Forgot to mention

But I'm publishing a review a day for the month of September to catch up with my Cannonball Reads 6 queue - I took a break there sometime around 20 books and the end of April. I've read about a million and a half fan-fics since, but have fallen waaay behind on my book reading, and even further behind on my review writing, so if you're interested, or if you just want to see what I have to say about a bunch of books and maybe you don't already follow me on Goodreads, c'mon over.

A review I wrote last week got a comment by the author on it the other day, so that was pretty exciting! Exciting because I actually liked the book...so she was pleased by the review and I was pleased that she had seen it. It definitely could have gone the other way - I wrote a not-so-great review about another book a few days ago and it still doesn't feel great to me, because I hate to say mean things. I mostly just tried to play the "this really isn't my style" card, but... there were a lot of issues, and I mentioned that a few times. I wasn't actually mean about it, I know that, but it was hard not to follow the "if you can't say anything nice, don't say anything at all" rule.

For the most part though, I'm on a pretty good streak of books, and I think, if I survive September with any brain cells, and anybody's interested, I may link a few of my favorite fanfics and talk about them, come October. (Apparently we can review them for CBR, but since the point is to raise money for charity through Amazon, I'd feel badly since there aren't any Amazon-links to click in the AO3 fics. But this is my page, so I can do what I want. Also, at some point, I should probably recognize that I have been writing here for 9 years now, I think. It might be 10 - time to dig through the archives for that first mess of a post, and see the date again. But I know it was September, so I've got a blog-aversary coming up. And a sick-aversary come October. I'm just full of happy days [and made up words.])

So come check it out, if you feel so inclined.

My Inner Elsa

Part of the reason that I like winter are the reasons that everyone else dislikes it: it's cold and inhospitable outside, so you're stuck in the house.

See, for me, that's actually mostly an improvement: I'm generally inside, usually stuck, and the rest of you are out there buzzing around being... productive or something. Ick.

The idea that other people are just as confined as I am, that there's some universality of feeling stuck is somehow comforting to me. I like to picture all of you huddled behind your screens, cozy under blankets, as I'm huddled behind mine, tippy-typing away.

A bit of misery loves company, perhaps, but I find winter (for the most part - there are limits*) to be a cozy, comfortable type of time.  Of course, everyone else in my vicinity is Fed Up (capital F, capital U) with winter, and has taken to Facebook and Twitter to rage about yet another snow day or how spring is bound to show up sometime, right????

But I'm pretty much all set ~ winter allows me the comfort of my heating pad without worrying too much about overheating; nobody else is tan (and therefore can't endlessly comment on how pale I look); indoor activities trump outdoor, with little debate; and - since there are no longer any preschool age children in my care - as long as I don't venture too far outside of my own particular bubble, I'm not a battling a constant barrage of germs. (Knock wood, having said that, because I was with kids this week. And at a doctor's office, so that's twice the wood knocking required.)

And - as I don't have to do the shoveling, and don't mind paying neighborhood boys a little bit extra to clean the ramp, if necessary - I prefer snow to rain, 100%. Rain makes me feel gloomy and Eeyore-ish, sometimes to the point of headaches; Snow makes me feel like curling up with a good book and a cup of Fluff-topped hot chocolate is the only reasonable option in life. Who could argue with that?

So, while everyone around me clamors for winter's end, and moans about yet another storm heading our way, I'm just going to smile slyly, load up my kindle and make sure we're well supplied with hot chocolate.

How about you - Are you begging for spring (open windows, I do miss you), or enjoying the last gasps of our ferocious winter?

 

*These limits are mostly health related - cold is a foe to both my aches and pains and my asthma, the latter of which is worse than it's been in years, because just breathing the nearly frozen air outside is a true struggle. But the heat doesn't help my health either, so it's usually a case of '6 of one...'

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. 

Three things

Three things that I've noticed since I've been participating in NaNoWriMo -

1) It is really cutting into my reading time, all this writing.  It's hard to walk around with my characters in my head and other people's characters in my head at the same time: I was reading a book where a character was killed and she bared only a slight resemblance to my main character, but I started bawling anyways.  I'm not saying that my mood didn't factor into that, of course it did, but still ~ but between that and the amount of TIME I spend writing, it's making it hard to read all the time, which I don't like...

2) I am really an ace procrastinator.  I can put things off with aplomb, people.  (Because once I start writing, generally?  I can knock out a scene no problem.  But getting to the actual writing point? Requires a timer, a closed door, zero distractions (including Facebook, Pinterest and other soul suckers), and a tuned in brain.  Arranging for all of those things to meet at one time, for a steady period of time - quite challenging.)

3) But, I'm 100 words shy of 37,000 words people (which, my word program counts as about 80 pages, but whatever), and ... the book is nowhere near finished, the plot is still kind of murky, and yet: I totally love it.  It's pissing me off a little, since it didn't go in quite the direction I thought it was going and I've had to do some readjusting because of that, (not to mention I have no idea how to end the stupid thing) but, mostly?  I kinda like it, this thing I am creating.  Which is huge for me, because lately, I've been feeling like everything I am doing is ABSOLUTELY IN EVERY POSSIBLE WAY ENTIRELY WRONG. No matter where I step, I manage to stumble, or land on some one's toes or a pile of dog poo or something.  People are dying, fighting, crying, mourning, faking it, trying, and I'm just stumbling in and out of the way.
   I know I say it every time, but I wish I didn't stop writing, that I wouldn't let myself stop writing, even when things are hard because I forget that it is something I like, and am good at, and am capable of.  With all the shit that's going on around here, and all of the things I'm not capable of?  It's nice to reminded that there are somethings I can still do.

