And my alternatives would be....?

These are the kind of nights that you almost believe you made up , until they happen again.

Back when I actually talked to people (besides my family, who are just about the only people I talk to right now), eventually the conversation would turn to my illnesses and how I 'cope' with them. Some people would say things like "I don't know how you do it" or "I could never do it," which always seemed particularly wrong thinking to me because it missed the point that you don't get to pick whether you do it or not: These are the circumstances you have to live with... so get busy living. By whatever means you can.

So that's what you do. That's what I do. I just get through the days as best I can, using all the means at my disposal to try to make those days resemble - even ever so slightly - the life I want to have.

And sometimes I feel as if I am doing a pretty good job at managing things, that I have things as under control as they are likely to get, given the circumstances. That I am squeezing out bits of happiness where I can find them, avoiding unnecessary drama as much as possible, searching out moments of quiet and connection and the closest thing to peace that I can find in the chaos that is my life.

Tonight is not one of those nights.

Tonight is one of those "oh yes, your pain can get worse" nights. A night where I would've labeled my pain a 10+ on the pain scale, but I can still string words together in some semblance of sentences, so it must only be a 9+ instead. A night where I curse every medicine I take as phony, every pain management technique in my arsenal as a dud, every attempt at distraction as weaker than bringing water balloons to put out a forest fire.

And it's the steroids. I 'forgot' that steroids kick my ass. Actually I didn't forget, I just ... blocked it out, that things get this bad. Imagined that I was misremembering how bad things actually can get. I was hoping that this time they wouldn't, since I didn't have any choice but to take them. I only take them when things are desperate: when my tonsils touch and try to suffocate me, for example. In this case, because my infection went untreated for so long ("It's just fluid in your ear!"), the sinus/double ear infection raged inside my skull, causing havoc. Fearing a systemic infection and hospitalization (Zach knows me too well and was sure to explain just how serious this whole situation was, using words like "IV treatment" and "long term danger"), I conceded and agreed to take another course of the steroids.

They were a different kind then last time, a different schedule, a different dosage. And yet, the results were the same: just me and the pain, in the dark, each cursing the other.

I feel like my back has been trampled by horses, and even the slightest pressure - I am wearing a sheet, and it hurts me - is unbearable. From the crown of my head to lower than even the lowest low-rider jeans would sit, it is as if the skin has been peeled off and what's under has been flayed, as if my brain somehow turned all the pain receptors to 11 and let them do their thing.

I know if I could see my back (which, at this point would take some ingenuity), that it would look fine. Normal. Not as if wild mustang has bucked and kicked at it all night long. It will not have the deep blues and purples that you'd see after someone launches themselves down the stairs, or from an airplane, parachute-less: there's no bruises blooming to map out my pain... and yet it hurts more deeply and more completely than I could ever explain.

It's not just my back, that just happens to be my worst area, the section of my body where there's no safe patch, no less painful zone. My legs, for example, have 'tender' spots, but there are also places - the side of my calf, the top of my foot, my pinky toe - that aren't battered and busted. On my back, there is no quarter.

Pain can do remarkable things - it can make you roll over, make you shake, make you vomit, make you cry, even make you see the sun rise - and I work so hard at trying to tame it, trying to control it ... even just a little so that it doesn't control me, but on nights like this I feel as if there's no point - sometimes pain just wins.

And that makes me think about all the people who say how they could never do this, because I wonder why they think any of them would get a say in the matter.


I can't do this either. Except that I am. Except that I have to. Because there's no other choice.

For the sister who reads my blog

because she's sweet. And we play tag.


Here's some stuff I've been putting together for you for a while, from various places around the interwebs.


Credits: Wonderland tattoo, an ecard, Owls

"Always Remember" by DazeyChic, Pin-up librarian, Teapot, Dollhouse


Puff (from some random files I've scanned of old patterns, I think), Cuppy Cake , Fridge

LolCat, Jessica/Alice,


Ev-a, picture, "Everything Hurts" by TheBlackApple, Fun Times



Love you long time!

