In which I return from a LONG hiatus to complain about the election here, so that I don't set my FB feed on fire

Let's talk about the election.  Actually, let's not: I really, really don't want to, but I also literally can't think about anything else for any sustained period of time? I do not know what to do about it, so writing seems like my best bet.  Here's what I wrote to the Fishy today, re: the election.

 Thanks so much; it is ridiculously anxiety-making around here right now, for sure. I'm trying to keep it together, but it is so nice to know that other countries see how completely absurd this whole thing is, and are hoping for the best. I've done my part already, so now I just have to wait and hope that things aren't really as bad as they seem. Deep breaths!  I hope you are doing really well... in all honesty, it's probably my turn for the long email, but since I'm relying on my phone for everything since my computer finally gave up the ghost a few months ago, emails are more difficult than I'd like. (I am not nearly as efficient at thumb typing as I am at regular typing.).  (That is in no way relevant to this post, but I did want you to know why I'm not posting all that much: Phone typing is NOT good for blog production.)

Anyways, huge hugs, and a big thank you for thinking of me. This election is definitely the most anxiety producing one I've ever been through, and that takes into account that most of the time Obama was running the first time I was sure he was going to be assassinated before he could ever be inaugurated, so that tells you how bad it truly is. When a guy who believes in eugenics is one vote away from being the leader of your country- whether or not you are one of the ones whose genes are obviously inferior- I think terrified is the correct response. Now I just have to deep breathe my way through a day that most people agree is going to go the right way, and hope that nobody on our side got complacent and stayed home. Love you! Talk soon!

And I'm having discussions with NephTwo (this is the last presidential election he won't be eligible to vote in, which is blowing my mind) about Bush V Kerry - and how the fact that he got reelected has led me to this point of election anxiety, because I can't trust my fellow citizens to do what's right for the majority of us, the minorities of us, or even individual us-es.  I was 100% certain that Bush would not be reelected, but I had apparently living in some sort of Liberal Utopian Echo-chamber, where I just wasn't hearing the people who thought he was doing a good job? and deserved another term? Because all of the sudden, there we were, in Bush, Term Two.  I still have questions about that, to be honest: I have no idea how that freaking happened.  I went and looked it up, because I could not remember how close it was. 50/48 - that's it... two percentage points (and I don't even think two whole percentage points), and the balance of the world tips. 

Our world has been balanced on chads, on presidential pamphlets, on the media's portrayal of a certain candidates foibles or strengths (who you "want to have a beer with" vs who gets Swiftboated, who can "see Russia from their house" vs who's "never gonna be president now", for example), on demagogues and Supreme Court Justices alike. So, yeah, you'll have to excuse me being a little bit nervous about the fact that a person who does not believe that people like me should exist; who does not believe that - or act like - women are equal to men; who can criticize and castigate an entire race, an entire religion, and entire countries and still think that that has no impact on the greater world around him; who does not believe in equal rights for all people, should be so close to the ultimate position of power in our country. 

Even more bitter is that all the things that I believe should have disqualified him from running, let alone serving, are things that SOMEONE in my country is voting for him because of.  There is someone out there right now who thinks that he's got the right approach to Muslims, and that person isn't going away tomorrow, like Trump hopefully will. There is someone out there voting for him, and they're not bothered by the allegations of rape and sexual assault that Trump is facing. Who doesn't mind the way he's talked to Gold Star families, or the way he disrespects veterans. There is someone out there who thinks "Nuke the shit out of them" is valid foreign policy.  Who thinks "illegals" are group of subhumans, and that they don't deserve to live in the same space as the rest of us.  Who believes that 'Obamacare' is the devil, and doesn't care that it has saved my life - or the lives of hundreds of thousands of others.

And those people are all voting (as they should, although I could wish that they just haven't got the time for it today, right? That's not wishing them ill, so much as wishing them busy, which seems acceptable), and all of those people WILL STILL EXIST come tomorrow morning.  All of those people will still be our country-mates come the day after the election, and that's worrisome to me, because some of those people don't think I should exist, that I do not deserve equal rights, or the support of my government in the form of health care or civil rights.  (For multiple reasons, thank you intersectionality!)

