Friday, September 08, 2017

Here is something from my drafts folder, a piece I started working on the summer I was living with, and losing, my grandmother.  I've been thinking about her a lot lately, about how much she made me feel capable and loved, and how difficult it is for me to make LilGirl feel that way. How it doesn't come as naturally to me, as it must have to her, and how I wish she were around to talk me through it.  So, I've been wandering back and looking at some of the things I've written about her, and about our relationship.  Here is something I think that's worth posting... I don't know why I never finished it, then.  Probably it hurt too much. But, it's a tribute to her, so I want it out there, on this the fifth anniversary of her death.  

-  

She talks in her sleep; probably all sorts of things that she wants to say when she's awake, but doesn't dare.  "Shut up ~ I'll only listen to that for so long;"  "Who do you think is the boss around here, Mister?"  "Well, I'm smarter than that, which you'd knew if you listened to me at all."

But it's not just that: sometimes she opens her eyes and talks to people who aren't really there, except for her.  "What are you doing here?" she'll say, "Where have you been for so long?"

The other morning: "Is that Brian's chin? Do I recognize Brian's chin? I know it's you, because you have my chin, boy: why won't you talk to me?" Her voice is sweet, and cajoling; later it's hurt and quiet. 

Brian is my father, and he's been dead for 13 years.  He was not, contrary to her beliefs, 'necking in the living room the other night with some girl.'  At least not that I could see, and I had a pretty good view of things, since I was sitting on the couch she claimed he was sitting on.

"I'm glad that he has someone;" she reports back, "but did he have to ignore me?  What kind of evil have I done that my own child would pretend I didn't exist?"

When I suggest that he didn't hear her, she gives me a look that says she knows I am not that stupid, and I should know that she isn't that stupid either.  She's right: neither of us is that dumb, but what else can I say?  He's gone: If she saw him in the living room, it certainly wasn't the Brian that either of us used to know, and trying to explain about hallucinations to a person who is hallucinating all the time, is like trying to explain about breathing: you don't do it consciously, therefore you can't think about all the bits and pieces that go into it.  You don't think to yourself "Diaphragm in" before each breath, and she doesn't think to herself "this could possibly be fake" before she has a chat with the person she sees so clearly.

Don't try to convince her that she's hallucinating, all the experts/books/hospice workers agree: so now I've got a woman who's sure she's seen her dead son, and that he ignored her, that he hates her enough to not even say hello, when she is clearly ill and needs his company.

 Even my father, whose memory is pretty tarnished (if only in my own eyes) was never that bad.

She pines for a little boy (sometimes two little boys) who is/are missing, but she can't recall their names or their faces, only that they are her littlest boys and that someone has taken them from her.  My uncle is sometimes cast as the willing accomplice, other times the clueless and cold father, still other times the evil mastermind behind this whole plot: he doesn't know where the boy(s) are, and he doesn't seem concerned enough with finding them, in her opinion.

We don't know how to search for pretend boys, or how to explain that no one has absconded with any of her children, and so she longs for them, brings them up in every quiet moment, wonders if they are fed and clean and happy and "where could they be?"

"Safe and happy; sound and cared for", we promise, but we haven't got enough details for her. There could never be enough details to satisfy a mother who is looking for her missing children.  What is the address, the phone number, the house like?  Where does the father work, the mother shop, the school bus let off?  Do they ever get an extra cookie at night, does the mother wash their hair with that special lice shampoo, are we sure they don't do their homework while sitting in front of the television?

Obviously my worrying genes did not come from the ether.

But what a wonderful mother she must have been, back then, when her kids where little.  To still worry so now, all these years later, about whether or not someone is making sure the little one brushes his teeth because 'he hates to brush his teeth and will just wet the brush and pretend he's brushed, you know'.  To have in her head that there are little hearts out there that it's her job to protect, and to be un-moving in that conviction - it's both awesome and horrible all at the same time.

Because I can so clearly see her in that mom mode - living through the daily struggles of raising nine children, one with a very severe disability in a time where kids with disabilities were hidden from sight more often than not; in the projects of a city she never liked, close to in-laws who treated her like a slave, and far away from the life she lived with her Grams in New Jersey. 

And yet, she excelled - she knocked it out of the park, if you ask me, even if she made mistakes along the way.

But how horrible, to feel that connection, to feel that pull, and to be able to do nothing about it.  This is a feeling I have my own experiences with, that wanting of a child, that feeling that your child is out there somewhere, waiting for you, but you can't get to them.  Our realities are infinitely different - she's reliving the life she's already gone through maybe fifty or sixty years ago, now and I'm looking forward to the life I want in my future - but that pull, that pang and hollow feeling, yeah: I know it too well.
-

This summer with my grandmother is awful.  It's an endless wait for an end you'd do anything to avoid; like you're constantly slipping towards a great big hole, and you know you're going to go into it face first, eventually, but the fall is taking an eternity and you can't figure out where to put your hands out to stop yourself, so you just keep slipping, closer and closer to the big fall.

