Saturday, November 22, 2014

2:41 AM, 10th November, 2014

If you follow me on Twitter, you know that my sister-in-law passed away on November 10th.  She died peacefully - I saw her breathe her last breath, open her eyes, and then, just... never take another one, from the same exact chair I am sitting in to write this post, 12 days later.

She fought so diligently and so hard, for so long, even though she really only had a short time. Her cancer proved to be super-aggressive, and ... towards the end, there wasn't much we could do for her but keep her comfortable, and wait.

That last Sunday was horrible, with last rites, and a house full of family - hers and ours, and theirs - and her being unresponsive by dinnertime. 

That morning, early - like 4:30 in the morning, early - I smelled the sharp scent of urine, and had to feel to see if she'd wet the bed (mostly because, at this point, she was sweating through her clothes so much that she was almost always damp). It was her first bout of incontinence, and - although I knew it boded ill, I did not realize how quickly things would go downhill from there.  I had to wake my brother up to help me change the sheets, and then she took her pain meds and went back to sleep.

A few hours later, she'd woken up in extreme pain, couldn't seem to settle at all. Just kept shifting from one end of the bed to the next, every 5 minutes or so.  She took more pain meds, but was just super uncomfortable and couldn't find a spot that worked for her. She told me her pain was 10/10 and she was crying, almost incoherent.

I woke my brother up again - from the couch this time - and he called the hospice nurse. Who came and different meds were administered, and we - the nurse and I resettled her on the couch, to try to help her find a way to sit with less pain while she waited for the meds to kick in.

It was during this transition that she was last semi-lucid, at least in my presence, and as I sat her down on the couch after yet another 'I'm so uncomfortable, I just need to move' attempt on her part (wordless, though - that's just the impression I got), she leaned over and gave me a kiss on the forehead.

I don't know if she knew who I was then. I don't know if she meant that for me, and I feel guilty that I was the person who got her last kiss. I haven't told anyone in our family that she did it, I don't think (although ... things were pretty intense there for a while last week, so I may have told one of my sisters without thinking about it), but it felt like a "Thank you" and a blessing and - now, knowing it was her last, and she didn't get to give it to my brother or their kids, or even her sister who showed up moments later? Almost a torment.  I still feel gifted by it, always will, but it hurts my heart so much that she's not here to give out anymore.

Shortly after that, her sister came, a family friend who is an actual nurse and knows what the hell she is doing (as opposed to me, who just spent weeks caring for someone I loved and watching them slip away, AGAIN, but was just doing my best and making it up as I went along, and following directions) also arrived, and I moved into a much more peripheral role.

She continued to get worse and worse, becoming unresponsive to everything besides pain, relatively quickly (within a few hours). I let my brother and her sister, and the nurses, be in charge of what they could be in charge of, and I made sure the kids got fed and my parents & sisters got called, and that her sister knew she needed to call her parents and brothers as well. I learned all about the new, liquid meds from the hospice nurse, and gave doses of morphine and ativan and hyamax as the day wore on.

I called the priest, and the funeral home, and the priest again. (And we all know how much I hate making phone calls). We cried, and waited, and held hands, and helped the kids. Gave them a chance to say goodbye, then let the little one curl up into my lap and sob when she walked away. Watched her big brother comfort my big brother as they both sat in tears by my sister-in-law, SisterNc's side.

Watched as her nieces and nephews filtered in and out. Approved as my sister and her husband ordered a regiment's worth of pizzas and made sure everybody got fed. Comforted and cried, and just sat around rubbing smooth patterns into backs, and backs of hands, and anywhere I could reach, really.

Later, her parents and brothers, and my dad and sisters, all cleared out.  We were down to my mom, her sister, the family friend who is a nurse, my brother and I, and a friend who had known them both since the moment they met, some 16 years ago.  Around midnight, it seemed to get dramatically worse, and the med levels increased and the hospice nurse came out again and told us "a matter of hours."

About 2:30, my brother and her sister both decide to go upstairs to get some rest. The nurse-friend, the work-friend and I are sitting in the living room, my mom has snuck outside to get a cigarette.