I've been writing letters

Some actually got sent (mostly advocacy ones), and some are just rolling around in my brain, and some I typed up just to get them to stop rolling around in my brain - with no plan of ever sending them.  But there might be a couple of letter posts in a row, here, just so you know.  To start us off, here are two that go together -

Dear Therapist Who Apparently Has No Compassion/Home Health Aide Who is Too Rough/Nurse Who is Rolling Your Eyes Right Now,

     I know my grandmother is stubborn - it's kind of a point of pride, in our family, that we are all 'strong willed,' but nobody as much as she.  I know that, at 94, it is sometimes hard for her to adapt to new situations as quickly as you all would like her to.   But I think it also would behoove you to remember that she's not stupid, that she did, somehow survive for these past 94 years, doing the best she could.  This is a woman who has lived through a lot - 2 World Wars, technically!  A major car accident! Being a nurse on the maternity ward when losing mothers and babies was seen as the cost of doing business!  She has raised nine children, one with Down's Syndrome, and helped raise at least one of her grandchildren.  She lost her mother when she was a child, her father almost 40 years ago, all of her 5 siblings, half of her children as adults, and her spouse.  She's a tough lady, is what I'm saying, and she's hurting.  Physically and emotionally. 

So, maybe you take your time going through today's exercises with her, or cut her some slack for not doing them when she had the stomach flu?  Maybe you take her word for it when she says that something feels different, not just assume it's just something she never noticed before. No: she won't always follow directions blindly, which might be easier for you, but wouldn't be for her.  It's pretty reasonable for her to ask questions about something she knows very little about, so maybe rolling your eyes isn't the best response.  Also?

Could you look up from your god damn schedule/paperwork/planned assignment for today just for a minute and recognize that what you want to do and what she needs are not always the same thing?  She's not inside your little laptop - she's sitting right in front of you, and she's scared (though she'd never tell you that) and she's pissed (which you might have gleaned) and she's frustrated (because '8 weeks should be long enough!') and she's hurting (because she fell down the stairs.  And broke her arm.  And had five screws put in.  And is ninety four frigging years old!)  

So let's try out that bedside manner you're supposed to have in there somewhere, and give empathy a shot for a little bit.  It won't hurt you, I promise.  And it'll make things a whole lot easier on her.  

Trying not to hate you right now,

NTE


Dear Every Other Person We Have Worked with in the Past 8 Weeks,

     I appreciate your patience and your kindness and your understanding with my grandmother.  I know she has not always been the best patient, but thank you for realizing that it is for valid reasons, and that she's doing the best she can, even when all that is is refusing to do what you want her to do.  She really is recovering incredibly well, and I know it is, in large part, due to your help.  She knows it too, and I think, has shown you all how grateful she is (even though she is also telling you how frustrating it is to need your help).  Many of you have commented on her spirit, and how gutsy she is: I agree.  Some of you have noticed when she is feeling a little low, and have tried to listen to what she needs - even if all that is is listening, or cutting her toenails, or remembering to wipe your feet before you come into her house when it's raining out, and I could not appreciate it more.  She's a special lady, my grandmother, and it's nice to know you all think so too.  

With my very sincere thanks,

NTE

In the ball pit

I do this thing where I start thinking - really thinking - about something that's important: Have you noticed this about yourself?  Is there a reason why you have to run your mouth like that/act so awkward around new people/ be unbelievably cranky for no good reason?  And as soon as the truth about the thing starts rushing at me - as soon as I'm starting to get to the meat of the issue, or when it starts to sort of click in my head that this is not a unique occurrence, that I sometimes act like this and maybe it is a pattern... well, when the truth starts rushing at me, I start rushing away.  Is there anybody who needs tending or talking to, or playing with?  Isn't there a show on right now that I can escape into, be mindless with?  Isn't there a book I could read that would take me anywhere but here, facing the truth?  It's such an uncomfortable feeling, this realizing things about yourself, and I would do just about anything to avoid it, I think. 

When it does come, and I have seen the whole, frustrating, ill fitting truth about myself, it sticks in my brain: a large scaly burr just big enough and irritating enough to block out anything else.  I have no other qualities except  this uncomfortable truth - I am no longer a good person, a caring sister, a hard worker - I am only an inveterate gossip, a gigantic fraud, a loathsome individual who feels lonely until she's with people and then wants nothing more than to be left alone.  Even though I know that this is not true - that all the good things I am or do are not obliterated by some newfound/newly understood flaw in my character - it is how it feels, and sometimes how it feels is how it is. 

I have recently come to quite a few uncomfortable realizations about myself, and trying to integrate those things - a certain pettiness here, a confounding inability stick to the straight facts there - into my vision of who I am is proving more difficult than I'd have guessed. I have always known that I wasn't perfect ~ contrary to what others may think, I am well aware that my goody-two shoes image is just something other people see me as - I have never seen myself as such, and wouldn't really care to.  But these inconsistencies in my character - the difference between who I want myself to be and who I really am, these are things I want to fix, to change.  And that means recognizing them first, figuring out how deep they run and (maybe) where they come from, and how to stop doing them.  It's a lot of heavy mental lifting, and, for a person who has limited reserves of any kind of energy - physical, mental, emotional - it certainly seems Sisyphean. 