There is some real looking hard at yourselves and your choices that Americans are going to need to do, post-election.

I get that my internet experience is tailored to exist as much in the Social Justice Warrior Bubble as possible, both by choice and by chance, but the facts of this election, and this electorate, are startling to me. (To be fair, I think most of us were actually shocked by Trump's accession, if you can take the fact that both liberal and republican media sources were playing the whole thing off as kind of a joke in the beginning as any kind of clue.) And it's not as if, existing in those spaces online, or as myself in public, I am unaware that all the -isms are alive and well in my country. (The ones I personally experience, and the ones I have witnessed happening to others, which I do understand are not the same thing at all.  I'm just saying, I was also not unaware they existed, just because I did not personally experience them.)
But that someone could rise to power, so quickly and with so little opposition, well, that was a shock to me. That's were my own experiences were definitely not enough, because for however much I've been treated badly by people with ableist attitudes or behaviors, I did not understand the extent to which there were still huge swaths of the country who not only pity people with disabilities, but don't think their lives should be lived. I literally could not believe that a eugenicist was being taken seriously in our election (Granted, he did not come out and SAY he was a Eugenicist, but I think if you look at the definition, and you look at what he believes, you can see how many others and I were able to draw that conclusion.) 

That is an extreme I was not prepared for, in this (or any) election.

I have been listening to other people's lived experiences - the fact that there are violent racists in America is not a surprise to me, for example - but I know that I was not prepared for how ardently and publicly people proclaim things that are overtly racist (or sexist, or homophobic, or Islamophobic, or ableist,), and still don't think that they themselves are racist (et al) .  That they can support a bigot without believing themselves to be bigoted is ... a cognitive dissonance I did not expect, and can not comprehend.  I also have not found more than one or two Trump supporters who can actually give me a reasoned support statement for Trump that do not mention Clinton at all - I get being anti-candidate, because I'm pretty sure I'd vote Garden Hose over Trump, but if you cannot find something in your candidate to support, that's also a problem (Garden Hose: putting out emergency fires since forever. Also, helps your plants grow which is two whole positive things more than I can name about Trump, for example.)

Nor was I prepared for the ways in which this election, and who people support (and how they support them) would impact my personal feelings about people in my life.  It's like Melissa McEwan's Terrible Bargain come to life, this whole thing.

There are people in my life that I depend on, because I have to, whom I no longer can look at as trustworthy, because they didn't see the "big deal" about Trump saying he could sexually assault women and get away with it because he's rich.  There are men that I have befriended and trusted that I now have to seriously reconsider spending time with, because they assured me that it was, in fact, "locker room talk", and not aggressive misogyny.  I know of more than one married couple who are having some really devastatingly difficult conversations now, because they are seeing each other differently in light of their reactions to what has gone on during this cycle.  I've been unfriended myself, because I couldn't refrain from calling out bigotry where I saw it.

 And even though I'm most likely better off, it stung, because I thought I knew that person enough to say "Hey: Not cool. Repeating racist things makes you seem racist, I hope you know." (I am including the word 'seem' here even though I think the correct definition would be to exclude it: repeating racist things makes you racist, if you're supporting them. But I was A LOT more circumspect in my actual FB comment, so know that even this would have been seen as a killer blow to our 'friendship.' )

And I've tried to keep my personal Facebook feed as apolitical as possible (which is not to say apolitical, bc that's impossible for me), and had more than one truly frightening conversation with loved ones about race, class, the economy, misogyny (internalized and externalized), and power than I could ever have imagined having.  Sure, some have been positive, but for the most part, I find relationships are scarred by our interactions over this election - where I am mostly seen as a 'lefty loonie' in our family NORMALLY, now I have been placed in full on 'raving banshee' position, even though I have censored myself  8 times out of 10.

