Bet you thought you'd seen the last of me

I mean, I come around once every 6 months or so and expect you all to still be here: what's up with that? Not much, really.  Just a hope that some people have stuck around, and a heartfelt "thank you" to anybody who manages to read this. I'm still trying to get used to living the life of a chronically ill guardian/co-parent (who lives on the couch in the living room, still), and it's ... A. Lot.  Much, much more than I ever could have predicted, and it's taking pretty much all of my brain cells to make it through the days. So writing? Writing has fallen to the wayside quite a bit, unfortunately. 

BUT - I am determined to participate in the Blogging Against (Dis)Ableism Day in two days time, so I figured I'd better make myself say 'hello' so I wouldn't be too ashamed/intimidated to show my face here again, come Sunday. 

And I'm not completely absent from the web - you can find me tumblring at Au-NTE & Whatshouldwecallfibro, pretty much always. (There's a queue: I love me a queue I can fill on good days, and not worry about on bad!)  I'm also participating in Cannonball Read 8 (although I'm behind there, too).  My latest review was pretty much a rant-filled "Are you kidding me with this bs?" kind of post that - if you've spent any time here at all - you can depend upon me for, if you're interested (the book's publisher was seriously NOT, and left a comment that I had no idea how to respond to, which was a new 'adventure' for me).  And I tweet about ridiculous things, and important things, and my love of all things Hamilton, too, if you're interested. 

Either way: I'll see you back here on Sunday, and I'm going to attempt a 'post every single day' after that, just to force myself back into thinking what I have to say is valuable, and setting aside the time for it.  (Even if all I have to say is random memes, because: guys? I am good at random memes.)

“In my closest circle of friends — you know the ones, the ones who are the family you choose instead of the one you are assigned — when someone is having a difficult time, we will remind each other that there are as many paths as there are people, and that while none of us can walk another’s path for them, we can all raise our lanterns a little higher, and let some light spill over to make the going less difficult and scary and lonely. ”Commenter, Teaspoon, via Kate Harding's Blog

Hey guys!  I know it's been forever (only five months, but who's counting?), but can we just agree to put aside the awkward part where I say how sorry I am, and you all read it and forgive me anyways?  Agreed? Good.

I can't make any promises about writing going forward, as things here are even less settled than they were the last time we spoke, but I miss this.  I miss you, and our weird conversations, and having a place that nobody I know in real life ever comes.  I miss the words - so much - and I think, just maybe, that my brain may be turning that light bulb back on a bit, which is a relief, let me tell you. (I don't think you ever get over the fear that the words just... won't come back this time.  At least, I don't think it's a fear I'll ever get over.) 

So anyways ~ how's about a quick update?  Next week, my brother, my mother, his kids, his sister-in-law and I are off for a quick jaunt to the Happiest Place on Earth, and it feels so incongruous to where everybody's actual feelings are that it may just be the most ironic trip ever.  -- Excepting the nine-year-old, who has a countdown on, and can't hold any non-Disney related conversations, and it's adorable and annoying in (nearly) equal measures.  -- We're nearing the anniversary of their mother's death, and it's definitely being felt: there's so many other anniversaries on the way to that one - her brain surgery date, her last hospital admittance, the day I came to stay 'for a bit' - and each one is a little dig in someone's heart, a little pinch they can't seem to ignore. 

My brother's grief continues to be overwhelming.  He's made some positive steps since last year, but as the anniversary approaches, I can feel a lot of them sliding away.  His mood vaciliates between pissed off, checked out, and maudlin, and the kids and I seem to often be at the mercy of them - it's hard to help a kid through their tough day, when their dad is upstairs slamming doors and ignoring people.  I'm cutting him as much slack as I can, because I DO get that some days are harder than others, but... tantrums in front of your children are a line I am dragging him back across, some days to both of our peril.  The thing is, I can see how hard he tries - on the days he's trying - and I guess I know him better than anyone else does, because I can SEE how much he's hurting, all the time, and I can feel what an accomplishment it is that he even gets out of bed most days.  And I wish he had the space for his grief and the time for his grieving... that's what I'm attempting to do here, anyways, is make it a little bit easier on everybody else, but... when you have kids? You just don't have the luxury of grieving the way you want to.

