Monday, May 14, 2018

Time 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.)

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.)

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 sometimes and only on his own terms. 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.

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.

Here were the good parts:

  • 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 thought 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.) 
  • 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.
  • also blah blah blah sports stuff

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.)

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.  

Thursday, May 10, 2018

When 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.

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.

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.

I was not an outdoorsy kid.
(I am not an outdoorsy adult.)

But in our house, especially during summer vacation, if it was nice out, you were outside.
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.

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???

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.

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.)

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.

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.

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.

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.")

Tuesday, May 01, 2018

Food Stuff

One of the things I hear/read/am haunted by most as a person with chronic illness is the completely inaccurate 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 CURE me where the inaccuracy lies.

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. 

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.

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. 

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.

  • 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. 
  • I need to drink upwards of a liter of water, every day, without fail, for my blood pressure. 
  • I also need to eat a high 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. 
  • 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'. 
  • In the meantime, the medication makes me nauseous, so I feel like not eating basically every time I drink it. 
  • 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. 
  • 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.
  • 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. 
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, through years of hideously painful experience, that listening to my body is dangerous.  For my physical and mental health. 

So hungry? I don't know.  But does that girl scout cookie smell good? Yes: So I'mma eat it.  

Those are basic guidelines in which I have to then
1) Find the spoons to make a meal
2) Find the spoons to eat the meal

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 meaningless to a person who doesn't feel better, ever.  Nothing I eat makes me feel more tired, because I am already at 'exceeds human levels of tiredness' tired.  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. 

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. 

Here's a hint: Ya don't.  I have lived with these restrictions (and a lot more that I haven't gone into) for this long, and managed to keep myself alive. 

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. 

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. 

Saturday, April 21, 2018

"We are sisters. We will always be sisters. Our differences may never go away, but neither, for me, will our song." Elizabeth Fishel

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.
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.
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.
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.
(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 second 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.)
Sisterhood is a complicated, messed up, confusing mix of shit, sometimes.
I have five sisters.
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.
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.
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.
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.)
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.
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.
The other two are amazing 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
They're worth it. Each and every one of them.

Saturday, March 24, 2018

Another Winter In A Summer Town

Everybody in my life is sad. 

And I'm a fixer, so, naturally, this feels like I am failing at every relationship I am involved in. 

It's ... overwhelming right now. 

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 everything. 

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.

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. 

Reaching out is physically painful, because the support isn't there - to give or to receive.  It never feels like enough. 

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. 

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.

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.

I hope I'm not alone either. 

Saturday, February 10, 2018

My great-aunt died tonight.

Or I guess, technically, not MY great-aunt. 

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.

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?

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.

Which is too bad, because she was a really sweet person. 

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.)

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.

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.

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. 

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. 

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. 

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.

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.

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. 

Deep breaths and strong boundaries.  Goals for the week. 

Tuesday, February 06, 2018

Why 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. 

Or... more like it came out that he'd always been a Nazi, even though he was, in our real-life actual world, created by two Jewish men during World War II

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. 

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.

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.

And I'm going to call bullshit on that, for all the reasons many a good writer:
Kicking Hydra Cap's Ass with Thor's Hammer

"The creation of Captain America was deeply personal and deeply political.

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.
But yesterday, that’s what Marvel did."
 has already 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. 

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.

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.

Two years ago when Secret Empire 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 anti-immigrant, anti-disabled people, anti-Catholic, anti-homosexual, and anti-working class in Brooklyn, in 193whatever, I opted out.

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. 

Again: I just need to remind you that Hydra are Nazis.

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. 
So let me be very clear: I don’t care if this gets undone next year, next month, next week. I know it’s clickbait disguised as storytelling. I am not angry because omg how dare you ruin Steve Rogers forever.
I am angry because how dare you use eleven million deaths as clickbait.
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 hope, as we stood on the brink of annihilation, gave you your weekly entertainment and your fun thought experiment, 75 years later.
I hope it was worth it, Marvel. 
Jessica Plumber, On Steve Rogers #1, Antisemitism & Publicity Stunts

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. 

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 we've talked about how awesome I think SHE is. 

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. 

And then, with the MCU, I got a new perspective on Cap, on Steve Rogers, on the First Avenger & leader of the Avengers. 

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. 

So 2011, a new Cap, and a backstory I hadn't heard before. 

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.) 

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.

But that's not the only version of Cap I became enamored with. 

I fell into Avengers fanfiction somewhere around March of 2013, if my A03 history is to be believed. 

Since then, I've read literally thousands of versions of Steve Rogers. 
Some of them were Captain Americas; some weren't
Some had his canon comic book history (pre-Secret Empire); some of them were born in the 1990s and never lived through the Great Depression. 
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. 

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.

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. 

I've read a million Steves, but the one I haven't and won't read? 

Is the god-damn Marvel canon, Nazi Steve. 

Because that's an abomination. 

It's a betrayal of all that that character stands for, and has stood for, for over seventy five years. 

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'). 

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. 

I'll still have fanon Steve Rogers, no matter what: the fanfic writers I know and love had MANY a well-written response to this whole 'plotline' of bullshit. 

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. 

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.

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.

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.

** Author's notes **

- 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.
- Here 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 ... I'll think what I want; you think what you want.)
- Here is a picture of the real Captain America #1 - Doing what he was made to do.  Punching Hitler.