I know I say this every November,

but I don't know why I forget that writing is so important for my brain. It's one of those things that quickly falls off my daily to-do list, especially once I flare or an infection crops up or a hospitalization, or even things like eating regularly or Christmas shopping, or what have you.  At that point, it's so much easier to spend my downtime wandering through some revolving cycle of Twitter, Tumblr, Feedly, e-mails, etc, rather than spending valuable spoons trying to create something, even if it's something just as small as a paragraph to post here. (For examples, see this entire past year on this blog, where I have posted less than I will during the month of November.  Grief and even low-grade illness management have combined into a total word-eater of a year.)

And then, I start writing, and it's hard, and I think everything I am writing completely sucks, and how would I ever let anybody read it, and why am I even bothering to try??? and then... Oh Look: Twitter, Tumblr, Feedly, oh my. Yeah. But then I've signed up for something, and I don't like to quit. or I've said it out loud and now people will know if I back out, so I at least have to put something; and the more somethings I put in, the better they start to seem, and maybe I'm not completely useless after all.

Of course, there's still a 60% suckage rate, but that's better than 99%, and it's better than writing nothing, which is 100% sucky.

I don't even know ~ I mean, it's really hard to keep to a schedule when you're chronically ill: Or maybe it's not, maybe it's just me.  I think part of it, for me, is that so many things are Have Tos, health-wise, that making anything else mandatory makes it feel overwhelming and constricting and I immediately want to act in complete opposition to that mandate. I'm a rebel! You can't make me! I don't wanna! Crumbles into a ball on the floor...

What, is that not how adults act? Am I supposed to be a grown-up about everything, just because, technically, I am a grown-up?  That doesn't seem right.

But there's something about NaBloPoMo, and now NaNo, the challenge of it, and the fact that I know so many other writers are out there typing their fingers down to nubs and banging their heads against the same plot walls as me, that makes it seem communal and joyful and not like a task that needs to be checked off the to-do list, more like something I'm happy to do.

Unless I am not making my word count. In that case, words suck, NaNo sucks, I am the world's worst writer, and YOU CAN'T MAKE ME.

But, so far, I'm doing okay word count-wise: I plan on hitting 25,000 either tomorrow or Friday, which is right on schedule, and I'm completely not addressing the fact that my main characters are now closer to 14-15 than 12, because, whatever, that's for the edits.  Also, I think there might suddenly be a relationship subplot, which I totally didn't sign up for, but we'll see if I can manage to make it not be the worst thing in the world.

So what should you take from this long and rambly post re: National Blog/Novel Posting/Writing Month?  Aside from the fact that my brain is a huge battlefield and you should be super glad that you don't have to enter it at any point in time?  Just that writing is a practice, like everybody who writes is always saying, and the more you do it, the more you want to do it, except when you don't. 

Logic. 

Plus also, my dad's been on sick leave/vacation for three weeks, and summer vacation starts Tuesday for the kids, so: totally fine!

So, one of my biggest problems with this space is that it is both awesome and pressure all at the same time.  Good pressure, but still.  Hoping to start up the daily blogging thing again come July, if only because it'll give me a reason to keep the door closed and the TV off.  But I'm working on some things, some projects, in the meantime.  Got stuff brewing. Doing a little bit of non-blog writing every now and then, even. But there's also been a bunch of family stuff (always), and a severe spoon shortage (also always), so I'm only getting through about a third of my to-do list. 

Oh, and that's not even mentioning the doctor drama, wherein I (yet again) get dumped by my primary care doctor and have to scramble to find a (MassHealth accepting) replacement. (Which I have yet to do: joy of joys!) And how that screws up every single other doctor and specialist I have to see, all because, well - she don't know what to do with me anymore, and she's sick of trying and having more things go wrong? Guess who else feels exactly that same way? But doesn't have the luxury of bailing?  This girl, right here! Although her official complaint was that Zack was taking over more and more of my care, and 'he's not in our network, so I don't get his notes right away and that's not a viable way to provide care.' So... because your computers don't speak the same exact language and it takes a couple of weeks for things to get filtered through to you...? Mmhmm: Not Buying It. 

I knew it was coming - I am not a debutante dumpee, after all - a few months back when she started talking about how the hospital was consolidating referrals and maybe I'd have to start switching some of my specialists over to new ones. Which would mean finding at least six new specialists and starting from scratch with all of them, ON TOP OF leaving Zach, which I am just unwilling to do, instead of just, say finding a new primary care doc. She was quick to point out that it would be easier on me to find a new PCP, probably, in long run, didn't I think?   Well, actually, I think the whole system is beyond asinine, because the person I see the most can't be my 'primary care' and everybody else gets pissy over the fact that I want to see him so often, even though he's the only one who, you know, actually tries to help me by doing things?

As opposed to the lot of you who say things like "It's chronic illness and you'll just have to learn to adapt better" or "If you lose a couple of pounds that might go a long way" (it did not, by the way: I have felt no better at 150 than I did at 200, I was considerable worse at 165 than I was at either of those, so .... shove it?) and "with all these new problems cropping up, it's hard to know where to start with you, so I'm not comfortable doing anything." (Seriously: that last is an exact quote.  Too. Many. Things. Don't. Want. To. Help. With. Any. Of. Them. Screw You.)

So, I've got one more appt with her - my soon-to-be ex-PCP - next week, during which she will help with exactly zero things, probably google half of the things I tell her, and randomly search the network for test results that should have been back weeks ago, and then I have to hit the phones again.  For the ... third time in under five years?  With no guarantees that I can find anybody (in our state's primary care drought) that a) takes my non-insurance, b) understands about chronic illnesses in general, and mine specifically, c) understands that I need to see specialists pretty often and d) will not put up a fuss about Zach and his experiments, because I am not willing to stop experimenting.  

All of which makes me want to spend my time digging out my West Wing DVDs just so I can watch Sam & Toby and Josh and pretend I don't hate the world for a little while.

My Years of Magical Thinking...

And why I'm calling BS.


There's this idea out there - in the everyday world, in pop culture, in families the world over and sadly still in some medical circles - that you can believe yourself into being well (or that you somehow believed yourself into being sick in the first place).  That all that it takes is wanting to be better badly enough, purely enough, consciously enough, something enough for it to somehow "manifest" in your life.

The idea takes numerous forms - there's the curative power of prayer; the school of 'get up off your ass & do something about it, you whiners' (aka the bootstrappers); the 'but you've got nothing to be sad about/tired from/allergic to' zealots; a million symptom-specific diets; holy water & snake oil & pills made from coral only found in the shadow of the wreck of the Lusitania; and the ever adorable 'Oh we all get headaches/sad/tired sometimes, but you don't see me sitting around complaining about it' crowd.  Those are just a few off the top of my head - there's probably a thousand more we could come up with together (Feel free to leave your gravest offenders in the comments!) but they all have one thing in common - they take a person's illness or disability and make it not a medical condition, or a failure of society to accommodate the needs of that person - but a personal failing on the part of the individual.  They all nullify our personal (individual & cumulative) issues and needs and turn them into something we're doing wrong or not well enough.  And I say bullshit. 

This sort of blame, grounded in magical thinking, shows itself in everything from the rantings of politicians about benefit scroungers, to the old woman in the parking lot who yells at me for being too young to need a handicapped parking spot, to my super-crunchy sister explaining to me that all illness is rooted in "past personal traumas" and "touch therapy" might be the answer for me.  It shows in personal stories of achievement - converts of former patients who swear by whatever method happened to work for them, and preach about it now as if it were the One True Word.  I'm happy for them, truly, but can't get over the amount of gall it would take to assume that what worked for you and your illness must, of course, then work for me (or the millions of others of us who share a disease).  Just because you started running marathons on a diet consisting solely of cough medicine and peach pits, does not mean it would work as well (or at all) for me.  Thanks for telling me about it, now carry on with your business. 

But it's never that simple - the fact that there is a peach pit & cough medicine cure out there, and I am not attempting it: that's unacceptable in society's eyes.  I should be doing everything I can to fight against my illnesses, even if it's contrary to common sense, defies the constraints of financial, emotional or physical realities, &/or is the least likely antidote to whatever ails me & in fact, would make my problem a million times worse.  Society gets to pick if I'm trying hard enough, and {Spoiler Alert} I never will be!!

-----

I was 15 when I first got sick, nowhere near done figuring out what kind of person I wanted to be when I grew up, and everything I thought I  knew about my world & who I was just... ended.  I wasn't smart anymore, because I would sleep through my classes, and the time I should be doing homework, and miss weeks of school at a time. I wasn't a dancer anymore: after months and months of missing them, on days I could drag myself there, I would go to the one dance class I thought I could manage, do a half-ass job and then curl up in the corner on the gymnastics mats to go to sleep.  I'd gone from teaching three days a week & taking my own classes to barely limping through the basic warm-up at the barre.  