He can't afford to bury himself in a hole, or hide himself in his room.  And neither can these two kids. 

Both of whom are doing exceptionally well - with various issues here and there: The little one knows a lot more about anxiety now then I wish she'd ever have to know, and the older one walks around some days as if it's his responsibility to... do everything.  Which, at 15, I do not want him to feel, but I'm unsure how to prevent it.  Everybody's got stuff they're working on/out, and November 10th is fast approaching. 

So why the Disney, you might be wondering?  Well, a cousin is getting married in Florida, which normally, would just require us to send a card.  But between my brother's regrets that he and Nancy didn't just spring for the Disney vacation they might have taken a few years ago, and the 9-yr-old's puppy dog eyes, my brother decided that they had to go.  So: from Tues - Saturday, we'll be hitting up the parks, and attempting to draw out as much of the happy when can for some kids who could desperately use it.  (Although the 15 yr-old is not onboard our happy train - AT ALL - he's upset about missing school, and thinks he's too old for Disney (ha!) and all sorts of other cliches about sullen teenagers that get dragged off on their family's vacations.  I may as well be living in an 80's movie, honestly. )

This is going to be very difficult, spoon-wise, and health-wise for me, but they need me, so off we go.  Wish us luck.

In other sad news, SisterS's mom passed away - suddenly, of a heart attack - last week.  She's understandably shaken, as is my Oldest Nephew, and my heart breaks that I can't be more there for THEM right now.  Not that there's anything you can say when your mom dies (as I have learned quite extensively over the past year), but not even being able to just sit at her table and let her cry or rant or whatever she wants to do is making me feel extremely guilty.  I am doing what I can by text message, and I have to hope that it will be enough.  That I can help, in any small way.

Two of my other sisters have relocated over the summer - SisterCh to her mother-in-law's basement, which is not optimal, as you may have guessed, and SisterK to a far superior apartment out in Berkley, California, while her beau does some graduate work & she works for a literacy non-profit. 

And our best news of all is that SisterJ and her husband are expecting a new little bundle of joy to add to our hoard!  (Let's be honest: we all know if I was a dragon my horde would consist exclusively of books and babies.  Like: for real.)  The baby will hopefully making his arrival in February, which means a baby shower is in the works for the next little while as well. 

So, I'm apparently full up and bursting with news guys - a real mix of who knows what. 

But the light bulb - while still slightly dimmer than one of those energy efficient ones - has clicked back on.  So hopefully, we'll all be around when it hits full strength. 


 Thanks for hanging in, you guys. 

BADD 2015: Where I talk about Fanfiction and Comics, a lot, and you probably roll your eyes.

Welcome to all the Blogging Against Disablism Day readers & writers! I can't believe this is our 10th year! Thanks again to Mrs. Fishy and Mr. Fishy for all their hard work today.  You can go here to see all the great posts (or follow @BADDtweets on Tumblr).  
 
So, I thought a lot about what I wanted to write for today, and wasn’t coming up with anything, so I decided to troll my Tumblr blog for ideas, because there's a ton of good disability related stuff there - If you’re not on Tumblr, you’re missing out on a pretty vibrant spoonie/chronically ill/disabled blogger community, IMO, and my tags there are ultra organized, which is nice.  

And, then, this week, I saw this post  where MasterSkyRocker asks if there are any superheroes who “are representative of those with chronic pain?” and I thought about official canon (as far as I know it), and then I thought of fandom.

And I’ve decided to talk a little bit about my only non-family, non-health-related obsession this year - Fandom (in particular, the Marvel fandom, and -in extreme particulars-, the Avengers fandom & the Captain America fandom) and its diverse representations of disability.  

Because fandom is where portrayals of disabilities are at, people.

Last year, I wandered headfirst into fanfiction, and since then, I’ve been reading So Much Avengers FanFiction you honestly wouldn’t believe it. As in, I have 276 bookmarks, but those are only my favorite favorites, and I've easily read 4 times that amount of actual stories.  As in, I cut my yearly book quota of over 300 in half last year because most of what I was reading was on the screen in front of me, and almost all of it revolved around superheroes and their alternate realities.  