A quick text from my brother asking me to bump the heat up because it's freezing upstairs, @ 2:37. As I settle back into my chair, I glance over at Nancy, see her breathing is very strange, but I check the book and it is nowhere near time for more meds. So I sit down, and the work friend says to me that she gets an inspirational text every day on her cell phone and starts to read it to me. It says something about "new pathways and being open to new challenges," And that's when I see SisterNc's eyes open, and I notice that she hasn't taken her next breath.

The nurse-friend has noticed too, and is getting up, checking on her, fussing with her. We both know - I can see she knows - that there is no reason to fuss.

It is 2:41 am, on Monday, November the 10th, 2014, and my only sister-in-law, the beloved wife of my brother and mother to two of my favorite people in the entire world, the only sister I ever made instead of came with, has died.

I send my brother a text that reads "you need to come back down, honey", and he must know. He wakes her sister up and doesn't bomb down the stairs. Takes each step, heavily, I can hear it even now. They are both crying as soon as they see us. As soon as they see her.

My mother comes in from the kitchen, seeing us, and begins crying too.

And that was her last day, her last actions, her last minutes, to the best of my recollection. I do not want that kind of thing to be forgotten, even if I am the only one who remembers it.

The past twelve days have been torturous for my brother, and difficult for his children, and so heartbreaking for all of us. I don't know how to help any more than I am, but I fear that it will not be enough.

I am - we all are - doing the best we can.

But it's hard to keep swimming with a broken heart, and hard to hold the pieces together while you wait for even the tiniest bit of it to heal.

Saturday, November 08, 2014

Bullet points for the brainless

  • Maleficent was magnificent: I probably like the idea of the story better than the original Sleeping Beauty. Angelina Jolie's cheekbones are RIDICULOUS in that film. 
  • I just want to nap. For like, ever, hours. I miss me a good nap, especially now. 
  • Somehow days are super long and time is super short right now. I despise this phenomena. 
  • I can't remember the last non-cancer related conversation I had with my sister-in-law, and that's making me physically ill, because it was probably our last actual conversation. (That doesn't involve me coaxing her into taking her meds or trying to swallow her food.)
  • I'm ashamed to admit that I watch her breathe, but it's almost more painful to realize how many people I have had to do that for. 
  • I didn't get to go home for a shower at all this week - things got hectic (but the slow, interminable kind of hectic that can only happen mid health-crises) and schedules didn't line up. But I'm getting one this week. Almost definitely. 
Now it's pill time again; I have to talk to the hospice nurse tomorrow about when it's better just to not try to wake her vs when I should be absolutely making her wake up to take things. (I feel like never, but I don't want her to wake up in pain because I let her sleep through a dose of her pain meds.) 

Friday, November 07, 2014

In a much needed attempt at not being plugged in,

I'm sending my brother and sister-in-law to bed early, and watching Maleficent with the kids. With my luck, the mother dies. (Let's talk about our Marvel-thon this summer and how all the Avengers are freaking orphans, whose mothers are, you know, dead. Better yet, let's not.) But we're going to attempt it anyways. Wish us luck.

Thursday, November 06, 2014

Why doesn't liquor work in real life the way it does on tv?

Today they talked to us about hospice. My sister-in-law is still a month shy of her 45th birthday. She and my brother just bought a house, and never had a honeymoon. And tonight, I need to have a conversation with her children about how they live the rest of their lives without her. Not today, but soon.

There are very few times in my life when I've thought "God I really wish I could drink," given what I know about drinking and how I've never seen it actually help any actual person as opposed to hurt them worse, but ... boy: if it worked like it did in the movies, just numbing things for a little while? Today would be one of those days.

Wednesday, November 05, 2014


I don't think I mentioned, that - in addition to everything else - I'm also working my way to kick NaNoWriMo's butt this month. I'm sure you'll be shocked when I tell you that my story started out as a fan-fic (and might still wind up as one, we'll see how far I stray from characters, time lines, etc.: It's definitely AU already, so we'll see). Given that I'm still reading (99%) Avengers fan-fic at an astonishing rate - can I make my way through an entire character tag? All 3406 (and growing) stories? Oh, I think I can. I think if it's a challenge, it's personally, totally doable.

