Sunday, May 01, 2016

#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.  

Friday, April 29, 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.)

Monday, October 05, 2015

“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. 

Friday, May 01, 2015

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.)   

Thursday, April 16, 2015

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. 

Wednesday, February 11, 2015

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.

Saturday, November 22, 2014

2:41 AM, 10th November, 2014

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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