tag:blogger.com,1999:blog-170435792024-03-07T02:55:04.623-05:00Never that EasyNever That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.comBlogger1022125tag:blogger.com,1999:blog-17043579.post-16517970366037733472022-01-25T17:21:00.000-05:002022-01-25T17:21:17.849-05:00“I wondered which was harder, in the end. The act of telling, or who you told it to. Or maybe if, when you finally got it out, the story was really all that mattered.” ― Sarah Dessen, Just Listen<p> I can see by the dates that it's going on three and a half years since I've written here, and gee.. I can't think of any good reasons why. </p><p><br /></p><p>Lies. Monstrous Lies.</p><p><br /></p><p>I mean, I originally stopped writing because nobody reads blogs anymore, right? Once our feedreaders were winked out of existence, I suddenly lost all these other people I was connected to, and I didn't know how to deal with that again, so I just... didn't. </p><p><br /></p><p>I figured I'd keep writing if I felt like it; Stop if I didn't. Didn't really matter if anyone was reading or not. And for the most part, that's true. I think that's still true anyways. I can... feel around the edges of where I am now, back to the "normalcy" of summer 2019, and see that I was just going to do as I felt, knowing full well that it would likely not be read by many people, and I'd be okay with that. </p><p><br /></p><p>Because I am a writer, and writers write, regardless of if people are reading that writing or not. </p><p><br /></p><p>But then the world decided to implode quite a bit, and well: things changed. </p><p><br /></p><p>I got Covid. I nearly died. I have Long Covid still. </p><p>I watched as the world talked <i>a lot</i> about how it didn't really matter if people were dying because they were old, or sick, or somehow just already unimportant. As the numbers climbed and my country, my world, just... attempted to pretend its way out of a global pandemic. That's killed nearly six million people already, and is still in full swing (as most of the world pretends it's either over or almost over). </p><p><br /></p><p>And it turns out? under those conditions? I do not need anonymity. </p><p><br /></p><p>See I started this here website as a place to say the things I needed to say, anonymously (super anonymously at first) about my life, my world, the people in it, my feelings, etc. Without having to be too careful of people's feelings, or without having to censor myself and not writing about the things I needed to write about. Because I knew I would worry people, or hurt people's feelings, or just be too harsh on bad days, or whatever. </p><p>And that's worked for me, here for a very long time: This blog was established in 2005, and that's seventeen years ago, friends. SEVEN TEEN YEARS.</p><p><br /></p><p>And we've talked about a lot of things. Things I've never said to anyone else, or even allowed past my brain, ever. Private, personal, global, hilarious, hideous, sad, depressing, wonderful things. </p><p><br /></p><p>But I don't need to hide anymore, because I got Covid, I nearly died, and half of my country - and a fair share of people in my real life - just didn't give a shit. Didn't act like they cared - complaining about masks and freedoms and vaccines and conspiracy theories. </p><p>And in summer of 2020, I wrote my fucking will (I don't have a lot of things, but there were a few I wanted sorted); I wrote letters to my family; and then I started posting my real, actual, uncensored thoughts on Facebook, because <b>what the actual fuck??</b></p><p><br />And I've written about science deniers, and the CDC and how much it sucks and how much we still have to rely on them for certain things. I've written about our government's piss poor response to Covid under two different presidents. I've written about coughing up blood and being denied care because there just weren't beds for people who weren't actively dying (even when it seemed like I might be actively dying). I've written about the eugenics of it all, the activism of it all, the EVERYTHING of it all. </p><p>Right there, right out where everybody can see me, with my real name attached and everything. </p><p>And mostly? In a turn of events that will shock exactly no one, most of those posts go nowhere, most of them don't get read, or shared, or it winds up just being me and my cousin (who is also chronically ill and has an immunocompromised kid) screaming into the void together, but I don't give a shit. </p><p>that's not true I ... DO give a shit, but only in the "well, people's true colors are shining pretty brightly, and I wish it weren't the case" kind of way. Because my first couple of posts got a little bit of traction, but two years into yelling that people are scientifically ignorant on purpose and it's killing vulnerable people and disabling millions of others unnecessarily, and somehow people just... skip right past those. </p><p><br /></p><p>I talk & repost about it on Instagram. On Twitter. Tumblr, still. Fuck - I doubt there's a platform I'm on that I haven't posted <i>something</i> about it. And I don't care if people are tired of me talking about it. <br /><br /></p><p><i><b>I am tired of talking about it too. </b></i></p><p><i><b> But I'm also tired of watching people die. </b></i></p><p><i><b>Of being afraid all the damn time. </b></i></p><p><i><b>Of pretending that ableism (and capitalism and racism and all the fucking isms) aren't poisoning us all so badly that most people don't even CARE that people are dying by the thousands every day. </b></i></p><p><br /></p><p>So I'm gonna keep writing about it, probably for the rest of my life, however long that manages to be. Because this is worth writing about. </p><p>And it's worth writing about, with my name attached. </p><p>I'll probably still be back every now and then, so drop me a note if you want to say hey. I miss y'all, and I hope whoever is out there in blogland still, is safe and protected and cared for right now. </p><p>I'm not gonna make any promises about when I'll be back, but I'm glad I still have this little corner here, for thinking things through while I rant and rave about everything else going on in the world in all the rest of the corners you can find me in. And if you're looking for my real name, drop me a note, or your Facebook link, and I'll follow it to you, so you can follow it back to me. </p><p><br /></p><p>Because I'm writing about things that matter - just like I always have done - and I'm finally signing my name. And it feels good. </p><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0tag:blogger.com,1999:blog-17043579.post-13267125089035405602019-07-23T14:33:00.000-05:002019-07-23T14:33:04.602-05:00A funny funeral story, on this, the anniversary of my father's deathso I'm going to tell you a funny/horrific story about it, while I'm stuck here in memory lane:<br />
<br />
My
father hooked up with this creature (you'll see why I call her that, I
hope), about three years before he died. She was only the second of his
girlfriends that I had ever met - he made a big deal about taking my
brother and I out to dinner with them, once. They both drank all during
dinner, and I didn't drive, so I spent a good 30 minutes trying to get
Big/Only Brother to take their keys away and drive us home, but instead
wound up getting yelled at for being a baby, and driven home by an angry
drunk, his semi-sloppy girlfriend, and my silent brother: such fun!<br />
<br />
Their
relationship was more like an episode of <i>Cops</i> than
anything else: They both drank excessively, they both lost work because
of it, they both had severe anger management issues, (and children under
10 -) It was obviously a match made in heaven! They were on-again off-again to the
extreme, having lived together at least twice over the course of their
relationship. To the best of my knowledge (mostly secondhand through my
sister, who was 6-10 years old at the time, but also through Daddy
himself, then and later on), there were physical fights, a lot of
screaming matches and thrown telephones, holes punched in walls, and
eventually, my daddy, during one of their mutual tantrums threatened her
dad that if he didn't put her back on the phone he would kill him, and
so there ultimately were restraining orders and jail time involved.
Which didn't stop them from getting together again when he got out of
jail, or breaking up again after losing a baby the spring before he
passed away. (To this day, I don't really know if "losing the baby" was
code for "she didn't want the baby, so she got rid of it" as my father
professed, or not. I actually didn't want to know anything about any of
it, but my father was not the type to cry into his beer: he was the
type to drink his beer, and everybody else's beer, and then try to cry on the closest available
shoulder.) <br />
<br />
So, when he died, they'd been broken up,
after yet another mega fight, in which he screamed that she was a
"murdering whore," and she collapsed in tears, drove away and called
Child Protective Services on him. <br />
<br />
Obviously, star-crossed lovers. <br />
<br />
So a
month or two later, when he died, nobody thought to contact her, but his
death was in the papers, of course, and they knew some of the same people, and her
kid went to SisterK's school, so she found out. And when we
showed up at the funeral home for the viewing that night, early, like
family does, my grandmother was over inspecting the flower arrangements
(because, please, God, don't let her have to see her son in that box any
more), and she noticed that the Ex-Girlfriend had sent a flower
arrangement. Which she promptly told the undertaker to dispose of. <br />
<br />
They
were removed from the room with very little fanfare - I figure most
people didn't even know it had happened - and we continued with our
torturous vigil (I Hate Wakes! They Are Hideous! Please Don't Have A
Viewing For Me ~ Just have the Post-Party Food Section, and then
everybody can go home). <br />
<br />
About three hours in, I am sitting in the chair
nearest the casket - nobody else could sit there, so it's where I sat -
and one of my uncles (Daddy was one of 9 children) and my brother coming zipping
across the room towards me, and my uncle asks me if I'm ok to walk.