She has days where she's fine, mostly, and those days of just sleeping for hours and eating and watching Judge Judy, well they're almost normal, except you can still feel the slide happening, deep down, under your feet, under your skin, in your heart.  It's there in the way that she asks what time it is, again, and you can tell her internal clock has run hours ahead of the actual time, and she's lost again.  The way she tilts to the side while we're watching the news, like a curious puppy who can't quite make out what he's looking at.  The way it takes her 15 minutes to get food onto her fork, into her mouth, chewed and into her stomach: It takes her so much energy to eat, that you want her to eat only the highest calorie foods, to make it worthwhile.  All those little steps, little bumps, all part of the slipping.

And then there's days where she's never here: she eats, but she doesn't taste it.  She talks, but her eyes are empty when she looks at you.  "Where's the mail?" and "What's the time?" over and over again, and they have as little meaning to her as they would to a two year old - all she knows is that those things might happen, and it might mean that something would be different than it is now.  And god, does she want things to be different than they are now.

I can't interest her in anything: the plots of television shows confuse her, peppered with commercials that annoy her.  Movies take too long, and have too many people talking at once.  Books are too heavy for her sore arm, too tiny for her eyes, too confusing if you read them to her.  Puzzles are not her thing, nor are cards - "I used to get berated for playing a card in bridge; your uncle" (my great uncle, actually) "would scold me so for not knowing what everyone else had played." And music is, for the most part, out: I turned on a Pandora station with her favorite song, and she took out her hearing aids and went to sleep.

We talk about a long time ago, but I never know how much of it is true anymore - was there really a woman named Bridgey, who lived above them in the Towers and would shout at Grandmother's misbehaving children as easily as she'd take her own to task?  Did my grandfather lace up his Hessian boots, or was it her father, her grandfather, one of her brothers?

We talk about yesterday, today and tomorrow - who's coming and what's on the schedule, and "does your list make you the boss of everybody?" About the weddings coming up, and how they're not today, or tomorrow, or even next week: "I've missed the bride" she'll tell me at least once a week - but no, Grandmother, it's alright: The wedding isn't until the end of September.

 "I need silver shoes," she shouted as she woke up this morning, before even hello, "add it to your list and we'll go shopping for some on the next nice day."

Never mind that we don't go shopping - that the doctor's appointment she went to last week wiped her out so badly her skin was grey - or that her feet are two different sizes due to the swelling.

 "Silver shoes to match my dress.  And a petticoat, with lace."




Thursday, January 19, 2017

Why is school so stressful??

I spent a large portion of time today, convincing a sixteen year old that his life would not end if he failed his AP physics midterm. That, even if it tanked his GPA, his life would still, somehow, be worth living. We talked about a lot of things - his (most likely situational) depression and how he doesn't think it's capital D Depression (and No, Thank You: He Would Not Like To Talk To Anyone About It, Auntie!); the fact that group projects have always, and will always, suuuuck; the fact that he puts all these roadblocks and excuses up in his own way, and makes it seem like things are impossible to accomplish, when they are not; the idea that he will be taking a much less stressful course load as a senior next year, and why can't it be senior year already; his belief that having driving lessons curtailed as a consequence to poor behavior is 'totally unfair', while I think it is 'maximum effort', and hopefully, never necessary. So Many Things.  Hours worth of things. 

And I never felt like I knew what the hell I was talking about. 

I swear to you, I wanted to Google a million things while we were sitting there - building self confidence in teenagers, how to tell if a teenage boy is Capital D Depressed; what do colleges take into account beside your GPA, and on and on.  I didn't, because texting while you're talking is considered (by me, at least) rude, so I didn't, but all of my answers felt, at the very least, humblingly inadequate.

"It's not fair that I should have to do all the work in a group project! I should just tell my teacher, or take the zero." "Um: No.  If I find out you took a zero on a project just because the other people weren't pulling their weight, we're going to have an issue.  Sometimes, you're going to have to deal with people who let you down, who don't do their share.  You're right: It is 100% unfair, and you SHOULD mention it to the teacher - (bc one kid is dropping the class, he is doing literally no work for the project, and should not have been assigned to a group, IMO)- but, since it's due on Tuesday, at this point, you're either going to have to ride the other people in the group till they produce their part, or do their part for the sake of your grade. It's not fair, but it is Do-able." 

"Well, the test will be scaled, so all I need to do is get about a 45, and that will still be a C, scaled up." (I have no idea how the math works on that, just that's what he said.) "You can - for sure - do better than a 45, and you need to set your sights a lot higher than that. Are you studying the right things; Is there anyway I can help you study, so you can do better? Because aiming for a low pass is something you're better than." 

