Well, so far,

this operation has not been as big a success in the whole "preventing multiple infections" genre as I might have hoped. I'm on my way back from my second infection since the surgeries, all though I will say that (so far, knock wood, cross fingers) the duration of this infection is hopefully of an atypically (for me) short duration. That is the hope anyways.

I've been pissed off because I told Lil Girl's parents to keep her at home last week when she was sick (which I hate to do) and I specifically did not go to my cousin's wedding this weekend because I was trying to take the safe road and keep myself away from germs and rest up and recover. And then, by Monday morning, I was sick as a dog. Again. So it really didn't matter that I didn't do the things I wanted to do; I got sick anyways. Realistically, I know that there wasn't a connection, but still: pissed.

I am recovering, though: my voice was coming back before I coughed it away this week, and my face wasn't as painful as it had been (before it took on it's new infection throbbing). One strangely unanticipated side effect from my septum repair is this odd tingling in my front teeth/roof of my mouth. The doc says this is because the nerve that runs there begins at the base of my nose, and I say it would've been nice if he had mentioned that before the surgery, but since it's supposed to go away, I'll just keep spraying Chloraseptic on it and drooling like I just got "woot canal".

I can't really judge how healed I might be, what with the new issues, but I'm working through a course of antibiotics (and got back from yet another horrid visit with the surgeon), so hopefully, by this time next week I'll be doing better and will be able to say "I'm healing" without all the caveats. Thanks for your support, in the meantime.

I do have a lot of things I want to do this summer, so keep fingers crossed that this is the END of summer infections for me.

Took me a while

but I'm finally posting to let you all know that the surgery went well, and I am recuperating. It is a process, which I hate (I'm much more in the mood for a recovery of the 'flip a switch' variety), but since I'm finally seeing/feeling signs of progress, I suppose it'll do.

I will say that it was a much more painful prospect than I had prepared myself for, the probable cause of which includes me getting an infection, and thrush, and being hideously nauseous to the point of dry heaves, and not realizing that this was not just a normal post-op situation, and trying to 'push through' it like a big dope. But, now it is starting to get better, and today I ate noodles (my first meal other than mashed potatoes, slush, jello or soup broth), so I know it must be improving.

The pain meds are killer, in that I find myself constantly loopy: Today is my first day back on the computer, and I have spent an hour and a half writing the three paragraphs you see here in the hopes that they will be logical and legible. I do not like this sort of high life, and am trying to cut back on the pain meds as much as possible, so that I can function.

Worst of all, probably, is the fatigue. This is not unexpected either, since the CFIDS makes exhaustion my constant companion, but I always forget how much energy recovering from illness/stress/operations takes, and then am shocked when I can barely life my head from the pillow sometimes. We had two weeks without Lil Girl, and I think my incapacity has shocked her too, now, which I hate. I don't like for people to see how weak I can get, and for her to see it (because I see that it worries her) makes me want to cry.

Or punch things. If I had any energy to punch things, but I can't cry because Did you know? That crying? After sinus surgery? Will HURT??? Well it will: Trust me.

So there's the update: Am doing better. Would not make this decision again if I had it to do over (but should probably reserve judgement until I see if it actually helps things). Need a large, large nap. And less woogy drugs. Miss you all, and will try to check in again really soon.


Love, NTE

O...K: that's different

Here are a couple more things that have caught my eye (via my Google Reader):

I don't care much for Russel Crowe, but I kinda have a crush on Scott Grimes, from way back in Critters, so I thought this was cute.

If you are not reading Sleep Talking Man, you are really missing out on some high quality, English-accented cussing. While asleep.

I want:

Some things to keep us busy

Since I don't know when I'll be posting next, I've got a couple of random posts in the queue to share... Mostly stuff that's popped up in my Google Reader that I think you should be aware of. The first is the latest batch of MLIAs that have caught my attention:

I'm a student teacher for a kindergarten class at a local elementary school, and today the lesson plan was about honesty, so the head teacher asked one of our students, "George Washington not only chopped down his father's cherry tree, but also admitted it. Why do you think that his father didn't punish him?" The student replied, "Because George still had the axe in his hand." That was epic. MILA

Old aunts used to come up to me at weddings, poke me in the ribs and giggle, telling me, "You're next." They stopped after I started doing the same thing to them at funerals. MLIA.

Today in class, my professor had stapled McDonalds applications to the tests of all the people who failed. MLIA.

Today we had silent reading time in my sophomore english class. Ten minutes it, I notice that nobody else was reading and the entire class was staring at me. I was then informed that when I read silently, I'm really reading out loud with accents, facial expressions, and different voices for each character. My teacher has decided that we will no longer have silent reading time, and I have been volunteered to host "story-time" for the first 30 minutes of each class. MLIA

In my Ecology class I sit in front of this guy whom never talks. ON this particular day he was staring at the fish tank. Then he looked up at me said said with a serious face. "you think i would get in trouble if I slapped the teacher with that fish?" MLIA.

Today, I was on a flight. One of the three flight attendents said before taking off, "Hello, I'm Cindy, I'll be one of your flight attendents today. The others serving you are my ex-husband, Steve, and his new wife, Becky. We are going to turn the lights off now because Steve looks so much better in the dark. Have a nice flight!" I could not stop laughing. MLIA.

Today I walked into a horrid break up, I was really upset for the girlfriend when the boyfriend said "Im dumping you because Im too good for you." But I couldnt stop smiling when she replied, "I'd like to see things from your point of view but I can't seem to get my head that far up my ass." Whoever you are, I salute you. MLIA.

Today, I was in my American History class, and the teacher was auctioning donuts to prove a point. The bidding was up to sixteen dollars for a dozen when one guy yells "My eternal soul." To which the teacher responded, "I don't think you understand that I'm looking for something worth more than sixteen dollars." Not only is he now my favorite teacher, he also just earned a spot amongst my hall of fame of awesome people. MLIA

Today, I had to sell chocolate bars for my school club. Instead of calling them chocolate bars I called them Dementor Bars with the slogan, "Your best deference against Dementors!". I was the top seller. MLIA

Today in class we were watching the 6th Harry Potter movie when it came to the part where everyone raises there wands cuz Dumbledore died my whole class raised there pencils including the teacher who looked like she was going to cry and my best friend had the most serious face ever. i love my class MLIA


Today my mom was reading through my 13 year old sisters disclosure document for one of her classes. One part of the document asks parents to tell the teacher a little bit about their child. My mom proudly wrote, "Paisley believes she is preparing for the Zombie Apocalypse and spends her extra time building tunnels from our house to Costco, Wal-Mart, and Home Depot so she will be fully prepared." MLIA.

Last year, a girl I babysit was graduating from preschool. When up on stage, they asked her what she wanted to be when she grew up, and with a smile on her face she told the whole audience she wanted to work at Mcdonald's. After the presentation was over, her mom asked her if that was really what she wanted to do and she replied in all seriousness "No, I really want to be a paleontologist but I just wanted to see the look on your face!" She was 3 at the time. I was proud. MLIA


Well, I hope those gave you some chuckles. I hope to be back soon, but enjoy the filler (entertaining filler! I promise!) in the meantime.

Reasons to cancel the surgery

(via my screwed up, please let me cancel the surgery! brain)

- Because the Lost series finale is on Sunday, and it is like a total pop culture moment (that I will be totally out of it for). Also, it will make me cry, and my face will probably hurt too much for crying.

- Because 6:30 is just too damn early in the morning.

- Because I have been availing myself of Dr. Google, and neither of us are pleased with what we see there.

- Because my throat isn't even hurting right now, and that is ridiculously rare! (Also: Do not currently have sinus infection! This is beyond rare... and should be appreciated.)

- Because how the hell am I going to take my regular meds? (Note to self: call tomorrow and see if there is liquid Lyrica.)

- Because... I don't wanna do it?


No: The surgery is set (fingers crossed, and barring any news from the pre-op people who still haven't called me), for 7:30 on Friday morning. I'm the first one in, which means I should also be the first one out. Which is good, because waiting is not my strong suit. All those people who comment on my 'patience' have never had to sit in a hospital waiting room with me while my mind buzzes ahead at 732 miles an hour. (Actually, some of them have, but usually I am good at hiding the buzz from people who aren't really paying attention.)

Of course, I am now coming up with a zillion different reasons why I should not let them cut open my nose or tear out the little bumps in the back of my throat, but I realize those are just my little anxieties popping up, and I try to pop them right back down. It's like one of those Whack-a-mole games: Up - Bam! - back down. Back UP - Bam! - back Down. I just have to keep bopping them on the head long enough to get to the hospital on Friday morning, at which point Mum will make me do it whether I want to or not, because she had to leave the house at 5:45 in the fricking morning.