So my current word count is 11,226, which was kind of shocking, and awesome, and somehow I'm up over 11 thousand (and 1/5th of the way done!) even though I felt like I'm writing basically fluff and nothingness, and it all comes so quickly, and I've got all sorts of "INSERT PLOT POINT HERE'" notations in the text, for all the stuff I'm going to have to fill in later, but: the words are coming, and maybe keeping me semi-sane in the land of chaos, grief and 'I'm totally out of my depth here, what the hell do I do"-ness.

Stucky fan-fic; rambling here, there, and anywhere my family can't see, and occasional frozen treats ~ things that are getting me through today.

And today was a bad one, folks. Hope yours is going better

Tuesday, November 04, 2014

Pulling a Donna Moss

So, like I told you, I don't get to go home to vote today, so instead I'm trying to convince my brother that he should vote my ticket for me. Even though this is not in exchange for my actual vote, I explained it by using this example from The West Wing, with Donna trying to get somebody to use their vote to count for hers, as she'd mistakenly voted for the other candidate on her absentee ballot.
This is torturous for my "I can't believe how liberal you are, are you freaking kidding me" somehow (I don't even know how, because seriously?) Republican brother, but I think I'm going to get him to do it. Apparently Martha Coakley needs all the help she can get today (again: I do not understand how it can be close, but according to the news it is), so I'm just glad I'll get 'my' say.

Monday, November 03, 2014

Sacked out on the couch

listening to the oxygen machine and my niece read me William's Doll; waiting for my nephew to come in and finish his homework, too. The kids have the day off tomorrow, and they're working to make it a really free day, to finish all their work so they don't have anything required of them tomorrow.

Their parents are in bed - SisterNc had a bad pain day, and her meds are kicking her butt. She's mostly sleeping her days away, and getting her to eat anything is like UGH. And tomorrow she starts the chemo again. So, joy of joys. Big/Only Brother is in bed too, since he has to be up in four hours or so to head off to work. And the littles are being adorable, and not little at all, and I'm leaving spaces in my conversations for the words I know need to come out, but I'm also typing with my eyes closed half the time, so there's that.

Well: off to a few final hours of math and reading and not getting up early in the morning.

Don't forget to vote tomorrow, if there's voting near you: I won't get to (since home is 25 minutes away and getting someone to come down, take me home to vote for 6 minutes, then drive me back, and then drive home again? Absurd), so if you can, make sure you do!

Night all.

Sunday, November 02, 2014

Here's how it happens

I go to visit my grandmother after she gets out of rehab, following a nasty tumble down the stairs. I've talked to her, as usual, on our Friday night phone calls, but ... something seems off. She drifts, seems to forget she's talking to me, seems ready to hang up as soon as she answers the phone. I'm worried, but my uncle has assured me that it's just a medicine mix-up, and that it's all under control.

Shortly into our visit, I realize that nothing is under control. My uncle is somehow missing the fact that my grandmother is not acting lucidly, that she's easily confused, that her pain is not being managed well. As we talk, he seems to realize that things are worse than he recognized, and I can see that neither of them are sure what the hell comes next.

I have no idea what comes next, except now I am volunteering to stay on the couch, and help with meds and her PT almost before I knew I was thinking it. I was meant to stay for a few days, but - on the first free day that I went home, to shower and refill my pills and gather some supplies and whatnot - I don't make it as far as my house before I am filled with an overwhelming fear, only manage to make it to my room and close the door behind me before I am sobbing uncontrollably.  The only thing I am sure of is that I need to be there, because they need me, even though I will be able to solve nothing, even though there is no possibility of fixing this.

And that was the last night I spent anywhere but my Grandmother's couch until three weeks after she passed away.


This time, my mother and I have planned to come down to my brother and sister-in-law's house every Thursday, and at least one other day during the week, to clean the house and distract & feed the children, and just... be supportive. The cancer is stage 4: we are hoping for miracles, but know how unlikely they are. We do not care. She does not care, and so treatment continues.

We are there two consecutive Thursdays, straightening things up and moving all their shit into neater piles, and helping the (not so) littles with their homework - basically doing the busywork of life that falls to the side when you're too sick to do anything but sleep and take your meds.