(The funeral home was not accessible, but I was more walkable back
then.) I just sat there trying to understand what the hell was
happening, and he repeated himself: "Can you walk?" <br />
<br />
It was said so
urgently that I thought something horrible had happened and we were
leaving - somebody passed out (common both in my family and at our
wakes); there was a fire; I didn't even know. But as I stood up, I
noticed that we were walking (as quickly as I could) with a crowd of
people, but we were all headed toward the smoking room, the back of the
building, instead of the exit. I went along, still having no idea what
the hell was happening, and then my uncle starts telling me that the Ex
had shown up, and that Grandmother had said that she refused to be in
the room with her (when she called CPS, she had made entirely false
claims against my grandmother, as well), so that's why the mass
evacuation. <br />
<br />
There must have been 75 of us who scrambled
from the two larger outer rooms and squished into that one tiny room for
a good five minutes, before one of my uncles asked my grandmother if
she wanted the Ex to leave. When she said that she did, an embassy of
uncles, brothers, and cousins stepped out into the main room, and told
her that she was not welcome here, and that she would have to go. I
remember so clearly that the undertaker didn't seem ruffled by this at
all - I assume family feuds are part of his routine - but later I had a
cousin from my step-dad's family tell me that it was the 'craziest, most
intimidating thing he had ever seen at a funeral', so it must have been
shocking to some of the other people too. <br />
<br />
She left when
she was asked to leave, and stood outside crying for a while. Which is
where the funny comes in. SisterJ (then 16) and a few of the younger
cousins had been outside the whole time, and so they didn't know
anything about the drama that had occurred inside. When SisterJ saw the
Ex, who she didn't know or recognize, crying, she went over and hugged
her, offering comfort. Two of our male cousins came outside as this was
happening, and, after the Ex had left, told SisterJ about how she'd
been comforting the enemy - the same person who'd upset Grandmother and
had been asked to leave. She was mortified, but it seemed to cheer
everybody else up when they heard it, even Grandmother, who just put it
down to SisterJ's sweet nature. <br />
<br />
And that's a little glimpse into the 'normal' of my family. We evacuated a wake, forced someone else to leave, somebody hugged that person as they were ordered out, and then we all had a good chuckle about it. If you don't know what to do with that information, I can't really blame you. It's been ten years since my dad's funeral, and neither do I <div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0tag:blogger.com,1999:blog-17043579.post-74390908768024888462018-05-14T13:33:00.000-05:002018-05-14T13:33:00.728-05:00Time with Uncle Jack A few years ago, I was briefly staying with my uncle, just to keep my eye on him a little bit after he had a non-invasive, non-emergency procedure that required anesthesia. (Mostly because a) he is a pain pill lightweight and once passed out after taking a SINGLE vicodin and b) because he'd be alone in the house otherwise and I am not OK with that.)<br />
<br />
Our relationship now (in the post-living together while caring for Grandmother years) is a pretty easy one, but he still has his boundaries and I have mine, and we both try really hard not to cross them. (And I also try really hard to steer other people away from his, because he has a tendency to be.... gruff when his boundaries are crossed, and I like it when other people like him and don't think he's a grump all the time - because he isn't.)<br />
<br />
Anyways what I was going to say was that he's nervous about a medical thing, and I know how that is. And he doesn't want to talk about it, except he kind of does want to talk about it, but only <i>sometimes</i> and only <i>on his own terms.</i> So my role right now has been mostly distractionary - we spent hours talking about family history this morning, looking through old pictures (we have a shared love of organization, geneology & family stories), and tonight were up past midnight talking about cars and racing. I now know approximately 300% more about cars and racing then I did when we started talking, but considering that my initial knowledge was basically "Cars can go fast", that is still not saying much.<br />
<br />
I am in no way interested in cars and/or racing - if you'll recall, I do not even drive-, but I am interested in my uncle, who loves both of those things and was both a racer and an instructor at some pretty prestigious tracks, back a decade or so ago. I knew that if I could listen long enough to get past the "Formula one tracks in Germany with deadly sounding names that only people with suicidal tendencies would so much as go near" info dumping, then, eventually, we'd get to the good parts.<br />
<br />
Here were the good parts:<br />
<br />
<ul>
<li>When asked who some of his favorite students were, or who he thought were the easiest students to teach, he said "Hands down: Women." Which was unexpected. He followed up with this anecdote - A married couple signed up for the weekend of lessons: the husband was a semi-experienced racer (but in a different type of racing), his wife seemed excited to be there, but really just along for the ride. During the husband's trips around the track, he was super aggressive with the car - constantly 'overshifting' and forcing the car to comply with what the man <i>thought</i> it should be capable of doing, instead of what Uncle Jack was telling him it should be doing. It was so 'twitchy and frenetic' that he had to pull him over into the pit and make him calm down before he would let him continue his lessons. The wife on the other hand listened to what Uncle Jack had to recommend, eased the car into and through the turns and whatnot, stayed calm and unflappable during her laps. "It was as if we were in a completely different car", he said. At the end of the weekend, the husband had been demoted two classes (from an advanced intermediate down to a novice) and the wife had been promoted from novice to intermediate. The husband's aggression did not remain on the track, and he vowed never to return. I guarantee you that if that couple is still together, that is a story the woman tells over and over again, loudly and proudly. "Remember when you were such an egotistical ass that our instructor demoted you? And I was my normal awesome self and got an unexpected promotion? We should totally do that again." I would tell that story often (and would probably be divorced, but that's beside the point.) </li>
<li>Uncle Jack had three near misses in his track career - one spin out (due to rain, a rough turn and a hill that he didn't hit just right), and two students who somehow managed to power through well enough not to wind up hurting anybody. One of which he successfully guided through the near crash "just keep focusing on the furthest point of the track and gogogogogogo" he told him, as they nearly slid off one side but managed to keep all but the back tire on the track, in the end; And the other where they did wind up going completely off track but were luckily uninjured. </li>
<li>also blah blah blah sports stuff</li>
</ul>
<br />
But between our chats and discussions and the things we're not discussing, one of my favorite things about being here is the companionable silence. We can spend hours just sitting - in the same room, or across the hall from each other - each doing their own thing (I'm =shocker = reading; he's watching hockey) for hours, but it's not ... uncomfortable. It's an easy, light shared silence and I don't feel compelled to rush in to fill it up. (As my social awkward self usually does.)<br />
<br />
It's a nice feeling, and today's Uncle Jack's birthday, so maybe I can run over there and spend some time with him. <div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0tag:blogger.com,1999:blog-17043579.post-31816802440420156562018-05-10T13:18:00.000-05:002018-05-10T13:18:02.793-05:00When I was a kid, my bedroom had eight windows. It ran the length of the house and was originally a sun porch, and I shared it with 2-3 sisters at any given time, so it wasn't always my favorite place, but I really got used to those windows, I guess. <br />
<br />
I was usually afforded an end of the room (as opposed to my baby sister, who always got stuck in the middle, and my older sister, who was only there part-time and had to share whereever we could fit her in), which meant one of the big windows. Only slightly smaller across than my twin bed was long, and within six inches of the ceiling type big. <br />
<br />
Once the spring rolled around, our windows were almost always open, particularly once the heat of the summer hit - we did not have air conditioners when I was a kid, and one of my sisters once tried to stick her hand into a fan, so our room didn't qualify for one of those, even at night. Living across the street from a parking lot, there were occassional nights filled with fools and their clinking beer bottles, hollering at each other (mostly happily), while I lay under my threadbare Strawberry Shortcake sheet, sweating and terrified (beer bottles clinking is a noise that a child of alcoholics identifies as decidely NOT GOOD pretty early on). But for the most part, everything about having the windows open was a delight to me. <br />
<br />
I was not an outdoorsy kid. <br />
(I am not an outdoorsy adult.) <br />
<br />
But in our house, especially during summer vacation, if it was nice out, you were outside. <br />
That's just how us 80s kids rolled, really: Go outside, get into trouble, don't slam the screendoor when you try to sneak back inside for a drink or a popsicle, make sure you haven't gone so far that you can't hear when Mom calls or Dad whistles, and if you do go farther than that, ask for permission first. <br />
<br />
We played in the schoolyard next door a lot (it's locked now, which always makes me sad: although I'd prefer not to relive the many many games of Sting I lost to my siblings and their friends in that particular square of cracked asphalt, it's sad that the kids in our neighborhood don't have a place to go now, like we did then) - seemingly endless games of Sting and Dodge and baseball-oh-my-god-NTE, How-did-you-manage-to-get-hit-by-the-ball-if-you-were-sitting-around-the-corner??? <br />
<br />
I wasn't good at any of those types of things, but my brother let me hang out with him and his friends. My cousins taught me the best hiding places and one summer I was finally old enough to ride my bike further than the first corner and back again. I did outdoorsy things, and I had a good time, but I needed book time, no matter that it was summer. I needed 'in my head' time, no matter that there was never any quiet. <br />
<br />
I'm thankful that my mother (and grandmothers, both) is/are avid readers and recognized my bookish nature. (My mother used to punish me by taking books away, the same way she'd take my brother's baseball cards, or my sister's cell phone many years later. My mom has good aim, that's for sure.) <br />
<br />
So even though the rule was "go outside, get out of the house, please don't kill each other or bother me unless someone is bleeding", when I would sneak back into the house after a few hours of being bruised by whichever ball the boys had in their vicinity (it didn't matter if I was playing WITH them or not, just being near sports equipment usually meant damage for me, somehow), and would wind up flat on my bed with a book in my hand and the breeze coming in the big window, my mom never really minded that much. <br />
<br />
Sure, I'd get the occassional reprimand or - especially the summer I had to get reading glasses and getting used to wearing them was giving me headaches - I would be reading and suddenly have the book plucked out of my hands by said mother, who'd inform me that outside and fresh air were waiting for me yet again. <br />
<br />
But for the most part, laying there on my bed, having the lace curtains (and we should really talk about the fruitless inefficiency of having see-through curtains, sometime, if I can remember to do that) tickling my legs or the back of my (usually sunburned) neck while I read about living in the middle of the Big Woods or how Christmas just wouldn't be Christmas without presents, are some of my very favorite childhood memories of summer. <br />
<br />
They're the reason I'm looking for windows while apartment searching, even though I'm allergic to the sun. They're the reason I keep the windows open even though it's way past chilly enough to close them for the day. They're the reason I've got freaking sheer curtains when I'd do better with black-out ones. And they're the reason that laying here on my queen-sized bed, reading for five hours while the breeze blows in beside me feels like such a treat just now. (So can I blame them for getting nothing else done? I think I'm going to. "Fell down a nostalgia well while reading Avengers fanfic; excused from real life today.") <br />