"I never should have taken this class, I'm in so over my head, and it's impossible to pass, and I'll probably get a 2 on my AP test, and then it will all have been a big waste of my time."  "OK: I can see how it would feel that way, but you have to try to reframe it a bit, I think.  It's not impossible to pass, because you are passing it. Even if you get a 2 on the AP test, you will still have passed AP Physics. Yes, I know your grades aren't where you want them to be, and here are 2 specific things I think you can do to bring it up some this next quarter, but stop thinking of it as impossible, because that just gives you an excuse if you don't do it.  You ARE doing it. You don't need the excuses." 

 And on and on.  I felt like a mix between one of my therapists, and a Hallmark "You can DO it: I have faith in you!" card. (Because that was literally something I said.  It felt so sappy, but it's also 1000000% true, so I figured it needed to be said.)

Mostly what I wanted to say was this:

You are an amazing kid, and I don't like how overwhelmed and stressed out you are right now.  I am going to help you find some better coping strategies, because this is not working out for you.  I also think that maybe you should take some deep breaths, and listen to me when I say: This class - pass or fail, A or D - is not going to be the be-all-end-all of your life.  I know it feels that way right now, because I went through it myself.  But 15 years later? None of those things actually mattered.  What matters is how I responded to tough parts; how you hang in there when things are hard - in school or in life - THAT IS WHAT MATTERS.  So let me help you figure out how to hang in there.  How to breathe, even in the midst of the really tough times.  How to see a challenge that feels overwhelming, and still know - even if nobody else shows up - that you can tackle it.  Because You Absolutely Can.  And I will help you, for as long as you need my help, but I'm also going to show you how to do it yourself.  Because those are the skills you need. 

And off he goes, to take a test he's petrified of, and all I can do is say "Stub a toe" (our family's version of 'Break a leg') and cross my fingers, and know, even if he doesn't, that he can handle whatever comes at him.


Monday, November 14, 2016

I think we can all agree it's been a long week.

It's nearly four o'clock in the morning, on Wednesday, November ninth, 2016.  I'm laying, jaw clenched, tissue in hand, on my brother's couch, where I have been living for about two years, when he comes down the stairs, showered and ready for work. The television is on, playing news footage none of us really thought we'd ever see, and I have spent at least half of the last five hours in and out of tears, in and out of breath, in and out of reality, in and out of potential panic attacks.  My brother sees that I am... distraught is probably the most likely word to use here, and says "I did not think he'd actually get it.

 Are you ok?"

I am not ok. 
I feel like I will never be ok again, because ...
"The man on the TV right now doesn't think that people like me should exist, and the guy standing beside him thinks it's OK to shock gay kids until the 'turn straight';" I look away from the TV, and at my brother. "I think it's safe to say I am not OK."

It has been nearly a week now, a week full of shock and fear and ripples of hatred and bilious outbursts across the country.  It's been a week for graceful concession speeches made by a woman we have all let down, and peaceful marches that 'the other side' calls traitorous and Un-American (there's a word I never thought we'd have to bring back), that even more -neutral parties dismiss as 'liberals having a temper tantrum' and 'your side lost; you've got to put on your big people panties and get over it.'

We elected a misogynistic, racist, Islamophobic, possibly anti-Semitic, homophobic, classist, abelist eugenicist, to be our President. I am not sure this is a thing you get over.

Let me start with this: I come from a place of privilege. I am white; I was raised with enough money to complete both my high school and college education (although not without assuming significant debt along the way); I am not religious now, but when I was, it was the religion that most everybody around here practiced; I was assigned female at birth, and it fit me. I never had to question my gender identity or work with a body that didn't feel like it belonged to me. I know I don't have to live in the constant state of fear that many people do, because of their race or ethnicity, their gender identity, their religious practices,or  their sexual identity. 

My family doesn't know about my sexuality, if only because it has never been an issue: I'm too sick to date, so being slightly grey, being open to more things than they would necessarily assume I'm open to, well: It doesn't come up. I can certainly pass for straight in any situation, because it's not far from the truth.

 My family does not know about my history with sexual abuse or harassment, except that my mother knew that my large breasts made me a target for boys pretty young, warned me more than once about how to stay out of the trouble they might 'cause.'  That those warnings didn't always work, even with people I should have been able to trust? That's something they don't know. 

My family does know I'm disabled, even though I don't tell the whole truth there either.  There are certain truths about living in this body that even those closest to me would not understand, or should not have to burdened with (yes, I am aware that internalized ableism is a thing.  I am also aware that knowing it is a thing is not enough to eradicate it from your own thoughts and behaviors).  They know a lot about the abelism I have faced, but not all. I don't think you could ever tell it all.  I have also had the privilege of 'passing' sometimes there too: I have definitely been identified as a 'good cripple' as opposed to a 'troublemaking' one. (Yes, those are quotes.  They're also completely inaccurate, because I do not know anyone who creates more trouble than me, but people will believe what people want to believe.)