But no one told me to stop: My doctors said I was very sick, but that I "shouldn't give in", that I should "Do what (I) can." To a fifteen-year-old (well, to fifteen-year-old me, anyways) that was like a challenge - "go until you can't go anymore."  And that's exactly what I did: I worked so hard at school (even when I was homeschooling) that when summer came around, I was bedridden.  I still can't watch the show tape from that last year, when I lost out on my first solo and instead hobbled through the one number in the recital I had to nearly kill myself dancing through.  Afterwards, laying in the wings, waiting for my heartbeat to slow and my vision to come back (looking back it's likely my POTS/NMH issues were a problem even then), I thought to myself: "Well, was that worth dying for?" 

But I didn't stop pushing, because everybody told me I shouldn't.  My family constantly told me that I just had to keep trying, my teachers said that "surely, someone as smart as you can figure out how to beat this," my friends nagged that I'd been sick long enough, already, hadn't I?  I know that they were trying to be encouraging, but it was the only message I heard, that I had to battle, until I won. That it would be like giving up, to say that I might have to live with this illness instead of fighting against it. The doctors made sure I knew that if I started to "act like I was sick" I would only get worse: "Don't give in," they would tell me, "keep fighting."  So I did.  For (as it turned out, way too many) years.

My parents, armed with the same doctor's advice - "don't let her give into it, because then she could be sick forever"- were as ill-equipped to deal with our new situation as I was.  Never mind that I was sick right then and that might have been important to deal with.  Nope, the now was always about the fight,  and so we spent a good portion of what was left of my teenage years fighting against the CFS, and often against each other, when it seemed to them that I was "giving in" to it:  When it got to the point that I couldn't eat, and I lost about 35 pounds like it was water weight, I can remember having screaming matches with my dad at the table where he would say such helpful things as "JUST PUT IT IN YOUR MOUTH AND EAT IT FOR CHRIST'S SAKE!!!" and I just... couldn't.  It tasted like ash - everything did - and burned all the way down, where it would sit, heavy as winter boots until my belly revolted and back up it came. I would cry and he would yell that I was making myself sicker, with the crying.   Or being in the car on the receiving end of glares from my siblings, when they all wanted to go someplace and I was too exhausted to move, let alone get out of the car again, and my sister closing the door, rolling her eyes and saying "Well, I guess, if you're going to be that "sick", we'll all just stop having fun now" as we drove home.

We didn't know, is my point: Nobody gave me - or them - the skills. Maybe, with something like an aggressive cancer, the doctors would've been right on target - 'fight back, till its gone: take no prisoners, grant no quarter!'  But I had something nobody knew what to with, a chronic illness with no known treatment, cause, cure. And so their advice was way off the mark. It was like I was diagnosed with CFS (and later Fibro & POTS & now the diabetes, not to mention the 14 other things in between and the one big question mark they're all still looking for as the Holy Grail) and instead of a treatment plan, with meds to take and dos and don'ts to follow, all they told me is "You have it, but pretend you don't, as much as is possible."  And that was some damn bad advice.

It was wrong and dangerous, and it could've been - on more than one occasion for me- deadly.  (Turns out ignoring pneumonia is potentially a bad thing: who knew?)

That's why this fallacy of magical thinking gets me so upset - because it took a fifteen-year-old girl who could have learned the skills she needed to manage a chronic illness and continue to live a full (if different) life, and left her helpless, terrified and vulnerable. And blaming herself.  

-----

So, I didn't have the skills, or the treatment plan, or the answers, but everybody kept telling me that they were out there: keep trying till you find The Cure. So I tried all the crazy shit that you think you are not desperate enough to go near: pills with high price tags and exorbitant claims; cleansings and energy work and fasting rituals; diets and doing an hour of PT every Friday that takes you until Thursday to recover from; pushing yourself way beyond what your body is actually capable of.  The doctors might roll their eyes at my latest endeavor, or be all for it -"couldn't hurt" I had more than one of them tell me, even though they were 100% wrong-  but they didn't have anything better to offer, so it was up to me to follow the magical thinking train as far as it would take me.

It goes pretty far, you know: you work so hard at convincing yourself that you're getting better, while your hospitalization rate soars and your immune system falters.  You can laugh with the doctors about that "last bit of voodoo you tried" all the while you're planning how you'll scrape up the money for your next.  You can fuel that train with all of the self-hatred you accumulate when people tell you that you're just being lazy, or that you're faking, or that if you really, really tried, you could do it.  (That's a never ending, renewable resource right there: look, I fixed the economy!)

But in the end, it didn't matter how often I thought maybe this pill was helping or that I just had to make it through the next 14 sessions and the acupuncture would clear everything up.  In the end, I was sicker than when I started, discouraged at myself for failing and certain that if I just tried hard enough, like everybody said, I could beat this thing.  

---

There's a lot of maybes about my illnesses - maybe if I'd never gotten the mono, it wouldn't have switched on whatever self destruct sequence is probably hiding in my genetic code, or maybe if I'd gone to see a specialist right away s/he would've recognized the problem before it spiraled into today's current chaos. Maybe X or maybe Y. I don't know about any of that.

But there's one certainty about the whole mess: It could've been better.  My experience did not have to be as hellish as it often was.  It didn't have to be as isolating, and full of blame as it was: Because everybody - from my teachers to my sisters to my grandmother who couldn't understand why I'd cry when she suggested I go to a faith healer - blamed me at some point.  I'm not saying it would've been a land of rainbows and puppies - hell I don't buy into magical thinking now, and my life is certainly pretty puppy-less - but it could've been better than what it was.

And that's where society and medicine and the world with all of it's "The power of the Secret of thinking with your wholeheart and wanting it with your entire being" bullshit failed 15-year-old me, and 32-year-old me, and the 3-year-old with learning disabilities that I used to tutor, and my sister who has depression, and basically every disability activist I've ever met; and every person with a disability, and their families and my parents, and, well, the whole world, honestly.  It isn't enough to wish it away - that wishes us away, too.  It doesn't honor who we are to be told that we're just not doing enough to be well, or that we worried ourselves into being sick, or that if I looked on the bright side more often, I would somehow no longer be allergic to all of the contents of the natural world.  It's bullshit is what it is, and I'm going to call you on it, now that I know it for lies.

----

It wasn't until I got to college and started meeting other people with disabilities and allies and advocates and started paying attention to the people who said: "Listen, it might get better: You never know, you might wake up tomorrow and be healed and awesome.  But there are ways to make today easier to live through, to be awesome with a chronic illness, and one of them is NOT FIGHTING quite so much.  It's accepting that you're sick.  You're a sick person, a disabled person, and ... you know what?  That's fine, too.  You're not lesser, or weaker, or anything negative because you're sick.  You're just sick.  It's a part of who you are, and you need to deal with it, because this fighting with it is just making everything worse." 

I cringe to remember my Freshman self, saying to a professor that I was "Not disabled: just temporarily out of service."   She was polite enough not to say anything, but I want to go back and punch myself in the face for that flippant nonsense: I really thought that not claiming part of myself would be beneficial?  For who?  Was it supposed to be funny? It seems absurd and sad now - I don't even know. I do know that when I finally made myself face the fact that all of this magical thinking was getting me nowhere, was in fact hurting more than it was helping, it was devastating to me: Not being able to cure myself, I must instead of course be a complete failure.  (It was this all or nothing attitude that really helped my depression stay around as long as it did, unfortunately.) There was no middle ground for me, and realizing that people were wrong and I wasn't going to be able to think myself better?  That all the pushing my body through shit was actually making things worse?  It was like stepping out into empty air yet again - I had no idea what could be next for me, if everything I knew how to do - if fighting & believing that it could all just magically go away one day - was wrong.

But once I got past that, once I accepted that truth, I learned so many ways to make my life better, to make it more meaningful, to work towards not just marking time until I got better, but living through that time, because this is my life now.  It's a life with chronic illness, and yeah, I'd rather it wasn't, but wishing doesn't make it so, so get to living & dealing with it, because it's a part of my life, but it's not all that I am.


And that's a truth I worked long and hard to find - and it still takes some work to remember that it applies to me - that there's societal constructs at work behind my feeling of just not doing enough to fix myself, and that I'm not really a lazy, layabout who'd rather play on the Internet all day then get a real job. That 16 doctors appointments in the space of three weeks is more than enough, even if they're not giving me the answers I need.  That eating french toast today instead of a salad like every other day, and is not the reason I'll obviously never get better.  To remember that there are reasonable levels of self-care and coping strategies, and then there's just plain false hope.    

And the idea that I might have gotten to that point so much sooner if somebody had been around to say to me "Magical thinking isn't going to cut it. There may a cure out there, but it's probably not going to be found in this guy's car trunk." (True story) "And as far as I can tell, there's nobody around to provide you with a deus ex machina, so get to living with this instead of waiting for it to get gone."  