Although I realize that it's not - in all likelihood - a life altering procedure, I'm pretty nervous about the whole thing (in case my endless blathering on about it here hasn't made that pretty obvious), but only because ... well, if you've been reading any of the blathering over the last 4-5 years, then you know why. Because medical science and NTE's body are not friends. Because whatever reaction you say it is impossible to have, then that is the reaction I will have. Because I'm in a place right now that isn't horrid and unlivable, and I am loathe to poke the bear and wind up there. Because if I wasn't nervous, at this point in my life, with this body and all of my experiences, then I would have to be pretty ignorant.

I know there are lots of people - somewhere in the midst of all those Temporarily Able Bodied people we people with disabilities talk about - that there are people who actually get up in the morning and never give a second thought to whether or not their body will respond in the way it ought. Who never have to second (third, fourth, fifth) guess a doctor's recommendation, or worry that things might not work out for them. I don't remember it, exactly: That ignorant feeling of being in control of my own body and what it was capable of, but I know that I am not one of those people anymore.

Back when I was dancing, there came a point, in the year or two right before I got sick, where I was constantly twisting my ankles. I must have sprained the right one 4 times in the course of a year and a half. And I mean seriously sprained - and even a slight fracture once. But I was 13, 14, 15, and it meant nothing - a week, two weeks, and I would be back dancing again, good as new. It honestly didn't occur to me that there could be any other outcome.

I was more fearless then: If I sprained something now, I would probably never attempt that activity again... I avoid things that cause even the most minor of injuries, go out of my way to avoid even the tiniest bit of extra pain.

Because here's the thing: Being in pain changes who you are. It changes how you see the world, how you fit into the world, how you interact with the world. Everything is a risk now. Opening my eyes, rolling over, tying my shoe. It's all a big deal, it's all a potential threat. And that's a horrible way to live, so I suppress it as much as I can. I don't overthink the little things (at least I try not to). I try to offset the extra neck tension I'll get from sitting at the table for dinner with a little extra ice pack time, or pencil in a hot shower because I decided to sit on the floor with little girl today.

You figure most things out, because you have to live.

But asking for extra pain? Going into something that is going to hurt, no matter what - even knowing that it's probably essential in the long run, well that's just incredibly risky to me. Because I can't assume that it's going to be fine, and I can't pretend that the extra pain - and oh, boy, does everybody agree that there's going to be extra pain - isn't almost a dealbreaker for me. And I shouldn't have to pretend, but in real life, I do.

The number of people - related to me, who have been witness to my illness from the beginning people - who have played oppression Olympics with me ("It's not as if it's a tumor their taking out/you're having chemo/you're losing something important" or have asked me what the "big deal is - you'll get to have tons of ice cream"? Is frustratingly high.

"But what are your other choices?" they ask. "You're going to keep getting sick right? So just let them do the little snip here, little poke there --- maybe get your tummy tucked or your boobs shrunk a little while you're under, ha ha --- and then it'll be fine" they say. (And no: I'm not talking about you, who was actually thinking about how combining surgeries would be helpful re: not having to do anesthesia twice. I'm talking about the more thoughtless among us).

Right, because A) This is totally a joke to me. and B)You're not the one who has to live in my body, in my level of pain, now or then. So you can't really tell me whether or not it's a big deal. You just have to take my word for it - this is a big deal. I know it's not cancer or whatever the hell you think would be a big enough reason for me to worry, but I'm still worried.

Let me just say this again: Even if everything goes absolutely 100% as it should, by the book, perfect: This is still going to be a big deal for me.

Because all of those little sad faces that they give you in the ER so you can point out your pain? None of them is going to cover me anymore. Because I am already at the saddest face, I am already as high as the numbers will go, and now I'm volunteering for more: That is a hell of a big deal.

And I realize, as I am trying to find a conclusion to this very wandering post, that nobody who needs to read it will read it, because they don't know it's here. (Thank god!) But that maybe just writing it was the point, because all of the sudden I don't feel so ridiculous about being completely stressed out about this - It is a Big Deal for me, and it's something that I don't have to apologize for being a bit anxious about. So if I want to brainstorm reasons to back out of it, knowing that I won't actually back out of it, so be it.

Now, somebody give me a really good one, because "getting all the ice cream I want" is no longer on the pro side of the list: I'm an adult, and if I want ice cream, I will damn well eat it, surgery or no surgery.

Maybe I'll just add "because I'd rather go to Dairy Queen" to the list...

So I'm sitting here

at quarter to three in the morning, after playing Family Feud on Facebook, and browsing on Etsy long enough to add a whole new page of favorite things, and typing up two long overdue, rambly and probably non-sensical e-mails, wondering what the hell I am going to do.

This surgery is on Friday, and - as of today - that is still a go. The liver issues seem to be under control (2nd set of liver tests = no problem, just like I suspected they would be), but I've got another round to go before I get the all-clear.

I do not like to be in limbo, and yet I seem to be spending an awful lot of time there.

So I am assuming that I am having the surgery on Friday, as in a week from today, and holy crap that is soon... which means I now have to figure out all of the things I need to do before Friday, in order to not have to worry about them after the surgery.

I've been stockpiling books (which I do anyways), and magazines that take little thought or effort. I've got a week or two worth of funny shows on my DVR that I specifically didn't watch, and a Netflix queue (instant and through mail) as long as my to-do list. I'm going to fill out all the paperwork for anything that might be due in week or two following the surgery - bills to be paid, mail to send, etc - today, and I'm saving the major clean up for Thursday, because I know I'll just mess everything up again anyways if I do it now.

I wanted to have a sleepover this weekend with No Longer Youngest Nephew, partly because I don't know when I'll be up to it again, and partly because I knew he'd be a great distraction, but it turns out he's got a Sunday baseball game, so (since I don't drive), that fell through. I've also invited College Roommate/Best Friend to come and visit, but she's usually weekend booked all the way through the end of the school year, so I'm not holding out much hope there either.

But I think if it's just me sitting here, things could get pretty dicey pretty quickly, so I'm just going to think of LOTS of things that need to be done between now and then, so I don't have time to obsess. Because obsessing is something I can be very good at, and it could lead to chickening out, which I am determined not to do, so, therefore (and, Off Topic: I really think the keyboard ought to have a Therefore symbol - maybe instead of the #... those three little circles in the shape of a triangle that came in so handy in freakin geometry, I could use those on my keyboard, just saying): Keeping Busy.

On the one hand, this is relatively minor surgery.

On the other hand, this is my body, which never reacts as the doctors say it 'should', and my face, which is already in enough pain, and myself, which also has enough pain and exhaustion to deal with, thank you very much... so this is the hand that will lead to the obsessing.

I'm trying to focus on that first hand instead. And this magical third hand that appeared out of nowhere to remind me that I will be under anesthesia, which means I will get some SLEEP. Real, actual, knock-me-out for a few hours sleep. The kind that my body has completely forgotten how to manufacture, and I will take whatever I can get. Artificially induced or not, I'm going to focus on the fact that a week from today, I will be taking a NAP. I know I cannot articulate exactly how awesome that will be, but let's just say that it almost makes me forget that they're going to be cutting out pieces of my body and sticking metal hooks up my nose. Almost.

In the meantime, I've got the itchy scratchies, but no actual energy to work them off, so I hope you'll excuse a few rambling blog posts, particularly if they're just serving as poor reminders to myself that this is not something to get all wimpy about.

Or about how I played Ms Pacman for the better part of two hours yesterday, and had over a million points because this was an online fake version of the game and when you ate the little 'turn the ghosts blue' pellets, the ghosts never changed back to their original colors unless you ate them, thus giving you the run of the board for ridiculously long periods of time. Ms. Pacman Champion, right here.

Where I've been

Nowhere exciting, unfortunately.

Just feeling a little bit more rundown than usual: Allergies and a spring cold - along with a birthday party, a baby shower, a double christening and a wedding shower - have left me feeling the full weight of the Fatigue part of Chronic Fatigue Syndrome. I'm still waiting to hear if my surgery is on or off - if it's on, it's scheduled for Next Friday, which - how the damn hell did the end of May get here so fast? I'm loving my new computer, which is quick and not-complaining and purple-ish and a little heavy but I am getting used to it. I am mostly doing mindless things, and have so many unread feeds in my Google Reader that I almost don't want to turn it on (and some days, I just don't). There is very little exciting news here - SisterCh moved in with her fiance, leaving me as the only child still at home, and that is not the most awesome feeling, let me tell you. I am weeks behind on phone calls, because every time I look at the phone I get a feeling of just "ugh" and then I roll over and read a book because I don't have to think of what to say next. I am very sorry if you are reading this and are one of those people I haven't called... I'm getting there, I promise. Poor BestFriend/College Roommate and I haven't seen each other since November, I think, and I keep seeing her - and her kids - Christmas presents in the corner and cringing, because it's mostly my fault that we haven't met up, and yet I just don't have enough umph to say "Come on over!"