So I keep looking for low energy escapes - can I ever get my Google Reader below a thousand again?  Is Reddit being entertaining or insulting today?  Is there any way I can get my uncle to have a conversation with people so that they don't think he's an ogre? Let me organize every photo you've ever taken in your whole life! - and then condemning myself for needing these escape routes.  It feels like I'm stumbling around kicking at little pebbles, all the while trying to avoid all the heavy boulders I know I have to move if I want to move forward, but just can't even look at yet. 

It feels that way about everything - about all the work I have to do to manage my illnesses (and the question of when I decided that just 'managing' is enough for me), about all the things in my own behavior that I'd like to change; about all the topics in my family that need addressing, and all the ways we find of not addressing them; about not making time for friends and then wondering why they aren't making time for me; about the world as a whole and all the things spinning out of control in it.  It just feels like there's too many important things that should get looked at, poked at, lifted up and examined, fixed, and I don't want to touch a single one of them. 

A perfect example in the physical world is that my space is still not undecorated from Christmas - oh, the actual decorations are down, but the furniture is still all in the wrong places for every day living.  Thus making it more difficult to do things like get towels, because we moved the cart that holds the towels behind the chair, so you have to climb over the chair to get ready to take a shower.  It's little ridiculous things like that, but also huge life changing things like deciding to call the PT again, and see where that takes me, or actually changing my diet enough to prevent this diabetes thing from happening - and I just don't want to face any of it at all. 

And here I write the necessary caveats that "we've all been sick since Christmas! - and I mean sick sick, like the flu that won't die sick" and "I've just spent two months caring for a wonderful lady, whose head is harder than the stairs she fell down!" and "blah blah blah Chronic Illness, you idiot!" but all of that  - while true and real and just so much - doesn't feel like enough of a reason to let everything else pass me by.  I never feel like I am juggling half of the balls I need to juggle, there's just me, standing with maybe the three or four largest, most fragile balls, throwing them up and catching them (sometimes by the skin of my teeth, but still, catching them), and all the while, the floor around me is littered with a million other smaller balls.... It's basically me, standing up to my waist in the ball pit of Chuck E Cheese, trying to catch all these biggest balls, but knowing I've let a thousand more go.   And not knowing which of those thousand was the next most important - the one that needed me now, and I won't get to it for another three weeks.

I don't know what to do about all that - how to climb out of the ball pit, or juggle better, or even begin identifying the colors of all the stupid things I'm standing in.  I know this feeling will pass, or fade, because it has in the past, but it never goes away... I'm always fumbling something, and I wish I knew how to stop. 

Why can't we unfriend?

Sometimes looking at the updated feed from my Facebook page is so cringe inducing that I can barely stand it.  Occupy Boston was a large 'offender' today - since they were holding up traffic and making people late for their football games and date nights, and God forbid some of the people on my friends list can't get their drinks immediately following the end of their work day.  I really only have two or three highly offensive friends - people whose politics and world views are so far afield from my own that I have trouble remembering why or how I ever liked them in the first place. The worst offender, by far, is my older brother's childhood best friend, who, previous to Facebook, I was not aware was a right-wing, "anti-PC" (meaning totally pro-any ism you can think of) windbag.  I only follow him so I can see pictures of his adorable children, although even that makes me think: "oh crap, those kids are going to be haters, later."  I even have a cousin who is on Facebook, and I am friends with his wife, but... I know that if I ever want to be able to speak to him in person again, it's better for both of us that we're not FB friends. 

Those two or three fanatically off the deep end friends though, they have friends, and usually, those people's comments are even worse, and I have to just deep breathe and press the little x.  Spraying the Occupy Boston crowd with bullets was suggested, as was that they all get jobs and stop wasting tax payers' money, and my favorite was the suggestion that it was "just an excuse so that the rapists and pedophiles can hang out and rape people and kids."  Yeah: I don't understand how I live in this country, and that there are people who think that protesters, who have specific (and, in my opinion legitimate) complaints about the way our country is run are the same as pedophiles or rapists.  Or that we should just line them up and execute them as a way of "thinning out the herd". 

Seriously? 

Do not comprehend.

Let's take a pretty realistic example: I do not (as previously discussed) find much/any value in the Tea Party movement.  I think it's run by corporations looking to avoid paying taxes or acting as responsible members of our society, and that most of the people (not all, but the majority) are not just ill intentioned, but ill informed.  That's my opinion, and I have a right to it.  When they were here protesting, which they've done numerous times, I have rolled my eyes at their comments, signs or behavior; laughed out loud, sometimes at the complete ignorance when it comes to the issues; and done my best to ignore their existence.  That's what you do - you complain on Facebook about the inconvenience of the rallies, or the lack of spell-check on the signs, or their unapologetic hypocrisy or display of privilege ("there's no such thing as racism anymore," I remember hearing that come out of some (obv. white) Tea Partier on the news a while back).  It's ridiculous, literally: worthy of ridicule, and so I feel free to ridicule away.

But I've never said - or thought, even - let's "mow them down, while they're all in one spot".  Or that, for sure, the Tea Party was just a cover for NAMBLA.  It's just not something that occurs to me, to be honest - the reality of the situation is bad enough, so why think of ways it could be worse.  I get being opposed to what a group of people are doing, and saying so, vociferously, wherever possible.  But when I see all of the vitriol directed at the protesters that many consider too liberal, I wonder a couple of things -

A) When did so many of my friends become friends with douchebags? 

