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. 

Letting Other People Tell You Where I Am

Every morning I jump out of bed and step on a landmine. The landmine is me. After the explosion, I spent the rest of the day putting the pieces together.  Ray Bradbury

 “I want to think again of dangerous and noble things. I want to be light and frolicsome. I want to be improbable and beautiful and afraid of nothing as though I had wings.”- Mary Oliver

“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.” - Bernice Johnson Reagon

“I want so much that is not here and do not know where to go.” - Charles Bukowski

“There is no coming to consciousness without pain.  People will do anything, no matter how absurd, in order to avoid facing their own soul. One does not become enlightened by imagining figures of light, but by making the darkness conscious.”  Carl Jung

“It’s okay to feel the way you feel. You can feel angry. You can feel afraid. You can feel crushingly disappointed. You can feel bitter. AND you can feel the love.” Pace, 12-12

Mostly, I've been feeling the darkness, doing everything I can to avoid feeling the darkness (including some new obsessions which I will be back to share with you soon), and facing a whole bunch of things I'd really rather not face - about myself, my situation, and my future.  It's "figuring some shit out" time, I guess, and so far, I don't much like the stuff I'm coming up with.    I'm also having a super low-spoon issue - which is not news, but is particularly frustrating, because I'm used to having a set number of spoons - small but reliable - and without even those few spoons, I'm continuously frustrated with myself & my inability to get things accomplished most days.  I don't know if it's new meds (I think it might be), but I do not like it.  And coming at an emotionally taxing time, as well, that's not helpful.    

But I haven't been completely silent.  I managed to post over at The Band (the completely awesome, supportive Band Back Together) about one of my worst fears, one of the things that's most terrifying to me right this minute.  I've been active on Twitter for a bit, c'mon over and chit chat with me in 140 characters if that's your thing.  And I'm coming back here, because, as always, not saying things is hurting too much.  So, I'm here: trying to feel the love, and hoping y'all are feeling it too.  :)

"I Go To Seek a Great Perhaps"****

Well, here we are less than twelve hours into the New Year, and I've already made at least one wise decision:*  Early this morning, after watching the ball drop and wishing my mother a happy birthday, I snuggled down in bed with my first book of 2013, John Green's fabulous (and wrenching) Looking for Alaska .  I went into it knowing absolutely nothing: I thought Alaska was the state, if that gives you a clue as to how little I knew about the book (for those who don't know, Alaska is a girl's name).  But I had just spent three days in December watching John Green and his brother Hank (along with various other Internet-famous peoples) talk and read and work out and be awesome and chat live on YouTube with millions of Nerdfighters, all for charity. 

I don't know how I wandered across this year's Project for Awesome: I follow both Wil Wheaton and Miss Zoot, who are huge John Green fans, and I've been building up to reading The Fault is in Our Stars , because it's on every single "Must Read" list I've seen (and so many people I trust have loved it) - but it's also supposedly truly heartbreaking, which I can't really deal with yet, so it's been on the "I'll get around to it when I'm less weepy" pile for me. Anyways, somehow, I found out about Project for Awesome, and it was (awesome, that is).
  And in the midst of all the last minute Christmas shopping and bustle of wrapping up the entire known world of gifts, I carved out two days to sit and listen, and comment on various YouTube videos made in support of a million different charities.  The way P4A works is that each comment is worth a penny for a charity, and cumulatively, with over 700,000 comments they/we managed to raise $483,446 for the Foundation to Decrease World Suck.  I'm sorry, but if that isn't the BEST TAGLINE EVER, then I'm a unicorn.**

So after spending nearly three days listening to the Green brothers (and friends) speak and ramble and make up songs about their faces in the middle of the night, and try to auction off everything from googly eyes to unpublished, unfinished stories, and be as honest and heartfelt as just about anybody I've ever (not actually) met, I fell in love with them.  And it turns out, there's plenty to love: Their YouTube videos are amazing and informative, and have just enough snark to make me glad there are other people as sick as me out there.  Although there are SO MANY of them, and it is a little bit overwhelming right now, I'm glomming as fast as I can.