It's not something I'm likely to shrug off either - I will remember every "Oh, aren't you naive" and "that's not why I'm voting for him, but it's also not enough of a reason not to vote for him," I've encountered, you can be sure of that. 

In closing, please sweet baby jesus that I don't actually believe in, could this day end the way it needs to? With hope and community and optimism for our future? With the first woman president of our country, on the cusp of bringing a lot of people together to get shit done? Because I would like that a whole lot. 

On another note, though, my NaNoWriMo writing is going great guys, because I am writing about so many explosions! And history making changes! And life altering political policies! And complete dystopias, because I can't see how else this can end! (I predict M A N Y novels that come out of this NaNoWriMo are going to be Hunger Games-esque, because how could they not be?)

The West Wing is never wrong.

There's this episode of The West Wing (see below), where President Bartlet says to Josh Lyman "I want to be the guy. You want to be the guy the guy counts on," and I think it is the piece of fictional dialogue I have most related to in my entire life.

Because that's me: I want to be the guy (or girl, in this instance) that people count on.

And I think I am, to a pretty large extent.

But the thing about being that guy/girl, is that it's fucking hard. And lonely. Frustrating. Anxiety-producing. And, for me, at least, it's really really difficult to stay on the side of the line that equates with uber-dependability, without crossing into total, unselfishly-selfish martyrdom. (Because, honestly, is there anything that winds up being more selfish than a person who can't think about themselves in any situation and starts feeling taken advantage of by everyone in their life? Probably not.)

So, it's a difficult line to toe, and I definitely feel like I have fallen, head first, over it in my current situation, which has created this atmosphere where I find nearly everything my brother does upsetting, and I can't figure out if I'm overreacting or not. I feel like all of the sudden I'm realizing that everyone else has been right for the past year and a half; that he is definitely taking advantage of me, and that I'm enabling all sorts of inappropriate behavior on his part. That I've somehow wound up in this relationship with him where I can't be honest because I feel like he takes offense so easily, and the kids are the ones who wind up getting hurt.

For examples - he cancelled my nephew's birthday party the night before because his other aunt (my deceased sister-in-law's sister) overstepped and tried to change the times like it was her right. I get that she overstepped, but he completely overreacted, threw a tantrum and we all just had to go along with it, because they're his kids, and he is in charge of them. He overreacts about 95% of things - in a way that I find aggressive and overwhelming, because it reminds me so much of our dads, and their bad behavior, and I usually back down, because it's the kids who are in the middle. I wind up having to act as interpreter for him to everybody - "he meant to say" or "he's really hurt about" or "he's just tired tonight". So many fucking excuses that I heard as a kid and told myself I would never tell, and here I am slinging them like I'm reciting back my ABC's.

I know he's hurting, and I know he's grieving, but I also know that he's kind of an asshole, and, under any other circumstances, I would tell him so. I call him out when it's stuff with the kids - or at least try to, I'm ashamed to say how often I find myself retreating into the intimated girl I used to be when faced with slamming doors and stomping feet - but let everything else go with a "I am just to tired to fight this fight today" mentality. I just don't know why everything has to be a fight, why everything has to be so tense all the time. 

His sense of responsibility and mine are completely different: I have been putting those kids first - before  my own health, even - since they were born. Not full-time, until now, but definitely in a way that has been unhealthy for me, even. He thinks he has been doing the same thing, but, it's different.  He thinks working and feeding them and not exploding every time he's pissed off about something is something that should earn him kudos and cookies.  I think you're doing the bare minimum that is required of you as a father, and you just need to get on with it and act like a grown up.

There was a lot of talk, after she first passed, about letting him sink or swim on his own.  Just... going home and letting them all put the pieces back together as best they could. I knew then that that just could not happen, because he was as checked out as he could possibly be, while still being physically present. And those two kids needed more than a father-sized shape walking around, especially with the big gaping mother-sized hole they both will always have. An auntie who is trying her best-sized block isn't good enough: it's never going to be. But if it's what we've got to work with, then I can't take that away from them. I can't imagine leaving, of my own free will.  I can easily imagine him making me leave by being so much of an asshole that I can't deal with him anymore without losing my mind. (Because I lived with one of those already, and - as hard as I try not to draw comparisons, they are there to be drawn.)