And this post is very whiny, which I do not enjoy, so instead of keeping on in that vein, I'm going to say that Lil Girl told me the other day that I am "Beauteous", and I wanted to give her a pony. And that my cousin's twins (now 2 and almost a half years old) finally came over for the first time a few weeks ago, and it was amazing to see them running around (one with his feeding tube and all, the other avoiding the tube expertly), laughing, and seeing their mom laugh did me some good as well. And, finally, No Longer Youngest Nephew pitched in his first Little League game this week, and retired his side with no hits!

I'll be back soon, I hope: Just gotta think of something to say.

BADD 2010

In honor of Blogging Against Disabilism Day, here is my (long-promised and hopefully coherent) post on Oracle, superheroine extraordinaire:



For whatever reason, I was juiced about Halloween this past year: maybe it was the idea that we might, in our new house, have more than three trick-or-treaters, or maybe it was that I'd been feeling like crap and was looking for a reason to be excited - who knows?

Whatever the reason, I decided at the last minute to see if I could throw something together. And so, that Saturday morning, I was searching online with a (pretty great if I do say so myself) idea in mind: Oracle. DC Super heroine, former Batgirl, and wheelchair user extraordinaire. The best part is that since she's a behind the scenes kind of girl - at her most basic level, she's a computer genius who supplies Batman (and numerous other heroes/heroines) with the intelligence necessary to fight crime - she can wear whatever the hell she wants. Jeans, mostly. Sweatpants, sometimes. Excellent: I can handle sweatpants! Accessories? Laptop computer: Check. Bluetooth device: Check. Superintelligence: Easily faked. (Ok, yes she has red hair, but it was dark. And trick-or-treaters are little, so I decide to just pretend there.) So, although I did wish I had a shirt with a bat insignia on it, I figured I was set. What I didn't expect, while searching to make sure my mental picture of Oracle matched up with the reality, was how much abilism I would have to wade through in relation to the character of Oracle herself.

Now, before I get any further, let me just state, for the record, that I am absolutely a newcomer to the comic book world, and I have absolutely no experience with the fandom, the world building, the story arcs: I don't know if Oracle ever had to fight the Riddler, or if she battled Catwoman, or if, as a comment I wandered across suggested, she and Professor Xavier are getting it on in private - because people with disabilities only date other people with disabilities, don't ya know - : For the purposes of this discussion, I will gladly cede the point that I am NOT a comic book genius, and that there's a lot about the DC Universe that I don't know or understand. I am not even going to consider myself worthy of writing a critique of the character, or comic books in general, in regards to different forms of discrimination - the majority of this post is going to instead focus on the ablism inherent in the online discussions of Oracle - that is, the arguments over her fitness as a superheroine, her perceived uselessness when being "confined to a wheelchair", and the unapologetic ablist terminology & attitudes that were displayed in these various discussions.

To start with, there's a lot of argument about whether or not Barbara Gordon is a better character now (as Oracle) than she was as Batgirl, and I'm sure that's a valid discussion to have - which incarnation of a character is the best, why is it the best, etc. What I think are distinctly less valid are observations like -

...Tate comments, “It's ridiculous to think somebody wakes up thinking how lucky they are to be confined to a wheelchair, and yet the attitude around DC and among the fans is that Oracle is the better character over Batgirl because of her handicap. Rubbish. Batgirl has fought more crime and done more to aid Batman as Batgirl than she has as Oracle. Batgirl has saved Batman's life on numerous occasions. Oracle has not. Barbara in this incarnation is not a bad character, but she is not better because she no longer hunts the night in cape and cowl.

wikipedia

No: People with disabilities are not better because they're disabled. They're also not worse, either, and that certainly seems to be the implication here - Oracle is not as good as Batgirl, not as worthwhile, not as valuable. Her intellectual skills - genius hacker and supplier of crucial information - are not on par with the kicking and swooping and physicality that she exhibited as Batgirl. She "saved" Batman when she was Batgirl, but that information she provides is apparently not life saving enough. (Although I seem to remember at least one occassion that this was exactly the case.) The alliance building she did with the Justice League of America, the founding of the Birds of Prey (an all female superhero team), her photographic memory, and the fact that she remains a master of numerous martial arts (even though she is "confined" to her wheelchair) is just not 'life saving' enough?

Somebody probably should have told her she was just wasting everybody's time and getting in the way.

Then you can compare that attitude with this one -

James B. South's chapter "Barbara Gordon and Moral Perfectionism" in the 2004 book Superheroes and Philosophy analyzes how the changes in Barbara's life "from librarian to Batgirl to Oracle" drive her to pursue a higher self, illustrating the philosophical theory of moral perfectionism.

wikipedia

And here we get the ideal SuperCrip - able to "get past her bitterness" over being viciously attacked and to overcome the challenges that being "wheelchair bound" must present. But ablisim goes both ways: When you are attributing characteristics to a group of people because of their disabilities - whether those characteristics are negative or positive - you are using stereotypes and ignoring their real value as people. African Americans are not all good at basketball, women are not all bad drivers, and people with disabilities are not pure or without moral imperfections. See this excellent post for all the reasons why being a Supercrip is not only unrealistic, but damaging as well. (And yes, I don't need you all to point out to me that I am, in fact, discussing comic books, where the characters are supposed to be superheroes: What I'm talking about here is the denial of a person - or in this case a character -'s humanity based on a faulty system of beliefs. All I'm saying is that expecting her to just "get over" her attack, and that she will instead buck up & be an inspiration to all is not, in fact, a reasonable path for her character arch to take.)

There's also a large dose of disabilism to be found in the parts of Oracle's storyline which negate her disability completely - In the short lived television show based on Birds of Prey, (which was, incidentally, my first introduction to Oracle), the character is played by Dina Meyer, an able bodied actress. I'm sure the creators of the show would explain that by saying that they had to show Batgirl's story in flashbacks, or the inclusion of the inevitable storyline where she can once again 'miraculously' wiggle her toes, but instead of that being a reason for not using an actress with an actual physical disability, this is rather further proof that the ways individuals with disabilities are portrayed in the media are inadequate. In addition, in the comic books, there are times when Barbara Gordon's body is possessed, and those beings are able to "bypass her paralysis and make her run and fight like a normal person but when they leave her body her paralysis will return completely."

"Like a normal person," huh? That's awesome - There was some discussion revolving around the fact that she's probably "disappointed" when the person WHO POSSESSES HER leaves, because then she's back to being "crippled".

Seeing disability labeled as abnormal is not the only term I had an issue with: Articles, posts and comments were littered with the words handicap, crippled, immobile (although she's clearly mobile), forever confined to/stuck in a wheelchair, and a lot of talk about the fact that she's hindered (rather than empowered) by her chair. Terms that are not only not 'politically correct,' but harmful to the accurate portrayal of individuals with disabilities. There's also the idea that she's both useless and an invalid, and, of course, there's a lot of talk about Oracle being "cured".

The question of the cure is actually one of those areas where the intersectionality of ablism and sexism inherent in (but certainly not restricted to) comic books is made only too obvious:

Just to drive home the point that Barbara Gordon's crippling was sexist, a few years later Batman was also crippled. How long did he spend in a wheelchair? Oh, about a year, and then as a SUPERHERO and PROTAGONIST he was able to make a miraculous recovery. Because Batman is a MAN and a HERO. And Batgirl was disposable.

Comment onMyriad Issues by Rusty


So there's one double standard, in that ok: Yes, I will grant that Batman probably could figure out a lot of ways to 'cure' her disability, or that Barbara herself would probably, in the way of all superknowledgable superheroines, be able to come up with a pretty good idea of how to accomplish such a feat. But that doesn't mean she should be cured, or that she's any less vital of a character because she hasn't been cured. The discussions revolving around the idea of a cure are some of the most impassioned - people talk about how useless and ridiculous it is that Batgirl hasn't been cured yet, invalidating Oracle completely: If Barbara can only fight crime/be worthwhile/be important when she is Batgirl, then Oracle is a wasted character, nothing more than a "girl in a chair".