ANYways - back to the book.  It was, as expected, super awesome.  Quote-worthy, of course, but also moving and emotional in a way that I find much more often in Young Adult books than in what's supposedly "great literature" (make sure you read that in a snotty, British accent, okay?) I know there are people who look down on YA as a genre - these are the people who point at the dreck that is Twilight and pretend it represents the entire spectrum of what YA produces - but those people are obviously dopey non-readers, because the amazing stories, characters, themes and plots that exist in the YA section of your bookstore definitely hold up against any other, purportedly more 'grown-up' tales.

And Looking for Alaska is a good example of that.  Life and death is no less serious just because you haven't turned 18 yet.  Fear and love and hope and wanting - none of those things feels any less real or any less significant because you don't have a driver's license. I guess grown-ups forget that truth is truth no matter how old you are, and pain doesn't skip over you because you aren't ready for it.  I guess some grown ups forget that, anyways:  John Green certainly doesn't. 

I loved the book, is kind of the point, even though it was hard to read it, and even though I probably should've tried to sleep instead of reading it all in three hours in the middle of the night.  I loved it, and I'm going to read the rest of the box set I bought myself (even though it was two days before Christmas and I am seriously poor) as soon as I feel up to confronting a book about kids with cancer.*** 

If you've been here a while, you know that I don't like to do resolutions for the New Year, mostly because I can talk myself out of them just as easily as I can talk myself into them.  Instead, I like to pick a word, an overall theme that I hope to inject into my year.  One year it was Closer, another Breathing, yet another Worth.   All worthy, and not a single one worked out as I'd hoped.

Still, they each helped me to get through some tough times: keeping the word 'closer' in mind helped me get through some seriously shitty doctor's appointments; remembering to 'breathe' was the only thing that kept me sane this summer, when everything was crumbling around me and I was watching a woman I loved wither away; remembering that I am 'worth' something helped me confront some serious injustices in our family.  These mottoes have become important to me, have become keywords that help me cope with everything from getting out of bed in the morning to how to help someone you love say goodbye to everyone they love. 

But I was having such trouble coming up with a word for 2013 - I couldn't think of a good enough theme to propel me to where I want to be, to help me realize that where I am is both good enough and not enough.  I wanted something powerful, something ... all encompassing.  Of course, I came up with some 'almost right' words: try, accomplish, be willing.  But none of them were just right.  I've been playing Goldilocks with this year's keyword for almost a month now, trying to narrow it down. 

And then, this morning.  And John Green's obsession with last words (which, if you ask me is a wondrous obsession to have).  And The Great Perhaps. 

There's a labyrinth too, and that's a good word, but it's not my word.  Nope, my word for this year is just Perhaps.

Because sometimes I need a little push, and perhaps opens up the possibility.

Because perhaps makes me question things I already think I know the answer to.

Because perhaps is a positive maybe, and maybe is all I ever know.

Because perhaps is hopeful, and I want to be, too.

Because perhaps makes it seems like the choices are mine, even when they don't feel like they are.

Because perhaps holds your hand through the horrid stuff, and (while I personally could use a year free of all of that), it's comforting to know there's something to hold onto when it inevitably happens. 

Because perhaps comes from a new friend, and I'm hoping it will lead the way to more of them.




Because perhaps I can decrease some world suck of my own, thank you very much.

Happy 2013, everybody.  I hope your year is full of Perhaps as well.  


*I say "at least one" because I also did things like eating breakfast and taking my pills, which, in the long run, will prove to be wise decisions, I hope. 
**I am unfortunately not a unicorn. 
***Which isn't today, and IDK when it will be. Even though I know it's going to be really good, there's too many tender points that'll get poked, and I can't do that today. 
****Check Here for more info
 