 My brother slowly seems to understand that we are here to help and not to just mess with his shit, and starts confiding how scared he is, how desperately hard this is becoming, how he doesn't know if he's going to be able to do it. On Facebook, he cracks a 'joke' about Stage 4 Cancer and spousal weight loss, and I can see how tightly he is holding on to his edges, how close he is to his private apocalypse, and I ask how I can help.

He tells me he trusts me more than anyone else, and he needs someone he can trust. He needs someone. I know how to be someone, and I push aside the thoughts of how often I need a someone and can find no one, push aside all of the non-essential elements of my own brand of being sick, and transition into helper-mode. I make schedules and organize paperwork and calendars. I make sure someone else will always be here, even if that someone else usually winds up being me.

Not being able to drive, and Mom having a job now, and scarce/uneven coverage during the day, mean that it's much easier to just camp out in their comfy chair, to claim a corner of the living room as my own. Sleepover almost never-ending, for now. For today.

And here there is hope, and here there are treatments, and here there is still that irreversible diagnosis waiting for us at some end, but it isn't now.

 For now, I try to coax my sister-in-law to eat more than three bites of noodles, of pizza, of absolutely anything, and lament that radiation makes everything taste like chalk. For now I keep med schedules and daily logs and ask otherwise inappropriate questions about bathroom habits, and hope that, somehow, she will forgive me. For doing her kids' homework with them and making decisions about whether they can go over their friend's houses; for camping out on her couch when she probably just wants to be alone; for following her into another room when she can't really tell that her feet are tangled in the oxygen cord.

For all the little things that piss me off the most when I'm sick, and I try so hard to avoid, but somehow, occasionally, still slip out. For poaching and nagging and making a sad face when I think she's not looking.

That's how it happens - how, piece by piece, I become a fixture in someone else's story, someone else's home, someone else's days. How I turn off my own life - just for this little while - in the hopes of helping. Just Helping. Sweet jesus, just Let Me Help

In case you were wondering. -

And a lot of people seem to be, and aren't exactly nice when they inquire - "How can you take care of someone else, when you can barely take care of yourself?" they ask. You're right - taking care of me is a struggle. Every. Single. Day. But a lot of that struggle is sitting around, laying around, distracting myself from the pain. Turns out; it's not that much harder to do in somebody else's living room, watching over them while they rest. Waking them up every few hours to try and get them to eat. Reminding them to take their pills when your alarm goes off for you to take your own.

Not saying it isn't hard. Because it's draining as hell and I couldn't be sorer outside of a 5-alarm-flare, but ... it's worth it. To be able to make her smile when I poke fun at my brother. To make my brother be able to go to work without having a panic attack. To hug some kiddos and let them pretend during a game of War. To talk to her sister and let her know that she matters to us too, that Sister-in-law is a part of our family, and that means that her sister can cry on my shoulder any day. To learn more about her, filing away bits and pieces for tomorrows.

If it's something that winds up being too physically taxing - and it already is, it always is - then that's a thing I'll deal with. Because there are a lot of parts of my life I have had to shut down, turn away from, pretend don't matter, and this is one area I'm just not willing to do that with. 

But in case you were wondering, that's how it happens.

Saturday, November 01, 2014

November again

And here we are, ladies and gents. Let's kick this off with literally the shortest post ever. Because I'm sitting in a crowded living room with too many people and too much noise and I can't seem to think straight. So, short post, full of good intentions.

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 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: 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 "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."


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.

---                               ----                                                                           ---

**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?)


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.

Wednesday, April 09, 2014

TBR Mountain? Meet TBR Universe

So if you've been reading here for any length of time, I hope you know enough about me to know that I am an avid reader myself. Of everything. And anything - shampoo bottles, literary tomes, complicated scientific articles, every kind of novel ever (romance, sci-fi, fantasy, crime, thriller, YA...), obscure biographies, how-to books, and so much more. But up until last week I had avoided getting entangled with fanfiction.