He's not always an asshole. He can be sweet.  He plays catch with them sometimes, or surprises them by going out for breakfast. He lets me buy whatever the hell I think we need grocery shopping online, even if I have to order every other day. He doesn't care about paying for things, except when he does, and make a big deal out of those things.  He worries about me, when I'm extra/normal people on top of chronic sick, even if he doesn't actually do more so I can do less.  He has said the words "You don't need to contribute more than your presence to stay here - I don't expect more from you than what you do." But I also don't feel like he gets what I do, the extent of it or the import of it, at all. 

I guess I just feel really underappreciated right now, since he just took a night off the other night - just went out and didn't come home, and told me at like 3:30 that that's what he was doing, and didn't even tell the kids, and left me to deal with the fallout, and then got pissed the next morning when I told him there was fallout about it from the kids.  And then the kids were all fine when he was here, and he didn't have to deal with any of their anxiety at him not being home or their anger that they didn't know, or their terrible, horrible, no-good, very bad days, and I did.  I took care of them, and I keep taking care of them, and I love it, because I love them, but.... it is so hard. And he just doesn't see.  He doesn't worry about Lil Girl's back, or NephTwo's broken heart, or MCAS or the stupid fish that hides in its filing cabinet, or why nobody can fill up the whole goddamn dishwasher instead of 9/10ths of it, or if that one's wearing the same dirty shirt she wore three days in a row, or if this one is coming home late and is all giggly, and now I have to google what the signs of pot use in teenagers are, even though I didn't smell it, but I have a stuffy nose, so let's just double check.

 He loves these kids as hard as he's ever loved anybody else, I KNOW it, I can SEE it. But he SUCKS at making them feel it. At showing it in any meaningful, past this one specific moment, kind of way. He worries about them too, but I know it's not the same way I do. I worry about them first, and I don't think he does, because he couldn't act the way he does if he was thinking of them. My grandmother always said fathers were like that, that mother's hearts were different, and fathers never really understood, but I hope that's a piece of generational sexism that doesn't prove true.  I mean, no: they are different.  But I don't think that means father's can't put their kids first.  I think he may even believe that's what he's doing. I just don't know how to get him to see that his behavior is as harmful as it is. To all of us.

And I really, really, don't want those kids to come up to me, 20 years from now and say: Why couldn't you just tell him he was being such a jerk, why did the house have to feel like that? Because it's what I sometimes want to say to my mum, still.  And I know these issues predate SisterNc's death, because their relationship was rocky and had a lot of the problems I'm banging my head against right now, but it's different, bc he's my brother, and they're not technically my kids, and I'm supposed to be helping.

That's the real problem - I'm supposed to be helping, and I just don't know how to do it right now, so I feel like shit. 

Probably I'll just start rewatching The West Wing.  That seems like a good idea.

#Ableismexists, so we BADD again.

One of the more insidious things about ableism is that - unlike a lot of other prejudices - there's still an absurd amount of debate over whether it even exists or not.  For example: my spellcheck? Still underlining it.  A more widespread example would be a recent Twitter hashtag, #ableismexists, which wound up with a not-insignificant number of retweeters who were arguing that it actually did not - while this was in no way a surprise (but rather an unfortunately common response, in my experience), there was one new-to-me experience: At least one of the most prominent deniers was a woman with a disability herself.

The woman in question made a YouTube video where she - while using ableist terms like 'retarded' and 'idiots' - not only insulted the originator of the hashtag's lived experience, but talked about how loving and feeling pride & claiming as part of his identity his disabled body was 'sick'. Obviously, I do not agree with her, but I also felt like her post (which got retweeted a LOT by non-disabled folks, trying to disprove that ableism was a thing in a  "See: a disabled person doesn't think it's real, so how are we supposed to take it seriously"way) raised a pretty interesting point - specifically, the idea that if you don't experience something, how can you then feel qualified enough to say that it doesn't exist?