I am also largely setting aside the idea that her "crippling" by the Joker is considered by many to be one of the most anti-woman plot devices in the DC Universe (which is full of anti-women storylines, unfortunately), because I just don't know enough about it, having not yet read the issue myself, although I will point you in the direction of a very interesting discussion about Women in Refrigerators vs Dead Men Defrosting, (See Here .
I am going to mention this piece of information, however, because I think it says so much about how 'well-thought out' the creation of a well-rounded character with a disability really was:

Brian Bolland tells this little story in his recent book The Art Of Brian Bolland:

"Back in Northampton, Alan had to check with editor Len Wein how DC would feel about him crippling one of its key character, Batgirl. Len phoned back. His precise words are not printable here, but the gist of it was that it was okay. The Joker had, after all, to be shown to be a seriously nasty piece of work."

The words that Bolland is too much of a gentleman to reproduce, but which have been retold in various circles, were: "Cripple the bitch!"

And that pretty much sums up the attitude that allows female characters to continue to be mistreated in comics (at DC in particular, it seems).

Kate, Digital Eraser

Still, from such an offensive beginning, Oracle has become a favorite heroine for many. Even amidst all of the disturbing comments and discussions I was able to find online, there were a lot of positive things being said as well. Most readers described Oracle as invaluable, powerful, and just all around awesome. Some of them talked about how inspirational she is a character living with a disability without being too corny or 'movie of the week', and the writer who 'rescued' Barbara after her attack and gave her her own storyline seems to have a pretty impressive attitude about the whole thing, IMO:

We wanted her to cope with what had happened to her and becoming, in many ways, more effective as Oracle than she ever was as Batgirl. And we knew that others with disabilities might look at her and feel good reading about her...I don't think people 'dance around' her disabilities as they don't want to focus on them, but on her character. These shouldn't be stories about a disabled person; they are stories about a compelling fascinating character who HAPPENS to be in a wheelchair and I think that's correct. Barbara isn't her handicap; there's more to her than that.[41] ”

wikipedia

I was shocked by some of the dis/ablism I was confronted with as I wandered around looking for an Oracle action figure (you can see one here, if you're interested), but I probably shouldn't have been. It's not news to me that there are people who say they'd "rather be dead" than have to live "shackled to a chair"... I've met more than one of them in person, unfortunately. But there's a lot of good stuff out there too, a lot of positive feedback on a pretty unique character. I'm going to wrap this up with one last quote (originally intended to discuss sexism, but I think it works pretty well here too):

"Comics have always attracted intelligent people as fans, especially among women, and the idea of a superhero who uses her brains instead of her fists to defeat criminals is one that has deep attraction, especially with the rise of the Internet. Batgirl evolved from being a dilettante librarian to a tech-savvy geek girl, just in time for the Information Age. Her storytelling engine seems to constantly reflect the evolving role of women in society, and her popularity reflects the fact that comics are no longer just a boy's club.

GoodComics

I hope that as society continues to change, and comic books evolve as well, that the role of disabled characters is one that will continue moving in a more positive direction. Besides: A librarian turned techno-geek turned super-heroine? Tell me that's not the most awesome Halloween costume ever. (Actually, it was not: since nobody in my family reads comics, I spent the entire day trying to explain who Oracle was. Oh well, I still rocked that bluetooth.)
----------------------------------------------------------------------

Thanks for reading, and for participating in BADD. Don't forget to head over to the Goldfish's place for more fabulous posts!

Mark your calendars -

Next Saturday is the 5th Annual Blogging Against Disablism Day, hosted by Diary of a Goldfish. You can head over there to sign up, should you wish to participate... it's an all access blog event, so as long as you can think of something to write about abelism (which is the US preferred term, as opposed to disablism), you are more than welcome. Allies: all aboard!

I've participated since for the past 3 years (here are my 2007, 2008, & 2009 posts, if you're interested), and am always impressed by the quantity and quality of posts that get included. (Don't worry if it takes you a week to get through them all... trust me: they're worth it.)

The best news is that since BADD also happens to be falling on Free Comic Book Day, I've decided to finish my damn Oracle post from waaaaaaaaaaaay back in October! Because, honestly, it's been sitting in the draft file long enough, and I hope it says some pretty interesting things about ableism, sexism and how ingrained they are in our popular culture. (Of course, it may also suck, and many people will read it and say "huh?" but I'm hoping not.) Either way, I'm motivated to finish editing it and put it out there.

If you can think of something to say about abelism ... People using the word "retarded" really starting to piss you off? Notice someone totally disregarding an individual because of their disability and wish you had known what to say? Wonder if there even are any people with disabilities in your community (Spoiler Alert: There are), because you hardly ever see any? All of these things would be appropriate to talk about next Saturday! The more perspectives we get, the better off we all are.

...and then I disappeared for a little bit

Just plum wore-out, folks. Kiddos are on vacation (we had all four of them, plus SisterS at one point this week), my sinuses are not, and after two parties last weekend (one over an hour's drive away), I am feeling horrid. Just worn out. And Sore. (That should probably be in all caps, and bold, and italics, and underlined, and rainbow colored, just so it has enough emphasis.)

Good news is I'm typing this on my brand new Dell 'puter, which seems to like me a lot, which is nice. (Once I decided I couldn't afford the Mac, it made my decision/life a lot easier... and now it's so purty that how can I complain?)

Bad news is I can't think of anything to say right now (besides ouch), and so I'm just letting you all know I didn't disappear.


Am still alive. Just resting. (Or attempting to, anyways.)

Recently, I received an advocacy alert from one of my various CFS/ME groups, concerning the possible inclusion of CFS in the newest version of the DSM. The DSM - Diagnostic and Statistical Manual of Mental Disorders - is the American Psychiatric Associations' guidebook when it comes to mental illnesses, and the idea that there would be a category under which CFS might (or could realistically) be grouped is terrifying. It's a huge step backwards in the fight for funding, understanding, treatment, and all of the other things patients with CFS often don't have the energy (or time, or resources) to continue to battle without end.

I took a while to craft a letter I felt managed to point out all of the issues that are inherent in such an inclusion, while also trying really hard not to abelist towards mental illnesses and their severity either: I really didn't want to say "Don't call us crazy!" and expect that that would be a worthwhile argument. It isn't - crazy is a word I'm trying to erase from my vocabulary, in the first place, but in the second, there's nothing worse about being mentally ill than there is about having any other form of chronic illness. So I didn't want my letter to make it seem as if I were saying, "Well, we have all these issues, but we're still better than that": Instead I wanted to make clear that having a classification that could include CFS (and, as you will see in my letter, just about any chronic illness) is a setback because it does not allow for a true understanding of our disease process - and that can have dire consequences. At least, that's the point I hope I was making... I'm open to (constructive) criticism, if you have any before Monday, which is the deadline for comments on this particular version of the diagnostic criteria.

I'm writing to express my concern about the possible inclusion of Chronic Fatigue Syndrome as a "functional somatic syndrome", under the newly created category of Complex Somatic Symptom Disorder in the DSM-V.

First, I take issue with the vague and almost universally applicable criteria under which the CSSD could be diagnosed. Symptoms like
"A belief in the medical seriousness of their symptoms despite evidence to the contrary"; "Normal bodily symptoms are viewed as threatening and harmful"; "High level of health-related anxiety; "A tendency to assume the worst about their health (catastrophizing)"; &"Health concerns assume a central role in their lives." are so ambiguous as to be useless. Under this criteria, I would say that ANY chronic illness could be included as a somatic disorder. If you have heart disease, your "health concerns" will - if you intend to survive - most likely assume a "central role" in your life, and many previously "normal" symptoms could now be considered as potential threats. If you are diagnosed with cancer or HIV, I'm going to assume that a certain amount of "catastrophizing" would take place - there have been numerous books written about how a diagnosis of such an illness is not a death sentence: Would there be a need for those books if people didn't automatically assume that certain illnesses could mean the worst for them?

Creating this new category is to dismiss the very real worries and concerns of ANY patient, with ANY illness: It fails to take into account that, when confronted by an illness you cannot predict, you may sometimes become discouraged, fear the worst, or wonder if your newest ache or pain will be as devastating to your life as the previous one was. It takes what is human about a patient - the fact that they might make mistakes, or become anxious about something that is having an intense impact on their life - and turns it into something that is abnormal, something that should be seen as an illness. In so doing, you erase the humanity of all individuals with chronic illnesses.