<br />
<br /><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0tag:blogger.com,1999:blog-17043579.post-45152508688559222732018-05-01T10:47:00.000-05:002018-05-01T10:47:01.872-05:00Food StuffOne of the things I hear/read/am haunted by most as a person with chronic illness is the <i>completely inaccurate</i> thinking that changing my diet will change the status of my illnesses. I mean... wait. Maybe it's not completely inaccurate, because obviously diet does affect your overall health, and changing my diet could potentially kill me, so not inaccurate at all, I guess. It's actually the thought by outsiders that changing my diet will <b>CURE </b>me where the inaccuracy lies. <br />
<br />
First off, there are so many moving parts to my diet that abled people do not have to consider, that it's almost a completely different experience, eating. What do they have to do... pick a food and eat it? That is not how eating works, in my experience as a disabled person. <br />
<br />
<br />
And it starts with the very basics: Who has the energy to purchase and bring food into the house in the first place? Not me. If it's in-person shopping, 99% of the time, it's me sending someone out with a list of things, and having to be happy with whatever they come back with. (Which is usually about 75% of what I've asked for, often not exactly as I've requested, but you settle for what you can get - example: I'm allergic to certain kinds of fruit, and yet if I ask a carer to read labels and make sure that there's no pineapple in what they're buying, that doesn't always happen, so sometimes I wind up with food I can't eat.) I do a lot of my food shopping on apps or the internet, but here too, you have to settle for what you can get - the shoppers in the store decide what quality and cut of meat you get, or when the expiration date is (I have received meat on the sell-by date, for example, which means I have a limited amount of time for the meat to actually be useable). They decide if your bananas are green, or yellow, or turning into brown. All of the little choices you make in the supermarket are made for you, and you deal with what you get. Shopping via app has literally kept me from starving, so the convenience of it can not be understated - someone brings the food to me, I don't have to carry anything heavy (I can't lift a package of bottled water on my very best day), and occasionally, they give me someone else's bag and I get to try something I never would have tried on my own (bc once the bag is in my kitchen, they can't take it back out), but there are still drawbacks. <br />
<br />
<br />
That's just the simplest, first step of eating - having food available to eat. And you can already see that there are layers of complications that a lot of abled people do not have to consider. <br />
<br />
Let's move on to dietary restrictions. My own personal experience with disability and chronic illness has come with a huge list of food-related dos and don'ts, and, in talking to other disabled and chronically ill people, I have found that this is almost a universal experience. I'm going to discuss maybe half of mine here, and I want you to just keep in mind as you're reading that I recently dislocated my jaw, so whatever fits into these basics? For a period of time also had to be nearly liquid. <br />
<br />
<ul>
<li>I have to monitor my blood sugar closely, which is complicated by frequent infections and sometimes in no way related to what I have previously eaten, but needs to influence what I eat next. </li>
<li>I need to drink upwards of a liter of water, every day, without fail, for my blood pressure. </li>
<li>I also need to eat a<u> high </u>sodium diet, which is the opposite of nearly every other person's dietary recommendations, and I have had to explain it to actual nutritionists more than once. </li>
<li> I am taking a medication that requires you to dilute it in water and drink it half an hour before eating, so I have to have the medication ready and plan out meals in advance enough so that I know 'I will be eating in a half hour'. </li>
<li> In the meantime, the medication makes me nauseous, so I feel like not eating basically every time I drink it. </li>
<li>I need to eat enough at each meal to take some heavy duty meds, because otherwise THEY will upset my stomach, sometimes causing vomiting, and having to start the whole cycle all over again. </li>
<li>I sometimes require rescue medication, which also requires food, even though (in the case of migraines or extreme pain), I am generally pretty nauseous when I need to take it, and that makes taking it nearly impossible. </li>
<li>In addition, I have food allergies, food intolerances, and gastrointestinal issues that sometimes lead to me feeling full without having eaten anything in over 48 hours. </li>
</ul>
I also deal with chronic pain, which makes cooking difficult, obviously, but also, in a less obvious way, makes eating difficult: I am so used to tuning out the physical feelings of my body (because if I felt all the pain I feel, all the time, I would not still be alive, and one way I have found to cope is to shut down the things that feel too much), that 'normal' physical bodily stuff? Doesn't even register. I don't remember the last time I was hungry, or what hungry even feels like. I have to set timers on my phone so that I will drink the water I'm supposed to drink, because thirsty often doesn't register either. I have had issues because I sometimes 'forget' to pee? Like I know it's a thing, and I feel it sometimes, but I can block it out, no problem. I have learned, <i>through years of hideously painful experience</i>, that listening to my body is <b>dangerous</b>. For my physical and mental health. <br />
<br />
So hungry? I don't know. But does that girl scout cookie smell good? Yes: So I'mma eat it. <br />
<br />
Those are basic guidelines in which I have to then<br />1) Find the spoons to make a meal<br />2) Find the spoons to eat the meal<br />
<br />
I haven't even mentioned the fact that a lot chronically ill/disabled people are caretakers or parents, and that means incorporating the needs and wants of OTHER PEOPLE into you meal planning as well. Or that all of the "When I eat healthy, I can FEEL the difference" rhetoric is <u>meaningless</u> to a person who doesn't feel better, ever. Nothing I eat makes me feel more tired, <i>because I am already at 'exceeds human levels of tiredness' tired</i>. Nothing I eat ever makes me feel more energized, less in constant pain, more of whatever you are feeling that you think you need to pass on the good news about. It is basic fuel, it somehow manages to squeak through all the restrictions I've listed, and sometimes it tastes good, and other times it fits in my mouth & I can swallow it without having to chew it more than once, and that's the level of happiness I manage to equate with what I'm eating. <br />
<br />
Given all those givens, if I sometimes resort to eating a sleeve of saltines, slathered in peanut butter, the LAST THING I need is for someone to come along and try to able-splain to me the horrors and evils of gluten. I don't need anybody to explain to me that pizza isn't actually a vegetable, on a day when ordering a pizza is the only thing I have the spoons to do. I don't need a random stranger, a doctor, a sister or you to attempt to convert me to a vegan/keto/supercalileavemethefuck alone diet plan, by suggesting that they know more about what I need physically than I do. <br />
<br />
Here's a hint: Ya don't. I have lived with these restrictions (<i>and a lot more that I haven't gone into</i>) for this long, and managed to keep myself alive. <br />
<br />
When you're fighting for survival on a daily basis, sometimes remembering to count your goddamn calories is above and beyond what you are capable of doing, and that's just going to have to be ok with everybody, because I'm sick of defending it. <br />
<br />
It's not your business, honestly. And if your diet works for you: Great. So happy for you. But you do NOT know what it's like to live in this disabled body, so I'm gonna need you to shut the hell up. <div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0tag:blogger.com,1999:blog-17043579.post-66178498127114951112018-04-21T13:32:00.000-05:002018-04-21T13:32:11.840-05:00"We are sisters. We will always be sisters. Our differences may never go away, but neither, for me, will our song." Elizabeth Fishel<div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
My sister got an apartment. For the past few years, she, her husband and her young son have been living in the basement of her mother-in-law's house. She calls it the cave. They were doing it because housing is so fucking expensive around here, and she was working nights while her husband worked days, and it kind of didn't matter that they lived in a dungeon for a while. They made do. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
But at the end of the month, they'll be moving into an apartment, close to where her husband works, and in a good school system for their soon-to-be-kindergarten-age son. She got laid off from her night job at the end of November, with a pretty nice severance package, and decided to start a home business selling bath salts and essentially-oiled-soaps, and she seems happy. Excited. I'm happy for her. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
But I haven't asked if the apartment is on the first floor yet, because I know it's basically just another opportunity to have my heart broken. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
Because this is the sister who gives me a lift whenever I need it and doesn't complain or make me feel like a huge burden for needing the lift in the first place, but she's also the sister who was getting married and told me she wasn't having a bridal party because she and "my real sister" were fighting and there wasn't any point in having the rest of us. </div>
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(By real sister, she meant the only sister who is 100% blood related to her, and with our mishmash of halves and steps and somes, our sisterhood is a wee bit complicated that way, I suppose. But I'd never considered it so until that moment, until the <i>second</i> she told me that she considered me to be some second tier sister, with the carelessness of someone who's just mentioning the truth as they know it, as simply as saying "fish swim in water": As if it was given, a thing that everyone already knew and acknowledged.)</div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
Sisterhood is a complicated, messed up, confusing mix of shit, sometimes. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
I have five sisters. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
One of them - the one who joined us last, by marrying our only brother - is dead. I watched her die, with both startling suddenness and screeching slowness. I let her down, and let her kids down, because I allowed her to live those last months in a denial that seemed impenetrable at the time, although I recognize now that that was mostly my own cowardice: I knew the end was coming long before anybody else here could recognize it, and I so wanted to be wrong that I allowed myself to be convinced it wasn't true. I knew what was true, though, and not confronting her with it, not presenting it to her in a way she could accept robbed her of her goodbyes, I think. Robbed her kids of all the letters she should have written them to open on graduations and birthdays and weddings. When I think of the hole she has left in our family, in the threads of us, I couldn't be sadder. I feel guilty that I am raising her children, or talking with her sister, or having Easter dinner with her parents, knowing that it should be her there instead. I miss her laugh, and her "let's do it" spirit, and I'm still mad about the time she told me to suck it up, and guilty that I felt vindicated when she was sick enough herself to apologize for having said it. The feeling of missing her is a feeling of weight in my chest, of tears that want to flow for her, and her children, and her husband, and her family. I hope that she knows that I loved her, and that my love for them is not just because of my brother, but because of her, too. I know I'm just a placeholder here, but I hope she knows how much I miss her. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
My older sister, the one that came with the dad my mom chose for us, is distant in a different way. She's independent of the rest of us in a way that I both envy and pity. She has her own happiness and her own path, and I wish her well on them both, but I'd rather not be lectured on them any more, if it's all the same to you. </div>