So I recognize that I am writing this next bit from a place of privilege, that there are many people, to whom Trump's election was NOT a startling turning point, to whom the idea that half our country was OK electing people into power who didn't want whole segments of our population to exist, was not a shock, and I want to say how sorry I am to those people. 
I heard; I listened when you spoke; I saw and felt your fear and anger and disappointment; but I didn't know firsthand. 

Even the evils I've already encountered - people who just yell "crippled bitch" at you as you're making your way through a public space, Facebook rants about how people on medicare are "con artists and moochers who deserve to die off", twitter wars and tv spots about the evils of the LGBTQA community (even the fact that the "community" itself allows itself to be shortened down to just the "LGBT" community) - none of that prepared me for the feeling of seeing, in stark numbers, that about half our country could support a man, a party, a legislative agenda, that seeks to delete large swaths of our citizens from the fabric of our country.  Who could talk about sexual assault like it was a joke, and then have people agree with him, that it was something we are able to joke about. Who could lie about and mock people's religion, their history, their families, their sexuality, their appearance, their disabilities, their humanness, and have no one to stand up and say "This is too much.  This is too far." 

I was not prepared for that, and I'm so sorry that you were.


 I'm sorry that being an ally - mostly online, because 1) I am too sick to be in public that often and 2) I don't know where people find the spoons for activism, when they can't find them for things like 'eating food today' - meant that I tried, but I didn't see the whole picture.  I also recognize that I STILL am missing large parts of the picture, because they are not my experiences, and they never will be. 

But I promise you,

I am listening, still.
 

I am trying, still.
 

I will do better, as much as I can, in any ways that I can. 

Because that feeling has not left me, since last week.  The one that feels like the world is ending, but not too many people actually care.  The one that sees all the calls for cooperation with a man who just appointed a white supremacist to his council, and wants to vomit, wants to scream that this is not the world we were promised, it is not the world we've been fighting for.   It's a feeling I would have rather spent my whole life never feeling, and that makes me so angry, because I have had the option not to experience it, where so many others have not. 

There are children who have lived their whole lives feeling like this - feeling like nobody cares if they live or die, and would probably prefer it if they died, so long as they did it quietly and with as little fuss as possible. 

There are women out there who have lived with men like this, who have experienced the things he jokes about so lightly, who were looking towards all of us to protect them THIS time, and who have been failed AGAIN.

There are LGBTQA teen,  and adults, and senior citizens in our country who are panicked and petrified that they will lose what little progress they have made towards equality.

There are Jewish people and Muslim people and atheists and non-Christians who are wondering just how much of their belief system will be trampled this time, just how much of it will be used as a weapon against them.

There are hard working people fearing deportment, or afraid that their families will become divided unfairly and unnecessarily.

There are poor people who already know that this government will place them blame, and the burden, unfairly on them. Again.

 There are people who are sick and disabled, mentally ill or physically ill - people like me - ,who know that they will not survive if the social safety net they depend on is dismantled, piece by piece.  Who are already worrying about running out of meds, running out of money, running out of time, running out of life. (For so many reasons.)

There are people of color who have been fighting for survival, for equality, for removing barriers, for their LIVES,  who depended upon the rest of us to protect them with our votes, and have to deal with yet another disappointment at our hands.

I cannot yet express how deeply ashamed I am of the decision our country has made - how I had to explain to my ten-year-old niece that not only hadn't we voted in our first woman president, but we had voted in a hate monger, a race-baiter, an honestly divisive and genuinely bad human being, while at the same time giving her hope (a hope I have to tell you I do not yet fully feel). I let her cry, and I told her that the man at the top is not everything, and that we wouldn't let them get away with anything, and that we were still going to fight and work for what is right.  I was mostly bluffing, because I did not feel like I had anything more than lip service to give, on that morning. 

But it's been a week, and I've read A LOT, and I know that I am not alone, in my fear, in my disgust, in my longing to make this as safe, as right, as possible.  And that matters more than I can explain too, that there are people out there Doing Things.  SafetyPins (with actions behind them); Pantsuit Nation; #WandsUp; #WhatsNext; All time high membership rates in the ACLU and donations to Planned Parenthood in Pence's name.... It's not just me, feeling this way, and some of the other people are going to know the right things to do. 

I'm going to keep listening.  I'm going to keep doing.  I'm going to keep fighting, once I catch my breath. 

I'll see you all out there.  Thanks for staying, for listening.  For letting me learn and know I have to do better. 



Tuesday, November 08, 2016

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?)



Wednesday, May 18, 2016

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.


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.)