I've accepted that, that this is me and my body is not my enemy and I have to find SOME WAY to live as much of a life as I can? The minute I start to think I've got a handle on this shit? Everything blows up in my face, and I'm suddenly a newb again, and all I want to do is hide my head in the sand till it all goes away.

And it never goes away.

And time still passes.

I don't know. This is a super depressing post, and I'm sorry for it, but ... I thought I was doing the right thing! That's the worst part. I literally thought that NOT taking a very potent pain medicine three times a day, every day, and... suffering, yes: but... I'm used to that! And, at least I'm there! And... at least I'm present in my mind when I'm there! and then I take the full doses after, because Flare! Of course flares! Because that's what I know, and that's how I live, and that's what I thought was the right thing - save the big drugs for the worst days (or even the slightly almost worst days, because we have other drugs for the worst, worst days), and muddle through - THAT IS BASICALLY MY WHOLE GODDAMN LIFE AND NOW YOU'RE TELLING ME: NOPE, YOU'RE DOING IT WRONG.

Nope: you're not taking ENOUGH of the medicine, so I'm not going to help you at all.

Well, that's a mind-scramble, if you don't mind me saying so. Because half of my doctors say I take TOO MANY meds, and now you're telling me I'm not taking enough AND you're not even going to give me a chance to try it your way, just 'don't bother coming back.' Yup: Mind. Fucked.

So, here I am, reevaluating ... pretty much everything - which has been happening a lot lately, and part of the reason this was so shattering today, because I THOUGHT at least this was something I had a good handle on, but it turns out that Nope: this is a screwed up as the rest of my life and now... FIX IT ALL RIGHT NOW.


So, you know: no pressure or anything.

God I need a nap.

That's me, for today ~ How are all of you? (Are there any of you?) I'm mostly keeping tabs on my regulars via Twitter/Tumblr/Your Blogs that You Sometimes Actually Write Words At Because You Are Magicians or Something, but

Hi! If I haven't seen you in a while. Hope you are well!

Probably your brain is not as scrambled as mine, in which case, I'm giving you a sticker, because you're awesome. (I'm giving myself a sticker too, though, because I'm at least TRYING to be awesome, scrambled brains and all.)

Talk again soon, I hope? In a less ranty, less "oh god oh god why" kind of mood, we can all hope.

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**Seriously: You should read this series. If you want to have Bot-feels (which I didn't, but Oh Well.) And because DJ. I'm sorry, only because you might get sucked in. Fanfiction is like a vortex or something, and NOBODY WARNED ME. I'm not going to warn you either, but... good luck!

Thursday, May 01, 2014

Hulking Out (BADD 2014)

So I knew BADD 2014 was coming up, and my brain has been... uncooperative.  In fact, it has been pretty uncooperative for anything besides reading Marvel fanfiction and carving out random hours of time to spend with my family for about a month now. :shrug: It happens. But a confluence of all three of these things happened over the weekend, and it seemed like too much of a good thing to pass up, so here we are.  Please be warned that this is completely ridiculous and that I KNOW I am stretching the metaphor a little bit too far - OK SO FAR - but... :shrug: It happens. (Also: some spoilers for The Avengers & maybe random comic book knowledge?)


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During a sleepover with my niece and nephew this weekend, my (soon to be 8 year old) niece and I were playing with modeling clay while I was making dinner. Mostly, this consisted of her making a thing, showing it to me, and then setting it aside, or asking for help with a particularly difficult part of the construction (making a Bruins 'B' for her brother required a cookie cutter, as neither of us could make a B that would suffice, for example).  But, at a certain point, I'd gotten all the ingredients cooking and was just sort of waiting for things do be done, and so I sat at the table with her and started to make a figure of my own.

I chose the Hulk because a) I know how to make basic figures in clay, b) the green was closest to me, and c) LilGirl and I had been talking & reading about The Avengers just prior to dinner-time. We chatted a bit about Hulk and how he'd become the Hulk (origin stories - not always appropriate for children!), and how he's usually a 'normal' guy, except if he gets hurt or angry or there's dangerous situations going on. She remembered that her favorite part of The Avengers movie is when Hulk  smashes "the bad god-brother" and laughs "Puny god". She even demonstrated for me with the clay in her hand.  I told her how the old TV show of The Incredible Hulk used to make me so frightened I'd hide behind the couch every time poor Bruce Banner changed into the unbelievably large (to then 5 year old me) Lou Ferrigno, but that once he WAS the Hulk, he seemed ok; even nice, mostly... If you were nice to him. And how he always seemed so sad, at the end of the show, walking off down that highway, twinkly, piano-theme music playing behind him, which led us to talk about how hard it would be to make friends if you were the Hulk. I finished up my Hulk as best I could - his face was still not great, but at least his arms stopped falling off - and she finished her sculpture, which she then gave to me. She'd made her brother a Bruins 'B', herself a smiley faced self-portrait, and me, a copy of my wheelchair. I oohed and ahhed over it, and then the next steps of dinner took over, and I asked her to start clearing off the table while I got the rest of the food together and found her brother.