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You know that pop psychology saying where the things you don't like about other people are the things you don't like about yourself? This sister is the one who makes me most feel like a hypocrite. Because I talk about what I need and making it work with what other people need, but when she does it, it seems so selfish to me that I almost cannot process it. Our needs are different of course, but I'm not sure hers are any less mandatory (in her mind) than mine are to me. That's a hard thing to face - to feel like you are being self-less when you are in fact being selfish. </div>
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This sister has a laugh that I miss: A cackling snort that was a staple of my childhood, and that I doubt I've heard in years. She's aloof in a way that makes me feel aloof. I know she's a mama bear, but she protects her cubs in such a different way than I would, that it's hard for me to hold out my hand to help. She says she has healing ... abilities. She has never once offered them to me. (And I cannot think that I would be anything but pissed off if she did. Hello, hypocrisy. Hello, mirror.) </div>
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She shuts doors with an enviable ease, but I think they're the wrong doors, so we find ourselves on opposite sides. I have never felt like she was my big sister: I feel like in everyone's eyes, I have always been the oldest, and I'm jealous that she somehow avoided all of that responsibility. Her favorite board game when we were children was Aggravation, and I'm not sure there could be a more apt description anywhere of how our relationship has evolved.</div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
The rest of my sisters are younger, and they are all babies to me in some way, even though the youngest will be thirty this year, and the other two are mothers. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
The other two are <u><i>amazing</i></u> mothers: Such different mothers, but both so caring, so capable, so determined to avoid the mistakes of our parents. And yet, their mothering reminds me so much of our mother, that sometimes it's indistinguishable. They have their own relationships with our mom, fraught with the opposite complications of my own (I was her chronically ill child; they were the children who wished for the attention I had stolen. I cannot find it in me to blame any of the players in that play for resenting the roles they were cast in, even as I regret and resent our casting.), and so to say to them "You have the best parts of our mother, mixed into your mothering" is a bridge I haven't crossed with either of them, unsure of the reception I'd get on the other side, but it doesn't make it any less true. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
One sister mothers with an ease and grace and adult-ness that was shocking and unexpected from one of our family's 'babies'. And yet, somehow, mothering is as natural to her as breathing, and her bond with her son is mesmerizing and sweet, complete and thoughtful. I know she is hurt, as I am, by the children who haven't come, the siblings she wishes for her son. Maybe they'll come in time for her; maybe they won't, like me. I'll be sad with and for her, if she doesn't get the family she wants, but I also know the family she has is enough. I hope she feels it too, if she needs to. Her boy is her heart, her guide, her star, and only good things will come from/for either of them. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
The other mother is anxious, and eager to avoid the generational mistakes that plague us. It's hard, when she's living in our parents' house, having to balance a pregnancy and a tantruming toddler, and a chronic illness or two that are untreated/able. But here's the thing I can't make her see, although I have tried, and will continue to try, every day if she requires me to. Every day, she battles, and she believes, and she begs and barters and bends her way through the day. Every. Day. And there's nothing that could make me more proud of her. Nothing that could make me say "You are the mother your kids deserve," than that. The need, the drive, the willingness to keep going, in the face of all that she has to handle, makes her a mother, full stop. Makes her THEIR MOTHER, and that's all they will require from her, if only she could step back and see it. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
She's the most closely connected to our mom, right now, and I am both envious (because I miss that for myself) and grateful (because I don't miss it ALL). She was the sister closest to me by age, who came along and stole whatever attention I must have been getting at the time (I was a pretty cute four year old, guys), and that made some of our relationship pretty rocky. She's the teenager who planned her sweet sixteen up a huge flight of stairs, then got mad at me for "making a scene" when I needed to be almost carried up them. Who my college roommate called a bitch (but only to me), the 300th time I was crying about some illness-related issue that she refused to accommodate. (She was big on perfume, as a teenager. And tantrums, including name calling her 'lazy ass, fake ass' pretending poser of a big sister.) But she's also the only sister who's apologized for all of that, who has acknowledged that teenage-her's behavior was shameful and horrifying. She's the sister I've sat, huddled under the table with, as she battled her own demons, and who would text me hysterically laughing during The Office. ("He's wearing Kleenex boxes for shoes: This shit is TOO MUCH!") She has a fierceness that made me sort her into Slytherin before the Sorting Hat could choose, but with such a Hufflepuff heart, it's hard not to build a giant shield around her so nothing bad in the world can hurt her. She's the one who calls me her person, and who tries to make me recognize that I am probably not a hideously dreadful human being, when I most feel like one. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
She's jealous of the connection the next-in-line sister and I have; I'm jealous of the one they have. There's so many twists and turns between us all, we could outdo most soap operas, pretty easily. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
That next-in-line sister and I have a physical proximity now that has helped us be closer, and a nephew we both love that we work hard to show our love for, together. She's become a friend I wish I could have, to her chronically ill best friend - the kind that listens and does your grocery shopping if you need milk, and calls your husband an ass if he calls you lazy, and remembers what you're allergic to - and I wonder where the girl who made me feel like the biggest imposition for daring to STILL be sick on Christmas, or her birthday, disappeared to. Her evolution as a human being has been so impressive and inspiring, and I wish I didn't have to tip toe so much around her that I don't get to enjoy all the benefits of that. But she never treats me like I should stop asking for favors, and she genuinely seems to appreciate my helping hand and occasional words of wisdom when it comes to her kid. </div>
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She's the baby I carried around on my hip the most, the one I learned how to fill bottles for and change diapers on, and I remember her tiny, chubby little hand holding mine as she hid behind my leg, from whatever people my parents had over. She has a level of warrior and witchcraft I wasn't expecting, and I feel lucky to be able to watch them bloom. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
The youngest of us, the true baby chronologically, lives the furthest physical distance away. She came to us late - a voice on a phone, a high, happy giggle - and everyone who should have loved her most abandoned her (either through death or by choice, or both) her whole young life. Some of us have stood up for her, and I think she knows that she is an integral part of us, a vital finger on the hand of us, but I also think that she's the furthest away because she's afraid of the abandonments to come: Her adoptive father, my uncle, is elderly. I am unwell. My brother checked out a long time ago. There are only so many times you can say goodbye.</div>
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She's our scholar, our high achiever, and I may have spent some time in my younger days resenting her nabbing the title away from me, and still managing to be the bohemian adventurer at the same time. I may spend some of my older days doing the same thing: who knows? She's careless with money, and has the same lax communication skills we all have, but she knows what matters, and how to say it out loud. She's a word wizard, a poetess (by both trade and temperament), and whatever she decides is what she does. Another independent spirit, somehow scattered in our flock. Maybe she feels like the black sheep, but I see her as yet another fuzzy cuddler. She non-ironically owns a typewriter, although she was not around when I was using one way back in grade school. She thinks up last minute crafts for Christmas gifts, and makes sure every piece of tinsel on the tree is strategically placed. Her artists eye may arrive a tad bit late, but you can depend on it, no matter what. She does not give up on the people she loves, even when they turn their backs, even when she maybe should. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
These are my sisters: Spread out amongst the world, and another world, and always in my heart. It's hard for me to not be physically near them all, and yet, when I am physically near them, that is often hard too. Sistership is a more tangled thread than friendship: It comes with it's own weight and weariness, it's own rememberances and remorse. And yet I would not trade it for anything. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
I wonder often about my mother, who lost her own sister so young - How did she go on from that? Did she ever feel that missed connection feeling of sending out signal into the universe only to have it bounce back unanswered? Does she feel it still? (It has been 30+yrs since my aunt died.) I do not remember my aunt well enough, as an individual adult, to recall what their relationship was like - there was more than 12 years separating them, after all: My mom was the baby, my aunt the eldest. I wonder too, how my remaining aunts and uncles go on, having lost so many of their number - They started (in my memory, anyways) as a clan of nine; their ranks now hold only 4. Less than half of them, and hardly ever in the same space. My heart hurts for them, and I can see how they hurt when we're together. How they reach for the stories, or the storytellers, and that pang when the only other one who'd remember isn't there to tell it with you. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
One of my goals lately has been to strengthen the connections I know mean the most to me. Sometimes this has been easy - making more dreaded phone calls (only the doing is dreaded: once we are talking there's nothing but warmth), poking and checking in on people who'd rather live in their shells. Often, though, it has been difficult. Sucking up my pride and apologizing for a thing I didn't mean to do wrong, but did wrong. Listening to opinions I do not agree with and not responding with sarcasm or spite. Leaving space for the needs of others, knowing that I may not (will not) be able to fill them all. And sisterhood has proven to be one of the trickiest. </div>
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</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
Because we're all these diverse, different people, and in some ways we're exactly the same. Some of us hate texting; others hate talking on the phone. Some have heartfelt meaningful discussions, told only in meme form. Others have no idea what memes are, or why we think they're so funny. All of us are hurting, in our own ways. All of us love each other, even if love means deeply different things to each of us. But I'm working on it. I'm working with it, and as much as I can, with them. Trying not to hold on too hard, but never giving up the fight. </div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: #333333; display: inline !important; float: none; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
</span><div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(51, 51, 51); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(51, 51, 51); border-left-style: none; border-left-width: 0px; border-right-color: rgb(51, 51, 51); border-right-style: none; border-right-width: 0px; border-top-color: rgb(51, 51, 51); border-top-style: none; border-top-width: 0px; color: #333333; font-family: Palatino Linotype,helvetica,sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 24px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