Hanging out with my Sasquatch

Can't think of a word to encompass how overwhelming my pain is today.  Basically, I need to be floating, touching nothing with even the tiniest inch of skin, and - since my levitation skills are nil - that's not going so great.  I'm loaded up with drugs, in the hope that I'll just drift off for a little while, laughing at the idea that chronic pain patients use meds to get high... I'm using mine to keep me from skinning myself or following through on jumping out the window, just to feel something other than how bad this hurts.  My skin is the wrong size, I can literally feel my blood pumping, as if it's bruising me just by rushing through my veins.  I hate that there isn't a word big enough to cover how much it hurts; to compare it to 'hurting' at all seems like telling you a flood is the same thing as a teardrop - hurting is the only thing I'm doing at this point: it's who I am.  Existing, just breathing my way through it.  And all because of the stupid steroids, which, thanks for saving my life and all, but maybe next time you could do it in a way that makes me want to survive?  How is it that a drug that helps people with some kinds of pain somehow cause my nerve endings to act as if they need to interpret every input at DANGER: EXPLOSION levels.  I hate how quickly I can go from 'a little bit sick' to 'every part of your body is consumed by pain and fire', and how there's not a damn thing to do about it except to wait for it to pass.  Gonna get back to that, the waiting.  Here's some other people, making me feel more human, since they're pissed off at their pain, too.

"I have no patience these days with the Nietzschean cliché, ‘That which does not kill us makes us stronger.’ I’ve found that the deepest pain holds no meaning. It is not purifying. It is not ennobling. It does not make you a better human being. It just is. All the worst pain does is reduce us to our most primal animal. We want it to stop. We want to survive. It short-circuits any sense of self, diminishes us to a bundle of biological reflexes." Dana Jennings, Pain Beyond Words

“Pain is the Sasquatch of science, never witnessed, only endlessly speculated on.” Marni Jackson, Pain: the 5th vital sign.
 

"When I get caught up in the web of feeling, tied up til I’m completely ensnared in those slender threads of pain—–that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make?  Kiss it and make it the same.  Come get me and make me okay. I’ll wait here while we figure out why I’m fated to take it on any and all of my chins, What am I missing that makes me unlike what they call solid citizens?  What caused me to be a liquid citizen like myself, with the talent to find the winning part of losing, the talent to take that searing feeling of failure and writing it out til it doesn’t win…….?"   Carrie Fisher

Just keep swimming

“When you’re at that point, when you feel it’s all pointless… It’s not. The trick is to just keep doing it, that’s how you succeed in the end. It’s the secret to life, do anything often enough, and for long enough, and you get good at it. So keep on. Keep writing. Keep painting. Keep singing. Keep dancing. Keep fighting. Keep. On.” — via: I wrote this for you

Keeping my head above water here, but just barely.  So, more wisdom from various parts.  so close to my NaNo goal (43943), but running on fumes at this point - between the rash and the meds and just getting through the day, I'm lucky my brain is even semi-functioning, so I'll take what I can get.  I can manage 6500 (ish) words in the next four days, right?  (Right.  I think. Let's just keep going.)  

A reminder, as I crawl my way to 40,000, with 6 days to go

“In psychological terms, it seems that drive is more important than talent in producing creative work. The psychologist Dean Simonton has argued, for example, that the composers who produced the greatest music were simply the ones who wrote the most. Mozart and Beethoven composed all the time, whether walking down a street or attending a dinner party.” 

                         ~ The Midnight Disease: The Drive to Write, Writer’s Block, and the Creative Brain,  Dr. Alice Flaherty

Today's tidbits of wisdom

Might just give you an idea how well I am dealing with all the family drama around here, and the fact that a person who's supposed to be a grown-up thinks it's OK to be selfish, OK to ignore the consequences of his actions, and lives behind a great wall of denial. 

First up, some advice that I'm finding so difficult to put into practice, but that's not keeping me from trying, from Danielle La Porte,

"Want to improve your communication skills?
Then communicate.
Our most common communication blunder is not that we’re insensitive, or forceful, or misdirected. It’s that we fail to communicate at all. 

We swallow. We hedge. We delay. We punish with silence. We freeze with fear. We open our mind to assumptions but keep our mouths shut. We lock down. We just don’t say anything.

Most often, even weak or wobbly communication is far better than shutting down completely. Sincerity and courage go a lot further than “polished” communication skills any day.