B) Isn't it amazing that other people are so against a group that has done nothing besides say "Hey: we think this is broken?"  They have done nothing - which is part of the reason I am not 100% behind the movement, I feel like there needs to be some actions involved - and yet they are mistreated by the police, falsely portrayed by the press, largely forgotten by the public, and that's just accepted

and, sadly

C) Remember how naive I used to be about our society, and how we were all working toward a common goal?  That we had unalienable rights (not saying that being an asshat on Facebook is a violation of those rights, just that it reminds me of all the violations that nobody else seems to care about)?  That people weren't just mean for the sake of being mean?  Yeah... let's be 9 again, shall we?  I think I need a refresher course. 

Anyways, that long rant about Facebook and cretins, and of course the solution is very simple.  And topical, as it turns out, because today just happens to be National Unfriend Day, which I swear I didn't even know until I just heard this song on another blog (Synergy!)  So it's time to clear out some of the unwanted friend clutter, if you've got some.  Scumbag former acquaintances, who will never even notice that I'm not your friend anymore?  Adios. 

Lovely readers of my unusually curse-heavy today blog?  Please to enjoy this song, in honor of National Unfriend Day

American Censorship Day

If you've been on the Internet at all today, you might have seen something about American Censorship Day.  I first noticed it on Reddit,  and I didn't know what it was about, but as I spent more time wandering through the web, there were about fourteen petitions floating around, begging for signatures.  Honestly, it seemed pretty straightforward to me - the government and entertainment industry are looking for greater controls over the internet, the ability to shut down certain sites, should there be posts of copyrighted materials.  On the surface, I can see both sides to this - Copyrights are protected for a reason: the artists and business people who create films, music, art, etc, work hard and should reap the rewards of their crafts, to the largest extent possible.  On the other hand, letting the government, or a movie studio (for example) have the right to shut down, fine or punish an entire website for the postings of one user?  Seems like an extreme overreaction. 

I saw this video, and it made a lot of valid points I hadn't considered, regarding the economic ramifications of the bill(s):


PROTECT IP Act Breaks The Internet from Fight for the Future on Vimeo.


For myself, even though I respect that copyrights are important, my position (if I've understood what I've read and seen today correctly), is that this is a bill that should not pass.  This bill is way too strict (in terms of penalties), open-ended (in terms of who has the power, and what powers they would have), and doesn't really address all of the (or, honestly, any of the) concerns  I, as an internet user, have about systemic censorship.  So I signed a couple of petitions, and I'm going to see what I can do about calling my Congressmen tomorrow.  Because, even though I haven't heard of it before, this is something that's frightening to me: Giving corporations (even entertainment industry corporations) more power than they already have?  Not a fan.  Punishing all users as if they are monolithic entity?  Not a fan.  Limitless ability to ban websites with very little (or any, as far as I could see) oversight?  Not a fan. 

Censorship in America is so 18th century (if only); Let's keep it that way.

The text of the bill is here;  the Reddit thread I first heard about this from, and which shows that the websites of the bill's own co-sponsor would be in violation of the bill, should it pass, as well as a ton more information, including how to best contact your Congressperson, is here.  


Also, PS? The idea that the Washington Post says that Tea Party advocates are against these bills gave me more than a moment's pause.  I will freely admit that I do not want to be on the same side of just about anything as the Tea Party, since they are generally... the polar opposite of my every instinct.  So I took a little longer to research, after I read that, just in case I was missing something.  But no: They're worried about "business strangling power" that the government might have, if the bill is passed, so I guess, even though we have different reasonings behind it, there's a first time for everything.

Rabbit's hole of procrastination

I'm not sure what most of you use to surf the internets, but I prefer Firefox.* In the latest three (or so) versions of Firefox, there's a new "Group your Tabs" option which is both the best thing ever (!1!11!) and possibly the key to my downfall. Here is what it (basically, only larger and with less concealed) looks like:



All of those little white squares, within the larger light blue squares, are websites that I am in the process of reading, or writing a comment on, or playing a game with, or having a discussion on: They are basically some of the little pieces of my brain that are floating around the internet in some capacity. The light blue squares and rectangles are the groups - I've got a crockpot recipe one going, all the crap I've got to pin (If you're not using Pinterest, you are missing out on one of the greatest procrastinatory tools of our times - sorry I can't share my link: I had to sign up with Facebook, which is obviously not anonymous), videos to watch when I don't also have the TV running, book reviews to read and books to add to my TBR pile, and various other things, including a large group of "read these more carefully" which includes about 2 months worth of Dear Sugar posts, and lord only knows what else (Quite possibly your posts, if we're being honest, since I have run out of space in my Google Reader). When the large squares get so full of little squares they don't fit anymore, you get that layers of paper look that's in that rectangle to the left of center there: that just means there are so many pages to read that I have filled up the group size. (Then I usually shrink it down so it doesn't look like so many, hence the "Books" group being so tiny.) So given that I have all these new ways to organize the things I'm reading/pinning/watching/playing, would you like to take a guess as to how much of the time I spend organizing rather than reading???

Ah, procrastinating my main way of procrastination: it's like Inception for procrastinators! And it's just asking for trouble, I tell you.