My reasoning was not snobbish - I do not consider any kind of reading to be better than any other, after all, and a person who takes immense joy in selecting picture books as presents for people of all ages has very little in to say about other people's reading choices. If you like it; it's worth reading, is my basic reading philosophy. (Which does not mean, if I don't like what you're reading that I'm not going to find some way to build a literary bridge between your (poor) taste and mine, because, really if you like fairy tale retellings, I can find 72 better fairy tale retellings than the one you are reading and then we can talk about it and fangirl together, and won't that be more fun? Yes: yes it will.) Like every reader, I do have issues of personal taste when it comes to books - things that make a good book amazing, subplots I have had enough of, characters I wish would show up more, things that make a good plot go bad - but I'm no literary snob (despite the English Lit department's best efforts).

No: my reasons for abstention from fanfiction were varied & personal  -
  •  A) I didn't know a lot about it, except that it's not always finished & I HATE waiting for things to be finished*;
  •  B) some of the pieces I had wandered upon were ... poorly written/edited/solely smut (not that there's anything wrong with that except for - ) 
  • C) I tend to have my own head canons about things - certain favorite characters, primarily - and I don't like to see those get messed up and
  •  D) the sheer amount of reading material I already have on my plate & an unwillingness to open the Pandora's box of literally ever written character I've ever fallen for having an infinite number of more stories told about them.

But - even with these well-thought out & well-intentioned self-preservation techniques in place - I threw it all out the window one day last week when I started reading a phenomenal Avenger's Fanfiction series. Which I found completely by accident, and which I am very upset there are not more stories in. (See star below.)

But, as often always happens in reading - one thing leads to another and here I am, a week later, having barely put a dent in the multi-verses of fanfiction that's out there, but having a ton of non-canon Avenger feels and ignoring all my other reading responsibilities. 

Literally - I barely have read anything else in a week, and that's unusual for me, because I've always got three-four things going concurrently.  In this case, however, if I don't want to be reading Avenger fanfic, I can just switch over to Sherlock or GoT or virtually any other thing I am even the tiniest bit interested in. Not to mention crossovers. (No seriously: let's not mention them because I maaaaaaaaaaaaaay have spent an entire day and a half stuck in the MCU, and now I'm mad that the Avengers, the X-Men and the Fantastic Four don't all play together in the movies, because of stupid studios.)

There is fanfiction for everything, and for a person who reads as much as I do, this is Very. Dangerous. Information. Favorite author fan fic; favorite character fan fic; favorite book series/movie/television series fan fic; I don't play video games, but if I did? Fan fic.

And it was somewhere between the Nora Roberts/GoT crossover fanfic and the Star Trek reboot fan fic where Bones was finally getting his due that I realized something - some of the first things I ever wrote were fan fic. The Little Women retcon  FIX where Laurie does not end up with whiny Amy and Jo does not marry a professor we know very little about. The Tiny Toons Adventure scripts where they got to hang out with the Animaniacs. The alternate ending to It (spoiler alert) where Bev - who is 11! - doesn't decide to have sex with her friends for no goddamn reason, just because they're lost in the freaking sewers and Stephen King didn't know how to get them out of there without being a creep. (I was 11, and I can guarantee you that it would not have entered my mind to lead the group out of the tunnel that way.  Even if I was a slow learner - and I'll admit I was - 11??? Also: I still think that was a shitty thing to do.)

I've been re-writing endings (And middles.  And beginnings.) of stories since I started reading them.** And while I am extremely relieved that publishing as I was writing was not an option for me (although it may have been and I just... don't share what I'm writing, so it's likely that never would have happened anyways), I'm so glad that the Internet has introduced me to YET ANOTHER group of my people.

I can only rue the fact that it did not include some wormhole that enables me to read while also accomplishing other things, or an extra 52 hours in a day, so that I can devote them solely to reading and actually accomplish something else. As always, there is just so much more to read, and so little time to actually do it.

The sacrifices to readers (and writers) make. ;)

*Please see: Actual Comic Books, a literary art form that I truly love, but only in retrospect. I do not appreciate a bi-weekly serial. I do not like the cliffhanger versions of stories where I'm supposed to wait to find out if favorite characters survive. I get enough of that in my television watching, thank you very much. And also in my book series reading, which I both love and hate: Love spending so much time with characters and revisiting them, hate having to wait for the next book to come out. Am not patient about this, for some reason.  (And this is why I have a half-year's worth of Batgirl comics to catch up on: because I want to be able to read them all in one gulp.)