They're worth it. Each and every one of them.</div>
<div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0tag:blogger.com,1999:blog-17043579.post-68939063187507313612018-03-24T15:16:00.001-05:002018-03-24T15:16:44.091-05:00Another Winter In A Summer Town Everybody in my life is sad. <br />
<br />
And I'm a fixer, so, naturally, this feels like I am failing at every relationship I am involved in. <br />
<br />
It's ... overwhelming right now. <br />
<br />
I feel like the worst sister; the worst daughter; the worst friend; the worst acquaintance; the worst sudo-mother; the worst political participant; the worst<i><u> everything. </u></i><br />
<i><u><br /></u></i>
I cannot seem to spread myself far enough, wide enough, long enough, THERE enough for all the people who need me, and all the people I love, let alone the world at large and all the issues I feel compelled to address. <br />
<br />
It seems like everyone in my life is wrapped up in a spider's web of something - fear, anxiety, grief, loss, separation, isolation, memories, wants, wishes, denials - and I can't seem to cut through their webs, or the webs that surround me, to get the connection we both need. <br />
<br />
Reaching out is physically painful, because the support isn't there - to give or to receive. It never feels like enough. <br />
<br />
I'm doing all the things I can think to do...well, that's untrue - my brain can think of 900,000 ways in which I could be more participatory, but I can't find the time or energy or ability or words or breath to accomplish any of them. I feel so overwhelmed by my own life - the situation I have somehow found myself in, this faux-mothering I'm doing is a million times harder than I could have ever imagined, and there's all these complicating factors, and I mostly just want to nap, or read, or zone out when I get the chance. <br />
<br />
I need to take those opportunities to reach out more, but I don't know how to force myself to do that, because I am physically exhausted. I feel like all of my energy goes towards things I couldn't care less about - transportation here and there, cleaning up and cooking and tidying and straightening and making sure everyone has food and snacks and water to drink, and my own goddamn medical issues - that I have so little left for the people and things I care most about. And that's backwards, so backwards, but I don't have the first clue how to adjust it, really. <br />
<br />
Anyways, this is just to say, if you feel like you're failing everybody in pretty much every possible way, even though you're trying as hard as you can imagine trying? You're definitely alone. <br />
<br />
I hope I'm not alone either. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-SsHOT8D9SHA/WraxlYYiEUI/AAAAAAAAMfo/VHOCvcrQNLw9s15QDtr3YNOFeKHN1e9nQCLcBGAs/s1600/quote%2Bbeing%2Bthere.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="620" height="320" src="https://2.bp.blogspot.com/-SsHOT8D9SHA/WraxlYYiEUI/AAAAAAAAMfo/VHOCvcrQNLw9s15QDtr3YNOFeKHN1e9nQCLcBGAs/s320/quote%2Bbeing%2Bthere.jpg" width="248" /></a></div>
<br /><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com2tag:blogger.com,1999:blog-17043579.post-12716337544914973452018-02-10T21:42:00.000-05:002018-02-10T21:42:15.732-05:00My great-aunt died tonight. <br />
<br />
Or I guess, technically, not MY great-aunt. <br />
<br />
She was my dad's aunt, and since my dad is technically my step-dad, and since I have chosen to limit my interaction with him because he's an abusive narcissist, his side of the family has been pretty scarce in my life for a while. <br />
<br />
It's probably not a thing, because they were never super involved in our lives in the first place, but it's definitely been noticeable. Christmas cards, funerals and First Communions, basically - that's been our interaction in the last decade or so. I think it actually has more to do with the fact that they don't spend time with him anymore either, because he's a generally miserable human being, and the byproduct has been that they don't spend any time with any of us. Kind of sucks, but what are you going to do?<br />
<br />
<br />
But back to the great-aunt: She was scarce, but not in a voluntary way. She was 96 years old, and ill, and infirm, and after a fall a few years ago, afraid to leave her house, basically. The house with stairs. So i don't think I've seen her in person in about five plus years. <br />
<br />
Which is too bad, because she was a really sweet person. <br />
<br />
Always kind to me, no matter what. She wouldn't have given two shits that I choose not to really communicate with her nephew, because her husband was the same kind of guy, and I think she'd have probably cheered, if she'd known that some of us had gotten sick enough of his bullshit not to interact with him anymore. (Of course, there was also the 'what he says goes' element of her personality, so it's probably more 50/50 on which way that could have gone.)<br />
<br />
But I kept in touch the only way I really could... through letters and cards. Every new batch of pictures, I'd make a double or two and send them along to Auntie Lucy, with just a "Hey, thinking of you. Thought you might to see how un-little the littles are getting." Something held over from living with Grandmother and watching her wait for the mail, or the phone to ring, or somebody to just pop in. Even at her worst, when she wouldn't actually be so great during the visits, when there weren't any, she'd still be waiting for some. <br />
<br />
It was certainly not difficult to drop Auntie Lucy a card every now and then and let her know she wasn't forgotten. I even sent a card to her daughter once, because she was caring for her at home. Because I've been in her position - or something close to it anyways - just saying "hey, I know this sucks. It's so hard, and you're doing great even if it feels like you're messing it all up. I'm around if you ever need to talk." She never called, but I hope it made her feel a little bit less alone. Because that's a lonely, rough road to walk.<br />
<br />
So now, I have to figure out about wakes and a funeral. And rearranging any doctor's appointments and whatever else needs to happen this week. And try not to feel bad about not calling my dad to say I'm sorry she's gone. <br />
<br />
I am sorry she's gone, and I'm sorry I heard about it on goddamn Facebook first, but I'm not putting myself in a situation where I need to try and comfort him. That's not my job, not anymore. <br />
<br />
And that feels shitty, to be honest: To say, I know my dad will be grieving, and I know that I'm not even going to do more than barely acknowledge it. Because he'll be at the wakes and the funeral and everything else, and I'll have to see him and not make a scene, which means say "I'm so sorry," and not immediately run away when he tries to hug me or something. <br />
<br />
Boundaries are hard, even at the easiest of times. They're definitely not going to be easy to hold right now, when everybody is hurting. But I'm not opening anything even a centimeter more than I have to.<br />
<br />
Because I deserve to be treated like an adult human with feelings, and he is incapable of that, so: boundaries are there to protect us both, honestly. Because as much as I'd like to vent my spleen, it would just wind up hurting the people around us - my sisters and such - so that's just going to stay safely spleened up, and I'm going to nod along and keep the walls strictly in place. <br />
<br />
<br />
But I'm sad, tonight, because ... she was a nice lady, and she was always kind to me, and I know her daughters must be hurting, and even that he's hurting. All of those things, and the fact that family is a mess, at all times, even the saddest. <br />
<br />
Deep breaths and strong boundaries. Goals for the week. <div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0tag:blogger.com,1999:blog-17043579.post-4330588372589906512018-02-06T18:24:00.000-05:002018-02-06T18:24:05.557-05:00Why I'll Never 'Get Over" Nazi Cap Somewhere in the past two years or so, Captain America (in his comic iteration, anyways), became a Nazi. <br />
<br />
Or... more like it came out that<a href="https://en.wikipedia.org/wiki/Secret_Empire_(comic_book)" target="_blank"> he'd always been a Nazi</a>, even though he was, in our real-life actual world, created by t<a href="https://en.wikipedia.org/wiki/Captain_America#Creation" target="_blank">wo Jewish men during World War II</a>. <br />
<br />
Now, I'm only going to be able to talk about that in the broadest of strokes, because I couldn't read any of those comics, because even the idea of Steve Rogers being Hydra made me nauseous. <br />
<br />
So, I didn't read any of that run of the comics, and - I'll be honest here - I had to do some googling to see if he was still, currently, supposed to be Hydra, because I had to stop reading the press around the whole mess, for basically the same reason. <br />
<br />
Turns out - not so much: Regular Cap came back and kicked his ass, the whole thing was about the Cosmic Cube or some such nonsense, and Marvel wants us all to calm our tits about it, guys; we never should have doubted them in the first place. <br />
<br />
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">And I'm going to call bullshit on that, for all the reasons many a <a href="https://bookriot.com/2016/05/26/on-steve-rogers-1-antisemitism-and-publicity-stunts/" target="_blank">good writer</a>:</span><b></b><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-yXBkjKGFiUg/Wnom7abGYhI/AAAAAAAAMKo/D4M6n08I9gIRnlBQh1EJZ9WGNK5OyTleACLcBGAs/s1600/with%2Bthor%2527s%2Bhammer.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="197" data-original-width="255" src="https://2.bp.blogspot.com/-yXBkjKGFiUg/Wnom7abGYhI/AAAAAAAAMKo/D4M6n08I9gIRnlBQh1EJZ9WGNK5OyTleACLcBGAs/s1600/with%2Bthor%2527s%2Bhammer.png" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kicking Hydra Cap's Ass with Thor's Hammer</td></tr>
</tbody></table>
<br />
"The creation of Captain America was deeply personal and deeply political.<br />
<br />
<blockquote class="tr_bq">
Ever since, Steve Rogers has stood in opposition to tyranny, prejudice, and genocide. While other characters have their backstories rolled up behind them as the decades march on to keep them young and relevant, Cap is never removed from his original context. He can’t be. To do so would empty the character of all meaning.<br />But yesterday, that’s what Marvel did."</blockquote>
<a href="https://www.inverse.com/article/17669-captain-america-hydra-nazi-fake-twist-fans-angry-anti-semetism" target="_blank"> has already </a>expounded on, but also because, if it's true that art matters, in any type of real way, then turning the literal embodiment of AMERICA into a Nazi, in this day and age, sure as fuck means something. <br />
<br />
Maybe, if we didn't have rioters heil-ing in our streets, or white supremacists sitting in the White House, I could feel different. I don't think so, but it's a possibility.<br />
<br />
But we didn't, technically, have those things, right out in the open the way we do today, when this storyline started, so I still say bullshit.<br />
<br />
Two years ago when<i> Secret Empire </i>debuted, and Nick Spenser started explaining how chronically ill, disabled, potential queer, likely impoverished (or at the very most working class), son of immigrants, most likely Catholic, New Deal Democrat Steve Rogers somehow got hooked up with an organization that was <a href="https://en.wikipedia.org/wiki/Racial_policy_of_Nazi_Germany" target="_blank">anti-immigrant</a>,<a href="https://www.blogger.com/" target="_blank"> anti-disabled </a><a href="https://en.wikipedia.org/wiki/Law_for_the_Prevention_of_Hereditarily_Diseased_Offspring" target="_blank">people,</a> <a href="https://en.wikipedia.org/wiki/Nazi_persecution_of_the_Catholic_Church_in_Germany" target="_blank">anti-Catholic</a>, <a href="https://en.wikipedia.org/wiki/Pink_triangle" target="_blank">anti-homosexual</a>, and <a href="https://www.historylearningsite.co.uk/nazi-germany/trade-unions-and-nazi-germany/" target="_blank">anti-working class </a>in Brooklyn, in 193whatever, I opted out. <br />
<br />
Based on what I've read online - because again, I could not make myself read these comics, and I honestly don't have any desire to even try - his mother met up with a kindly Hydra agent, and young Steve was indoctrinated as a child. <br />
<br />
Again: I just need to remind you that Hydra are Nazis.<br />
<br />
And that Marvel gleefully manipulated his backstory, so that Captain America could also be a Nazi, with some useless assurances that audiences should just "wait and see" where it was going. <br />
<blockquote class="tr_bq">