But that's why I talk about magical cures when they pop up in what I'm reading or watching.  It's why I get into arguments with the people in my life who dole out advice on seaweed pills along with our shared breakfast. And it's why I'll keep talking about it here. Because somewhere there's a fifteen-year-old girl, with an illness she did nothing to cause and she can do nothing to get rid of.  And she deserves to hear the truth. Not the fluffy, Secret-based philosophy of pseudo-cures and self-blame.  But the facts: That chronic illness & disability are just another part of life, and you can deal with them, and treat them, and live with them, and even thrive with them - to the best of your ability - but you can't, not ever, think your way out of them.


 *Welcome to all the Blogging Against Disability Day readers - I know there's a million great posts to be read, so I really appreciate it if you made it all the way through that!  If you're one of my regular readers, please head over to the Goldfish's place, and read some of the other excellent BADD posts: I promise, you'll learn a lot.*

Oh goodness (AKA here are some parenthesis that I think you'd find interesting)

So ~ how was your December?  Eventful, I'm sure.  Mine, as well. 

In lots of good ways (holidays, Grandmother getting discharged from rehab, lots of sleepovers, etc, etc) and lots of not so good ways (pretty much that exact same list, plus all of the illness-y issues myself and others were kind enough to contribute) as well.

I took a bit of an unscheduled break there, for a little bit, but only because... well I didn't have any brain cells, energy atoms, or unattended moments to spare.  (Did you know that your inbox will stop receiving e-mails after a certain number?  Or that Google Readers could - not literally - overflow?  Or that the entirety of the world wide web would continue without you?  Now you do!)  Not because I didn't have posts I planned to write (and composed on during my daily drives out to/back from the rehab), or because I needed a break after NaBloPoMo (quite the opposite, actually: I was pretty psyched to keep going), but just because there was none of me leftover to sit and type with, at least not at an appropriate time, anyways (as in, when I was near the computer).  So, unscheduled blog break, it is.

Yesterday was our first full day without any extra people (people I love dearly, but now it is so! quiet!) in the house since Christmas, and I spent it at Grandmothers, trying to make sure she had what she needed (a little dose of "sanity", and a sponge bath care of Mum) and chatting about relatives I never knew, some apparent candidates for sainthood and others surely roasting in the fires of (imaginary) hell.  I am still trying to decide if it would be better if I packed up & moved in over there for a little bit, but it's an impossibly difficult decision for a million (totally overwhelming to only me) reasons, and I'm just doing the best I can to be in both places (often at once) for now... that might have to change soon, I don't know.  And today I was back over there to monitor her PT while my uncle drove SisterK to the airport to head back to Iowa, plus my mom had to have a liver biopsy (as follow up to her stint in the hospital), and then I came home just in time to be scolded by no less than 4 people (for completely ridiculous/arbitrary/WTF-ish reasons), and it's been a wonderful sort of day.

In other words, things are SNAFU( Situation Normal, All Fucked Up) here in NTE-land.

BUT: I am going to start eeking out some writing time, because I'm doing that 'my brain is a ticking time bomb' thing again, and that's not good for anybody.  (ANYBODY)  In the meantime, Happy New Year, everybody... have we decided yet if we're hoping for the Global Thermonuclear Zombiepocalypse this year, or not?  Cuz I'm still kind of on the fence. (Ok, not really.  But I might be, if I have to watch any more Republican debates/caucus/still in existence crap.) 

"My first language was shy"*

Day 11: Something you never get compliments on

I'm a little confused about this topic - I wonder if it's supposed to be something that I am so bad at that nobody would ever compliment me on it (in which case, it would be a gigantically long list), or something that I think I am good at but don't feel I get enough credit for.

I'm going to take the less-easy route here, and go with my second option.

I feel like I do not get enough credit - or hardly ever get complimented on - my ability to get past my natural shyness and actually say words.

If you say you are a blogger, people automatically think that means you're not shy: You're putting yourself - or your words, or your product - out for the public to see, so shyness must not apply. Certainly a blogger cannot be timid. But, oh, how timid I really feel, and oh, how much the term "shy" applies to me.

I have, in point of fact, been told that I am not actually shy - although why other people should think they're a better judge of how I feel about interacting with outsiders than I do, I can't imagine. If I talk about my anxiety level in dealing with groups of people, or the fact that if I were going to a party I would prepare little conversations in my head so that I could have something to say if someone dared to talk to me, it has always been received with surprise: "But you're not shy!" they say "You talk to everybody/ You're always doing something/ You always give your opinion on anything we're talking about!"

Right - That's partially true. I do go out of my way to do those things, to make myself open my mouth, but my natural inclination? The reason I always find a task to do or a specific person to latch on to? Is because otherwise I would be almost frozen with fear that nobody would even notice I am there. Or because I would be so scared that I would be stuck on the periphery of whatever is going on and that someone might notice me. And they might ask me a question to which I have no answer.


Here, on my (mostly) anonymous own blog page, words come pretty easily to me: I say what I want to say, hold back very little, and only occasionally find myself worried about the reaction to what I say might be. Even so, I have to consciously make the decision to get over an almost stupefying fear every time I sit here and open up that post screen.

That I am able to do so is - I think - mostly because of the very small audience I actually have. My considerate and loyal readers are awesome, no doubt. But, let's not fool ourselves, there are so few of you that I can not be intimidated by what your reaction will be to what I type. If we disagree, there will be no attacking mob - you and I will figure it out, I doubt there will be any marching off in huffs. In the rare instances that there have been commenters who really disagreed with what I was saying (like one comment on a long ago post about disability rights where I mentioned that having pets was essentially you telling me that I was not welcome at your house, and the pet owning-commenter vehemently disagreed that this was rude or inconsiderate in anyway), it has stuck in my mind and I have considered it again and again.

Here in our own tiny world, I also tend to forget that what I say isn't really a secret between us, but something that ANYBODY can see: I absolutely have to forget this when I am writing (did not even want to type the words right now), or else I would immediately be forced (by my fear of ... IDK being seen, or not being seen or something!) to shut down the site. When, for example, the comic book world suddenly started to come peeking in on what I had written about Oracle, I was both flattered and horribly frightened... You mean people can SEE ME???

It made me really consider what the hell I was doing, putting all my thoughts out here for all the world to read like that. Someone might think I was ... wrong. Or stupid. Or they might... gasp.. get clued in on the fact that I don't know everything in the entire world! This could be disastrous!!!

But I swallowed back my anxiety, and I took some time (ok, a lot longer than I would have liked, but I ain't perfect) to realize that putting myself out here in public like this is not going to be the end of the world - I have been doing it for five years now, and some people actually like the real me, so isn't it worth it to take the chance and keep clickety clacking all these little words and posts out?

In real life, my shyness/social anxiety/ awkwardness is even worse: There are no first drafts! There's no walking away if you've made an error (like forgetting somebody's name)! There's no "I will just read this, and then click away if I am uncomfortable or if people are being rude or if it is overwhelming"!

In other words, the real world, with all it's reality, is horrible for shy people.
Or, at the very least, for this shy person.

And it's not just because I am so physically different than everybody else in the room, because I know that I was shy even before I got sick, but it's so much worse now, because I can not melt into the background in a chair that makes as much noise as a team of horses, or when I have to ask extra questions about what we're eating (so that it doesn't make me sick) or when I have to excuse myself from the room because your perfume is making me nauseous: None of those things enable me to be discreet and low-key! And now people are looking at me, and Holy Crap that girl is totally going to talk to me, why isn't there a corner I can hide in!

I sometimes think that getting sick (or having a disability) and being shy are just not compatible, because there's so much extra work you have to do if you have a disability. So much more attention that you don't have a choice about receiving.

But, it's also one of the things that helps me overcome my shyness - finding the disability blogosphere is one of the most rewarding things I've ever done, and one of the places I feel most comfortable, and most willing to participate in group experiences (blog carnivals - who would have ever imagined?) And presenting my thesis on disability and children's literature in front of a group of my peers (gah!) led me to leading teacher's workshops about disability in classrooms and helped me to feel like I knew what I was talking about and that I had a valid perspective that deserved to be listened to.

But the shyness is still there, the anxiety is ever present anytime I leave the house or open up a blank page. (I think the only time I am not shy is with kids: Hello, Kindergarten teacher much?) I fill up silences with words, in the hopes that other people won't notice I'm so uncomfortable I want to run away. I do battle with the verbal bullies of my family at gatherings, baiting them and then stepping away, because I know they're full of hot air, and that if people are paying attention to them, then they are not paying attention to me. I seek out the rooms where the kids are playing, and designate myself as in charge. I find a corner and park myself in it, and then hope against hope that somebody will care enough to wander over, and that, when they do, I'll be able to participate without showing the bashfulness that might overtake me at anytime.

So it may be that my shyness hiding skills are so advanced that people don't notice them (I'm a shyness ninja!), but that's something I don't get a lot of compliments on, beating back that almost constant inclination to just sit and not say a word, because what if that makes somebody look at me, holy crap! and actually put myself - in words or in physical space - out there.