** One of the many books my mother saved from my childhood is a revision of The Monster at the End of this Book, the first book I remember reading out loud by myself, the first book I loved, as a reader. So, the fact that I then did my own version of it, way back when, suggests I was a little slow to pickup on the whole "fan fiction is for you, you dope."

Wednesday, April 02, 2014

Don't ask me why I watch shows that seem specifically designed to piss me off, ala Dr. Phil & Judge Judy

When I watch a show like Dr. Phil (which: see title) and I see him talking to a person whose behavior is abusive - maybe physically, maybe verbally, maybe emotionally: doesn't matter - and they reach the point in the conversation where Dr. Phil thinks he has broken through to the 'truth' of the matter, that he is making the abuser SEE that they are abusive and that it is unacceptable, and the whole audience sort of breathes a sigh of relief like 'finally: this guy gets what he's doing, he SEES it, and that's going to be good enough," it makes me ... livid? Shake my head? Wonder how a 'clinically trained psychologist' can be taken in by such blatant pandering? All of the above?  Yes: all of the above.

Which is my way of saying I have had yet another 3 1/2 hour 'conversation' with my dad about unacceptable behavior. Mine, to his line of thinking; His, to the rest of the world's.

It seems that my short answers and 'pulling faces' is unappreciated by him - to which I responded "too bad." Short answers and resting bitch face are my least offensive options for interacting with you on a daily basis - a thing that is required because you have gone back on your word yet again and haven't left yet. My tightly drawn mouth is a direct result of having to bite my tongue against the things I'd like to say to you, the names I'd like to call you, the disrespect that the bullied part of me wants to heap back onto you in any effort to expel it. (And which I control not for your sake, but for mine, so that I do not become the bully I hate in others.)

"I'm not even sorry for the faces" I said, at the conclusion of our 'talk': "They're the closest thing to self-control I've got towards you, at the moment. And you're just going to have to deal with that."

That was after three and a half hours of frustrating round-and-round, never-ending saga that anyone of my siblings could basically repeat to you right now, if I called them up, despite not having been at this latest one.

It is, in fact, our family's own special version of the ouroboros - the snake eating its tail, for infinity - He is emotionally distant/abusive/threatening, screws up, calls people names, explodes (usually in a huge, terrifying and abusive way)... there is a 'calming down' period, which is to say a living in denial period where people avoid all mention of the latest incident, then eventually, he is 'forced' (by someone's behavior - not going to lie, usually mine) to 'discuss' it, to 'apologize', to seemingly take responsibility while at the same exact time explaining away his bad behavior by a) becoming the victim rather than the perpetrator (which is how he ALWAYS feels, guaranteed: "I was trapped; you don't understand; I grew up with X...") and b) blaming the actual victims ("Those meds that she's on make her unreasonable"; "Nobody appreciates the shit I do do, everybody only talks about how I screw up" - Well, when you're version of doing stuff is 'making sure there is a roof over our heads' and your version of screwing shit up is 'kicking people I supposedly love out of the roof I am putting over their heads' then, yeah: You kinda have to expect that.)

And round and round and round and round (literally ad nauseam) it goes.

Yesterday's discussion started with my 'bad attitude' which - I am pleased to say - I did not once apologize for. It's not a bad attitude to have boundaries, and to react when they're constantly disregarded (parrots the Adult Child of Alcoholics and Psychology Major, in an effort to actually feel that way, instead of just saying it all the time). It's not a bad attitude to be unwilling to risk being hurt again by a person whose only predictable responses are to lash out at the people around him, particularly when he knows he has a temper (but takes no steps to address it, because "I'm 65 years old" a refrain I have literally been listening to since he was 45 years old) and has a drinking problem (but doesn't see it as one or care to curtail it). It's not a bet I am willing to continue anteing up for - and I said that straight out.