Have the conversation. Say how you feel. Ask the question. Bring it up. Stumble with good intentions. Fly with an open heart. Communicate.”

 When you grew up in a house like mine, where your opinion was neither asked for nor appreciated by certain people, and where intimidation is still a daily occurrence, that is a lot easier said than done.  However, trying to turn myself into an actual adult, who takes responsibility for her own actions and expects others to do the same, I've realized that I can't do it by keeping my mouth shut (however much that is my comfort zone).  I'm not too pleased with this realization, people, but I'm doing my best to work through my discomfort and other people's pissy attitudes. 


 Which brings us to some vital truth from Melissa McEwan, of Shakesville: 

No one who has ever said "life is too short" to me has ever meant, "What can I do to make amends for having hurt you and restore trust between us as quickly as possible?"

They have always and only ever meant, "Your boundaries are stupid, and I am super impatient with your attempts to make me respect them, so here is some emotional manipulation to try to coerce you into letting me continue to treat you like shit without consequences."

What I'm saying is: I really hate the expression "life is too short."”

Next, a lesson from John Green:

“The good times and the bad times both will pass. It will pass. It will get easier. But the fact that it will get easier does not mean that it doesn’t hurt now. And when people try to minimize your pain they are doing you a disservice. And when you try to minimize your own pain you’re doing yourself a disservice. Don’t do that. The truth is that it hurts because it’s real. It hurts because it mattered. And that’s an important thing to acknowledge to yourself. But that doesn’t mean that it won’t end, that it won’t get better. Because it will.” 

Gonna work on not doing myself any more disservices, and I hope you do the same.  See you tomorrow, peoples.  

Prepare yourself for a week full of quotes

because my thinking box is on the fritz, and I'm at 30,000 (+!) words in my novel, and I'm not giving up on it no matter what.  even though my brain is giving up on me. 

So I've got a bunch of stuff I've been collecting from random places lately, that I keep wanting to post, and now's the perfect time for that.

To start us off, probably the best thing I've read all year, from the genius that is  Neil de Grasse Tyson:

“The problem, often not discovered until late in life, is that when you look for things in life like love, meaning, motivation, it implies they are sitting behind a tree or under a rock. The most successful people in life recognize, that in life they create their own love, they manufacture their own meaning, they generate their own motivation.For me, I am driven by two main philosophies, know more today about the world than I knew yesterday. And lessen the suffering of others. You'd be surprised how far that gets you.”

Hell Yeah

"Sometimes, the universe just aims for you and there’s nothing you can do except curl into a ball and keep breathing.  I don’t like that.  I do not like waiting for the next bus to come around the corner, I want to chase down the bus that hit me, drag the Universe out of the driver’s seat, and say, “Listen you sadistic prick, I have had it up to here with you using me for target practice, and if you come near me again, I’m going to slash your fucking tires and then come after your throat.  And my knife is swift, Sparky, so next time you get behind the wheel, avoid me like the black hole of rage and fear I have become.”

                                                                                                  Jenny Crusie, Bring It On

Friday Night Lite

Don't especially feel like writing tonight. Don't especially feel like doing anything but sitting in the rocking chair and wishing it was somehow powered by something other than me, because rocking seems like it would take too much energy.

So here's some stuff that other people I feel like sharing this week, just because.

On the subject of families and traditions:

“If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive in this moment. Each is present in your body. You are the continuation of each of these people.” — Thich Nhat Hanh

Lifenut talks about Snoopy Thanksgiving at her house, and the importance of building traditions.

"You can’t begin a tradition without making some promises to tomorrow. Tradition implies a respect for the past and a dream of the future bright and open. It’s recognizing something good and wanting that same goodness for people they won’t meet for years ~ their children."

In the same vein, there's this Chuck & Beans comic, from the Hallmark Shoebox blog -

And... that's all I have got for you tonight, because I am dragging. Just plum worn out, from trying to accomplish regular things, like normal people, and getting about 1/1400th of what I wanted to do accomplished. :shrug: Must stop trying to make words work well together, because none of them even really make sense to me anymore. Nighty Night!