And it's damn hard, I'll tell you that.

*Al Pacino

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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

30 Days of Truth, Day 01

So here's my first official 30 Days of Truth post, which I found via more than one blog, but I'll search my Google Reader and post a few links, if you'd like. I'm sure you've seen them around, and some of the more stellar responses have gotten me to start thinking on the topics as well, so I figured - good topics? check; guaranteed NaBloPoMo posts everyday? Check; Deep thoughts? Also check. So here we are.

Day 01: Something you hate about yourself

Ugh. I feel like this list could go on forever and ever, and I hate that, for sure: that I'm not more happy with who I am or how I look or more comfortable in my own skin. Whenever I'm reading a book and a character is described just that way - "You could tell she was comfortable in her own skin" - I always think "But how? How did she get comfortable just being who she was? How is that even possible?"

I know it must be possible - I think I know enough people that are just who they are and that's that to know it is possible. But it seems like something that's possible for other people . Not for me. Maybe, some day. But if I'm being honest, I don't really think so. I don't really believe that I'll ever just be happy with how I look, or how I act. Or -if not happy, exactly - but happy enough.

Happy enough not to hate that I need to ask for help for things that I "should be" capable of doing. Happy enough not to hate that I can't drive myself (or walk myself) from point A to point B and have to depend on other people all the time. Happy enough to not hate the way I cry when I'm arguing with someone and how weak it makes me feel. Happy enough not to want to burn the piles down around me rather than hate how I procrastinate dealing with them.

Happy enough not to cringe when I see myself in the mirror in the morning. This is a new one for me, mostly because, at my house, what few mirrors we have are all at standing up person's eye level. If I want to look in the mirror, I have to make an extra effort, so I don't often look in the mirror unless there's a reason for it. But here at Grandmother's house there is a huge honking mirror in the little bathroom. I'm talking about an entire wall's worth of vanity mirror, so that if you were standing in the middle of the bathroom floor and stretched your arms out to the side to touch the walls (which you can do because that's exactly how small the bathroom is), you'd be able to see the whole thing in the mirrors. Which also means that you can see yourself from just about anywhere, including sitting down. And this is the only bathroom I have access to, and so, when I roll in there first thing in the morning, I see myself.

And I find that I am often not pleased with how I look. I even thought "holy crap: that's what you look like today. Ew" the other day. "Ew." Was an actual thought I had about myself, and it made me realize how harshly I judge my physical appearance. It's been on my mind ever since.

I knew I had issues with my weight - being on steroids and the Lyrica and god knows how many other drugs has definitely screwed with my poundage - but it usually only bothers me when I have to go shopping for something nice and nothing nice fits over my boobs. Or when I'm in a group picture - particularly one with all my sisters, and I realize I could put three of them together to equal me (almost, anyways). But, for the most part, it doesn't enter my mind - the good thing about having a body where you have to be measuring things against pain or exhaustion or sick levels in matter of importance is that you realize that being heavy does not equal the end of the world. Sure I'm a little bigger than I'd like to be, comfortably, but it doesn't physically hurt, so it moves way down on the list of things that concern me on a day to day basis.

It hardly ever even makes it onto the list, to be honest with you. I'm not generally embarassed by it and see no reason why I, or anyone else, should be - so it worries me that I can think so poorly about my appearance.

And it's not just the weight - it's the stuff I don't have the energy to devote to fixing: I'm lucky if I ran a comb through my hair twice last week (clip it up and be done with it is my usual motto), I don't wear makeup (although I could often use it) or nice clothes (nice and comfortable are apparently fashion's version of oil and water). I look... tired. And worn out.

And - even though I am tired and sore and worn out - I hate that I look that way. And I hate that it matters to me how I look at all, because if you had asked me a month ago, when I wasn't having to face myself in the mirror every day, I would've said it didn't bother me at all. I don't want it to bother me at all.

So I'm trying to look myself in the mirror now and think at least one positive thing, even if it's just "Look, you made it all the way in here, and you didn't think you were going to get this far today, so that's something" or "You have your mother's eyes, you know, so if you can't say those aren't pretty because she has gorgeous eyes. It's ok that they're tired today, they're still her eyes." Or - as was the case one day last week - "We are not leaving this room until you can think of something nice to say to yourself, you stubborn ass. Because if Lil Girl looked at herself in the mirror and thought "ew," even once, your heart would break, and the least you can do is figure out how to make the same be true for yourself."

I hate that I haven't figured it all out yet, I guess is what I'm saying.

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

I am attempting

to write a letter of recommendation for SisterCh, in regards to an apartment she and her fiance are hoping to rent. It is tricky to do.

Particularly if I want to be honest. (It's a good thing I have my BS, because I have learned the art of putting a kernel of truth in the best possible light.)

All the advice says things like "tell how reliable she is, that she pays her bills on time." But I can't say that I have any experience of that personally - she doesn't pay rent here, and only just paid off the money she borrowed from me for SisterJ's wedding (yeah, that's nearly 2 years and various weekend vacations for her later). But, I do know that she paid her rent on time and in full when she lived in a condo before, so I can say that.

I am absolutely able to rave about her turning a temp position that was only supposed to last 6 months into a full-time position with full benefits and a raise 3 years later. I am immensely proud of her for that, and I know that she deserves a lot of kudos for it, so that definitely goes in. (2 paragraphs down, one to two more to go).

Next advice: "Discuss how neighborly she is" Um Yeah - Roadblock. See, SisterCh and I have a long and complicated history of her being particularly unneighborly, in my opinion.

I have a lot of needs that other people have to take into consideration, and SisterCh has not always understood, embraced, or really cared about that. She's been the hardest of my siblings to educate about my condition, hands down. Mostly, I think, because she was really young when I got sick, and I'm pretty sure she has a lot of resentment about how much of our parents' (mostly our mom's) attention I managed to siphon off by being, you know, nearly dead. I know part of her is still very much in the whole "suck it up"/"get over it already" camp, and her dismissive attitude has been incredibly hurtful to me for years.

Which isn't to say she hasn't improved. Because, in a lot of ways, she has: the smell thing is still a battle occasionally, but it's not a daily battle, it's not the constant me being trapped in my room until an hour after she leaves for work nonsense that it used to be. She may still roll her eyes when I say something is bothering me, but we don't scream and shout about it as much as we used to. We've both gotten a lot better at walking away before our feelings get too trampled (mostly).

Nowadays, she sends me e-mails when she finds unscented lip glosses, offers to share her work discount with me when I tell her I'm searching for a new computer, or posts a link to some FM article where they talk about vitamins (:sigh: on that last one, but at least she's trying). And she nearly decked a waitress last week when she patted me on the back, so that's a plus.

So, yeah, she's growing up. We both are, and it's helping us.

She's also taking responsibility for her fiance's kids, and I think that, in the process, she's getting to be more mature & understanding, and I hope that our relationship will continue to improve as we both get older, but she's still the same girl who told me I was a selfish bitch because I needed her to stop spraying her perfume in the house. She's still the same girl who rolls her eyes when I say she doesn't understand how lucky she is to not have to worry about whether or not a ride in the car will make her head spin for the next three days, or complains when I open the window to air out a (freezing but) smelly house. Or who stops speaking to her sister without even realizing that the thing they are 'fighting' about is not the end of the world.

Which is why you shouldn't ask your sister to write a letter of recommendation for you, I think. Because sisters' relationships are too complex. Because being her sister means I would kill for her, but sometimes I can't stand to be in the same room as her.

I could write about how much I love her, and how proud I am of her, and how brave I think she was the time she stood up to our dad and told him to fuck off (he really deserved it), but I don't think that that will get her the apartment, really. I could write about how she and SisterJ used to be thick as thieves (actual, literal thieves who stole all my good toys when they thought I wasn't looking), but now they just can't figure out how to speak the same language & that it hurts my heart, but that also doesn't really seem like what they are looking for.

So, instead, I'll write things like "In her previous living spaces, she took pride in maintaining a lovely home, always managing to keep her areas clean and tidy." Which, if you cold see her room right now, would seem like an outright LIE, but I know that when she lived in the condo, she was impeccable, so it technically isn't - I did say "previous" living spaces.

Back to work, trying to make 24 years of sisterhood & obsessive love (Do you think it would help if I mentioned how, when she was a little girl, she was really shy and I lugged her around on my hip for the better part of three years? Nah, I didn't think so either.) sound totally positive and not at all twisty and complex.

She is your mirror, shining back at you with a world of possibilities. She is your witness, who sees you at your worst and best, and loves you anyway. She is your partner in crime, your midnight companion, someone who knows when you are smiling, even in the dark. She is your teacher, your defense attorney, your personal press agent, even your shrink. Some days, she's the reason you wish you were an only child.   Barbara Alpert

Being the guy (or in my case, the girl)

Lately I've been thinking of people's impressions of me, and my impressions of them, and how we all look at things so differently.