If you fail to see that some of these behaviors - for example, having a high level of "health-related anxiety" - can, in fact, be positive coping mechanisms, you are invalidating the needs of a chronically ill patient. If a patient is proactive - if she sets a schedule for taking her meds, follows a nutritious diet, incorporates periods of rest and exercise as needed throughout the course of her day, & keeps up on the newest treatments and research regarding her disease, then yes: it is fair to say that "Health concerns are a central role in her life." However this is only to her benefit, and EXACTLY what doctors advise their chronically ill patients (and, with specific changes, their well patients) to do, no matter what their diagnosis might be. And yet, you plan to classify that as yet another symptom for a "disorder" that has no real medical definition. With "symptoms" so broadly and subjectively defined, the potential for misdiagnosis, and abuse towards patients whose illness are atypical, medically complicated, misunderstood, or rare is extremely high and frustratingly preventable...by simply excluding such a code, which would likely do more harm than good.

What other forms of harm, besides the very real danger of ignoring the physical deterioration of a patient due to misdiagnosis, might occur? Consider a recent study out of the Netherlands, which concluded that it is "unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as Cognitive Behavior Therapy and Graded Exercise Therapy", two of the most widely used therapies for ME/CFS in the UK, and both recommended treatments for various current forms of somatoform disorders, or the fact that most SSRIs (which are also considered applicable treatments for somatoform disorders), tend not to be effective in treating CFS, and carry the risks of many serious side effects.

Somatiziation is the physical expression of psychological symptoms, and for the APA to claim, as experts and medical authorities, and with no room left for doubt, that the symptoms of CFS begin as psychological is not only to contradict the World Health Organization (which classifies it as neurological in basis), but also the US Centers for Disease Control (which stated, in 2006, that "There were no other factors, psychological or biological, that held up under thorough analysis"). It ignores the fact that in the UK ME/CFS patients have been banned from donating blood for over 20 years, that they were recently prevented from doing so in Canada, and that they are actively discouraged from doing so in the US. It also does not reflect a complete understanding of most of the current scientific research including viral implications, numerous biomarker studies; studies with immune system findings, neurological findings, CNS findings, genetic findings; and the complexity and interconnectivity of a disease like CFS. And it ignores the voices of the many experts and medical organizations focused on CFS research, including, but not limited to: Drs. Bell & Cheney, Dr. Komaroff, The Whittemore Peterson Institute, Dr. Klimas, & many others, who continue to search for the cause, treatment, and possible cures for this horrible disease.

I fail to see why, when biological science is stumped (or, in the case of CFS, more likely just ridiculously underfunded), putting the blame in the heads of patients is considered an acceptable solution. To include a definition of CSSD that could be applied to conditions like Chronic Fatigue Syndrome or Fibromyalgia is to forget the long - and embarrassing history - of unjust accusations of patients - or patient's families - "creating" their own illnesses - In the not too distant past, mothers were blamed for Autism, Type A personalities were blamed for causing ulcers, and both Multiple Sclerosis and Epilepsy have long been tainted by the incorrect assumption that they were caused by patient behavior.

Also important to note is the disconnect between medical science's understanding of men's bodies (and, therefore, diseases that are more likely to strike men) vs medical science's understanding of women's bodies (and, therefore, diseases, like CFS and FM, that are disproportionately more likely to affect women). From the fact that the term "neurasthenia" (aka "the vapors") - a term which the DSM itself tossed out years ago - is still being used in the UK to label CFS patients, to the woefully inadequate funding and research into diseases that have high populations of female patients, and how this would only contribute to the misuse of a CSSD coding.

I wish to be clear; Of course, for any person, chronically ill or not, there can be physical effects of psychological stress - You have only to suffer through one tension headache or witness a child so nervous that he loses his breakfast to know that this is true. But to state categorically that all of the symptoms of CFS patients (which can include sore throats, chronic infections, post-exertional fatigue, abdominal pain, unrefreshing sleep, irregular heartbeat, vertigo, muscle and joint pain, mental confusion, tender lymph nodes, allergies, night sweats, hypersensitivity to light, sound, smells, heat or cold, abdominal pain, blood pressure problems, and many, many more) can - definitively - be attributed to psychological factors, is to propose and support a falsehood.

I'd also like to refer you to a recent "Submission Re: DSM-V and ME/CFS" compiled by Professor Malcom Hooper and Margaret Williams of the 25% ME group (submitted 3-20-10) for an enlightening discussion about who would benefit from the inclusion of CFS as a CSSD, and the conflicts of interest evident in the DSM-V Somatic Symptom Disorder Work Group. (This work also includes a good summary of why the criteria are "so wide & non-specific that they have little clinical utility,"which I have already discussed.)

In conclusion, I urge you to consider the consequences of such an inaccurate and regressive inclusion - the potential for misuse/abuse/overuse of a non-specific coding for millions of affected patients; years of unhelpful and potentially dangerous drugs and therapies for patients who go to their physicians looking for answers; further & inhumane setbacks in the search for the real illness that is affecting these individuals, as well as the research that is necessary to find a cause, treatment & cure; and putting the DSM-V on the wrong side of medicine (and eventually, history).

I appreciate you taking the time to read my thoughts and concerns, and hope that you will take them into consideration as you make your final recommendations.

Sincerely, etc etc.

You can find the full criteria Here, as well as a link to where you can submit your own comments.

I did mention, right,

that I hate doctors?

So, you may remember that I was all on board train "face surgery" as much as any person could be anyways, when last we discussed it. Well, today I had some (unrelated) blood tests, and my liver came back SNAFU. My liver is like that - sometimes, it is fine and dandy, other times it grows things named after cartoon characters from the 1980s (Looking back, I realize that I was not actually writing this blog way back when I developed my hemangioma, which is pronounced exactly as it is spelled: He-Man-Ge-Oma, but that's what I am referring to). It has been labeled fatty (which hurt both our feelings), been ruled out as a donor organ, put on (and taken off of) various medications, and sends sudden, terrifyingly high bad cholesterol numbers to scare lab techs into making the doctor call me back on the very same day. Of course, the fact that those cholesterol numbers also drop dramatically every other time doesn't seem to bother them, but for right now, I'm supposed to be impressed that they are "startlingly high" for someone so young. (I'm not impressed, or bothered, and will just wait till next time before I panic, thank you very much.)

But aside from the cholesterol, my liver enzymes are elevated, which means ... what? Something. Maybe. Nothing? They are Not Sure. They want More Tests. They are Reviewing My Records. - Or, they will be doing all of that, they promise, when they return to the office in a Week and a Half. :sigh:

Which means the sinus surgery may have to be postponed, which I am not pleased about because, well, now that I am on board the train, I would like it to leave as soon as possible, so that I can get off of it as soon as possible. I do not like waiting. I do not like new problems to pop-up when I do not have the energy to deal with them. I do not need some new Skeletor to face, and I'd rather not have to deal with a recurrence of his arch-enemy either (Because, although all that that required was monitoring, liver ultrasounds - any ultrasounds - and me of the FM pain/tender body parts, do not get along well).

I'm just having the kind of the week where things seem to be crumbling/sucking no matter what I do... things that start off with the best of intentions are suddenly horrible and poisonous, and I have no idea where they went wrong or how to fix them.

So when the doctor - my primary care, whom I do not have much faith in at all - called and said "This is a problem. But I'm not going to be here to help you figure it out for two weeks", I wanted to dissolve into a puddle. I mean, I know, in my head, that there are things I can do - like calling the surgeon or Zack in that time, just so I know what their take on the whole thing is - but right now, all I want is for all the complications to Go Away.

Or, maybe I could go away: Where is Swift Wind when you need herhim?
(Did you know he was a he? I didn't.)

One of my favorite things

about Lil Girl is her singing. She's a singing fanatic. Picture an almost four year old who knows all the words to Bad Romance or Live Like We're Dying, and you've got a pretty good take on what kind of singing happens all the time around here. (We'll just pretend I don't have my own, hyper-judgemental issues about letting a four-year-old listen to Lady Gaga and move right along...)If there's anything more adorable than that little curly head bobbing back and forth, and little fingers twirling her Mr. Microphone as she belts out "You belong with MEEEEEEEEEEEEEEEEEEEEEEEEE", with then I don't even want to know about. (Said in my best Mrs. Landingham voice.)

But there are a couple of complications - The fist being that she's infinitely more up to date in her song choices than I am... I listen to the radio with the specific goal of catching up on current songs so that I know what's coming out of her mouth half the time. (Although I also do my best to catch her up on a lot of music she wouldn't be otherwise exposed to - if you're 4 and not singing Disney songs, then I am sad for you - so there's definitely some overlap.)