I also told him that he's in denial about the way he actually lives as opposed to the person he thinks he is.
  •  He thinks he's the person who shows up for people, always no matter what. He's actually the person who made the summer my grandmother was dying 3000% worse by picking fights with my mother and sister, threw my sister out of the house the night of her wake and then didn't even come to the funeral. That's who he actually is. 
  • He thinks he's the guy who didn't abuse his children because he never made us go hungry or put us to work at the age of 9 (as he was forced to do when his father abandoned his family). And that's partially true - we've always had food on our table, even when it was tuna, white bread and deviled ham. And while we may not always have been grateful for that (I guarantee that I was never grateful for either tuna or deviled ham), I also don't think he deserves a trophy or cookies or a special award for meeting the bare minimum standard for decency.  I told him that while he may not have been the guy who left, he certainly was abusive. IS abusive. He's actually the guy who told me I was a "cold hearted bitch, just like my mother" and just recently explained that, had it not been for the "burden of me and my 'disability'"(which he put in goddamn air quotes), he and my mother would not be breaking up. He's actually the guy who made me* afraid to EVER make a mistake because who knew how out of proportion the punishment would be; the guy who doesn't know how old his children or grandchildren are; who thinks his relationships are fine even though he puts no effort into them at all.   
  • He thinks he's the guy who puts every single dime he earns into other people's needs. He's actually the guy who went out and bought himself a new TV-set for the basement because he "didn't appreciate the cold shoulder" my mother was giving him in the den (even while dodging calls for the past-due mortgage), who goes out and blows ??? money on drinks and food every night, who asked the daughter he "physically can't stand" (and is on a highly resctricted income) for loans so that we could keep the electricity on for Christmas (and won't explain how the money slotted for that bill just disappeared).

I pointed out all of these inconsistencies last night, and at times - like the Dr. Phil guest - he seemed shocked into silence. Into agreement: "I know I'm an asshole" he would say, as if it were news to me. And then, five minutes later there would be the "But what you don't understand is...." and I would sigh and shut it down.


Which I had to say at least 15 different times and at least 15 different ways. And in the end it was still "I don't like you being mad at me" and "We at least need to be civil."

No: I am not civil to people who speak to me in abusive ways. No: I am not civil to people who speak to my mother (sister, brother, friend, stranger on the street, lady on the telephone, aardvark in the zoo) in abusive ways.

No: I do not placate bullies any more. Because I have done so: too many times to count. And it's ridiculous to pretend that that does not play into his cajoling routine, that that is not, in fact, a vital element in our tail-swallowing-snake-swallowing-tail loop.  But the fact is that I am determined not to do that anymore, and no amount of bullying on his part (or on the part of my other family members, who continue to make me feel like the unreasonable, bitchy, judgemental one) is going to change that.

I have a right to build boundaries, and have them respected. "It's not fair that you won't at least be civil to me, when I keep asking if you need things or cooking or..."

"No: It's not fair that you continue to ask me questions when I've told you to leave me alone. It's not fair that you use my illnesses (and inability to sometimes preform a task like cooking) as a ransom if I don't behave the way you want me to. It's not fair that I have constant anxiety whenever you are in the house, that I'm always waiting for the next big blow up - those are things that are not fair. Me telling you to show respect to the limitations I've place on our relationship? Is beyond fair. Me, not responding in kind when I have any number of names I could - in all FACTUAL honesty - call you? Is beyond fair. You're getting more from me right now - with all the looks and bitten tongues - then I feel you are entitled to already, so you need to just leave me alone, and let it be."

So: +10,000 points for me, for sticking to the script (and yes, you know I write the script for this sort of thing in my head - if not on paper - at least a million times) and not giving in even when he tried to make me feel uncaring and cold.

But -10,000 points because I know he will do absolutely nothing with anything we talked about yesterday, and I'm just going to have to keep having this conversation until we can finally move out.

*One of the hardest things I do in these 'discussions' is stick to "me statements" because I can't speak for the experiences of all of my siblings with 100% accuracy. But I know damn well that 3/5 of us would say he's been abusive. And the other two would describe abuse while saying "he did it for our own good", which... speaks for itself, in my opinion.