I stumbled across - in a completely random way - a person I know IRL's blog. And there was some stuff on there that I didn't know, that she hadn't shared, that I couldn't grasp through the random e-mails we exchange every six months. And I felt like the worst person alive.

As if I just will never be able to care about the people in my life the way they need me to care about them - the physical caring, the being there when things are falling to shit, the person who comes at the moment's notice. And, of course, that's who I most want to be.

There's a West Wing quote that I had up on my header for a long time, and it's just about the only quote I get right every time without having to look it up. That's because it was me they were talking about. The President says to Josh Lyman (a leader among men): "You want to know the difference between you and me? I want to be the guy. You want to be the guy the guy counts on."

I want to be the girl everyone counts on, and more often than not, I fall way, way short.

Reading this person's blog only really brought it home to me that for every birthday card I send or job interview I remember, for every "how are things there" e-mail I send or picture I make an extra copy of, there's a million everyday mishaps, disasters and heartbreaks that people can't turn to me for.

That because I suck at picking up the phone, and because I'm so often sick and wrapped up in what's wrong with me, and because it's such a god-damn struggle for me to drag myself through most of my days that I barely have enough energy to turn the damn television on and shut my brain off, that I am missing out on people's lives. The people I love's lives.

And that's somehow worse to me than the fact that I am missing out on my own life a lot of the time.

Which brings me to something else I've been reading lately that made me look at who I am a little bit differently. Facebook.

No, it's not the god-awful pictures my sisters choose to post or the fact that I rarely have anything interesting enough to post as a status update ("Am sore. And tired. And not sleeping, yet again." Yawn.): It's the status updates of some old friends who, not so much tracked me down as happened upon & friended me. These were the group of friends that, at one time, I felt closer to than my own family.

From ages 3-15 I was a dancer, and from 12-15, a dance instructor, at a local, neighborhood dance studio. It was a place where I felt comfortable, where I felt like I could be myself, where I felt accepted for the awkwardly geeky, musical loving, knows she wants to be a teacher even though she's twelve me that most of my world considered strange and annoying.

I danced non-stop during the week: three weekdays, every Saturday morning, practicing at home, rehearsing at other girls' houses, saving up for competitions and conventions and trying to make my body realize that it was made to jump higher, stretch further, move more gracefully. I was hardly ever uncomfortable there because I knew I could dance: I was long and not-exactly lean (the boobs, man, they grew early), and I couldn't jump the way some of the other girls could, and my ankles (after I broke and fractured them enough times) wouldn't let me en pointe any longer, but I was queen of kicks, and I could point my toe longer, stretch my legs straighter than most of the other girls, and I loved that I could fold my body in halves and thirds and back again.

When I joined the dance company, I knew I'd made it, that I was one of the best. When I was asked to be an aide, and then an instructor, I was beyond thrilled. I wore my purple leotard (the studio color) with pride and I took my responsibility as a teacher seriously: I showed up on my days off to help with other classes, to wash the glass mirrors, to set up for special events. I took vacations with the other teachers, babysat for the studio owner's kids, went to pool parties and on sleepovers. We formed a group of girls that I would practice with, that would watch old routines with me to help choreograph new ones, and I made what I thought were four true friends.

And then I got really, really sick. Those first three weeks, I couldn't roll out of bed for anything - not school, not dance, not food - and I called in sick and they all covered my classes without argument, hoping I'd feel better soon, being as upset as I was that I'd missed a meet. The owner told me not to worry, that my spot would be there when I recuperated.

Only I never did.

After that first month (October, if you're wondering), which the doctors think now was my 'initial infectious agent' (most likely mono), I lost a lot of weight, I lost a lot of ground with my schoolwork, I lost the sympathy and understanding of my family and teachers, and I lost a lot of friends.

Including my dancing friends. Who tried - for a while, they sent me cards and called to find out how I was doing. They told all my students how much I missed them, and told me how much the students missed me. They would ask my sister how I was feeling, tap my cousin for any new info.

Eventually I dragged myself back to the studio, only to lay on the mats, unable to breathe or move. I would pass out mid-pirouette, I would have to leave class to throw up (in the bathroom right next to the classroom, where everyone could hear), I would make it through the warm up and be too exhausted to actually dance. My vertigo got worse, the POTS got worse, and I know now that I actually made everything else worse because I ignored every.single.signal my body was giving me in order to keep dancing.

I didn't know that then. I didn't know what any of these things were - I had the CFS label, but none of the doctors could tell me what the hell that meant. None of them had any idea how long it could last, and more than half of them thought that I should just keep 'pushing' myself, because exercise makes you strong and giving in makes you weak. (Douchebags.)

The girls I was closest to were vaguely supportive - they kept me company on the mats while they changed their shoes for the next class - but they didn't understand it any better than I did. Part of it was the rumors that were going around about me - drugs, pregnancy, eating disorders - and I think now, looking back, that a lot of them were afraid - if I could get so sick, what was to stop it from happening to them? So they moved away from me - stopped calling to check in, stopped sending notes home with my sisters, just stopped - until we were so far apart that I couldn't figure out how to bridge the gap, and because I had so little energy, I didn't have any extra to try harder.

By June, I was out of school almost full time, but I was still pushing it at the studio. I was determined to be in the recital - after missing more classes than I can count, sitting and cheering from the sidelines at 2 competitions, paying for 3 conventions and having to sit them out as well. My mom had bought a costume for me - only one, instead of my regular 7 or 8 - and I was damn well going to dance. On stage. In it. And I did.

I nearly killed myself doing it - I laid down in the wings as I came off the stage, and had to be dragged/carried to the back room. Where I laid down for the rest of the show. At one point someone told the owner I'd had a heart attack and she came racing over to check on me. Good times. - But I did it. By then, it was mostly too late - the four girls I was closest with had moved on, bonded with my replacement over sleepovers and strategy meetings, and I was just the girl who couldn't dance anymore.

When September came around, I went so far as to register for classes, to drive out to the studio on the appointed day, only to sit in the car and break down, knowing that there was no possible way I could make it through the class. Mom was pretty pissed that I'd made her drive me out there, if I knew I was going to be able to do it, but here's the thing: Until I sat there, looking through the giant window at all of my friends at the barre bending and stretching and - fuck it - standing up? I didn't know. I couldn't let myself know. So we drove away, and I never went back.

And I've always been pretty hurt by how the other girls handled me getting sick - at what I felt (ok, still kind of feel) as their desertion. Because the only thing that had changed was that I got sick, and I couldn't help that. So, I've always looked back at those girls, most of them, with this mixture of pain and regret, with the sting of "they didn't care enough about me to stay close."

So having some of them friend me on Facebook has been an interesting experience. It's helped me realize that, yes: their abandonment of me was not ok, but I sort of abandoned them too - I just didn't have the energy to fight for our relationships, and so I just never came back. I never called any of them after that day I broke down in the car ~ I waited for them to call me, and was hurt when it never happened. But I could've done some of the lifting - made phone calls or sent letters (this was before I had e-mail, people: can you imagine??) - or just tried. But I didn't, because I was hurt and I was hurting, and I was sick and it seemed like no one cared.

And yes, I'm jealous now, that so many of them are still living the lives we'd planned for ourselves way back when - still dancing, still friends, still teaching, all mommies - but it's only because I want it for myself too, not because I don't want them to have it. I can wish them well when they open day cares and click the "like" button when they talk about how exhausting this week's dance class was. I can look at their photos of recitals that came after I left and be sad that I wasn't there, but still comment that they looked like they were having fun. I can congratulate them on their weddings and babies and engagements, and if I still feel a twinge of disappointment that we weren't able to do it all together, well, that's human.

But it the two experiences together - seeing how I can still feel joy for the people I felt have let me down so badly and seeing how badly I feel for letting the people I love down - have made me think a lot.

Not that I've come up with any answers, which is the least you deserve for making it through such a long winded post that really probably only makes sense to me.

But I haven't got any.

Just that I want to do better, to be better, but I don't know how to manage it. Which basically sums up every other single post I've ever written, so there you go.

“As our society grows more and more health-conscious, good health, too, becomes a virtue, and its absence a vice.*”

I used to be one of those people who watched a lot of nothing type shows - the gossipy ones that run between 6 and 8 - simply because there was nothing good on and I was too tired/sore/sick/whatever to even think about doing anything besides watching TV. At some point, though, those shows just crossed my own personal lines from 'I certainly don't need this information, but it's kind of fun and random to know stuff like whose birthday it is or when I can expect the newest version of Star Trek to hit the local theater' to full out 'I wish I didn't know these things. I don't know why they have to be so mean. I really should stop watching these shows, because it's just upsetting how often they call skinny girls fat or pretty girls ugly or question whether or not someone is gay.' I would end the shows feeling so much worse about the world in general that I just decided to not watch them anymore (Thank you, Tivo for saving me from the wasteland that is the 6-8 time slot in our neck of the woods.)