A little catching up...

Here is something people must forget about the whole concept of moving: once you are in the new place, you have to find a spot for all the things you've brought with you.

Or, if people don't, at least we did.

Right now, we are still living slightly bare bones - big furniture that the movers brought over (couches, beds, refrigerators), plus the personal care stuff you don't go anywhere without, some clothes, a couple of tables and bookcases and what not. But next week, we're getting our storage pods back, and now we have to figure out where the hell everything goes. Of course, I am "not supposed to worry about that", but since I am the only damn one who actually worries about things ahead of time, I have, of course, been worrying about that.

People who can get up and move things if the location of something doesn't suit them don't exactly think about what it means to not be able to do that. So that, if I have them set up my room (or the library, which I am still totally claiming as mostly mine) in one way and it doesn't work for me? Then I have to wait till everybody - or enough bodies, anyways - can make the time to come over here and help me again. And that is a party and a half.

So I've been skootching my bed (on wheels) from spot to spot, trying to decide where I get the least amount of sun glaring off the white house next door; trying to see how long the cords for my computer run, and how to make space for my printer; wondering where all of my crafty stuff is ever going to fit... all that kind of stuff. It's not high stress, but it takes a working brain, and some days I barely have that.

In other news, Harry Potter 7 is no longer playing at the only movie theater in our neck of the woods where I can watch movies, so I'll have to wait for Netflix for that one; my Wednesday appointment with Zach almost ended with me being hospitalized because of my know-nothing of a PCP, who told me that my intense ear pain was just some excess fluid in my ears - 3 weeks ago! - and was (shockingly) wrong. Instead I now have a double ear infection and a sinus infection and they've left me severely dehydrated and with quite the elevated numbers - Zach thinks it's probably not a good idea to see her anymore, which I knew way back last September, but Mass Health disagreed. Of course, now I've actually moved, so they can't give me crap about picking somebody closer, but still... grr I hate picking new doctors; And lastly, in happy news I haven't shared yet, my oldest sister -SisterS - is going to be a mama again (13 years after Oldest Nephew), and is due in the beginning of December: I am very excited, even if the little man will live too far away from us (They're up in Cow Hampshire, about 2 hours away). So, now I have to come up with a new name for Youngest Nephew, I guess... or something like that.

Anyways... that's what's happening in our little world, where it's been in the 90s all week (I got a blister on my arm after being outside with the kids - WITH SPF 85 on - for about 25 minutes. I was in the shade. Screw you, antibiotics and your "you may be more sensitive to the sun" warnings) and where the weather man is right this minute telling us about a tornado watch we are under until 9:00 and how Hurricane Bill might cause flooding this weekend.

Why did we decide to stay in Massachusetts again? Cuz it sure wasn't the weather. (Actually, I tend to like our weather, but this week has been ri-dic-u-lous.)

Oh, and I have a new banner: how do you like it?

Little update...

Thanks for the well wishes, guys: I really appreciate it.

It's been kind of crazy here this week, and I'm feeling more than a bit worn out today. So far the post-move flare has not been ferocious, amping things up only a notch or two as far as pain goes. Which, of course, is horrible. If your pain goes from an 8 to a 9, that's a big deal. But, I had so feared a 10+++++, that I think I'm dealing pretty well with what I've actually got.

I do have a comfy, cozy new bed to retreat to, which has been helpful. (I even wrote a post about it, and if I can get my crap together long enough today to take a picture, I'll post it.) I am slowly adjusting to the new smells and sounds, which has been difficult. As far as sound goes, it's mostly just a lot of "Holy crap - who slammed that door? Is that someone coming in the porch, or just the floor creaking? Why is the bathroom right next to my room?" and new street noises like fools who set off fire works after 10:00 at night. Not so big a deal, really.