This woman's story is her story - for her, ableism and internalized ableism were not just foreign concepts, but things she found actively oppressing: More than once she said (or intimated) that the closest thing to actual ableism was what 'social justice assholes' were creating by believing in ableism, that accepting disabilities and disabled bodies was an injustice - an ableist trope I myself have had to overcome (more than once, and in more than one way) - that 'accepting' our disabilities was as good as 'giving up', allowing us to 'feel sorry for the poor little cripple', accept a role as victim for the rest of our life.

If that's her experience of ableism, I can see why she'd fight so adamantly against acknowledging it.  My experiences accepting the fact that there are systemic, social, financial, legal, informal, educational, medical, (and a million other forms of) injustices against disabled people has helped me to step out of feeling like a victim, and into feeling like a member of a larger community - not just of people with disabilities who are fighting these injustices, but of any community I have ever been a part of.

I never felt more like someone who belonged on my college campus until a group of girls in my dorm helped me realize that some of the policies the school had in place were creating a completely unfair burden on me - a wheelchair user who, because she could sometimes walk a few steps, was forced to use the stairs during a fire drill and wound up incapacitated for months.  When it happened, I didn't feel as if I had any recourse, or as if it was the school's job to change its policy: It was only the insistence of the women in my dorm, who saw the result of the policy, who made me recognize that the policy itself could be unfair, that the school could be operating under its own prejudices of 'if you can a walk a few steps, you can take the stairs', and that that was an inequality that needed to be addressed.  I didn't feel more like a victim because someone explained to me that the rules were unjust; I felt LESS like one, because now I had something I could fight to change.  My ability to use the stairs was not going to change (no matter how much I may have wanted it to), so the policy needed to.

Figuring out that doctors aren't always without prejudice (particularly when it comes to treating chronic pain patients), has empowered me to step away from more than one doctor who was actively doing me harm. Witnessing that some so-called 'advocacy groups' work against the group they're supposedly advocating for has made me a more conscientious advocate myself, has taught me to listen to the people who are being spoken for, to give them the space to speak for themselves, wherever possible. Recognizing ableism in larger society, and in my life, has allowed me to (among many other things) set more realistic goals for myself, commiserate with and fight for other oppressed groups, speak up on my own/other disabled people's behalves, step out of the mentality that - although my disability isn't something I would have chosen - it isn't something I can live well with.

For me, accepting my disability has been a long and complicated process - I still sometimes struggle with the realization that a lot of things are not going to happen for me, because of my health, and that that's ok.  I still sometimes struggle not to push myself too hard, because it always ends up with dire health consequences when I do. I still sometimes have an issue with feeling like I'm not doing enough to be considered helpful, that I have to miss out on too many 'normal' days with my friends and family for me to be worth them sticking around for. That I still have value even if I am contributing nothing financially. All of those issues (and so many more) are things that I accept are internalized ableism - thought processes that have decided my value as a human being is lessened by my chronic illnesses and disabilities. Accepting that the way I feel sometimes has more to do with a screwed up value system (capitalist societal norms of value being connected to financial contribution, for example) is 100% more empowering to me than thinking that I am worthless because of something I cannot control.

I'm not discounting that woman's life or experiences - if she feels like ableism is a detriment to her personally, and to disabled people on a larger scale, that's her right, and it's her right to say so when the issue is addressed (which is why I'm not linking to her video: I'm not trying to start hate anywhere). But I think to ignore and dismiss and discount the people the tag - and those of you who participate in BADD every year, and millions of more disabled people - is equally unfair. 

Just because it is not your experience, doesn't mean it's not valid. 

To read about some more perspectives on (Dis)Ableism, head on over to the Goldfish's abode: BADD 2016.  

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.