Tastes like... chicken?

I just finished reading the most intriguing book, The Particular Sadness of Lemon Cake , by Aimee Bender.  It had such a unique premise - a little girl who suddenly develops the 'skill' to taste, in the food that someone has made, their true feelings.  It's kind of a tempting, exotic idea - to almost be able to read people's minds just by eating something that they've made - or even handled, as she can tell if the factory worker is disgruntled, if the truck driver is ready to retire, if the farmer is lying about how organic his crop is.  But with all 'gifts', there are some very severe drawbacks; When Rose first eats the birthday cake her mother has made for her, she is totally unprepared for the overwhelming hollowness that accompanies it, and that, she realizes, must reside within her mother's heart. 

The story was both foreign - what an odd concept, when you really think about it, to be able to decipher the thoughts, hopes, dreams, disappointments, trials of a person's life by whatever part of their essence they've left behind in the food they are making - and completely familiar: hers is a mostly normal family, with mostly normal people.  The way she talks about sitting at the dinner table and how each person at the table had such a distinct role to play - the brother who tunes them out, the father who pretends everything is fine, the mother who chatters away, the daughter who struggles to survive the next bite.  The relationship - lack of, building of, hope of - between Rose and her father was especially poignant to me, definitely reminded me of some of the times I've spent with my dad (either of my dads, really), and the sense of occupying the same space, but entirely different planets. 

The quality of the writing here was kind of startling, as well: I haven't heard of Ms. Bender before, but I've already added her backlist to my bookmooch wishlist, because she has a really excellent storytelling voice.  And every once in a while, one of her sentences would just sneak up on me, pounce: Truth!  Example: "After the incident in the ER, I no longer wanted to advertise my experience to anyone.  You try, you seem totally nuts, you go underground.  There's a kind of show a kid can do, for a parent - a show of pain, to try to announce something, and in my crying, in the desperate, blabbering awful mouth-clawing, I had hoped to get something across.  Had it come across, any of it?  Nope. " (p 106)   "You try, you seem totally nuts, you go underground:" That sentence there sums up a large portion of my life - you put yourself out there, and if people don't get it, if people don't get YOU, then back into your shell you must go, immediately.  And it takes a hell of a lot to try again.

I was greatly impressed by this book, by Rose and her family, and the secrets they all had.  By the way Rose just keeps sticking her neck out there, as best she can - and by the way she maneuvers her way through when she doesn't feel strong enough to try again - those days (weeks, months, years), and the getting through them matter too.  So: Excellent and intriguing story, one I think is going to stick in my mind for quite a while.  

A few links for your Friday Night

Here's one that nearly had me in tears: An Open Letter to the Fat Girl I saw at Hot Yoga in NYC. The part that got me? 

Oh Fat Girl at Hot Yoga in New York, are you at war with yours, too? Has it let you down? Are you angry with it? I am. Righteously furious, actually.

This stupid body that has failed me in so many ways these last two years. It has been endlessly sick. It has required surgery and bed rest and vicious medication that got me well, but made me feel sicker.

I AM VERY ANGRY WITH IT for being sick, for getting fat, for not doing what I SAY.

But I am nice to it anyway, three times a week, at Hot Yoga.

Because I am A-OK, ALL FULL UP, TOTALLY ON BOARD with the being angry at my body. I would excel in that class, were it offered. But I'm sorely lacking in the being nice to it anyway department. She says 3 times a week for 75 minutes, she cuts herself a break, takes this class. I can't remember the last time I had a nice thought about my body and what it was able to do. When even breathing hurts, it's hard to be happy that you're taking a breath. It's hard, but it shouldn't be impossible. So I'm going to work on that.

Then there's the beautiful Kate, over at sweet|salty, who writes (with such grace and clarity) about something a feeling that is neither graceful nor clear:

The word 'anxiety', especially preceded with the word 'my', needs to be benignly neglected in the way that you ought to benignly neglect that kid who keeps saying the f-word at supper. The word 'anxiety', in its reference to a constant and entirely unspecial human state, needs a yoga retreat with a workshop about how inspiration is a myth that will only stunt its creative process and land it in the 75% of writers who will never type The End.