Anyways, that's what's new in my world ~ a way to spend more time on the computer and actually get less accomplished, a goal I would have said was near to impossible just a few short months ago! What's news with all of you? You may have said something about that in your latest blog posts, but since I'm still more than a thousand posts behind in my Google Reader, and Firefox has made it so nifty for me to move your post directly to the "Read this more carefully" portion of both my screen and my brain, I can't promise you that I've read it yet. I will get there though!

In the meantime, nice to see you, and I'm sorry if you still use IE: there's really no reason for that. (I may hold a grudge against certain IE related fails from way back when, including the time the program itself seemed to "melt" - actual computer person's terminology that I still have no idea what it means - and took a good three hours worth of schoolwork with it, but that's just my own prejudice.)



---------------------------------------------
*If I were to put this in SAT terms, it would read My preference for Firefox is to my hatred of Internet Explorer as Eating Cookies:Eating Rotten, Raw Eggs. I have dabbled in Chrome a bit, but Firefox is my platform of choice (if only for awesome plug-in capabilities).

More of other people's words

Before my *new, less than a year old* computer literally starts smoking (it smells like burnt hair), I wanted to say hey! But I have no thoughts, so I'm just going to share some of what other people are thinking instead.

“While people around me start to relax, I keep my eyes on the sea, waiting to be rocketed into it in a wave of fire. I’ll be ready for it to happen, and therefore it won’t happen. It’s a burden, being able to control situations with my hypervigilence, but it’s my lot in life.”

Tina Fey, Bossypants (the best book I've read in a while).

"there are your fog people & your sun people, he said. i said i wasn't sure which kind i was. he nodded. fog'll do that to you, he said. "

from Story People

“Sisters will leave scars on your body—and your heart. No one in the world can betray you with quite that eye toward perfection, and no one will ever regret it more.”

Barbara O'Neal


And because I need to remember it:

“Don’t look over your shoulder to see what relatives are perched there. Say what you want to say, freely and honestly, and finish the job. Then take up the privacy issue.”

William Zinnser, American Scholar, How to Write Your Memoir

"... handing tickets out for God"

I started writing (one day last week) about the Jesus Freaks who stopped by with their version of the "Good News" and somehow wandered way off topic and started going on and on about how I used to be a Jesus Freak myself, and therefore I don't mean the term in any offensive way, but more in the way former band geeks talk about current band geeks or ex-goths talk about emo kids: You've been there, so you know, and almost feel a sort of kinship, but you're really glad you're not there anymore. I don't think there's anything worse for a believer than a former-believer: all of my sarcasm and surety that I was made a fool for so many years is always right there, and I'm sorry if sometimes it slips out. I try not to be patronizing - I really am glad for you that you still believe - but when they start trying to convince me, all bets are usually off.

So that's the way the post was going, and then I realized that I'd written that post before - multiple times. Yes: the Catholic Church and I used to be BFFs and yes; I could probably write another 17 posts about that, but that wasn't the post I sat down to write, so it wound up in the draft folder (like a million other posts: seriously - my draft folder is a scary place). And now I'm back, attempting to tell you what it was about the Jesus Freaks that pissed me off .

It took me a while to put my finger on it myself, but eventually it boils down to this: It is the sense of judgment I feel when they're telling me how easy it is to fix who I am.

Here's the thing: Remember in the fall, how when I was living at Grandmother's house, helping her with her post-stroke recovery, things here at home were progressing on the 'build a ramp so NTE can get into the house more easily' front? Well, now we have this beautiful ramp that's slippery as hell in the winter, and takes up our entire front yard but makes my life about 200 times easier. And yet: it is a beacon for the 'people of the Lord.'

While we were building it, a woman walked by and asked my dad what the final product was going to be. When he explained that it was going to be a wheelchair ramp, she said "I'm so sorry," then returned a few days later to drop off some rosary beads and a scapula she thought I might like. I found them on my bed when I came home for a shower that week, and my dad didn't understand why I didn't think it was the 'sweetest neighborly' thing for her to do.

Twice (that I know of) since then, we've had various forms of preachers come to the door: The first time, the guy was Mega-pushy, and I felt no compunction about not letting him in the house or giving him a chance to speak: I kept him on the porch, while he started his spiel about 'those who turn to Jesus will find a way with him,' and how 'putting my feet on the path would help them walk again.' I know that you all know me well enough that I can admit I was sorely tempted to just walk out onto the porch just to see the look on his face, no matter that I would've fallen down eventually, or that it would've hurt like hell: I still am kinda sad that I didn't, because the "OMG: I AM TOTALLY WITNESSING A MIRACLE" moment would have changed one of our lives forever. ( I know, I am damned to hell, so I might as well enjoy it, right?)

This latest preacher though, was a very nice gentleman (and he came with a silent friend), and he specifically said "I don't want you to let us in, I'd just like to tell you some things, if that's alright with you. " Well now, I'm not a heartless bitch, so I opened the screen door and gave him the ok, give me your best lines, preacher-man, and I promise not to laugh. (Again: I'm good with you believing, but once you're trying to get me to believe, I can't promise that I'm going to be able to hide my skepticism.) So he starts off pretty swell, talking about God's willingness to help people, and how it was his job to try to find those that most need God's help and bring them his Word.