And - because I care about issues of representation and disability, and because I live with a number of disabilities, and because I can’t shut the critical thinking portion of my brain off when I’m reading anymore than I can when I’m watching television or out shopping (just ask my niece, who ranted with me about the lack of Black Widow merchandise in the Disney Store the other day), I’ve thought a TON about how disabilities are portrayed, or ignored, or tweaked to fit certain tropes within the contexts of the fics that I’m reading.  

And I’ve participated in more than one Tumblr discussion on the subject, and more than one comment thread on a particularly good fic.  Fandom has opened up a whole new internet arena to me - where we exchange opinions about which supersoldier’s PTSD would present violently and who’d feel more overwhelmingly depressed; about how Hawkeye’s being able to lipread/knowledge of ASL would benefit him in the field vs. the ‘handicap’ of being deaf and dependent on his hearing aids during a battle; about what exactly the Arc Reactor means for Tony Stark’s chronic pain level and his sobriety (or lack thereof);  and now there’s a ton of new meta and headcanon about Daredevil, because of his new Netflix series, that I haven’t watched yet and therefore can’t participate in yet, but I'm coming for it as soon as I can, because Yes, please.  

I have a lot of opinions, is what I'm saying. 

And… so much of it is awesome, and a lot of it is not,  - just like any fiction.  There’s good and bad stories, good and bad writing, good and bad characters and good and bad portrayals of disabled people.  

And yet - the part that strikes me as most important?  The part that keeps me coming back after a particularly bad trope shows up out of nowhere and makes me want to raze an author and their fic? Is that at least they’re being SHOWN.  At the very least, at it’s very worst, in the most trope-y, magical cure, Deus ex Machina crap piece of fanfiction? At least disabled people are THERE.  It isn't enough; It isn't where we stop; but it's something.

Because even when they’re supposed to be there -> Hawkeye’s being Deaf, being the most obvious Marvel Cinematic Universe example - Disabled people are just plain overlooked in the actual canon. 

Sure, Tony Stark definitely has PTSD and panic attacks in Iron Man 3 (As well he should, and I cannot applaud the filmmakers enough for including them!), but Steve Rogers seems to wander along without anybody mentioning that he might be depressed, in addition to being a superhuman, since he, you know, lost all of his friends, his loved ones, his entire time period, and then was unfrozen to unknowingly work for the agency he nearly died trying to destroy. Even if you believe that Captain America: The Winter Soldier is showing his obvious signs of depression (which, eh: yes and no: I’m of both minds on that), they never come out and say it.  Certainly nobody addresses it in any meaningful way.  

At least in the movie.  

In fics, I’ve seen Steve go to therapy - group and individual. I've seen him struggle to share that he's not perfect, and struggle to keep up his perfectionist image.  I’ve seen him rant and rave about all that he’s lost, and have his own panic attacks.  I’ve seen him ignore everything till he can’t get out of bed in the morning. I’ve seen him sleep around, and be unable to watch anything but nature documentaries because the noises on other shows startle him. I’ve seen him be a right bastard until someone sticks out a helping hand, and I’ve seen him recognize on his own that he’s not in the right headspace and work to figure out how to get there.

In short, I’ve seen him as a real person.  With real issues.  That are addressed - within the context of that particular universe - realistically.  (Because, let’s be honest, not everyone has the resources of imaginary -fanon Captain America.)  

Even Bruce Banner - who admits, in the Avengers - to having suicidal tendencies, is basically just assumed to be able to shrug it off and get on with being the Hulk already, in canon.  In fandom, I’ve seen him cry and avoid making connections to other people; and make connections to other people but screw it up; and make meaningful connections to other people and figure out that he’s screwed up.  He’s not stuck being the guy who can’t die even if he wants to, which is all the movie had time for him to be - in fanfics, he winds up being so much more.

Same goes for Hawkeye and being Deaf.  Sometimes it’s a huge deal - where he’s being tortured and his captors use it to their advantage; and other times it’s played for a joke - because if a man survives solely on pizza and coffee, can you really expect him to remember to replace his hearing aid batteries all the time?; and other times it’s barely mentioned except for how all the rest of the Avengers learned ASL really quickly because they’re mostly geniuses or supersoldiers and non-assholes, and most of them want to be able to communicate with their new friend/teammate as much as possible.  