The worst offender in the Access Entertainment Inside Hollywood Edition Tonight millieu was the most recent (at least to me) addition: TMZ. Not only did they make every slightly positive story seem sarcastic and unnecessary, they were often offensive, rude, and it seemed to me there was even less actual 'reporting' than most of those type of shows require. As if any day's story could be "Based on the information we got from a local coffee barista..." or "You know, my 14 year old nephew has a hunch that..." Perhaps that is a slight exaggeration, but you get the point: I just didn't like the show. Not my thing, no big deal... I know how to change the channel. If you enjoy it, good for you: we'll agree to disagree.

All of this is just to preface that, had I known that the link on AOL was pointing to a TMZ story, I would not have clicked on it in the first place. But also, it serves as a reminder to my own damn self that, having clicked on the link and found out it was TMZ, I should immediately have closed it and NOT KEPT READING.

Of course, if I had closed the tab, I never would've been able to enjoy the wonderful - and supportive - comments of the TMZ commenters. Which, while that might have been nice, and helpful in my efforts to remain sane, would also have created a world in which I do not want to viciously punch people that I have never met, because of their Temporarily Able Bodied prejudice against people with disabilities. Yes, yes: I agree, we all would've been better off.

But I didn't close the tab, which means I got to read such beauties as -

Americans w/Disabilities Act= another lame, retarded (pun intended) law which wastes taxpayer money and opens the door further to ridiculous lawsuits which are further degenerating the judicial system.

I'm sorry you're so bitter and angry about being disabled but it's not all about you and your disability!! Idiots.

in regards to a story where two individuals with disabilities - both wheelchair users - are suing CBS studios because of the treatment they received during a recent Dancing with the Stars taping. (While DWTS is on ABC, it's filmed at CBS, FYI. Maybe I could put more acronyms in here, OMG.) The suit claims that there's no designated accessible seating, that the two disabled men were specifically placed out of cameras' sight lines, that one of the men was seated in a place where he could not see the show at all, and that a camera man threatened to 'run over' the one man's guide dog as it sat in the aisle. The men are suing for damages, and for permanent changes to CBS studio policy regarding their lack of compliance with ADA guidelines.

Ok, so what could the commenters be berating, you might wonder? A whole damn lot, it turns out. I know I've ranted before about Disablism/Ableism, but these commenters manage to use every ableist argument in the book - from "I'm not prejudiced but..." to "Disabled people all should die" - and so, another rant seems long overdue.

Matthew seems to think the suit makes sense, because

They have a disablity and they are different from the rest of us.

But he'd also like to note that

They are smart to not put people in the wheel chair in front of the camera, but the camera doesn't have record in that direction

. Good thinking, Matthew! Don't TELL them that discriminating against them, and it won't count! Moxy was more explicit in his/her condemnation of their attempts to be treated as all of the other audience members, however:

Why would anyone at home want to look at a couple of limb-less cripples in the audience?---TV is escapism, no one wants to see you guys (yes, I went there!).

Lil wants us to know that she's "all for equal rights"

but when they go and ask for damages sorry that is a clear indication that they just want to get paid. A true and honest fighter for equal rights does it for equal rights not for the big bucks.

There seemed to be a lot of commenters who shared Lil's low opinion, that the men should just fight out of a need to see justice done. That the changes would, of course, be forthcoming if they just reported the misconduct to the appropriate authorities. Because that is the way the world works for PWD, as we all are aware. It's just my cynical mind that thinks if they had just sued to change the studio's policy, there wouldn't be quite so much coverage of it, but that's just my warped mind.

Lil continues to make her position clear, stating that

Im so tired of people taking advantage of others in this case Im on both sides. These 2 should not have been treated this way but these 2 should also not be sending such a negative message " oh i didn't get to go in first? I wasn't treated as someone special? (that is not equal rights just so you know) well screw you im gonna sue you for some money.

That's right, Lil: it's not "equal rights" we want, we want to be "treated special." And by "special", of course, we mean things like being able to see the show we came (I had originally put 'paid' here, but turns out the tickets are free) to see, and not being threatened by the staff. How dare we??

More than one commenter echoed Hawks' opinion -

Well, gee - I guess everyone can't do everything and go everywhere

As if the two men should've known better than to try to venture out in public at all, because HELLO - They're disabled. Don't you know disabled people don't go anywhere??? (Or, at least, they shouldn't.)

Sarah thought it was important that we know

If I was disabled, I'd kill myself.

Not that she was suggesting that anyone else do that, of course, just that if it was her... But since these two gentlemen didn't have the good grace to kill themselves before attempting to attend a TV show taping, they decided instead to

probably file(d) this suit not so much about the way they were treated, as the fact that they got a little bitter about the fact that the closest the will come to dancing is throwing themselves on the floor and flopping around like fish

. I hadn't really thought about it that way before, explodingchicken: I'm sure you're right, and they deserve your disdain. They couldn't have simply wanted to enjoy the show like everydamnbody else, and, when they were prevented from doing so, been reasonably upset. No, that makes no sense. It's much more likely that they were jealous of the dancers, upset by their own conditions, ashamed and bitter about the lives they lead. We all know that the disabled life is not worth living, after all.

But you know what? Perhaps I'm taking this too seriously. I mean, after all, who cares about one little dancing show, one little incident? I don't happen to care about DWTS at all, and I never go to TMZ, so why does it even matter what a bunch of their commenters think?

It matters because there shouldn't be a NEED to sue, some 19 years after the ADA was passed, to get into a building that is seating the public. It should be automatic that there is seating available, in places were wheelchair users can access and enjoy the events. But it isn't. We are the public, just as much as anybody else, and that's why it matters.

It matters because these are the things that real people still, in 2009, think about disability, about PWD, and about our place in society. That we shouldn't watch shows about dancing if we can't dance the way they do (in which case, why are any of you TAB people watching - 99% of you couldn't do those moves if I offered you $1 million, now could you?) That we shouldn't complain if we're treated unfairly. That asking for fair and equal treatment is, in fact, only code for the special treatment we feel we're entitled to. That we're asking for more than our 'fair share' by asking for reasonable accommodations - after all, we do get those nifty parking spaces, as many a commenter reminded me. That since we have disabilities, we are automatically assumed to be unattractive ("they only put the ATTRACTIVE people on camera!")


That we need to be "put to sleep." (Thanks, Tru Conservative!)

And it matters because it isn't just a bunch of random internet assholes who think this way either: Even the New York Times was explaining this week that the lives of people with disabilities are different and just plain less.

Those aren't things that people used to think, or attitudes that used to exist: those are things people are saying about people with disabilities today, tonight, right now. And, yes, there were also a few posts by those who were appalled at these type of comments, those that seemed shocked that those attitudes still exist, those who stood up for PWD - whether they were disabled themselves or not. And that is wonderful, to have advocates, to have people who recognize all of the FAIL that is included in those comments.

But the advocates, the people who understood were far outnumbered by those who didn't. Who never tried. Who won't understand a word I'm writing in this post.

And if that's not scary, I don't know what is.



Title quote from The Chronic Illness Experience: Embracing the Imperfect Life, Cheri Register.

Everybody says

"Just call when you need help: I'll be there."

But it's not true. They won't, all. Or they'll come and not help, or they'll come and make things worse. Or they show up the first day, but they don't show up the next time. Or they just get sick of helping.

And that's one of the things that sucks most about having chronic, disabling illnesses: There are just some things that you can't do on your own.

So you ask for help, and you're supposed to be - you are, even - grateful for what you get. But it's not always what you need, you know. It certainly isn't always what you'd like.

Sometimes, it'd be nice not to have to ask. Sometimes, it'd be nice if people just put 2 and 2 together and realized it equaled 4 without you having to call and tell them so.

Sometimes it'd be nice if people just showed up, ready to work. And didn't fight with you about the work you needed them to do, or amongst themselves over who was doing the most work. If they didn't fall asleep in the middle of the job, or stop often to text their friends. If they were genuinely pleased to be able to help you out, instead of making you feel like the least capable adult of their acquaintance. If they showed up when they said they were going to, and stayed till the work was finished.

If they realized that asking for help is sometimes just as hard as giving it.

And while I do have a few people who've come and helped and don't make me regret asking, and a few people I probably could've asked that would've helped better, overall, this whole 'getting people to help you move' thing has been horrid.

Considering that my siblings often make promises they then fail to keep, I shouldn't be surprised, but I am.

This moving thing - it's a big deal. And yet, it's also not. It's not even the scariest thing that'll be happening in our family that day, so let's all just take some deep breaths and motor on through, shall we?