But the smells, oh the smells. There's the "odorfree" paint, that STILL smells even though it's been three months. Yes, it is less than it would normally be, but don't try to tell me it's odorless... there's a smell. There's the ocean breeze that occassionally makes its way up the hill, my neighbor's insistance on using some sort of stain on his new steps, and then there's the mystery smell, that seems to come in only in my window. UGH. My current theory is that the previous owners buried a body in the side yard before they moved, and that is why there is a cup of vanilla extract sitting on my windowsill right this minute.

Smells, the front porch 'ramp' (that is steep enough to qualify for a mountain), and the bathroom (No sink? Toilet in front of the door? Haven't you people ever used a bathroom before??) have been my biggest challenges so far, but I am settling in, slowly and surely.

Mum and I have been working our way through this season of So You Think You Can Dance? - don't tell us who won - and adding grab bars & curtains in the bathroom. I've already figured out that the den gets the best breezes and the front porch gets the least amount of sun after 10 AM.

I know that some of our neighbors have children, some have dogs, and we all need a new sidewalk. I know that the library is only 1/2 accessible, and the half that is are the children's rooms. And that there's only one local pharmacy that's open 24 hours (and, of course, it's not mine).

I'm finding that the house is awfully quiet a lot of the time, and that, because it is so big, people can disappear. I am not used to being so far from everyone - in our old house, there were 7 rooms - all on one level, all close together. You could hear people talking in every other room, if you wanted to. Here, there are 7 rooms on my floor, and now there's this whole upstairs that I've only seen on video, a front porch and a back porch, with doors and steps I can't climb. There's a basement and a garage, and a yard I haven't checked out yet.

I'm both excited that there's so much left to explore and overwhelmed, because who knows when I'll get to it.

I'm trying to approach it as if I have all the time in the world - trying to change my attitude from this being 'the new house' into this being our 'forever' house. If we're here for the long haul - the foreseeable future, let's say - then I've got plenty of time and I can just be calm about it. Of course it's unsettling to be living out of a suitcase, or to be faced with piles of boxes that you have to sort through, but I'm really trying to enjoy the process here - and that does not come naturally to me. It's a real effort, because as much as I'd like to be DONE, I have to just take some deep breaths and try to let things unfold at a pace I can handle.

We'll all see how well I do.
As always, thanks for caring.

Yes.

Yes, I am finally in the new house.

and

Yes, I finally have internet (that I don't have to stick the computer outside the window to steal from the neighbors) again.

and

Yes, I am doing mostly ok, although there are still L.O.T.S. of issues.

and

Yes, I hope to be back blogging (with whole sentences, and - gasp! - perhaps even paragraphs) very soon.

because

Yes, I am missing writing, and reading, and visiting with all of you.

but, also

Yes, I am just too wiped out for that to be today.

*

I spend most nights like this: Back and forth, back and forth in the rocking chair. Wishing it wasn't just me I am attempting to soothe to sleep. One foot down on the floor, the other leg kneels on the Pull Out Couch Of Death (Tm), and I shift my weight onto the "bed". Where I have to lay diagonally, because that's the only way I'm not poking into one sharp spring or another, one crease in the 'mattress' or the next. I bring my pillows with me, back and forth, back and forth. From the chair to the couch, and back again, all night long.

And tonight is to be my last night. Tomorrow, I make for 'home.' The new house, at any rate, since it feels like nothing to me yet, just a place where I'm supposed to live my life.

And for all my complaining, about how long the process has taken and how much it has hurt that my being 'home' has not been seen as a priority by those who are supposed to care the most; and about the Pull Out Couch of Death (Tm) and what it means for my pain levels; and about having to behave as 'company', when I am clearly not in company form - for all that, I have had such an enjoyable summer here. And I find myself sad to have to go.

I knew I would be - I always am. Even an afternoon visit to Grandmother's house is something I attempt to stretch into an invitation to dinner, a chance for tea and dessert, some Jeopardy! companionship. And I've been here for 3 months now - almost exactly - and it's been a long three months, healthwise. But heartwise is another story.

I know that I'll be the one making her cry tomorrow, and that makes me cry tonight. Of course, this all seems maudlin and dramatic, considering we have gone from 3 minutes down the road to 15 -20 minutes up the street of a thousand red lights, but it's 1 in the morning, I've been running a fever for 5 days, and I am moving to a new home base: I'm going to let myself get a little maudlin, just because.