<div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(70, 70, 70); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(70, 70, 70); border-left-style: none; border-left-width: 0px; border-right-color: rgb(70, 70, 70); border-right-style: none; border-right-width: 0px; border-top-color: rgb(70, 70, 70); border-top-style: none; border-top-width: 0px; box-sizing: border-box; color: #464646; font-family: "Georgia"; font-size: 19px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 28px; margin-bottom: 22px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
So let me be very clear: I don’t care if this gets undone next year, next month, next <i style="border-bottom-color: rgb(70, 70, 70); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(70, 70, 70); border-left-style: none; border-left-width: 0px; border-right-color: rgb(70, 70, 70); border-right-style: none; border-right-width: 0px; border-top-color: rgb(70, 70, 70); border-top-style: none; border-top-width: 0px; box-sizing: border-box; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">week</i>. I <i style="border-bottom-color: rgb(70, 70, 70); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(70, 70, 70); border-left-style: none; border-left-width: 0px; border-right-color: rgb(70, 70, 70); border-right-style: none; border-right-width: 0px; border-top-color: rgb(70, 70, 70); border-top-style: none; border-top-width: 0px; box-sizing: border-box; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">know</i> it’s clickbait disguised as storytelling. I am not angry because omg how dare you ruin Steve Rogers forever.</div>
<div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(70, 70, 70); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(70, 70, 70); border-left-style: none; border-left-width: 0px; border-right-color: rgb(70, 70, 70); border-right-style: none; border-right-width: 0px; border-top-color: rgb(70, 70, 70); border-top-style: none; border-top-width: 0px; box-sizing: border-box; color: #464646; font-family: "Georgia"; font-size: 19px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 28px; margin-bottom: 22px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
I am angry because how dare you use eleven million deaths as clickbait. </div>
</blockquote>
<blockquote class="tr_bq">
<div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(70, 70, 70); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(70, 70, 70); border-left-style: none; border-left-width: 0px; border-right-color: rgb(70, 70, 70); border-right-style: none; border-right-width: 0px; border-top-color: rgb(70, 70, 70); border-top-style: none; border-top-width: 0px; box-sizing: border-box; color: #464646; font-family: "Georgia"; font-size: 19px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 28px; margin-bottom: 22px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
How little must we matter. The people who created Captain America, and Superman, and countless other heroes like them. The people who need him. The people whose history and suffering and <i style="border-bottom-color: rgb(70, 70, 70); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(70, 70, 70); border-left-style: none; border-left-width: 0px; border-right-color: rgb(70, 70, 70); border-right-style: none; border-right-width: 0px; border-top-color: rgb(70, 70, 70); border-top-style: none; border-top-width: 0px; box-sizing: border-box; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">hope</i>, as we stood on the brink of annihilation, gave you your weekly entertainment and your fun thought experiment, 75 years later.</div>
<div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(70, 70, 70); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(70, 70, 70); border-left-style: none; border-left-width: 0px; border-right-color: rgb(70, 70, 70); border-right-style: none; border-right-width: 0px; border-top-color: rgb(70, 70, 70); border-top-style: none; border-top-width: 0px; box-sizing: border-box; color: #464646; font-family: "Georgia"; font-size: 19px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 28px; margin-bottom: 22px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
I hope it was worth it, Marvel. </div>
</blockquote>
<blockquote class="tr_bq">
<div style="-webkit-text-stroke-width: 0px; background-color: transparent; border-bottom-color: rgb(70, 70, 70); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(70, 70, 70); border-left-style: none; border-left-width: 0px; border-right-color: rgb(70, 70, 70); border-right-style: none; border-right-width: 0px; border-top-color: rgb(70, 70, 70); border-top-style: none; border-top-width: 0px; box-sizing: border-box; color: #464646; font-family: "Georgia"; font-size: 19px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 28px; margin-bottom: 22px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="font-size: x-small;">Jessica Plumber, On Steve Rogers #1, Antisemitism & Publicity Stunts</span></div>
<b></b></blockquote>
<b><span style="font-size: x-small;"><br /></span></b>
And, apparently possessing about as much introspection and self-reflection capabilities as our cheeto-in-chief, fans were basically told to just hold their horses, as post and tweet and columns continued to be written about how this was a betrayal, not just of Cap as a character, and his two Jewish creators, but of all the fans who've claimed Cap, and Steve Rogers, over the years. <br />
<br />
<br />
Listen - I'm 38 years old; I'm a woman; I'm chronically ill and disabled - I'm not the target demographic for the Captain America comics, and I never have been. As a kid, I was always a Wonder Woman girl, and then later, when my body started becoming my greatest enemy, I found Oracle, and <a href="http://neverthateasy.blogspot.com/2010/05/badd-2010.html" target="_blank">we've talked </a>about how awesome I think SHE is. <br />
<br />
But Captain America was mostly an overly-patriotic, Frisbee-flinging, do-gooder, as far as kid me was concerned. He seemed like the type to lecture you a lot - about finishing your homework, or your vegetables, or something. <br />
<br />
And then, with the MCU, I got a new perspective on Cap, on Steve Rogers, on the First Avenger & leader of the Avengers. <br />
<br />
According to it's IMDB, that movie came out in 2011, and that ... seems impossible to me, but ok: I guess I'll have to take their word for it. <br />
<br />
So 2011, a new Cap, and a backstory I hadn't heard before. <br />
<br />
A little guy standing up to bullies, who's got a good heart. (I'm not going to lie and tell you that the fact that he also had Chris Evans' everything did not play a part in my easy acceptance of him, because none of us our fools, BUT I can say that I was like Peggy - starry eyed about the guy, even when he was a little punk.) <br />
<br />
From there, I followed Steve Rogers through 70 years on ice; at least two major disagreements with Tony Stark (which I've complained about before); his accumulation of superheroes; his search for & reunion with Bucky; and now his exile into the Wakandan mysteriousness (bc I haven't seen Black Panther yet, so I know so little about how the MCU is going to portray it). In a couple of months, I'll follow that particular version of Cap - bearded, and with Bucky in tow, the previews make it seem - into battle with a giant purple space dude, who likes jewelry and wants to clobber us all. <br />
<br />
But that's not the only version of Cap I became enamored with. <br />
<br />
I<a href="http://neverthateasy.blogspot.com/2014/04/tbr-mountain-meet-tbr-universe.html" target="_blank"> fell into Avengers fanfiction</a> somewhere around March of 2013, if my A03 history is to be believed. <br />
<br />
Since then, I've read literally thousands of versions of Steve Rogers. <br />
Some of them were <a href="https://archiveofourown.org/works/10659162" target="_blank">Captain Americas</a>; some <a href="https://archiveofourown.org/works/5330861" target="_blank">weren't</a>. <br />
Some had his <a href="https://archiveofourown.org/works/1744628" target="_blank">canon comic</a> book history (pre-Secret Empire); some of them were born in the 1990s and never lived through the Great Depression. <br />
Some got the serum and got Capped; some got the serum and stayed little; some never even thought about turning themselves into some sort of medical experiment; still others got a serum that went wrong on them. <br />
<br />
A lot of them were chronically ill, or disabled, at some point, because that's a thing for me. That's my in for Steve, personally. This little guy, who wants better than his body allows him, and finds a way. I mean... there's all different kinds of wish fulfillment, aren't there. <br />
<br />
I've read thousands of AUs, where Bucky become Cap or Sam; Where nobody has powers and they all run coffee shops or tattoo parlors or comic book conventions. <br />
<br />
I've read a million Steves, but the one I haven't and won't read? <br />
<br />
Is the god-damn Marvel canon, Nazi Steve. <br />
<br />
Because that's an abomination. <br />
<br />
It's a betrayal of all that that character stands for, and has stood for, for over seventy five years. <br />
<br />
It's bullshit, anti-semetic, shock-value PR, corrupt capitalism at its finest. Perverting the work of (and again this can't be said too many times) two Jewish writers in such a way as to denigrate everything they were trying to accomplish with the character (and at the same time, trying to claim the moral high ground, because fans weren't 'waiting until the end to judge'). <br />
<br />
The fact that Marvel Comics still doesn't understand what it did was wrong and disgusting makes it hard for me to support them, in any form. I don't spend money on their books anymore, and I support the MCU in much more tremulous and fearful way - as if they, too, could betray all of that, and all of their fans, at any given moment. <br />
<br />
I'll still have fanon Steve Rogers, no matter what:<a href="https://archiveofourown.org/works/6985675" target="_blank"> the fanfic writers I know and love </a>had MANY a well-written response to this whole 'plotline' of bullshit. <br />
<br />
But it's a horrible feeling, knowing that the company valued shock value and money over (arguably) their most important hero. Certainly one of, at any rate. <br />
<br />
Captain America has been a moral, upstanding, ass-kicking (if uber nationalistic), icon for 70+ years, and they tore it all down, for no real reason at all. Just to sell some comic books, and take it back a few months later. And lost a lot of readers, including me, in the process.<br />
<br />
It's not much, to say here, on my personal blog, two years later, how disappointed I still am in all that. How hurt I still find myself over the fact that they took such a good man -yes, fictional, I know: but someone who STOOD FOR SOMETHING, nevertheless - and played him (and all of us) for publicity. <br />
<br />
And if you don't think that have Captain America spout Nazi bullshit has helped other actual non-fictional assholes spout their Nazi bullshit, then you're not as smart as I think you are, dear readers. <br />
<br />
** Author's notes **<br />
<br />
- Telling me to call him Hydra Cap is also bullshit: Hydra are Nazis, in any version of the comics, don't come at me with that 616 nonsense.<br />
- <a href="http://www.lawyersgunsmoneyblog.com/2013/10/steven-attewell-steve-rogers-isnt-just-any-hero" target="_blank">Here</a> is a good article on which I base some of my political declarations about Steve Rogers. Others are just common sense (Irish son of immigrants at that time? In New York? Most likely Catholic, no matter what his MCU dogtags say). Others are wishful thinking/headcanons (There's no proof that Steve Rogers is anything other than straight, I suppose, if you're thinking with a heteronormative lens. He did live in a historical queer area of Brooklyn, at that time, so ... <a href="https://rowaneliotmorris.wordpress.com/2015/03/08/social-justice-steve-rogers-and-the-radical-queerness-of-fandom/" target="_blank">I'll think what I want</a>; you think what you want.)<br />
- Here is a picture of the<i> real</i> Captain America #1 - Doing what he was made to do. Punching Hitler.<br />
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<i><br /></i>
<br /><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0tag:blogger.com,1999:blog-17043579.post-66660614696075853582018-02-01T12:01:00.000-05:002018-02-01T12:01:11.327-05:00An Insiders Tip To NTESo here's the thing... sometimes when I say "How are you? I miss you..." I really mean "I need you, can you come?" <br />
<br />
But I can't just say that. <br />
<br />
I can't just ask that, because I'm afraid the answer will be no. Because the answer has sometimes been no before.<br />
-<br />
<blockquote class="tr_bq">
<span id="internal-source-marker_0.4645389693505332" style="background-color: transparent; color: black; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">“Life
is weird and annoying for geeks like me, because it doesn’t adhere to
logic a lot of the time. It’s a wild Seussian machine. We put in Hard
Work and Passion and Money and expect to get back Success, when we’re
just as likely to get back Failure or Wild Monkeys or Surprise Baby.