And then this well meaning fellow, with his quiet and (I could honestly tell) earnest sense of caring starts talking about miracles, and Jesus making the blind see and the lame walk, and I'll tell you. it took everything in me not to slam the door in his face. I just - can't hear it. I just... I don't even know how to explain how badly that makes me feel, how irritated it makes me just to hear it.

Just to have that experience of - once again - being a person, going about their normal day...I was making breakfast when the doorbell rang, playing with my 1 yr-old nephew and chatting with my sister... when all of the sudden someone interrupts your life to tell you how you are just not right, just not good enough the way you are, just not the way a person should be. I am not saying that that is what he said , because, again, he was kind of a sweet guy, but that is the way he made me feel. I had to sit there and be irritated and frustrated and ashamed, all because - in society's eyes, and I guess in 'God's' eyes too - there was something about me that was just wrong. Something that called for miracles and saving and the power of God.

That me, just being me, requires the intercession of God on my behalf, in order for me to be fixed? Pisses me the fuck off, I gotta tell you. Of course I wouldn't thumb my nose at a miraculous healing, should one decide to take place, but you know what? I'm not broken right now, or maybe I am, but not in the ways that you think I am. And if I am it's none of your damn business... I'm not asking to be saved just by virtue of living as who I am. Just by having improved my house to the point that I can finally get in and out of it on my own, I'm not giving you the right to comment on my life.

It's something I get a lot of, in a lot of random ways: people who see me 'walk' the steps to my chair and tell me I'm not sick enough to the handicapped parking placard, or strangers who tell me they'll pray for me when I'm out in public. When you're visibly disabled, everybody's got the right to comment suddenly. I didn't ask you for your opinion on what I'm eating - the fact that I'm having a cheeseburger is not in fact the reason I'm in this chair, but thanks for telling me all about how you stopped eating meat and your rash went away. I don't have to justify my applying for aid to some arsehole cousin who thinks that all social welfare programs are tools of the Communist Party, and I'm lucky that I get to spend his "tax money" on my "frivolities."

All I am trying to do here is live my life, and as nice as that preacher was, when he left behind a scripture for me to read and "think over with your heart", I was all too glad to close the door behind him. I appreciate his belief that I could use some blessings (because, holy hell, yes, I could use some blessings), but I don't like the assumptions he made about who I am, or the life I live, in order for me to earn his blessings. It feels like pity. It feels like ableism. It makes me feel like less than.

So I know I won't be opening the door to any more preachers, because their blessings tend to feel like curses, and I have enough of those. I'll take all the prayers and warm thoughts and fairy dust you want to send me, but don't assume that I need them because I'm in this chair... I'd much rather have a family that was kind to each other than a body that worked correctly. Or a baby that I knew I could provide for. Or an understanding of how to be happy, regardless.

I'd like to be healthy, sure: but I'm living my life the way it is, and that's not sad, or in need of fixing, or less than anybody elses, so don't make me feel like it is.

You know what I'd like...

oh, about a million and a half things that aren't really things, but more like feelings. A million and a half positive feelings, that's what I'd like.

I'd like to be able to take a deep breath. And trust that the breath is going to go in the way it's supposed to and come out the way it's supposed to. Just to not have to doubt that.

I'd like to be able to leave a room without worrying about all the people I left behind in it. Or to not have to leave the room in the first place because of how uncomfortable I am.

I'd like for the words to flow, not get stuck up in my brain. Sometimes it feels like there's a clot there, a big negative clump, blocking all the good things from getting in, and all the good things from getting out: I know there are good things, but they rarely mean what I want them to mean.

I'd like to just be able to shut off the worry, for one goddamn day. Just all of it - off.

Hope you're having a good weekend - mine has been a little complicated (ugh), but I hope to be back soon!

How poor are they that have not patience! What wound did ever heal but by degrees?*

Day 11: Something people seem to compliment you the most on **

I seem to get the most compliments on my patience. People are all constantly telling me how patient I am. Which makes me think that they don't really know me at all, because I don't think I have hardly any patience at all.

Well, that's not exactly true, because I do have patience with little people. When it comes to kids, I can put up with just about anything... until I can't. But my limit is pretty high, and often, I'm the last one standing when it comes to waiting out a tantrum or listening to their latest complaint about how unfair some rule or another is. Pretty much nothing they do bothers me at first, and it takes a lot to push my buttons, because I figure "They're kids, they're just learning, or just trying to figure it out" and I can cut them a lot of slack while they work on it. (Which does not mean that I'm a pushover - I may have a lot of patience, but I'm also a stickler for rules, as any of the munchkins who've been under my care would surely tell you.)

But when it comes to grown-ups? I mostly figure they should have grown out of their tantrums - whatever form they might take - and so have a lot less patience for their poor behavior.

But I've been getting the "you have so much patience!" compliment a lot lately especially since I've been working with Grandmother and all her various therapist type people... Uncle Jack (who has very little patience... for anybody) is constantly telling me how much he appreciates that I have the patience to put up with them (and Grandmother's ... self-willed-ness) so that he doesn't have to. It doesn't really take that much though, so I think that's more a measure of his lack of patience, than my abundance of it.

But I'll take any compliments I can get, so let's all pretend that I am awesomely patient, why don't we?