A couple of hours later, when we were finished eating, cleaning up, and playing games, she went to give her brother the B, and I was going to show off my new clay wheelchair, when I looked to where she'd put them aside, and found Hulk, standing in the chair. LilGirl explained to her brother that she'd made the chair, and I'd made Hulk, and when he asked, "Why's he in the wheelchair - he's a superhero...?" She made a face like he was being ridiculous and answered "So? Superheroes can have wheelchairs -" When he went to say something else she looked to me "Can't they Auntie?"

Before I could respond her brother butt in (the two of them are not great at letting each other finish sentences, but that's what siblings are for), rolling his eyes: "Of course SUPERHEROES can, but HULK doesn't use a wheelchair, because then he wouldn't be Hulk." Now they were both looking at me. Um... OK.

"Yeah, I mean, of course: Superheroes DO use wheelchairs" I rolled into my room and brought out my Oracle trading card, showing her the lovely and super-amazing Barbara Gordon in all her technological splendor. "We've talked about Oracle before, right, how she used to be -" "Batgirl" her brother put in. "Right." LilGirl took the card, gave it back - "Yup, I remember. But Batgirl is not an Avenger, right?"

I laughed and thought about explaining how Batgirl isn't even in the same universe as the Avengers (mostly), but... thought better of pushing my luck. "Right. But... Um Hawkeye - in some versions of the comics: He's deaf, so he has a disability and is an Avenger. And... " Nope: not going to explain PTSD to an almost 8-year-old, but... "And Iron-Man, in the movies he has a panic attack, and sometimes that can be a disability - anxiety disorders."

"And I guess it isn't exactly super-normal that you change into a big green monster when you're angry either" suggested her brother, ALMOST apologetically. "Well, I'm not sure disabled and normal are exact opposites there, bud" I corrected him gently (because you try and correct a 14 year-old any other way), "but yeah, I think maybe Hulking out could stretch into the disability category if we really tried, because it's something in his body that he's not always got control over and a lot of disabilities -" I gestured to myself "are kind of like that. Cousin Sara once called her seizures Hulking out." (Our cousin has epilepsy.)

"Plus, how you said that sometimes the Hulk - or the doctor who is the Hulk - gets so sad because people don't understand him? That's the same, right?" Lil Girl offered and I was kind of stunned. Because -although we talk about it a lot, how people don't always understand about me or how much it can hurt when you want to do things but you just physically can't - I wasn't sure she really ever got that part of it before. Shows what I get for underestimating her. "Um, yeah, kiddo - I guess that would be the same kind of thing, really. Sometimes being sick can be wicked lonely." Her super-sweet brother shoved his chair closer to mine and put his head on my shoulder.

"So see: Hulk could need the wheelchair." LilGirl gloated at her brother, never one to let an opportunity to best him pass. I rolled my eyes at him, because he's older and we share the experience of little sisters, if nothing else. And then I said "He could: but even if he didn't use the chair, he could have a disability. Lots of people do. You can't always tell." 

"Well, this Hulk needs a wheelchair." she said, showing it off. "He looks good in it too," I agreed, "although you probably could have told me that before I spent so long making his legs strong enough to hold him up, you  fruit loop."  She laughed, and we got ready to watch a movie and call it a night.

While I realize that not everyone will be on board with the whole Hulking out/disability metaphor (and I'm not sure I'm 100% behind it myself, as my brain cells would need MUCH better focusing skills then they are currently capable of), when I was thinking of BADD, and what the hell I was going to write about, it was this conversation that I just kept coming back to.  There's a lot I could say about it - I could talk about the power of representation, and having books and media that accurately portray characters with disabilities in a way that helps CHILDREN especially create a more realistic view of their actual world.  I could go on and on about how great it feels that some of what I'm actually hoping these children in particular are learning is actually getting through (Empathy! We can haz it!).  I could definitely ramble at length about how much I miss Oracle even though I love the current run of Batgirl. 