The hell of it is, we are told by the culture, our parents, ourselves,
that Life is a logical machine. Now, sure, it’s really rare to put
Nothing into the machine and get Success back from it, so it makes sense
to load the machine with good stuff, but sometimes it’s just going to
shoot out a giraffe at you.” </span><a href="http://captainawkward.com/2011/12/06/commander-logic-tells-you-how-to-get-unstuck-question-146/"><span style="background-color: transparent; color: #1155cc; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: underline; vertical-align: baseline;">Commander Logic, December 2011</span></a><span style="background-color: transparent; color: black; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">, How to Get Unstuck</span></blockquote>
<br />
Having a shitload of giraffe days in a row. Feels like I'm having a ton of giraffe years, if I'm being honest. <br />
<br />
Life is not a logical machine. <br />
<br />
I don't know what I'm putting into it, some days. <br />
<br />
Some days, I can barely input "made sure children ate food that wasn't chocolate" and "homework got done and nobody got murdered." I mean, sure there's "Holy Shit, I helped my nephew Apply to colleges" days and days where the output is "Niece puts you as the person she admires most in a school project" days, but those are few and far between. Mostly it's "I woke the kids up and laid like a log for three hours, till I felt well enough to sit up and forage for food so I could take my pills" and "attempting to hold together the pieces of a family puzzle when other people are intent on hiding their pieces, or ruining them, or disguising them." <br />
-<br />
<br />
I don't exactly know how to ask for and receive help graciously. I mean, especially emotional help. Physical help is a hurdle I've had to jump over nearly every day for the past 23 years: Being chronically ill means sucking up a lot of your modesty or embarrassment or pride and just accepting that you physically <i>cannot </i>accomplish a thing without the aid of another human being. When you haven't showered by yourself in twenty three years, you learn pretty quick that physical help is something you're just gonna have to put your pride aside for. (Still: It isn't exactly <i>easy</i> to ask for that help. It still feels shameful, sometimes, or frustrating. It's just that I have a lot more practice with it, at this point.) <br />
<br />
But emotional help? Saying "I'm overwhelmed," or "I'm exhausted," or "I'm so goddamn frustrated I want to cry 23 hours out of every damn day?" Well, those are harder for me. And part of the reason is that sometimes people in my life have either refused to help me - "What do you want me to do about it? You're too sensitive!" - or not realized I was actually asking for help and minimized it so that I felt uncomfortable continuing to reach out - "Everyone's overwhelmed or exhausted."<br />
<br />
And I stopped seeing a therapist a long time ago, but I'm thinking - as I prod my niblings into their own counseling sessions, grumbling as they go - that it might be time to re-up on that front, find a new counselor for myself. <br />
<br />
Because all there's all these damn giraffes around here, and the zookeeper doesn't quite know what to do with them all, by herself. <div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0tag:blogger.com,1999:blog-17043579.post-82486439122785889452018-01-29T13:06:00.000-05:002018-01-29T13:06:21.817-05:00Among the missingHowdy folks ~ I know I've been SUPER lax at writing here, but I'm starting to feel like maybe that might need to change again? I don't even know if people still read blogs, but I'm starting to feel like maybe I need to write one, because without this outlet, my mind is a jumbled up mess. <br />
<br />
I haven't quite figured out what form this writing might take - I know I'm going to set a schedule, and try to keep it; I know I've got to write about the millions of things that are happening in my life, and in the world, without somehow turning into a giant rage monster (Honestly, hulking out often does seem appropriate, especially on Facebook, these days); I know I've got to start writing about my family and my new place in it, in a way that helps it make sense to me - and hopefully is interesting to the rest of you. I just know I have to start writing again, and I'm sick of giving myself reasons why blogging isn't the way I should do it. <br />
<br />
Maybe it's not... maybe I'll write for a while and decide: Yeah, nobody's reading this anymore, and I'm not enjoying writing it anymore, and it's time to close the shop. Maybe. But I feel like that won't happen. I miss writing here, in a deeply personal way... I miss all of the commenters and all of the nonsense, and all of the anticipation of saying something and knowing someone else would be reading it, would maybe have some input into what was going on. (Y'all are still the best, I know that, regardless of if I'm here to blab with or not.)<br />
<br />
So: Hi. Happy 2018. Can we agree that the world is a scary place and having someplace to talk about it might be a good move? And that even though life is ridiculous and busy and hectic and confusing, taking a few minutes (or an hour or two or three) to talk about stuff with other people is not just a good idea, but a necessary one? <br />
<br />
Ok, good. Glad we're on the same page.<br />
<br />
Welcome back. I missed you. <br />
<br />
<div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com1tag:blogger.com,1999:blog-17043579.post-71801848047559194312017-09-08T12:32:00.000-05:002017-09-08T12:32:05.862-05:00<h4>
<span style="font-size: x-small;"><span style="font-weight: normal;">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. </span></span></h4>
- <br />
<br />
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."<br />
<br />
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?"<br />
<br />
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. <br />
<br />
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.<br />
<br />
"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?"<br />
<br />
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.<br />
<br />
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.<br />
<br />
Even my father, whose memory is pretty tarnished (if only in my own eyes) was never that bad.<br />
<br />
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<i> her</i> 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.<br />
<br />
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?"<br />
<br />
"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?<br />
<br />
Obviously my worrying genes did not come from the ether.<br />
<br />
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.<br />
<br />
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. <br />
<br />
And yet, she excelled - she knocked it out of the park, if you ask me, even if she made mistakes along the way. <br />
<br />
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.<br />
-<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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? <br />
<br />
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.<br />
<br />
"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."<br />
<br />
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.<br />
<br />
"Silver shoes to match my dress. And a petticoat, with lace."<br />
<br />
<br />
<br />
<br /><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0tag:blogger.com,1999:blog-17043579.post-36178760349783693462017-01-19T12:31:00.000-05:002017-01-19T12:31:00.519-05:00Why 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. <br />
<br />
And I never felt like I knew what the hell I was talking about. <br />
<br />
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.<br />
<br />
"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." "<i>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." </i><br />
<br />
"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.) <i>"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><br />
<br />
"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." "<i>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." </i><br />
<br />
<i> </i>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.)<br />
<i> </i><br />
Mostly what I wanted to say was this:<br />
<br />
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. <br />
<br />
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.<br />
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<br /><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com2tag:blogger.com,1999:blog-17043579.post-3656357434622493122016-11-14T20:42:00.000-05:002016-11-14T20:42:10.498-05:00I 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.<br />
<br />
Are you ok?"<br /><br />I am not ok. <br />
I feel like I will never be ok again, because ...<br />
"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." <br /><br />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.'<br />
<br />
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 <i>get over</i>. <br /><br />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. <br /><br />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.<br />
<br />
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. <br />
<br />
My family <i>does</i> 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.) <br /><br />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 <u><b>NOT</b></u> 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. <br />
I heard; I listened when you spoke; I saw and felt your fear and anger and disappointment; but I didn't <i>know </i>firsthand. <br />
<br />
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." <br /><span style="font-size: large;"><b><br />I was not prepared for that, and I'm so sorry that you were. </b></span><br /><br /> 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. <br /><br />
But I promise you,<br />
<br /><b>I am listening, still. <br /> </b><br />
<b>I am trying, still. <br /> </b><br />
<b>I will do better, as much as I can, in any ways that I can. </b><br /><br />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 <i>option</i> not to experience it, where so many others have not. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />There are hard working people fearing deportment, or afraid that their families will become divided unfairly and unnecessarily.<br />
<br />
There are poor people who already know that this government will place them blame, and the burden, unfairly on them. Again. <br /><br /> 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.) <br /><br />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. <br /><br />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 <i>any</i>thing, 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. <br /><br />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 <b><i>Doing Things</i></b>. 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. <br />
<br />
I'm going to keep listening. I'm going to keep doing. I'm going to keep fighting, once I catch my breath. <br /><br />I'll see you all out there. Thanks for staying, for listening. For letting me learn and know I have to do better. <br /><br /><br /><br /><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com1tag:blogger.com,1999:blog-17043579.post-87015363185800724522016-11-08T12:24:00.000-05:002016-11-08T12:24:13.701-05:00In which I return from a LONG hiatus to complain about the election here, so that I don't set my FB feed on fireLet'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 <a href="http://blobolobolob.blogspot.com/" target="_blank">Fishy</a> today, re: the election.<br /><br /> 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! <strike>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.). </strike><i>(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.)</i><br />
<br />
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 <i>he was going to be assassinated</i> 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!<br /><br />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. <br /><br />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. <br /><br />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<b> because of. </b> 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. <br /><br />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!) <br /><br />There is some real looking hard at yourselves and your choices that Americans are going to need to do, post-election.<br />
<br />
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 a<i>re not the same thing at all</i>. I'm just saying, I was also not unaware they existed, just because I did not personally experience them.)<br />
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 <a href="https://www.google.com/search?q=trump+and+eugenics&ie=utf-8&oe=utf-8#q=what+is+eugenics" target="_blank">the definition</a>, and you look at <a href="http://www.huffingtonpost.com/entry/donald-trump-eugenics_us_57ec4cc2e4b024a52d2cc7f9" target="_blank">what he believe</a>s, you can see how many others and I were able to draw that conclusion.) <br /><br />That is an extreme I was not prepared for, in this (or any) election. <br /><br />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.) <br /><br />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 <a href="http://www.shakesville.com/2009/08/terrible-bargain-we-have-regretfully.html" target="_blank">Terrible Bargain</a> come to life, this whole thing.<br />
<br />
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.<br />
<br />
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.' )<br />
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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. <br /><br />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 <i>not</i> to vote for him," I've encountered, you can be sure of that. <br /><br />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. <br /><br /><i>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?) </i><br /><br /><br /><br /><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com2tag:blogger.com,1999:blog-17043579.post-53581588176877057972016-05-18T11:35:00.000-05:002016-05-18T11:35:05.547-05:00The 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 <i>the</i> piece of fictional dialogue I have most related to in my entire life.<br />
<br />
Because that's me: I want to be the guy (or girl, in this instance) that people count on.<br />
<br />
And I think I am, to a pretty large extent.<br />
<br />
But the thing about being that guy/girl, is that it's <i>fucking hard</i>. 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.)<br />
<br />
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.<br />
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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.<br />
<br />
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. <br />
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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.<br />
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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 <i>can</i> 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.)<br />
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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. <br />
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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 <u>hard.</u> 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.<br />
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He <b>loves </b>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.<br />
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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.<br />
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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. <br />