I stopped talking about the whole moving process here for a while because it was overwhelming me, really... I couldn't think about it one second more, so I used this place as an escape hatch, but it's been running our lives for months now. A year with the house on the market, 4 feverish months of searching every open house, and, now that we're down to our last week (!) here, it's all coming to a head: number of storage units (so far), 2; number of rooms empty, 0; days left till all rooms must be empty, 9.

We're not even halfway through this process - we've got to get the rest out, the new house --- we finally found one, thank the goddess --- cleaned and repaired and painted, and then move all of the stuff into the new house. And yet, 90% of our 'helpers' are petering out, everybody is cranky and tired and some are acting worse than the soon-to-be-3 year-old.

It's crazy and sad, and we all just want to be done with it, but we're not. And it's pissing me off that my some of my siblings, who have accumulated upwards of 13 moves in the past 16 years - all of which my mother helped with - don't see this as their responsibility too. Even the one that lives here seems to think it's optional. I know they each have their own lives, I know it's grueling work that nobody really wants to do, but I can promise you that once we're all moved in, there isn't a one of them who won't want to have dinner there on a summer Sunday.

And it'd be nice if they'd remember that this Sunday, and pitch in a little bit more, without making me feel like I've asked for the impossible.

:sigh:

Sorry, no MBSM

today, as I'm not in a "best of" anything sort of mood.

Instead, I'm allowing myself to feel sorry for myself, which is better than feeling angry at myself, which is where I was about 4 hours ago, so it can only get better from here.

Right?

No big deals or anything, just pouting because this newest, bestest, totally heavy-duty/take after major surgery pain med the doc put me on this weekend has been no more useful to me than taking Tic Tacs three times a day. Probably even less useful than Tic Tacs, because they've never made me itchy and never - even when I eat an entire tin at one sitting - made me nauseous either. Can't say that for this newest mega-drug.

It was only a three day trial course, but I feel like if they don't start inventing new drugs soon, I'm going to eventually - and not that distant in the future type of eventually - run out of options. And it's hard enough to keep up hope when there are other drugs still to try. When there's none? Yeah, I'm just not going to let myself think about that until - IF - I ever get there.

But I'm still going to let myself feel sorry that it wasn't this drug. That it wasn't this weekend. That it wasn't this answer.

Oh, boy, I don't know

I'm trying to figure out the right thing to do in a couple of different circumstances, and have come down with a bad case of the "well... maybes".

I do not like the "well ... maybes": being indecisive sucks. I hate it when other people can't make up their minds and commit to a freaking plan already, and I hate it even more when I'm the one holding up the works. Usually, like in these situations now, the hold up is a health issue... I just don't know whether or not I will be able to - or should - participate.

Scenario #1 is relatively nothing - tomorrow a bunch of my family members are going to check out the possible house, to make sure that there's nothing readily and obviously wrong with it that will take big bucks (bucks we don't have) to fix it. I'm supposed to go, but I'm on the fence: Do I put my energy here, when it's all still so hypothetical? My parents visited last weekend, and now they're calling for submissions, basically: "Help us make sure this place is OK." Which, ordinarily - fine: bring whomever you want, sounds great.... the more eyes the better. And I'd like my eyes to be involved... it's just that there are two steps up to get in (which, obviously, we'd address if we bought it), and then there's all the questions - odors, pets, etc. And to I absolutely need to go? And maybe I'm just being overly sensitive because of Scenario #2 ...

Scenario #2 is much more important. My cousin Kate is having a baby shower, at her parents house, in March. We got our invitations this week, and I asked her big brother about the accessibility of the house (since I've never been): he says there's steps, but that he talked to his dad and he's going to see about a ramp for the few steps in the front of the house. OK, that's not making me wicked comfortable, but it all may be moot because there's also a cat. A cat. Ordinarily? A cat automatically equals, 'I'm sorry, but I can't come," but the cat is a basement cat, and lives not where the people live, mostly. So now I'm stuck wondering - risk it or not?

I love my cousin, I'm wicked excited about her baby, and I hate to miss a family party, so those are all on the "Give it a try" side, but on the other hand, we've got the possibility of an unstable ramp (or having to be lifted, which NO Thank You), the fact that there's an animal in the vicinity, and the fact that the house is a good 50 minutes away, so there's no escape plan, really: If we get there and I can't stay in the house, I've got to either stay in the car while the party is happening (which, if you can believe it, would totally not be the first time that happened), or make somebody leave to take me home (if it gets really bad).

Pros, cons, and WTFs leave NTE pretty deep in the "well ... maybes".

The more I think about it, the more I both want to go and pretty much know that I shouldn't - between odors and my breathing (which has been pretty sucky since Christmas, as my tonsils are still as big as a baby's fist), and the pain of sitting in the car, sitting at the party, then sitting in the car again... It would all be a lot, just under normal circumstances. If I'm adding in potential pet hair and crickety stairs, then the scale tips pretty far over to the no-go side.

But then I think about being able to pat my cousin's (apparently large) tummy, the fact that her mother is kind of a source of scandal in the family (haven't seen her in... at least 10 years, and now she's HOSTING? C'mon, man.), and the fact that most of the people I love will be there (some coming from pretty far away), and it tilts the scale back a bit again.

Need versus should, I guess. Optimism vs realism, vs. pessimism. I hate to let people down, and I hate to be left out, but I can't really see a way to make Scenario #2 work in my favor.

Grr... I had kinda hoped that writing it all out like this would make other pros pop into my head, but I'm running out. Crap.

And then, of course, if I can't go, I've got to explain that I can't go, after my cousin has already talked to his dad about the ramp and all that, and that makes me feel bad too.

Blah.

Must switch brain to new topic or risk explosion.

.... I put a new widget on the sidebar, so you can see all the things I'm finding interesting in my Google Reader: also, it's reminding me that it's probably time to fix the template so that it's not quite so Christmassy.

And, in other news, I bought some scratch tickets and won hundred thousand dollars. Actually, I bought some scratch tickets and haven't scratched them off yet, but I was just trying out that positive thinking thing my CBT therapist has been talking to me about. :D Update: I have won $4... I don't think I'm quite getting the hang of this.

I'm downloading I-tunes

because, ugh, I'm trying to upload some Christmas music to my mum's I-pod, and I'm too lazy to figure out the Media Player apps that would make it work that way. So, I-tunes it is. Problem #A is that I have literally 7 GB of space left on my hard drive. As you can imagine that means it runs vvveeeryyy slow. Problem Letter2 is that 6 hours from now when the stupid thing is finally installed, I will have to figure out how to use I-tunes (which is supposedly very user friendly).

We shall see.

Nothing, after all, is idiot-proof.

I can't get anything done today

although... that's not actually true. I have done some things, just not the things I should've done. This is not exactly a surprise, as generally what I plan to do on any given day doesn't really wind up being what I do on those particular days. Usually through no fault of my own.

Today was supposed to be a Lil Girl day, but Lil Girl's mother called this morning and said she wasn't coming. She's fine; STB-Sister-in-law just would like to change our days of the week.

Umm... what?

It's not so much that we can't change our days, it's how about asking? How about having a conversation about it? Since, you know, it's something that we're doing that's helpful to you (and extremely joyful and great for us, but still demanding), how about having the courtesy of letting us know before a half an hour before you're supposed to show up? And... just, I don't know: I may just be making more of it than is necessary, but it really feels pretty shitty to be taken for granted.

So, right now, I'm supposed to be writing an e-mail to STB-Sister-in-law, to have our discussion about the changes: the why, the details, the how it can't start tomorrow because I've got an appointment with Zach, etc., and instead I'm ranting a little bit here, because I'm afraid if I write the e-mail right now it'll say something like "I've been doing my very best to help you raise your kids for the past 8 years, and it's brought me more joy than I've ever known. It's also been extremely difficult at times - especially health wise - and, on a lot of occasions, I've done more than I should have, more than was smart, or healthy, for me, and I've done it (sometimes even against doctors' advice) because I love and care about them, and you, and my brother and because it's important to me to be the best aunt possible. I'm not looking for special thanks, or big cheers; but I don't really think it's out of line to expect just the tiniest bit of consideration in return."

Which I don't really want to say, because it sounds horrible. And it says more than it should (I don't really care if the doctors tell me I should do less: it's not as if I'm going to listen to them anyways... they don't know anything), and it feels more mean spirited just reading it back to myself than it did just writing it. So, yes, it blows the whole thing out of proportion, and yes, I'm glad I could rant a little here, so I didn't just blurt it out to her.

But seriously, people? Just because I want to help doesn't mean you can walk all over me. Assuming I'll just fall in line isn't really fair to me (or Mum, whose POV I totally didn't even write about here, but also just pisses me off even more so now I'll have to calm down again), and it would be nice if I didn't have to point that out to you.

End Rant.

Deep Breath.

Grr.

You wanna know the truth?

I just haven't felt like it.