But really, I think, for me, this was about how often we underestimate what kids can understand, and how they understand it. To LilGirl, there was no reason that Hulk couldn't both be canonically Hulk and use a wheelchair: at eight, that limit doesn't exist for her. By 14, her brother, on the other hand, has more experience with the actual Hulk's story, and knows that (in canon) Hulk would never need a wheelchair. Which was also fine, because, to him, having no control over your body whenever you get angry seemed like a disability in and of itself. Sure, neither used exactly the terminology I would have preferred (normal =/= non-disabled, for example), but that's small potatoes compared to the big stuff. The big stuff here being that neither one of them thought it was even the tiniest bit absurd that Hulk - whatever his disability might have been - would be a superhero. There was just enough "Well why the hell not" in both of their attitudes to make me proud. (And not enough "But they're special BECAUSE OF their disability" to make me worry about running headfirst into super-crip territory.)

Because WHY THE HELL NOT??? is basically how kids work, and we should do a better job of living up to that, all around.

PS: Here is our Hulk, complete with his chair. My favorite is the push handles in the back of the chair, because I like to picture Captain American rushing into battle, pushing Hulk's chair while Hulk smashes with Cap's shield.



PPS: In case you haven't heard it, here is a link to The Lonely Man, which is the actual title to the theme song from The Incredible Hulk, which I didn't know until right now. The song still gives me the sads, though.

Saturday, April 12, 2014

Things that shouldn't be hard, but are.

I'm in the handicapped stall in the Bertucci's bathroom, staring at the same four little tiles underneath my feet, trying to breathe, afraid to do anything more, anything other, than that. Outside are 4/5 sisters, a handful of my niblings and not my brother. Inside the bathroom, an older lady who'd held the door open for me when we were both coming in, is coughing in her stall. Peeing.

I'm just sitting and breathing.

In the movies, or books, when a character goes into the restroom to have a breakdown, it is conveniently huge, echoing and empty, or otherwise a single stall with someone rudely banging away on the door. Here, it's me and these four tiles and the old lady in the stall next to me.

And I couldn't have a breakdown even if I wanted to, because everyone is counting on my to be an adult, there has already been enough drama. My brother and older sister already had a disagreement that ended with him leaving the restaurant before we'd even been seated. There was no actual yelling, and it was probably better that he left, because restraint is SO not his thing, but the kids are on edge, the remaining adults are feeling a little awkward, a little off. (Or at least, I am.)

I have not slept - and I mean in any way for more than three minutes at a time - for over eighty hours. No real reason; just a shitty painsomnia cycle combined with brain overload and pills that stopped working all of the sudden. Not completely unexpected or unheard of, just another joy of life with chronic illness. I know I've made it over 100 hours with no sleep before, but it's been a while, and it's definitely disorienting. Everything seems either too close or too far away - as if I'm looking down the end of a spyglass, or as if they are all looking down the end of one towards me. Sometimes both, at the same time.

I've left the table rather abruptly, but when I get back, only one of my sisters notices. She claims I have a weak poker face "The worst poker face", she says. She has no idea how wrong she really is. If she can see through it even that much though, imagine if I had just started bawling in the ladies' room? Imagine if the one who puts everybody else's pieces back together - who can see that my brother's leaving is worrying my nephew and attempt to joke him out of it, who can see that the sister who tried to plan today's visit is poaching in self-recrimination (our first restaurant had been too small, too hot & unable to seat us quickly enough for my brother's patience; this next choice seemed to have no food options for our nephew with multiple food allergies) & try to give her a bit of a bolster (as the one whose plans USUALLY blow up in her face, I know that particular stew too well); who can see which little one is jealous of the baby and which big one is itching for his phone; who notices the fake smiles plastered on and rushes to fill the cracks in between - Imagine if she were to suddenly lose some of her own? 

It is not a thing that any of us wants to find out.

I know I don't always have to be the strong one, or the bossy one, or the one who notices, or the one who tries to help.  It feels like I do, but I don't. Usually, almost always, I WANT to be that one. I don't ever want to be the indifferent one or the one who doesn't care, or the one who walks away. Still,  I try to step back and give people space, and let others step up and fill different roles.

 But sometimes, like today, sitting in the Bertucci's bathroom, staring at those four tiles, trying to pull myself together enough to go back to the table instead of collapsing into a large puddle, I wonder "Why doesn't anybody ever put my pieces back together?"

I hope, some day, that there'll be someone I can depend on to do that for me. With me.

It's a lonely feeling, and I know it's not even 100% valid - I DO have people who care, who help, who fight with me to put my pieces back together: Even today, my sister noticed, asked, tried to help. But sometimes, just sometimes, it feels like I don't have that help, that I can't accept it. And that's a hard way to feel.

And if it took me a little bit longer to put my poker face back on, then I'm just going to have to be ok with that. Because I managed. I pulled through, and ate food, and coaxed smiles out of infants and adolescents and adults alike. I put a smile on my face that was semi-natural and I made it through. And we all made it home.

And that's today's triumph. And I'm going to take it.