She talks about fitting in, and excluding yourself anyways; about jumping into the ocean and braving sharks, but hiding away while your friends roast marshmallows. She talks about living, really. And fear.

Sometimes, it's nice to know that other people are on the same page as you.  That's how I felt when I read this post from Black Hockey Jesus:

Do you remember, little girl, where we were when we read that book? There was no you or me or the circus of problems where the mind loves to play. We weren’t in a bed in an apartment nor could we be confused with the characters in The Miraculous Journey of Edward Tulane. We were simply gone. We gave way. We became the empty place where stories arrive, where they show, come to be told, appear, where they happen. Because it happened, didn’t it?

The magic of reading is overwhelming sometimes, and in his letter to his daughter, BHJ manages to capture that so, so well.


Lastly, there's this, a quote I had in my files for a while, but I saw it somewhere this week, and it was like a life preserver.  Delivering some hope, when I need it most:

It doesn't matter how long we may have been stuck in a sense of our limitations. If we go into a darkened room and turn on the light, it doesn't matter if the room has been dark for a day, a week, or ten thousand years -- we turn on the light and it is illuminated. Once we control our capacity for love and happiness, the light has been turned on.
—Sharon Salzberg

See you guys tomorrow! 

"When I get caught up in the web of feeling, tied up til I'm completely ensared in those slender threads of pain -

that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make? Kiss it and make it the same. Carrie Fisher

Thanks for showing up for the September Disability Blog Carnival ~ I had such fun (and a few minutes of trepidation, I won't lie) putting this together, and I hope there's something here that is meaningful to you.
I had the tentative theme of Being Seen, and I think we managed to get some great posts that address just that.

I'm going to start off with a rather sociologically bent contribution,Embodied Ontology Model: A Way Forward, which was suggested by Jon. Although it focuses most specifically on the Deaf community and its needs, I think its ontological perspective is pretty compelling for anybody who's interested in the larger sphere of dis/ability. There's a lot of talk about the pros and cons of the medical vs social model of disability, and the gaps that people can fall into if you're looking at it in an either or type of way:

The desire to belong and to fit into society is a strong human need...Recognition of difference, or ...‘otherness’ is crucial for minority groups in negotiating their place to ‘belong’ in the diverse cultural landscape... Yet there is considerable resistance or social inertia to acceptance of any form of difference within society.

I think there's a lot of interesting stuff here about being seen: wanting to be accepted, to belong, but also to have the recognition of differences, and the making a space for (or, alternatively, isolating) those differences along the way. It's definitely thought provoking.

One of the more interesting aspects of being seen, for those of us with 'invisible' illnesses, is the idea of disclosing: How and why and when do you tell people about this part of yourself? Leslie, at Getting Closer to Myself, discusses disclosing, and her specific hows and whens, in this recent post . She's so honest about the need for connection, and the vulnerability that you can feel in those situations: it's definitely worth a read.

The ever-wonderful Laurie, over at A Chronic Dose, has a provides her thoughts on disclosing as well, both as a teacher and as someone who suffers from chronic illnesses.

Next, I'm including a post from the uber-famous Bloggess, about how it feels (to her) to be living through an RA flare, for a couple of reasons. For one, as a person with FM, I'm all too familiar with the hideousness of flares and her words really resonated with me:

"Life passes. Then comes the depression. The feeling that you’ll never be right again. The fear that these outbreaks will become more familiar, or worse, never go away. You’re so tired from fighting that you start to listen to all the little lies your brain tells you. The ones that say that you’re a drain on your family. The ones that say that it’s all in your head. The ones that say that if you were stronger or better this wouldn’t be happening to you. The ones that say that there’s a reason why your body is trying to kill you, and that you should just stop all the injections and steroids and drugs and therapies."

and made me wish I had someone in my life to tell me "“It might be easier, but it wouldn’t be better.” Secondly, since we're talking about Being Seen, I thought it was important to note that such a prominent blogger was able to shine a spotlight on something that doesn't often get discussed. To me, seeing that there are other people out there who get it? Is vital.