And then there's the songs that I have no clue about - the ones she asks me to finish for her "Sad and on the dancefloor he left me there.... What's next, Auntie?" Um... I have no clue? I have never heard this song before. Or when there's some dance moves that she thinks I should know that go along with the song "When I say "Hope it brings you hell" you're supposed to do count like this:" she moves her fingers very slowly down from 5 to 0. O...k: why am I doing that again? "It's the way the song GOES AUNTIE!" Alrighty then, what do I know.

We've also made up our own routines: as a former dance teacher, it fills me with glee to see her hopping and toe pointing her way through a song. Although her favorite is just a Michael Buble cover of the song Hold On during which I have to try to sneak up on her and hold on to her every time he sings the words "Hold On". He sings those words a lot in that song. By the end, I am just pulling on her toe and trying to catch that, since the little bugger has a LOT more energy than her Auntie NTE.

Complicating the whole thing is the fact that she's not always clear on what the song is actually saying, but this is, by far, the best part of our singalongs.

A recent sampling of some slightly confused lyrics -

(In the interest of full disclosure, I will freely admit that, until I was a teenager, I thought the words to "Addicted to Love" ("Might as well face it... you're addicted to love.") were actually "Hyena's little faces you're addicted to love." I did not know why there would hyenas and their faces in the song, but it never occurred to me that I might be mishearing the lyrics until someone else sang the song with me and laughed their ass off when I sang the wrong words. Ah, 12 year-old girlfriends.)


From Eeeny Meeny Miney Moe, the perpetual help-me-choose song preferred by children of all ages: "Catch a tiger by the toe, if he liars" or, alternately, "if he lawyers let him go." True: If the tiger lawyers up, you've got to let him go - you aren't going to get anything out of him. Actual lyric: Hollers. Not a word in her vocabulary, I'm afraid.

From Hey, Soul Sister by Train: "Hey Soul Sister, ain't that Mister Licker on the radio, stereo, the way you move ain't fair you know." Obviously the correct lyrics of "Mister, Mister" would be a bit before her time, (as is stereo, come to think of it) so that's fine, but Mister Licker? I don't even want to know.

My current favorite is from the Lady Antebellum song, Need You Now which says that "I'm a little drunk, and I need you now". Her version: "It's a quarter after one and I'm a little trunk and I need you now." I actually giggled at this one, picturing a little suitcase siting out, abandoned, waiting for someone to pick it up. Also wonderful is her timing: the part where the sing "for me it happens all the time" has a little beat after it before the song starts up again, and she bops her head every. single. time.

Also heart tugging are the phrasings that she tangles up - adorably, IMO - so that "Romeo take me somewhere we can be alone" turns into "Romeo, take me, somewhere can we be alone."

These are like the last of her baby mispronunciations ("Yittle" has been fazed out over the course of the last 6 months or so, and that was one of my favorites), little blips in her road to growing up that I want to be able remember. The two of us, sitting on the floor in the dining room, her belting out a song about sad and lonely trunks, and me giggling along.

And then, 3:30 am rolled around

and I nearly burst into tears because the damn tape player (which is from 1993, you guys!) ate my HP tape, or something. It is playing, but silently. WTH?

And it takes me FORTY FIVE MINUTES to figure out that Lil Girl had turned the volume off after her song earlier, and that is why I can't hear anything.

Moment of accomplishment? Totally in the past.

Giving myself a sticker

It's been a long week. I don't actually know why it's been a long week (and I am getting so sick of saying "I don't know why", since it's how I feel about everything lately), but I am just plum worn down.

Some of it is physical, I'm sure... I'm sifting my way through a particularly bad cycle in my FM pain, due, in part at least, to the unending wetness and yo-yo like weather we've been experiencing here in Massachusetts (Wettest. March. Ever. Literally.).

Some of it's the exhaustion of yet another horrid and unexplainable stretch of total insomnia - as compared to the light-dosing/completely unrefreshing sleep I've been living off of for the past 10 years or so, bouts of total insomnia = days with no sleep at all. At ALL. Nights of repeatedly listening to the Harry Potter books on raggedy cassette tapes (Shut up: they were free), and getting the lovely voice of Jim Dale stuck in my head. (To the point that I sometimes imagine him doing a lilting British narration of my life, and somehow managing to make it seem interesting. "The bread was moldy, and, with a shiver and averted eyes, NTE briskly opened the cupboard and tossed it into the bin. 'No luck on sandwiches today, lovey,' she called, 'How about a nice crock of soup instead?'")

Some of it's emotional - trying to get used to the idea of my Face Surgery (that's what we're calling it here... capital letters required); still being computer-less; having a to-do list that's about 3/4 of a mile long; knowing that 5 of my closest college friends & a cousin-in-law are all pregnant right now, and I am not; failing yet another drug trial, the one that Zack was convinced was going to work; knowing we've been living here for a year (well, not me, I'm about 4 months behind because of My Summer With Grandmother {again, caps required}, but we've been out of the old house for a year anyways), and I am still about 1/5 unpacked: My clothes are in drawers and my books are on the shelves, everything else, all 30 years of my stuff, are still stored in boxes, waiting for me to shuffle through them.

Let's just say that I'm feeling a little behind the 8-ball lately, like I just can't catch up, and am barely able to do anything right.

But today, today I struck gold.

Today I had a moment so right that I wanted to sing, dance, clap, cheer, and give myself a sticker.

If you've been reading here for any length of time, you probably get the gist that Lil Girl is a wonderful, crafty, extremely bright, and terribly stubborn child. Self-willed will most likely be her major in college, and she will graduate with honors with that degree, even though the college doesn't offer "self-determination" as a legitimate option for degrees, because she will just wear down the administrators until they give it to her.

Stubborn as the day is long, that's our Lil Girl. (She also comes by it naturally, as our family tends to run a little towards the mule-side, but that's another post for another day.)

For today's post, you should also know that Lil Girl is sick. She's not a miserable kind of sick, but she's got an ear infection, and a cough, and she's been battling this off and on for at least 5 months. (I'm hoping her immune system is just reacting to her new school environment, and that she inherited her mama's genes there, because ours run to crappy.)

Anyways, to finish setting the scene: Sick, Stubborn Lil Girl. Who doesn't like to be told what to eat or drink on her best day. And now has to take a Rx medicine twice a day. To show how well this process has been going, I offer two examples:

Example A: My brother calls me two nights ago, Lil Girl is wailing in the background, and he says that after 25 minutes of fighting with her to take the medicine, (which included him trying to force her to take it physically), he is giving up. I try - completely in vain - to wave some sort of long-distance magic wand to help everybody calm down, but she winds up going to bed exhausted, crying, and medicine-less, and he very curtly tells me he's "done." I spent a good three hours fuming, post-phone call, wondering what the hell I was supposed to have been able to do from so far away.

Example B: When she arrived at our house this morning, Mum asked her if she had gel in her hair, because it was kind of crunchy (and because, if her mom is doing her hair while she gets ready for work, sometime Lil Girl insists on the full treatment as well). Her mother states that no, it's actually medicine that Lil Girl spit out this morning, but there was no time left to wash her hair.

So, if I tell you that Lil Girl took her medicine for me tonight, before she went home, with only a piece of hard candy (for post-medicine taste changing) and a one song of her choice soundtrack as encouragement, you will, perhaps understand why I wanted to commemorate the occasion with a post.

It's not such a huge thing, really, and it probably had a lot more to do with her than with me (if she had been in a different mood, I have no doubt there would have been a Very different outcome), but there was no fighting, no cajoling, & no controlling (on my part); no tears, no whining, & no feeling powerless (on hers). It was just a simple "This is what we have to do," and then it was done.

And, just for a moment, I felt as if I'd saved the world. Just because one Lil Girl swallowed two teaspoons of medicine without a fuss, I managed to feel just a second's worth of that "I can actually do this" feeling.

And I'll take every second's worth of that that I can get, wherever it comes from.

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

You know what I am really good at?

Drafts. I rock at first drafts; love second drafts, have been known to have as many as 16 drafts of something before I am even close to happy with it. I was that annoying kid at school who would enjoy the peer editing conferences, knowing that I would get another chance to fix all the things that needed to be fixed. I have about 7200 of them sitting around right now: A first draft of a children's book I started writing 12 years ago; a hilariously poor batch of poems. A first draft of a letter to an old friend, two or three drafts of outrage (or, less likely, praise) to my senators; one for my aunt, sitting around waiting for me to add pictures. Hundreds of posts sitting in the draft folder. Probably the same number of e-mails sitting in that drafts folder. I go through drafts and drafts and drafts of every To Do list - with a lot more carry over and a lot less crossing off than I would like, unfortunately.

The only kind of draft I am not exceptionally good at? Final drafts.