And the list of disabled characters in my particular fandom is still not as large as it should be, and also surely not representative of fandom as a whole, but it’s still amazing.  I’ve read recovering from brain trauma Fitz (actual canon, the brain trauma; less so, the how he managed recovery part); Daniel Sousa on Agent Carter is a WWII vet and amputee, who canonically makes jokes about his disability, and in fandom I’ve seen him hold his own both against and with the Howling Commandoes; I’ve read more PTSD in fanfiction than I did in three years of psychology courses, and - since a lot of it comes from survivors themselves - I’m tempted to say, it’s probably more accurate.  

And it’s not JUST that they’re there and varied and (mostly awesome, because that’s why I’m reading about them in the first place), it’s that they’re REAL PEOPLE in fics.  They have sex.  They have bad days and great days and setbacks and breakthroughs.  They use adaptive technology to their benefit (and, all the better if they can rope Stark into making it for them). They feel sorry for themselves without abled people sitting around telling them to buck up. (Sorry: gratutious Bucky Barnes pun!) Or if the abled people in their lives do tell them to suck it up and get on with their lives, THEY GET TOLD TO STUFF IT.  They have families and worries and they're superheroes (or not, AU-of your choice), but they're people. Authentic representation for the win!

The fact that disabled people show up in fanfiction is amazing to me for a few reasons.  First, because I read so much anyways, and while I knew that large portions of people - not just disabled people, but also LGBTAQ people & people of color, for example - were not being represented in the mainstream stuff I was reading, at least not to any significant degree, I didn't know that I had other options.  But here? In fandom?  Can’t go a page of fics without finding an asexual Steve, or a Falcon who’s got his own storyline, or a Fury who never discusses losing his eye, but makes sure you know he’s seeing right through you just the same.  And now I want that in all of my fiction - I'm reading with a breadth and width that I never thought I'd be able to find, since it wasn't in my local bookstore.

And I'm not talking "specialty fiction" or anything like that: I want romances with disabled characters, I want adventures with them. I want sad stories and happy stories and erotic stories and parenting stories - I want to not have to go searching in a different corner of the store, is what I'm saying.  I want it all in one, all together, and now I know where to find it. 

And I think I’m particularly drawn to these stories since a lot of it also comes from writers with disabilities (or from other marginalized groups), who long to see themselves in the heroes they love, and figure out a way to make it happen.  I mean, is there anything better than being able to write someone out of a panic attack because you’ve had to fight your way through them yourself? Or to be able to -finally - explain to someone who doesn’t live with the overwhelming, all-encompassing aspects of chronic pain just how bad it truly can get via the hole where Tony Stark’s heart used to be? Or what touch aversion actually feels like, emotionally and physically? Or the idea that it's fine for me (and sometimes my friends) to make a joke about my disability, but if you're using it as the butt of your joke, well: Son, just don't. 

Are there downsides to fanfiction’s portrayal of people with disabilities?  Sure.  Definitely.  In the Marvel fandom alone, I can think of at least 6 different active arguments you can go discuss on A03 or Tumblr.  There’s a ton of talk about removing Bucky’s arm (and agency); about how calling people ‘trash’ (which, for some reason is sometimes seen as a positive in this fandom?) when they’re disabled is also pretty freaking ableist (or not, YMMV); about how having Deaf Hawkeye in the comics but not in the movies is sort of a sideways move towards representation, if anything.  That's not even starting on pre-serum Steve, and how he can be portrayed using every single bad disability trope you've ever read, or how de-seruming Captain America can so quickly wander into "oh no: please tell me you are not going there" territory. 

And there so many more examples, because authentic representation doesn't come easy, no matter who's writing it, or what audience they're writing it for.  Because sometimes abled people don't know the pitfalls to avoid when they're writing disabled characters, whether it's in mainstream fiction or fanfiction. And those misrepresentations can be harmful, absolutely.  

But there’s going to be disagreements and downsides to ANY portrayal of disabled people, and, as always, I think the answer lies in listening to the people themselves.  Like how blind people are asking that Netflix provide description services so that they can actually watch the show with the superhero who is most like them, and Netflix is listening to them.  Or when Deaf people applauded Matt Fraction’s Hawkeye comic for having pages and panels only in ASL. Or when a fic writer gets commentary from people with a specific disability that calls them out on somewhere they've screwed up and they don't get all huffy in return: These types of interactions can - and regularly do - happen in the fanfiction community. I know many authors who give constant credit to their beta readers - some of them have the disabilities that are being portrayed, and do their best to make it seem as accurate as possible.  And when they miss the mark, there are so many discussions about how, and how to fix it, and... I almost never see that in 'mainstream' fiction. It's heartening and hopeful. 