That's why I've been so quiet here lately... I just haven't felt like it. I'm a little bit in my shell these past few weeks: a bit of bad news here, an added responsibility there; a lame attempt to clean up some of the clutter in my room (and life); projects to finish and discoveries to make; a book that's scaring the shit out of me (and making me consider what I'm putting into my body and what I'm expecting out of it); doctors' offices to fight with (or ignore); mosquitoes to swat away, plagues to prevent; a little bit of time for reflection on the crappy year that's been, and the time that's yet to come; just stuff. Life and stuff.

And so, my brain says things like "You should blog this. Or at least write it down so you'll have something to blog when you get around to it," and another part of my brain goes "Nah." It's pretty obvious which part has been winning.

Also? It kind of got to the point where I just felt like I was complaining about the same things over and over again, sharing the same pictures over and over again, telling you ... nothing, really. And I don't want to blog like that.

So, I'm going to try to work it out. Whether that means I post more, or less, or whatever... I'm not sure yet. But we'll figure it out. I hope you stick around.

I'd miss you if you left.

Sorry to have disappeared

Hopefully it's a temporary break, but my laptop is ... broken? I don't know what it is ... depressed? It's not working, that's for sure. And I'm recovering from the shower this weekend (it went really well! Yay!) but I had a few minutes, and my parents' computer was free, so here I am to tell you I am missing you all... again... and am going to drag my butt to best buy tomorrow if it kills me. NEED COMPUTER. NOW.

Anyways... Will update ASAP. Love, Me

Everyworry

I nearly just put down the computer and headed towards the kitchen for unnecessary food... (When you have no appetite, you often have to remind yourself to eat at all, but when I'm stressed, I eat no matter that I'm not hungry.) But I've been talking to myself for the past hour about facing my fears instead of distracting myself from them. And so, here I am.

This is one of those times that I'm going to write this whole long (or short) post, get finished, and then have to make the decision whether or not it just goes in the draft folder. Or if I am brave enough to push the post button.

I want you to know that I've appreciated your kindness, your generosity, the fact that you keep coming back to read, to say 'hey,' to check in when most of what you're getting is maudlin and dreary. And most of us are feeling enough of the maudlin and dreary on our own lately, and don't especially need extra. I know that feeling: I've been guilty of clicking on a blog I love, seeing how sad the post is and moving on, because I just... can't. Not on that day. So I understand if you just can't, too. That's ok. I hope you'll keep in touch, keep checking in, stop by when there's something more pleasant on our plate.

But here's the thing: that plate? Is overflowing. With everything and everybody. And everyworry.

At least that's what it feels like a lot of the time. I know I can handle it: I actually feel like I am handling it all pretty well, but I'm just saying: it's a lot.

None of the other problems I/we have been having disappeared when Nana died. Life doesn't work that way. My illness is not on hold because I don't have the energy to deal with it. My brother's relationship to his fiance didn't become all patched up, and his preferred form of dealing with stress (by not dealing with it) hasn't magically transformed either. The premature twins aren't uncolicky, and their mother is still a tad bit overwhelmed and depressed. The housing market isn't exactly friendly, and neither are the PUS. Things that were little got magnified, and things that were eventuallys became nows. It's unfortunate, but it's true.

And there's the grief. The little moments when you pick up the phone to call her for dinner, when you burst into tears because her favorite thing to teach was always the American Revolution, and she's missing a most awesome show? (Seriously, are you watching this show? It's on the HBO... and now I think Abigail Adams is a rockstar!)

I always feel compelled to put all the good things in, when I start a post like this, in the hopes of saying: 'I know it's a lot, but I've also got all of this!' I'm tempted to do that now, but that isn't what I wanted to write about. Check out my other posts from this week, if you're looking for the happiness.

And the happiness, it's here too. It's the complexity of things that's got me all churned up tonight. A night where my brother takes an Ambien and says it's for stress. Where Youngest Sister fills her plate with Harvard-y things, and becomes blind to everything else. Where Grandmother takes longer to recover from a cold than me (heretofore unheard of, I assure you). Where my doctor's appointment gets rescheduled, but I'm out of meds. Where my checking account starts to resemble Al Capone's Vault. Where my laptop's fan insists on making an extra hissing noise for no good reason. Where the Easter Bunny bought double the amount of candy, used to making twice as many baskets (one from us, one from Nana.)

It's a night for feeling overwhelmed, and I'm not going to apologize for it. I apologize too much: two people told me that recently, and I'm afraid they're right, so I'm cutting back.

Feeling everworry is a heavy thing, and sometimes you just need to set the load down for a few minutes. Thanks for letting me.

Last week

I had to pick up some prescriptions, and went on the search for the least smelly dandruff shampoo I could find. (My scalp is out of control, people. But I can't use those tar things they used to tell me to use, because of the smells... it's a pickle.)

Anyways... I came across this:




Yes, that's right: anti-sponge shampoo. I honestly could not figure out what they heck they were talking about, and since the back of the bottle was in spanish, I was left totally confused.

The website says it's to combat hair that 'absorbs water and magnifies in size'... So... poofy? Poofy hair is what we're working against here? Except they also have an Anti Poof shampoo, so it must be different somehow. And they also have a volumizing shampoo. So there's sponges, bad poof and good poof.

No wonder I don't get this kind of stuff...

Things I don't get that other girls do...

(Part 1... of probably 1 billion.)

Valentine's Day.

I just ... don't get it.

I mean, I am a Card Person. Capital C, Capital P.

I know the location of 3 local Hallmark Stores. I know two of the salespeople at one store as more than nodding acquaintances (I may or may not know the names of their children).

I can, very easily, spend upwards of $50 (and 50 minutes) on choosing cards alone. I usually have a multistep approach to buying cards...
- Step 1: Pick up cards that I like, have a need for, may someday have a need for, or just plain want.
- Step 2: Try to keep a running tally in my mind of an approximate cost for the cards I am gathering.
- Step 3: About 45 minutes later, after having gone through each aisle of the store at least once, realize I now have enough cards to wallpaper my room with, and no freaking idea of how much they cost.
- Step 4: Realize that I cannot rob a bank in the next 15 minutes, which requires cutting the pile of cards in my lap down by about 75%.
- Step 5: Still spend about double what I had set out to spend, but walk away happy just the same.

If those steps get screwed with -- if I have an urgent need for just 1 card, for example, I feel disappointed that I did not get to loiter in the store for hours on end.

So I love cards. Hallmark commercials make me cry, I am sappy and sentimental and have a gooey chocolatey center. I celebrate St. Patrick's Day, and Grandparents' Day, and even sent a Friendship Day card one year (albeit totally by accident.

In short, I am the sort of person that seems tailor made for Valentine's Day Fever.

And yet, I have none.

I know what some of you may be thinking, but I am also not a Valentine's hater: a cynic, heartbroken at having spent her entire 28 years on earth Valentine free, set lose to terrorize the 'lucky few' out of their moonlit dinners and conversation hearts. (Well, I doubt that any of you are thinking that, but let's just say it wouldn't be the first time I ever heard that theory...)

No, I'm all for you having a great time if it means something to you... I just don't get it.

I like Valentine's Day parties in classrooms ... as you are reading this, children everywhere are sneaking business card-sized envelopes into the specially decorated desks of their classmates, eating cupcakes bedecked in pink sprinkles, or wondering at who could have possibly signed their card with a question mark. (And their teachers are shaking their heads at their naive belief that they might have actually accomplished any work today.) And, when you're teaching, any excuse for a party is welcomed ... but I don't get it: It isn't as if there are extensive curriculums set up that delve into the philosophy of love and it's many representations, or that there's a historical imperative to learn more about this wonderful patron saint of fainting, the plague, bee keepers and lovers (wow, I love being a Catholic!)... It's just, "Hello, it is February, and this is what we do in February."

I don't get buying roses when they're 3 times as expensive as they might be on any other random Thursday. Or heartshaped boxes of chocolates that are irresponsibly unlabeled (I hate those orange creme ones: why are they even in there??)

I don't get why single people have to feel lonelier on the 14th of this month than they would on any other mid-month (especially since, any other 14th day would not find them feeling particularly lonely at all). Or why couples should have to feel the pressure of adding a perfect night to their weekly routines. I don't get imposed happiness any more than I get imposed unhappiness.

I don't get how guys forget Valentine's Day, when it starts being everywhere right after Christmas, but I also don't get why it's so important that they should have to remember it.

It's just one of those things that I missed out on, like the need to buy shoes that cost more than a good camera.

-----------------------------------------------------------------------------------

I'm going to try to get back into posting: I've been missing it, and all of you.
My days are still very difficult: knowing the right thing to do for other people who are grieving, particularly my mum, is a hard, hard thing. Knowing what to do for myself is proving pretty difficult as well.

But I think we're all doing ok, and I'm going to keep thanking you all for all your help, just so you know how much I appreciate it. For now, I need to write again ... it helps me remember that there are other things going on -- in my life, and in the world -- and helps me feel more like myself. And I can use all of that that I can get.