And do you know that it has taken me the better part of my 30 years on the planet to make the connection between my labor intensive and research rich drafting process and plain old procrastination?

"But I'm working on it!" I can say to myself - "I'm re-thinking it, I'm re-working it, it's still percolating, it's not all the way there yet, not Done with a capital D Done." Right, and it's often true that things need more tweaking. But there comes a point where you are just holding on to something, just keeping it your control for as long as possible. At some point, though?

You need to finish things. You need to make the decision, write "The End", cross everything off the list (or decide it's not worth completing and toss it), stick it in the mail and sent it off.

One of the things that I've crossed off my list this week is deciding to have the sinus surgery. After my appointments last week, I did a bunch of research, I wrote about it here (once or twice), I asked for opinions and spent hours talking to someone I (only sort of) know who had a similar procedure. I wrote pro/con lists (yes: I actually do this), and argued with myself for as long as I could. Then I procrastinated a little bit because the answer I had wound up with was not the answer I wanted to wind up with. And then I passed in my final draft, and told the doctor to sign me up.

I'm still nervous, and I don't like that I have to have it, but it's pretty clear that I have to have it. I still don't know when, but that's the doctor's fault not mine. (His surgical nurse is supposed to get back to me next week with a date.) The good news is that my case is severe enough to require a special kind of sinus surgery, which can be done on an outpatient basis (Do not even ask me: the less severe surgery is inpatient, mine is all laparoscopic and laser-y, and so then I get to go home on the same day. Yay.) Also on the good news side of things is that the surgical nurse seemed to understand that liquid pain medication will be very important (bc I'm also getting my tonsils out. Did I forget to mention that? Yeah, they were what started this whole damn thing in the first place.) and was very clear on the fact that, since I won't be able to take my regular pain meds for at least a day or two, then I'm going to need alternatives.

So: final decision made. Now if I could just get the damn computer out of draft mode (Current draft title: "You cannot afford a Mac: choose again"), then I'd be all set.

What I would say, if I were brave enough

Dear Facebook Friends,

I am genuinely glad that you are expecting your (insert number here) child. You are my friend, and I'm so glad for you (especially those of you that have been TTC for quite a while). I will happily attend baby showers and baptisms, and am already shopping for a gift to take to the hospital. But I am also sickeningly jealous, because the only thing I want more than getting well is a family of my own. So if you decide to complain about a)the gender of your baby or b)the fact that you are a little more tired than you usually are, you'll have to excuse me if I don't join in on the pity party. I know you have a right to how you feel, but since right now I feel like I'd rather be you on your worst day than me on my best, I'm just going to ignore your posts for a while and come back for the big announcement.

Kind of Sorry About This, and with Lots of Love, NTE
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Dear Facebook Friends,

I am glad you get to spend your time playing games that entertain you such as Farmville, MafiaWars, Sorority House, Godfather, Wizard World, ZooPets, etc. For myself, however, I know that if I were to join you in playing any of these games, it would not go well. I have a limited amount of energy as it is, and if I get sucked into playing a highly addictive game (and I can see by the number of posts you have each day, these games are highly addictive), then I would get less than nothing accomplished. (Evidence Bejeweled Blast, and the fact that I had to uninstall it from my page, lest I get sucked in again.) So please, please stop asking me to join your cult community: even if I liked it, it would be bad for me.

Love, NTE
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Dear people I used to know and now only sort of know because we are "friends" on Facebook,

Perhaps you are unaware of my particular life circumstances, and that is fine: I understand that we haven't been close in the 10-15 years since we've last seen each other, and so how were you to know? But if I post something about how I am feeling, or the status of my 1200th doctor's appointment of the week, or if you happen to see a picture of current-ish me (of which there should be none: although sometimes my siblings sneak them in when I am not vigilant enough) and notice that I am in a wheelchair, it is not an appropriate response for you to say things like "Damn, what happened to you?" or "Really, you're that sick? I would kill myself if that happened to me." It's called common sense, people. Rudeness is still rudeness, even if you're typing it.

Whatever, NTE
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Dear Facebook Friends who are too cutesy,

If I have to hear how your and your fiance/husband/boyfriend are head over heels, lovey dovey, to the end of the earth and back, never been in love like this before in LOVE, one more time, I might unfriend you. Just warning you. You have a right to be happy, but I have a right not to roll my eyes every time I open up my homepage, too. I am actually glad that you are in a happy and stable relationship, but if you called each other those cutesy names in real life, in public, your friends would laugh at you and walk away. So maybe you should just keep it to the private messages, and leave the "smooshy" "bestie" "Daddy" (ick) & "Snookums" (Really? Unironically?) for when you're actually seeing each other, so that I don't have to read it. Deal?

Love, NTE (See how I could say that without drawing 17 hearts in a row? You could try that too!)

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Dear Facebook addicts who tell me I don't update my status enough or think I should get a Twitter,

Honestly? Most weeks, if I updated my status daily/tweeted it would look like this:
Ow.
Ow.
Ow, plus Lil Girl is here.
Ow, am recuperating from Lil Girl.
Look, Ow & now Lil Girl is here again.
Ow, and now I have another doctor's appointment that I don't want to go to and will probably be a big waste of time.
OUCH. Doctor's appointment was a painful bust, but now I have pill number 756 to try, so we'll see if that works.
LOOK A PURPLE UNICORN.
Pill Number 756 gave me hives. And hallucinations. Am not taking it anymore.
Ow.

Actually, that's a lot more interesting than my normal week - purple unicorns are few and far between here (hives, unfortunately, are much more common). I realize that since you are working, you might have something new to talk about all the time, but for me, my life is a lot of same shit, different day. So, you should be glad that I only post things when they're actually interesting. Ow loses its meaning, after awhile.

Thanks for thinking I'm interesting, even when I'm actually not, NTE

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Dear Family Members/Friends from elementary school,

You do know I have lots of embarrassing pictures of you, right? And that I am consciously choosing not to post them? Ok, so maybe you don't want to get on my bad side, is all I'm saying.

Really.

Love, NTE

"But if the road's been kinda bumpy, And you need to rest a spell Well, welcome home to Happiness Hotel"

The very fabulous Sue, over at Learning To Live with CFS gave me The Happiness Award last week, and I can't thank her enough for it. What with all my obsessing and decision nonmaking, it was nice to have something positive to focus on.

So here is a (very random) list of things that make me happy right now:

We'll start off with these four - Oldest Nephew, (No Longer) Youngest Nephew, BabyB, and Lil Girl, the beginning of the next generation of our own special brand of weirdos.

Being able to open the windows. Fresh air without the sunshine is just the kind I need.

Talking to people who listen, care, and (at the very least try to) get it... in person, on the phone, or on the computer.

Having a nice fat TBR pile. (I get antsy if it's not big enough. TWSS.)

My parents are away for the weekend, and I'm glad for them, since they never go anywhere.

Family Friendly Weekends, on WERS; the Emerson College radio station. From 10-8 on Saturdays and 12-8 on Sundays, they play the kind of music you don't hear much of on the radio anymore. It's Broadway, show tunes & soundtracks in the morning, with Standing Room Only; All A Capella in the afternoon, and a program called the Playground in the evening, which is "music for the young and young at heart". It may just be me, but I think there aren't enough radio stations playing the Tale Spin theme song nowadays.

And we'll finish off with the Muppets, because how can you be grumpy if Animal is banging the drum?


I'm not going to link to other blogs, mostly because I don't have that many readers, but also because Sue said I didn't have to. But if you read, and you'd like to play along, consider yourself an award recipient.

Change of subject

Because one of my favorite Shutter Sisters, Tracey is judging this week, and because I was able to find an older photo I thought fit the theme (negative points, borrowed netbook, for not having a card reader!), I'm entering this week's I ♥ Faces contest. The theme is "Bundled Up", and here's Lil Girl hiding from the wind - and auntie's camera - last winter:

Head on over to I Heart Faces to check out the rest of the (gulp: 600+) entries, to see some fantastic shots.

Thanks guys!

Appreciate the support and will keep you updated. I've got a follow-up booked for Thursday, so we shall see what he says then. Till then, I am going to try to cheer myself up by posting some pictures: enjoy!

In which I ramble (again) ...

I know my posting these past few weeks has been lean - and it will probably get leaner still, should I have to have that damn surgery - but, fear not; I have not been sitting around wasting time. (Or, more accurately, I have not just been sitting around wasting time, since I did, in fact play more than my fair share of Bewjewled Blast on Facebook.)