There’s nothing better, to my mind, than a fic that gets recommended by someone who knows. Who has lived it.  No higher rec than someone saying (as they often do) “Seriously: This author gets it right → that’s what dysphoria feels like to me!” and suddenly you’re understanding someone else’s life & experiences in a way you couldn’t have before.  

That’s the best of what reading good writing can do, and I find myself constantly wanting to say to people, “I know it’s Avenger’s Fan Fiction, and that’s not your style/fandom/regular cup of tea, but listen: change the names and read for the people.  Read and get it in a way you didn’t before.”  

Because maybe the Avengers aren’t your favorites (You’re wrong, but that’s ok, you can stay anyways), but if understanding people is, and you’re just being a snob because: ew, fanfiction? Then you’re missing out on some amazing writing, and some amazing portrayals of disabled people.  And, until they start showing up everywhere else like they should, I’m going to keep finding them where I can.  

(PS: If anybody’s interested, I can put together a list of recommendations, because: some of these should definitely be shared.)   

Literally a 5 tissue post. You've been warned. (YMMV)

There's a lot of things I'm in charge of here that I could not care less about: Making sure NLYNephew (now 14.11 yrs old, thank you very much) takes out the trash is one of these responsibilities.  I hate Thursdays, because it is a constant refrain, from the time he comes home after school until he finally takes the trash out (tonight he did it about 10 minutes ago, a little bit after 9 pm). Not from me - I really only remind him the once, or - if I feel like he's closing up shop for the night and it has slipped his mind - maybe right before he goes to bed (which always earns me a huge groan, no question). He knows it's trash night; his dad knows it's trash night; EVERYBODY knows it's trash night.  Why it has to be a big battle every week is a mystery to me, but somehow it always is.


--

I don't know why I started this post that way.  I really just wanted to say that sometimes things here are still really freaking hard.  Hard in ways I didn't expect - I really miss the jokey, sweet relationship that my nephew and I had before I became the one he has to check with to see if he can run to Dunkin Donuts with his friends after school.  Before I became the one who puts corn on his plate and expects him to eat it. 

Before I became the woman-shaped-person who's taking up space next to the giant gaping hole his mother left behind.

--

Do you ever write other people's stories in your head and try to figure out how they'd sound? Especially ones that include you? I've been doing that a lot lately, trying to look forward and backwards at the same time for the kids so suddenly in my charge.  Trying to use our experiences as predictors for theirs, when I know that won't work, but I don't have any other grand ideas.  Trying to see into the future and prevent their damaged hearts from being crushed, as if by magic.

 I wonder, sometimes, what role they've casted me in, or will cast me in, in their eventual memories.

  Is that a normal thing to wonder? I don't even know.

 But I can't help it: sometimes snippets of things pop into my head and I wonder: Is that the truth of how they see me now? Is that the story playing in their head?

 Recently, I had this moment of - I don't know - disconnect and not deja vu but an equally awkward "how is this my real life?" kind of feeling that left me off balance. And when my niece and her cousin walked in at half past eight, tumbling in all loudness and loopy from their grandparents' house down the road, I had this piece of narration that just popped into my head, as if I were seeing the scene from the outside.


"We were a few minutes late, and I could tell by the look on Auntie's face that she had noticed. She always noticed things like that, especially when you hoped she wouldn't. She was a constant looming presence now, with Mum gone, and seeing her there - usually spread across the couch with her laptop at a right angle, or twisted up as best she could to squeeze into our one, lone armchair: three pillows, a heating pad and the laptop's glow on her face - gave me the jolt every time I walked through the door. It wasn't her fault, really, but she wouldn't have been camped out at our house otherwise, and we all knew it. If Mum were around, she'd be back at Grammy's and our twice monthly sleepovers would still be something to look forward to, a nice change of pace where we played games all day and ate tacos. But here she was, and here Mum wasn't, and just like a switch, I remembered it all over again."