Here's a poem Megan at Mirrored Lens posted for Invisible Illness Awareness week, about wanting your doctor to see you (but I know my eyes plead fix me) that I think many of us can relate to.

thatwordgirl spends some time talking about how she wants to be seen, and how she can make herself be seen differently, in this post about being the It Girl. I envy her her costume geekery: although I've gone so far as to paint the Batgirl insignia on my hands for the trick or treaters, I'm not quite bold enough to go full-out Oracle for Halloween.

This post, by Wheelchair Dancer, about the audience's reaction to the dancing vs. her own perception of it is illuminating. I've seen some of those "weaker choreographed" pieces (not from that troupe specifically, but in my internet travels, certainly), where the dancers in wheelchairs somehow seem to be props for the more 'able bodied' members to show off around. And they're kind of heartbreaking. Because I've also seen the wonderfully choreographed ones (and am now wishing I could find them - YouTube, why aren't you cooperating?), where the chairs are neither props nor handicaps, and all of the dancers dance.


Sharon Wachsler spends some time calling out Esquire Magazine, and a few other organizations, in her post Disabled Writers Need Not Submit:

"Nobody has to say, "I wasn't thinking," because they don't have to think . . . about disability. About us. That's what ableism is about. That's what privilege means: not having to think about what you don't struggle with."

Surely it's hard for people with disabilities to be seen if they can't even access opportunities to tell their stories?

And on the subject of telling stories for PWD, I wanted to point out this post, by s.e. smith, because I'm a total bibliophile, and this discussion of Mental Illness in Young Adult literature added more than one book to my TBR pile. Since books mean so much to me, and there's so many just plain bad - poorly written, stereotypical, not at all feasible, miracle cured! - books out there about people with disabilities (for all age groups: I did my thesis on disability representation in picture books, and there was more than one groan-worthy inclusion, let me tell you), I am so glad when someone gives kudos to authors who are doing it right. As smith says "These characters were carefully researched and sensitively depicted, in a way that resonated for many readers."


Thank you all so much for coming to this edition of the Disability Blog Carnival! Next month's edition will be hosted by Spaz Girl (Cara) at Butterfly Dreams. I know she and Penny will keep us posted.

Then she said, “You know, it’s so funny. What keeps any of those people in that dining room from being like me is just a virus, a thing in my body over which I had no control. Why did I get it and not them? Fate. Circumstance. Luck. But I have a place on the earth, just as they do. I have rights. ... When the shrink talked about how the disease would affect my personality, I talked about how my personality would affect the disease. I didn’t understand why nobody… I kept thinking, ‘I am me! I am still me!’” Her voice began to shake and she closed her eyes, then opened them. “Wipe my tears away and give me a chocolate,” she said." Elizabeth Berg: We Are All Welcome Here

I'm only halfway through, but wanted to get something up

Well, despite all my good intentions, I completely missed blogging on BADD this year. I had a post all written, but was too sick to get on here to hit publish, or send my link to the lovely Goldfish. Now that I'm improving again, I'm making my way through all the links, and wanted to share some of my favorites.

And, by favorite, I find that (more often than not) I mean the ones that talk about the most despicable or moving or memorable abuses that people with disabilities face on a daily basis. A lot of these are also unfortunately, all to familiar to me, and to others with disabilities.

Under despicable, please file the unbelievable (or all-to-believable) but true story of Kimba, that Julia shares with us

You don’t even get a trial when your crime is drooling or not talking, when your sin is PTSD or autism, when the thing you did wrong was being born and then not quite meeting expectations. You just get put away.

(I can't post over there because I don't have Wordpress, but I just can't even express how Kimba's story has impacted me. It is heartbreaking and nauseating, and just... so horrid.)

Also see the things AngliKitten is doing wrong; Hannah's post about the accomodations her office refused to provide for her until it was too late to do her any good; or what Sue has to say about people who look away.