No, I've been thinking. And plotting. And researching. Oh my heavens, with the researching.... Here are some things I have done, based on my research:

- I attempted to repair my laptop my own damn self: After reading a lot of blog posts and watching a video or two, I came up with the smart idea that the problem was the LCD inverter. So I tracked one down on E-bay, unscrewed my screen, and hooked the new inverter to the rest of the screen. Unfortunately, it was not the problem. This is unfortunate because A) that part only cost me $10 and fixing the damn computer for $10 would have been awesome, B) the part that is actually broken is most likely the LCD backlight, which is a little more expensive (ok, 10x more expensive), and that sucks, and C) not fixing the damn laptop means that I still have to steal mom's netbook. On the plus side, however - I took apart (and put back together) a computer screen solo. This is no small accomplishment for a girl who failed a Lego class.

- I have learned a little bit more about Macs, and using Photoshop with Macs (or even Windows with Mac, if necessary), and now only need to get my butt to the store to see what size will fit me best. (I have tried to have this size conversation with three people in the past week or so, and NO MATTER WHICH WAY I try to say it, it always ends up in a "That's what she said" type of comment. There is no avoiding it - if you're talking about size, TWSS will naturally appear.)

- I have found a new book series that I think (no longer) Youngest Nephew would like to read, and have started reading it myself.

- I may have found about 27 new books for me to read. And PBS-ed them. And read a few of them.

- I have found a couple of fun things for us to do this summer (hopefully).

- I have realized that I have a real issue with eating, and I'm working on it. (Awesome new-to-me resource: Did you know eating is not actually supposed to be a chore? Somewhere around the time that my meds killed my appetite, food and I started to have a very complicated relationship. I'm excited to think that can change, even though I can't afford the sessions she offers, just reading her blog has been so worthwhile for me.)

- I have scared myself out of sinus surgery. Twice. And scared myself back into it twice as well. Needless to say, I am very confused about this damn surgery, and am retroactively glad that my appendix decided to twist itself up in such a way that decision making was unnecessary: The only thing I thought that day was "Holy hell, did I just throw up blood??"

- I am trying to be kind to myself while I waffle over this decision, but I feel stupid, and inadequate, and ridiculous. No one has actually said anything mean to me about it, but I feel horribly judged - if I decide against the surgery (because it is painful, and because I don't heal well (no matter what the doctor tells me is "normal" healing), and because I petrified that this will make things worse instead of better, and because I don't know if I can handle that), I will never know if this is the thing that could have made me better. I will always wonder "what if". Maybe the people around me will wonder "what if" too, and judge me and think that I don't want to get better, because I don't want to do this one thing. If I do have the surgery (because it might actually solve a real problem, and because the doctors think it's my best bet to ward of the ever-present infections), then my face might get messed up. And - although I do not, generally, consider myself to be a particularly vain person - it is my face. And my sinuses might wind up worse than they are now, which would leave me worse than I am now. Or I might not heal right, because I never have before. And on and on and on.

- I have given myself permission to feel stupid and call and ask the doctor for another consultation, because I did not understand everything he told me that first day. That first day, it was all hypothetical and "then we do this" and "ten days later, good as new." Now, it is My Face, and My Body, and My Nose that you are going to be shoving a hammer up. Now, it's "Why should I do this? What are the real benefits?" and "How do I take my medications for 10 days if I can't swallow things?" So, yeah: I think I need more than 6 minutes of your time. And I'm sorry if that inconveniences you. (I think I am spoiled by Zach, who sat with me for 45 minutes on Friday - during a completely unrelated visit - and said things like "Don't do it if you're not ready" and "You have to realize that doctor's only know what they know - you know you." )

- I have finally posted something on my blog again - with words and thoughts and everything!

A sweet little song,

because everything I'm writing looks as if I've forgotten how to combine consonants and vowels into words. So, here: Zooey always cheers me up. Zooey and hula hoops? Even better.

Thanks for all those well thought-out replies

to my computer search questions. The responses (here and on my Facebook) have been overwhelmingly pro-Mac, so I'm going to see if I can carve out some time to get back to the Apple store at the mall, try to play with it a little bit more. I think I can swing it, moneywise, if I go for the mid-range version of the Macbook Pro, rather than the high-end one. (And, really? I do not need, nor would I like, a 17" screen.) So I'm going to go play with the 15"-ers and see how that works out. I'm glad to know that the OS is easy to learn: I have no doubts that it's easier once you know it, so my real concern has been, knowing nothing about it, how long will it take me to figure it out? But I've been doing more research (Hello: I'm NTE, Chronic-over-researcher, nice to meet you), and I think it seems do-able.

The only remaining cons are program-wise: that most of my files are in Office format, and that I don't have Mac Photoshop, which is one of my preferred tools for photo-editing, but I think I can get around that if I have to (either by fixing what I think is currently wrong with the old laptop, and using it specifically for that, or installing it on Mum's netbook and saving up files that I want to 'shop). So, I think I'm a Mac, and I'm going to go play with one tomorrow or Monday, just to be sure. I'm already searching for good deals (which are much harder to come back with the Macs, unfortunately) so that I can buy it ASAP.

Thanks for all your advice: Personal experiences count for a lot, when it comes to stuff like this. I think what tips the scales for me is the customer service... HP customer service has been really hit or miss (and mostly miss) for five years; I need something I can rely on, and the Genius Bar gets high marks for helpfulness.

So, barring something unexpected, I should order my new computer this week: pretty exciting!

Wisdom from those who came before you...

Funny or Die's Presidential Reunion from Will Ferrell

Still no new computer: I'm trying to decide, definitively, if I am a Mac or a PC. Right now, this is boiling down to two issues:

1) Do I have enough brain power to learn a new operating system? Even though every Mac user I have talked to says that it's an incredibly intuitive OS, it's still not what I am used to, and will therefore require me to learn things. Thinking back, I know I taught myself DOS and, later, Windows (we had a computer before Windows - can you even imagine?) when I started using them, but I am not as smart as I used to be. I say this semi-jokingly, but it's true: brain fog is my real enemy now, in a way it didn't used to be, so that even things that should be simple wind up being unbearably complicated. So I have to really consider whether I have the energy to deal with learning a new thing. (This is a particularly important consideration when you're thinking about things breaking - when my PC stops running, I know of about 13 different ways to try to get it back up again... with a Mac, I'm clueless, and would probably make things much worse.)

2) How much money can I spend? Did you know that if you are on SSI, you can't have more than $2000 in the bank? Yeah - people with disabilities are apparently an exception to the whole needing to have money/plan for the future in anyway thing. (You can read a great rant about that on FWD, if I can find the link.) So I'm not allowed to have over $2000, and a 15 inch Mac starts at $1600. Which means, less taxes and whatever else, I would have about $300 to my name. Until April. I am not entirely comfortable with this, as I am generally "worst case scenario" prepared - I like to have the cash on hand. So I'm trying to figure out how to get the most bang for my buck.

There's a couple of other considerations... like I have no Mac programs, which, when it comes to photo editing, is kind of important; knowing your tools and how to use them. And then there's the fact that I need to make the RIGHT decision, or else beat myself up for all eternity. Blah. Choices - who needs them?

No, I need them, and I need to make this one - I hate being wishy washy, especially about something so trivial. But I think I kind of obsess about the more trivial things I can control, since there's no use obsessing about the stuff I can't control and would like to. BUT I'm going to set myself a deadline of this weekend, and see if I can do a last bit of research either tomorrow night (we're having a Lil Girl sleepover tonight, so that's out) or Friday morning before I finally get the damn CT scan for my sinuses (that the doc ordered 4 weeks ago - GROWL - and which will necessitate me making an actually important decision about whether or not to have the surgery - double growl.) And then my bank card will weep for a few weeks, and my mom can have her little netbook back.

Any last input on the whole computer issue would be appreciated - do you love what you have? Hate it? Wish you'd gone PC/Mac when you made your last purchase? Anybody?

Temporary pause

as the laptop has finally given up on me. Today's screen went from half pink to twitching to finally being blank. Although if I tilt it a certain way, I can see the vague impression of the screen behind the veil of black, so I know it's just the screen. But in the five years I have had this computer it has had to be sent away for repairs three times and I've had to use the Geek Squad twice. The battery's been replaced twice as well (which is not all that unusual), but I've also gone through 4 power cords, which is ridiculous. I could have bought a new laptop (plus) with what I've spent repairing the old one, and since one sister has been nice enough to offer up her store credit and another sister her employee discount card, I should be able to afford to get what I need/would like. Thankfully, Mum got a netbook from her sister for Christmas, so I can still do some research about what I'm going to get. So if you're wondering about the little bit light-ish (and picture-less) posting, not to mention the severely restricted blog browsing, that's what's up. Hope your week is going OK.