I realize the scene itself isn't particularly charitable to me - although I don't feel it's unjustly harsh either - it's just that sometimes I can see it on their faces, the re-realization, and I h a t e being the impetus for that, the thing that highlights their loss all over again.
 --


 I'm having a rough couple of days here - It's not just me: there's a lot going on in our family that's good and bad and horrible and up-heaving and life-altering.  And I feel a little lost, sitting here on this couch, with my charges in bed - one of them upset with me because I'm making him do chores, the other listening to her TV because she finds the quiet unnerving, even all these months later. My brother, snoring away upstairs as he's been since right after supper, and he'll probably be awake at three in the morning, and off to work, and another day will start all over again.

 And I wish that the end of the day felt like I'd accomplished something more than surviving.  I wish that I was able to make them happier, or healing, or at least not argue with them about stupid shit that neither of us really cares about except Oh My God Why Do You Have To Act Like A Teenager Right Now??? Could You Not Be Jerk To Me For 10 Minutes, Please???

And the thing is, my nephew is a sweetheart, and I KNOW that. And most of the time, he continues to be that - he's a good kid, with a good heart, and he's doing so great and trying so hard.  And neither of us really understands my role here or our new boundaries and ... it's fucking hard.  It's hard for me, and I'm a grown-up woman, who lost her sister-in-law and misses her, but who won't ever understand what it's like to be 14 and have your mom taken away from you so brutally. 

I know he doesn't blame me, but he kind of also does.

Because I moved in when she got sicker, and she just never got better, and I just never left, and I'm the one who told him it was never going to get better, and I'm the one who made him understand that that was her last day and he'd regret it if he didn't say goodbye, and I'm the one who's STILL HERE and his mom is NOT.  And sure, he's 14 and he's smart enough to know (in his brain) that that doesn't make sense, that I wasn't a cause for that effect, but I also know it doesn't feel wrong, because sometimes he looks at me like he hates me, and it breaks every little piece of my heart.

And I can't show it, because I know that grief doesn't make sense, and I know that he doesn't like feeling it any more than I like seeing it, but, god, what I'd give to go back to a time when looking at me didn't hurt him.

 I know he loves me, and I hope - with all my heart - that this is one of those things that time can fix - because I've loved this boy with my whole heart since the day he was born, and yes: I'm the one who told him his mom was gone, but I'm also the one who snuggled with him through every nap-time and sick day; the one who taught him about the joy of pretzels dipped in fluff; the one who showed him the miracle of bubbles; Who gave him sink baths and solar systems and learned the name of every maritime disaster in the last 100 years; the one he used to call when his parents were fighting and he was frightened. 

I know, eventually, he'll remember those things too, but right now, on a night when he looks at me and sees all that he's missing, what I wouldn't give to trade places with his mum, to let him have her back, to let her fight with him over the damned trash.


---
Well, now that I've bawled my way through that... I gotta go turn on the dishwasher, and lock us all up safe for the night.  Hope whoever is reading, wherever you are, that you're safe and sound tonight too. 

 

 

 

 

 

 

 

3 months later.

I miss you guys.

That seems like the place to start.

This is definitely the longest hiatus I have taken from writing here at my blog since I started it (coming up on 10 years ago), and it was unplanned, but pretty unavoidable.

Since my sister-in-law passed 3 months ago, I've been completely absorbed in trying to make things bearable for my brother and his kids, which basically consists of me living on their couch, making sure they don't starve (or, more likely, perish from scurvy, as their interpretation of fruits and vegetables runs more to the 'by the foot' and/or  'fry/chip' variety), pretending my 2nd major in social work 10+ years ago is an acceptable form of grief counseling, and making sure they don't live in filth. (My brother was ever the slob, and devastating grief did not make him MORE likely to pick up after himself.)

I'm not doing it on my own (there are a lot of us on the support staff) but a lot of times - when my niece is shivering her way through an anxiety attack at midnight, or my nephew is having a mini-breakdown that we're both pretending is all about school, or my brother is upstairs wailing his grief away and I can't go up and comfort him or even leave and give him privacy - it can feel like I am.