It's easy to get discouraged, reading all of this. It's easy to come away from BADD with a feeling of "why even bother?" I know, for me, it's especially hard to keep fighting when I haven't got the energy to do everyday things like brush my teeth or make it to yet another doctors appointment. Sometimes, I just have to step away for a little while, to take a breather. But I keep coming back because, whether I want to fight it or not, people are going to keep treating me and other people with disabilities differently, unequally, abusively. So I don't have the option of walking away permanently. Even if I did, though, even if I magically was all of the sudden no longer being discriminated against because of my disabilities, now that I know that other people are, knowing about it makes it my problem too. The reason there's a BADD, the reason I keep reading, and all of these lovely people keep writing, is because there's something to blog against. If there wasn't? Then we could all go on our merry ways, (off to fight another fight, most likely), and gather on May 1st to say "Look at that, it's all fixed!" But until then, it might help to think of it the way that Neurodivergent K put it:

They will fight for each other, but no one fights for us. I am tired of fighting, but I keep doing it because it's fight or die, and I am not dead yet.

Because we're none of us, dead yet. So we'll keep showing up, whenever we've got the spoons. (At least I will.)

For some slightly more positive BADD posts, there's Martha's post about thank yous; Fausterella's post on Being Vincible (and an ally); Where's Lulu's list of current TV actors with disabilities (to show that we are out there, sometimes).

Haven't made it all the way through yet, though, so I'll keep you posted as I come across more favorites. In the meantime, you can still read all of the Blogging Against Disabilism Day Here

"I wouldn't stop for a beer...."

Did I previously mention that I am really good at starting projects, but that sticking to them is something of a ... challenge for me? I thought so. But I'm determined to stick to the spirit of this thing, and to keep to the truth for 30 days.

However, as was evidenced by yesterday's post, I've decided the order of these questions doesn't suit me. Today's post is evidence that even some of the questions - as written - don't suit me. Case in point, Day 21 → (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?

Why is this even a question? If a friend, any friend of mine, was in a car accident, regardless of whether or not we had gotten into a fight, I would bust my ass getting to the emergency room. If they needed me, I would be there, fight or no fight. (Which is kind of beside the point, because I don't really fight with my friends, so I substituted the word "sister" in my mind, because that's more likely.) In answer to your question, however, I submit the following video, courtesy of one of my OTPs & the fabulous Aaron Sorkin:




"I wouldn't stop for red lights."

It's just that simple. (I told you: I'm very loyal.)

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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

"Any change, even a change for the better, is always accompanied by drawbacks and discomforts."

Arnold Bennett

Tell me about it. Feeling beat tonight, I'll be back tomorrow.

My quote this week

"It's a strange thing, but when you are dreading something, and would give anything to slow down time, it has a disobliging habit of speeding up."

Harry Potter and the Goblet of Fire, J.K. Rowling

Time is going both too fast and too slow just now. The closer we get to our move out date of April 30th, the more I want time to just pause - not slow down or go faster, but to just wait a minute for me to catch my breath. Just wait a minute for me to make tough decisions, for me to know which is the right way to go, what is the right thing to do.


As time shows no signs of actually complying with this request, I figure I better just pick something, or else.

And I'm not really up for any 'or else's right now, thank you.

Hope your Friday is going ok, and wishing you all a nice, restful weekend.

Friday Quotables

"You don't think she lived happily ever after?" Lord Richard asked softly, his fingers brushing past Amy's as she traced the contours of a small bird.

"That's an ending for books, not for people."

"What are books about, if not people?"


- p289, The Secret History of the Pink Carnation, Lauren Willig.

I'm having much better luck with books this week than I am with people, so this quote seemed like something I should try to remember. If you're interested in seeing more quotes, or in participating, click on over to Bookish Ruth for today's other Quotables.

Quotable

"But it seemed to me that this was the way we all lived: full to the brim with gratitude and joy one day, wrecked on the rocks the next. Finding the balance between the two was the art and the salvation.”

Elizabeth Berg, Year of Pleasures

Quotable is hosted by Bookish Ruth every Friday, so if you'd like to see what other people have found inspiring this week, I recommend heading on over there.

Happy Friday, all.