*William Shakespeare, Othello
** Can we please stop ending sentences with prepositions? It's hurting my grammar-geek soul.
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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

It's been weeks and weeks,

actually probably closer to two plus months, since I've participated in My Best Shot Monday, but I'm planning on contributing tomorrow. Our new days with the kiddos mean I won't get a post up till after they leave, but I'm determined to post something. Hence this really useless post that only serves as motivation for me not to 'forget' or be 'too tired' to post tomorrow. Commit to an action publicly, they say, and you're more likely to follow through. I tend to agree, when it comes to myself, that if I haven't said "I will do...." then I can convince myself to just put in on hold indefinitely. So: Tomorrow a picture! Of something! Or someone! Let's all be surprised together. :gulp:

I know the internet doesn't care

about the heat, but my body does. Other things it cares about that I would rather it didn't: the smell of food cooking in neighbor's yards; the smell of photos that have been living in a smoking house for 30 years; the smell of low tide, over a mile away; any smells, ever, in my immediate vicinity; our new summer schedule with the kids (MWF); the damn sun; every movement I have to make; about a thousand other things.


I find that I am easily, easily frustrated right now, and I hate it: I feel whiny and petulant and ungrateful. Nothing is horrifically wrong - nothing new is happening, and yet, the fact that my face isn't better, the fact that I'm too exhausted to help the kids check things off our "Stuff we want to do this summer" checklist, the fact that the incessant humming drone of the air conditioner is driving me batty - it's all making me feel cranky.

We don't have the kiddos till Friday this week, since their parents have some vacation days this week, and so I've little distraction from my crankiness, and that makes me feel even more ridiculous, because I'm depending on a 10 year old and a 4 year old to distract me. They are a great distraction, though...

You wouldn't know it by this post, but we've had to declare this the Summer of No Whining at our house, because Lil Girl is smack in the middle of a very whiny phase. (Says the woman who just whine-typed for five minutes straight. Does it count if it's on the internet?) She's catching on pretty quickly - since we can't hear whining, she doesn't get what she wants, so she changes her strategies swiftly.

Aside from the whining - and fights over who gets to sit where in the car that I remember all too well from my own childhood, and NOW I get why we all eventually had assigned seats - they've been great so far. They usually are, but now that they're getting older, we're trying to schedule more outings... having them (and us) all cooped up in the house all day everyday is just asking for trouble.

Last week I sat on the bandstand at the beach while Mum and the children wandered around looking for shells and rocks (They brought home quite the collection). We watched planes come in (Logan's right past the beach), had lunch, blew bubbles, and decided to come back for ice cream next time.


It was a pretty great day.

I was going to add a "but" to that last sentence, but I'd rather not: No more whining. Besides, it was a pretty great day, and I need to remember that part, let the rest of it all go. Let the Summer of No Whining commence, and help me to remember that it applies to grown ups and not just four-year-olds.

From the Random Files in my brain

Here's an interesting article about "dystopian fatigue". The author discusses her need for happier slanted movies and TV shows, leaving her looking for a little Glee or a Modern Family to brighten up her viewing habits. I agree with much of what she's saying, and hope that programmers are listening - I am so far behind on the heavier things that are sitting in my DVR, but I watched ABC's Comedy Wednesdays live, every week. (Except for Cougartown, which I refuse to watch because the title makes me want to puke.)

That said, I also just read a fabulous dystopian YA book that I can highly recommend - The Forest of Hands and Teeth by Carrie Ryan. It's gripping and moving, and I read it in an hour and a half, and am going to read it again, with post it flags and pencil at the ready, as soon as I can get my hands on the sequel. I chose it based on some great reviews, so I know it's not exactly an unknown book, but if you haven't read it, then you are missing out on something special. There were parts of this book that were ridiculously difficult to read, which I know some people shy away from, but, for me, it just shows what an exceptional writer the author truly is. Set in a far distant and horrifically frightening future, it could have been one of those books that was just a good read, but doesn't feel likely or truthful. Exactly the opposite is true - this book is REAL, zombies or no - and makes me want to gobble up anything else Carrie Ryan has written.

Bits and pieces, like I said.

"Feelings of worth can flourish only in an atmosphere where individual differences are appreciated, mistakes are tolerated, communication is open,

and rules are flexible -- the kind of atmosphere that is found in a nurturing family." - Virginia Satir


If you've been here for a while, then you know that I don't do New Year's Resolutions. I never really did, because I know how my brain works: I spend a lot of time coming up with resolutions, figuring out ways to accomplish them, figuring out ways to avoid accomplishing them, and then feeling guilty about breaking them. It's a vicious cycle that takes place approximately 742 times throughout the year, so I don't need an extra, mandatory date to create issues for myself.

Instead, taking a cue from Spoon Theory creator Christine Miserando, I pick one word that I try to focus on over the course of the year.

In 2008, the word was closer.
Last year, even though I didn't declare it here, the word I kept coming back to was breathe, especially since the year started off with us not knowing where we were going to be living, and then I spent 4.5 months in limbo at my Grandmother's house. Reminding myself - when I felt like I was accomplishing nothing, or that I was wasting time - that all that was absolutely required of me was breathing in and out, was a great help.

This year, I've put a lot of thought into a word that actually A) means something and B) will be easily applied (see cycle of resolutions above if you were wondering why it has to be simple). Some of the contenders were Truth, Choice, and Balance, all of which were good, but none of which seemed to be the perfect choice.

The word I came up with is Worth.