Tuesday, March 18, 2014

I confess: I totally made up more than one science fair set of data. It's too late to do anything about it now, Mr. Lindstrom!*

Because I am currently in a measuring cycle of illness (wherein the doctors want me to record everysinglepiece of information about my illness numerous times during the day, and I hate it, and then I forget, or I am too sick, or I am too sore, or I just do not care at all, and I am tempted to just fill in all the blanks the way you would if you forgot to do your science fair homework and needed to some extra research done), I am going to hit you with a by-the-numbers post:

  • 17 - The number of prescription medications I am currently taking
  •  2.5  - The approximate number I think are actually doing something, maybe? Who can tell?
  • 0 of those are new drugs and 
  • 2 of them are for breathing, so that's good, anyways.
  • 86 - My average resting heart rate for the past month
  • 139 - My average standing (or post-standing) heart rate for the past month - That's just standing: God forbid I try and do anything over that because then
  • 175 - My average "I attempted to also stand for longer than it took for the pulse ox to read my pulse" rate for the last month 
  • 1 - Number of times I have left the house since the calendar read March
  • 0 - Number of times I have left the house since the calendar read March that were not doctors' appointments  
  • 3 - How many different strengths of antibiotics it took to kick this last sinus infection, probably because of
  • 5 - The number of sinus infections I have had to treat since Christmas
  • 17 - Books I've read in the past week
  • 1 - Books I've written a review of for Cannonball Reads in the past week
  • 0 - Reviews I've actually posted on Cannonball Reads in the past week
  •  17,000 - Number of excuses I've given to myself for not writing/posting any of the others
  • 14  - Number of people who have promised to come over/said "we should come over"/attempted to/said they would like to see me since the New Year
  • 4 - Number of people who have actually come over (and one of them is an infant, and the other a husband, so neither of them had much say in the matter)
  • 2 - Number of times I've watched the Veronica Mars movie already (Yay Kickstarter! Yay for getting first run movies delivered to your computer! Boo to computers freezing at P I V I T O L moments in the movie! (If you have seen it, think 'cars', fellow Marshmallows, and you will understand why I was so unhappy.) 
  •  1.5 - Number of days it took me to watch all 3 seasons of VM on Amazon Prime in preperation for the movie 

  • 6 - Number of draft posts I have written since I've published a post here, all incomplete
  • 5 - Number of Tumblr posts I have published for the I am a co-admin of, in the same space of time (because giffing is easier than writing, people)
  • (Currently most popular, by the way: For all of you chronically ill Whovians out there)
  • 63 million (approx.) - Number of times I have wanted to throw the computer and it's stupid Excel spreadsheet of numbers out the window since I have been symptom tracking
  • 3 - Different websites I signed up for because I thought they would help with the symptom tracking, only to bail because it was easier to Excel it myself 
  • 2 - Separate weeks my dad has been on vacation already this year, and I have been stuck in the house with him
  • 0 - Clues that he has that there is anything 'off' in our 'relationship' even though I have spent the better part of 
  • 2 - Separate weeks ignoring him as much as possible (When I had the sinus infection it was 0% possible, because I could not even find the kitchen, let alone make food.) 
  • 39 - Average number of hours a week my mom has been working at the retirement home for the past month
  • 100% - How exhausted this is making her & how much it sucks to still be the one who can't work, even though I'm 
  • 200% proud of her for kicking ass and doing so awesome (The old people love her, of course: They all request her and one woman told her she was an "angel on earth." But it's also seriously depressing, and even the stories she comes home with bring up all sorts of Grandmother-y related feels for me, so I know how tough it is on her.)
  • 16 - Other things I've got on my to-do list for tonight
  • 2 - Realistic count of how many of those things I might accomplish (eat/shower)
  • 0 - Cares I give that my to-do list will be carrying over to tomorrow
  • 100% - Realization that I should rename the to-do list the "Carried over from before" list, because it's more honest.
And finally:
  • 6:00 - The time, and that means more numbers to mark, more foods to eat, more pills to take, more things to cross of the list. 

*And I usually NEVER cheated, but ... I'm not going to watch this stupid thing for three months: I'm going to put it together a few weeks ahead of time - IF you're lucky.  My brother and sisters were all "do it the night-before-ers", so I think me occasionally fudging the data on whether or not cats and dogs are right and left pawed is not, so much, the end of the world.