Normally, periods of emotional upheaval leave me itching to write, and this last little while was both no exception, and so much of an exception you wouldn't believe. There were times I felt as if if I didn't write, I might explode, and there were times were I felt like any words I could possibly write were too small, too insignificant, too useless. Mostly, though, I've just been too exhausted to parse any words at all.

The amount of spoons that this all takes - physically and mentally - is overwhelming. It's a 24-hours a day position, with no breaks or breathers, most times. My niece needs constant reassurance that everyone she loves is not going to just disappear, sometimes to the point of needing to be near me for hours at a stretch, constantly touching and talking and... that is not a thing I am physically capable of doing, most days, but I do it anyways.  My brother needs someone to run herd on his kids during the days he can't get out of bed, even if they're huge balls of tantruming energy, which is not in my wheelhouse, but I do it anyways. My nephew wants me to help him figure out calculus I forgot three seconds after I learned it 20 years ago, through brain fog so thick I put the controller in the refrigerator the other day. Not a great plan, but I do it anyways.

"I do it anyways" seems to be the motto right now, because shit needs doing and I'm the only one around to do it.

But this mentality (and let's face it, that's always my mentality, no matter how many times I try to change it), as you might guess, does not play well with chronic illness. I've been running on the fumes of fumes for at least two of the four months I've been here, and I keep crashing, but still have to push during the crash, because otherwise - as I previously mentioned - shit doesn't get done. And none of that stuff is optional: it's homework and 'my head hurts' and 'why isn't there any food in the house?' and three solid weeks of blizzard conditions and snow days galore. Decisions, big and small; appointments to make and cancel and try to show up at; rules to reinforce and reinforce and reinforce  - because bickering doesn't stop for migraines, and neither do dishes or meals or any of the other things that normally I would stop because it's just me and who cares, but right now it's not just me, and it doesn't stop, and that's hard.

It's all very hard, is mostly what I'm saying, and for every day I can crawl my way through without winding up in the hospital, I am super grateful.

And everybody else is on me to take care of myself better: which is a thing I want to do, a thing I know I need to do, but a thing I can't quite figure out how to do. Because asking for help is only OK if other people can provide it, and somehow everybody else is already doing the best they can here too. And I've definitely used up as much of my own reserves (ha! as if I had reserves. I had... like.... I don't know: gall? Is that a thing? I think that's the thing I mean.) as I could. I've been sicker here than I have been in years - part of it is exactly as I remember from watching these same kids as infants and toddlers, that every germ in creation is somehow called to them and then transferred to me, but another part of it is just being freaking exhausted in a way I've somehow managed to forget during (relatively) good cycles of illness.

I mean, I'm never NOT tired or sore - 20 years this past fall since that was even an option! - but I HAVE been taking care of myself and managing my illnesses for quite a while, and I've worked out all sorts of cheats to make things easier on myself, and so, I haven't had to be CONSTANTLY DOING anything for years (because I know how it wears me out, and is bad for me, and I don't do that anymore), so now, I guess I'm just remembering why. Oh yes: THIS IS THE REASON FOR ALL YOUR ADAPTATIONS, YOU FOOL. This constant exhausted feeling right here, where your brain is Swiss cheese and your white blood cells have declared themselves pacifists and your red blood cells have noped the fuck out of here, and you basically have all the energy of the lump of pillows you're trying to nest in, but you still need to get up and feed the faces of people who are still too young to manage it on their own. (Not that I don't make them do some of their own meals, but an 8-yr-old should not be in charge of feeding herself 3 meals a day, just take my word for it.)

If I've ever doubted that being a spoonie means being a warrior (and I only ever have in my own case, when it seems like the things I do are so little/adaptable in comparison to others), then those doubts are gone now. I could not be fighting any harder just to survive, and to pull these children and my brother along with me, than I am right now.

And, so, the lack of writing.

But I do feel like I'm going to explode without it, so I'm back. Even if I can't promise regularity. Even if the only thing I can promise is that when I show up, I'll have things to say.

I appreciate any of you still out there listening.

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.

Things took a turn for the worse this morning

and now we're holding vigil. and this is just TORTURE.

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.) 

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.

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.

NaNoWriMo

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

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.

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.

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.
 

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.

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.

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.

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. 

"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.)

*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.

---                               ----                                                                           ---

**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!