Looking at the definition of worth, I was pleased to see its roots are from Middle English, meaning to "become". Nowadays, it means the quality of something, the value of it. Something's equivalent. Something that is "good or important enough to justify" ie "advice worth taking; a place worth visiting". It can mean "excellence of character" or the esteem it deserves/garners, its "usefulness or importance". It's not just about monetary or material riches, but wealth of a different sort as well.


This year I'm going to focus on what things are worth, in a real and honest way. I'm going to think about what things are equal to, where excellence is actually found, and whether or not I'm truly valuing that excellence.

I need to be honest in ascribing worth - to things (Am I holding on to junk? Am I stockpiling things instead of valuing what I already have?); to people (Is it really worth another argument? Am I giving certain relationships their due or shortchanging them?); to time (What am I really spending time on vs what I want to spend time on. What is my time worth to me - and how can I show other people it's value?); to everyday actions (Is the taste of what I am eating worth the consequences for eating it? Is staying up all night typing the best way to be worth something in the morning? Since I know I won't take my pills regularly if I don't fill in those little days, isn't it worth it to fill in those little days even though I hate that job?); to the type of person I am trying to be (Am I trustworthy? Am I worth the effort it requires to be my friend? Am I sharing the true me with people who have proven worthy, or am I holding back?)... There are a million areas I need to look at in my life, a million places I could be putting what little energy I have to better use. So I'm going to try to be constantly asking myself... Is this worth it? What is this worth?

I think that living with chronic illnesses is all about asking this question - that there's so often a give and take, that there are so many reactions for every action. And, after a certain point, it gets overwhelming. It's scary, having to think every little thing through. It's frightening not knowing what the consequences for certain things will be. But that's not just living with a chronic illness, that's living. Period. So I have to stop being so passive about certain things, I have to start accepting the fact that the way I live - in the here and now, and the day to day - is my life, and I want to be doing as much of the choosing as I possibly can. So I need to start deciding what things are worth, what I am worth and how I can be more worthy.

It's funny, because I find that these keywords, or themes, or whatever you want to call them tend to stick with me. I still find myself asking "Does this bring me closer to my goals?" "Am I remembering to breathe?" has become almost a motto at this point. So I hope that focusing on the worth of my efforts & actions will become second nature to me by this time next year.

That seems as good a goal as any.

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Definitions for worth via Merriam Webster dictionary & Dictionary.com

One more day to post,

and there was more than one day I didn't think I'd make it, but here we are. I'll check back with you tomorrow! (Remind me that I absolutely posatutely do not want to try NaNo Writing Month next year, like I thought I might. No. Maybe in April, but definitely not in November. The End.)

"And Max, the king of all wild things, was lonely and wanted to be where someone loved him best of all"

Yes: this -

WANTED: A partner for richer or poorer and for better or worse and absolutely, positively in sickness and in health. A partner for fishing and French food and beach walks and kayak trips, but also for phone calls from physicians with biopsy results. A guy who knows that while much of marriage is a 50-50 give-and-take, sometimes it’s more like 80-20, and that’s OK, even when the 80-20 phase goes on and on. A man who truly doesn’t care what somebody’s breast looks like after cancer surgery, or at least will never reveal that he’s given it a moment’s thought. A guy who’s got some comfort level with secretions and knows the value of a cool, damp washcloth. A partner who knows to remove the computer mouse from a woman’s hand when she types phrases like “breast cancer death sentence” in a Google search. And, most of all, a partner who will sit in a cancer clinic waiting room and hold hard onto the purse on his lap

Because, also? This -

"What did it feel like, I wondered, to be kissed like that right out in public? Not like some passionate tongue-wrestling thing, just a kiss to declare: We are each other’s. I’d never been kissed like that. No one had declared me his, not for the whole world to see, anyway." - Story Of A Girl

and this

“He wished he knew the name of the gods who’d looked down on him the day he’d met her. If he could stack everything he owned, had done, had accomplished, on one side of a scale, it still wouldn’t out-weight the gift of her.” - Memory In Death

(and, if you want to read more about "Real/Everyday/99%/Omega/Sandwich Heroes" check out this Smart Bitches thread.)

I know these guys exist ~> I'm lucky enough to have some examples in a few friends and family members, so I know it's not too much to wish for; someone who loves you best. (I just worry if it's feasible for me, but I guess everybody does.)

It's November...

And we all know what that means: It's NaBloPoMo again!

It's time for an overflow in Google Readers, an influx of random postings, an avalanche of "what the hell do I write now"s!

I'm actually excited to be participating in my fourth annual NaBloPoMo, because I have a million half-posts which have been brewing in my brain (and in the draft folder) for too long, and for the sake of actually finishing them, having a deadline is probably a good thing. Which means you'll finally get my post on the new XMRV findings, a few posts about ableism that I've been trying to hammer out the details on, some of my thoughts on the blogosphere, more than a couple of posts with some pictures, and probably a ton of quotes, because that's the kind of mood I've been in lately.

And I'm going to do my best to comment (at least) once a day too, this month, giving myself a new goal to meet. I feel like I've been reading so many good posts, and then clicking away without saying anything. Mostly because it feels like all I have to say is "Me too" or "Totally THIS.", and those feel inadequate to me. But following a recent discussion with a fellow blogger, I realize that when I get those comments, they mean the world to me, so leaving them is worthwhile, even if it doesn't feel like it.

So there we go: Two goals, thirty days, and a blogger who feels like setting goals might be akin to tempting fate, but is going to do it anyways.

Deep breaths, everybody; deep breaths.