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Probably I'll just start rewatching The West Wing. That seems like a good idea.<br />
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<br /><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com1tag:blogger.com,1999:blog-17043579.post-6391849028796639282016-05-01T08:01:00.001-05:002016-05-01T08:01:22.501-05:00#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.<br />
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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 <i>you</i> don't experience something, how can you then feel qualified enough to say that it doesn't exist? <br />
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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.<br />
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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 <b>out</b> 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.<br />
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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.<br />
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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 <i>well</i> with. <br />
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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.<br />
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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. <br />
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<u>Just because it is not your experience, doesn't mean it's not valid. </u><br />
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To read about some more perspectives on (Dis)Ableism, head on over to the Goldfish's abode: <a href="http://blobolobolob.blogspot.co.uk/p/blogging-against-disablism-day-2016.html" target="_blank">BADD 2016. </a><u> </u><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com1tag:blogger.com,1999:blog-17043579.post-45158967322754487192016-04-29T14:37:00.001-05:002016-04-29T14:37:22.793-05:00Bet you thought you'd seen the last of meI 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. <br />
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BUT - I am determined to participate in the <a href="http://blobolobolob.blogspot.co.uk/p/blogging-against-disablism-day-2016.html" target="_blank">Blogging Against (Dis)Ableism Day</a> 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. <br />
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And I'm not completely absent from the web - you can find me tumblring at <a href="http://au-nte.tumblr.com/" target="_blank">Au-NTE</a> & <a href="http://whatshouldwecallfibro.tumblr.com/" target="_blank">Whatshouldwecallfibro</a>, 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 <a href="https://cannonballread.com/" target="_blank">Cannonball Read 8</a> (although I'm behind there, too). My<a href="https://cannonballread.com/2016/04/i-usually-hate-writing-reviews-about-books-i-didnt-enjoy-this-one-made-me-mad-enough-that-it-was-kind-of-fun/" target="_blank"> latest review</a> 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 <a href="https://twitter.com/NeverThatEasy" target="_blank">tweet</a> about<a href="https://twitter.com/NeverThatEasy/status/719207136568344576" target="_blank"> ridiculous</a> <a href="https://twitter.com/NeverThatEasy/status/706337613171466240" target="_blank">things</a>, and<a href="https://twitter.com/NeverThatEasy/status/721850676469489664" target="_blank"> important things</a>, and my <a href="https://twitter.com/NeverThatEasy/status/725061449375211520" target="_blank">love of all things Hamilton</a>, too, if you're interested. <br />
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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.)<br />
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<br /><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com1tag:blogger.com,1999:blog-17043579.post-15767799528978819462015-10-05T20:59:00.001-05:002015-10-05T20:59:54.957-05:00“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 BlogHey 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. <br /><br />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.) <br /><br />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 <i>actual</i> 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. <br /><br />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. <br /><br />He can't afford to bury himself in a hole, or hide himself in his room. And neither can these two kids. <br /><br />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. <br /><br />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. )<br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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. <br /><br />So, I'm apparently full up and bursting with news guys - a real mix of who knows what. <br /><br />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. <br />
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Thanks for hanging in, you guys. <div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0tag:blogger.com,1999:blog-17043579.post-21171316816200759142015-05-01T06:30:00.000-05:002015-05-01T08:31:38.978-05:00BADD 2015: Where I talk about Fanfiction and Comics, a lot, and you probably roll your eyes. <div dir="ltr" id="docs-internal-guid-3c7a7275-0712-7571-b637-a68c389a8d9e" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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 <a href="http://blobolobolob.blogspot.com/2015/05/blogging-against-disablism-day-2015.html" target="_blank">here</a> to see all the great posts (or follow @BADDtweets on Tumblr). </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">And, then, this week, I saw <a href="http://masterskyrocker.tumblr.com/post/117703500760/are-there-any-superheroes-that-are-representative" target="_blank">this</a> post </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> 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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Because fandom is where portrayals of disabilities are at, people. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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 <i>favorite</i> 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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">I have a lot of opinions, is what I'm saying. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> 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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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 <i>enough;</i> It isn't where we stop; but it's <i>something. </i></span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Sure, Tony Stark definitely has PTSD and panic attacks in <i>Iron Man 3</i> (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 <i>he</i> 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 <i>Captain America: The Winter Soldier</i> is showing his obvious signs of depression (which, eh: yes and no: I’m of both minds on that), they never come out and <b>say</b> it. Certainly nobody addresses it in any meaningful way. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">At least in the movie. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">In short, I’ve seen him as a <b>real person</b>. With <b>real issues</b>. That are addressed - within the context of that particular universe - <b>realistically</b>. (Because, let’s be honest, not everyone has the resources of imaginary -fanon Captain America.) </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Even Bruce Banner - who admits, in <i>the Avengers</i> - 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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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 <b>people</b>. Authentic representation for the win!</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span><br />
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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 <i>watch</i> the show with the superhero who is most like them, and Netflix is listening to them. Or when Deaf people applauded Matt Fraction’s <i>Hawkeye </i>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 <i>so many discussions</i> about how, and how to fix it, and... I almost never see that in 'mainstream' fiction. It's heartening and hopeful. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">There’s nothing better, to my mind, than a fic that gets recommended by someone who <i>knows</i>. 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. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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.” </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">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 <b>like they should</b>, I’m going to keep finding them where I can. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">(PS: If anybody’s interested, I can put together a list of recommendations, because: some of these should definitely be shared.) </span><div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com9tag:blogger.com,1999:blog-17043579.post-55197992607195310282015-04-16T21:02:00.000-05:002015-04-16T21:02:01.014-05:00Literally 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. <br /><br /><br />--<br /><br />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. <br />
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Before I became the woman-shaped-person who's taking up space next to the giant gaping hole his mother left behind. <br /><br />--<br /><br />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. <br /><br /> I wonder, sometimes, what role they've casted me in, or will cast me in, in their eventual memories.<br /><br /> Is that a normal thing to wonder? I don't even know. <br /><br /> 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? <br /><br /> 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. <br /><br /><br />"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." <br /><br /><br /><br />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.<br /> --<br /><br /><br /> 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.<br /><br /> 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 <i>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???</i><br /><br />And the thing is, my nephew is a sweetheart, and I <b>KNOW</b> 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. <br />
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I know he doesn't blame me, but he kind of also does. <br /><br />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 <u>STILL HERE </u>and his mom is <u>NOT</u>. 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<i> feel</i> wrong, because sometimes he looks at me like he hates me, and it breaks every little piece of my heart. <br /><br />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. <br /><br /> 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. <br />
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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 <b>her</b> fight with him over the damned trash. <br /><br /><br />---<br />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. <br />
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<div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com3tag:blogger.com,1999:blog-17043579.post-91101525130454929692015-02-11T10:13:00.001-05:002015-02-11T10:13:24.164-05:003 months later. I miss you guys. <br /><br />That seems like the place to start. <br /><br />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. <br /><br />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.) <br /><br />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. <br /><br />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. <br /><br />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.<br />
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"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. <br /><br />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 <i>would</i> 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 <b>hard</b>. <br /><br />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. <br /><br />And everybody else is on me to take care of myself better: which is a thing I <i>want</i> to do, a thing I know I <i>need</i> to do, but a thing I can't quite figure out <i>how</i> 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. <br /><br />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 <b>CONSTANTLY DOING</b> 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.) <br /><br />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. <br /><br />And, so, the lack of writing. <br /><br />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. <br /><br />I appreciate any of you still out there listening. <div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com2tag:blogger.com,1999:blog-17043579.post-16728068632129078352014-11-22T13:25:00.000-05:002014-11-22T13:25:53.262-05:002:41 AM, 10th November, 2014If 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.<br />
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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.<br />
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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. <br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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."<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
My mother comes in from the kitchen, seeing us, and begins crying too.<br />
<br />
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.<br />
<br />
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.<br />
<br />
I am - we <b>all are</b> - doing the best we can.<br />
<br />
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. <div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com1tag:blogger.com,1999:blog-17043579.post-51280513523813025882014-11-09T22:42:00.003-05:002014-11-09T22:42:35.627-05:00Things took a turn for the worse this morningand now we're holding vigil. and this is just TORTURE. <div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com1tag:blogger.com,1999:blog-17043579.post-48361058100209543522014-11-08T20:57:00.000-05:002014-11-08T20:57:31.022-05:00Bullet points for the brainless<ul>
<li><i>Maleficent </i>was magnificent: I probably like the idea of the story better than the original <i>Sleeping Beauty</i>. Angelina Jolie's cheekbones are RIDICULOUS in that film. </li>
<li>I just want to nap. For like, <strike>ever</strike>, hours. I miss me a good nap, especially now. </li>
<li>Somehow days are super long and time is super short right now. I despise this phenomena. </li>
<li>I can't remember the last non-cancer related conversation I had with my sister-in-law, and that's making me physically ill, because it was probably our last actual conversation. (That doesn't involve me coaxing her into taking her meds or trying to swallow her food.)</li>
<li>I'm ashamed to admit that I watch her breathe, but it's almost more painful to realize how many people I have had to do that for. </li>
<li>I didn't get to go home for a shower at all this week - things got hectic (but the slow, interminable kind of hectic that can only happen mid health-crises) and schedules didn't line up. But I'm getting one this week. Almost definitely. </li>
</ul>
Now it's pill time again; I have to talk to the hospice nurse tomorrow about when it's better just to not try to wake her vs when I should be absolutely making her wake up to take things. (I feel like never, but I don't want her to wake up in pain because I let her sleep through a dose of her pain meds.) <div class="blogger-post-footer">For All My Feed-Reading Friends, Just a Quick Hello ~ hope you are enjoying the blog. Just wanted you to know I appreciate the reads! </div>Never That Easyhttp://www.blogger.com/profile/04008749218695113192noreply@blogger.com0