I've been trying to write the thank you cards I am leaving behind, and cannot think of how to say it: how to show just how grateful I am. The cards themselves will be scoffed at, I know: Uncle Jack will shake his head and say how it was nothing, how I was more of a help than a hindrance - and neither of us is gracious enough to just take the thanks as it is meant... uncomfortable with praise, my uncle is. And Grandmother has told me a thousand times how much she's enjoyed our time together: I just want her to believe that my heart's a thousand times fuller because of the past 90 days too.

Unable to think of how to say it, I sit and rock, back and forth, back and forth. I turned on the computer for the stated purpose of putting this down somewhere - That 90 nights on the Pull Out Couch of Death - FM pain and all, sinus infection (IN THE EAR) and all, grumpy uncles and all, having to answer the question about what's for dinner 90 times and all - were well worth it.

Because I got to sit out on the front porch and hear about how my Great-Great-Great Grandfather went to enlist for the Civil War and got swept off a bridge in a flash flood, never making it to battle, never making it back home. And witness firsthand how Uncle Jack's mood lightens when SisterK finally comes home from a night out. And watch my distinguished, stately, proper Grandmother try to throw a lounge chair at the neighbor's cat. And I got to (had to) be vulnerable and scared, and see how some of the strongest people in my life deal with their vulnerability, and mine. And teach Uncle Jack how to attach files to e-mail and thrill Grandmother by knowing all the words to Lydia the Tattooed Lady. And see Youngest Nephew play catch with his Great Uncle, and Lil Girl clop around in her Great-Grandmother's shoes.

Because I've been loved. And lucky.

Because I can not make it make sense to them, in, you know, sentences and things, I sit here and type. Rocking back and forth, looking back and forth, and hoping that I'll always be this lucky.

* I could not think of an appropriate title for this one (see above, re: Fever, Ear, 1 AM, etc). Only the lines from I'll Love You Forever kept coming into my head(because of all the 'back and forth' talk): "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be," but some people (ok: most people) seem to think that that book, while attempting to be positive and heartwarming, is also a little... stalker-y. So I didn't use that as the title, but I had to fit it in somewhere. All of my life, in one way or another, must relate back to a children's book, apparently. :shrug:

So you know how I was going to be all "The summer of Grandmother = Yay!"

Yeah, well that was until the sinus infection I've been fighting off for weeks decided to migrate to my EAR (not exactly, but close enough), and I can't talk (or eat. Or swallow.) without wanting to carve out the inside of my ear. So, I'm miserable, and I'm miserable company...Grandmother - "You seem depressed." Answer I want to give - "That's because someone is sticking something hot and sharp into my ear!" Answer that is acceptable to give: "No, ma'am, just sore." Grandmother - "You just need Lil Girl to cheer you up" Answer I want to give - "Thank all the gods and goddesses that those kids are on vacation, because right about now I'd be trying to sell them on Craigslist." Answer that is acceptable to give - "No, I'd be pretty miserable and then so would the kids."

And I just want my own bed, in my own room, where I can turn on the damn air conditioner before 3 in the afternoon (Why?), and where I can get away with just eating mashed potatoes and bananas all day, and where there's soup so I don't have to, and where Mom knows me well enough to know that this is not my mad face or my depressed face, this is my HOLY JEBUS WHY THE ...WHO THE HELL GETS A SINUS INFECTION IN THEIR EAR face.

So, yeah: I'm supposed to be on a kid-less vacation this week, enjoying my time with the lovely people I am staying with, and instead I feel like an emo harpy who sits in the dark room and watches reruns of Buffy the Vampire Slayer on Hulu all day. Awesome. I'm sure they'll want me to visit All The Time.

Blah.

Always surviving

Today, my aunt packed up and headed back to Ohio at some ungodly hour of the morning, and after she left, my Grandmother knocked on the den door, came in and sat beside me on the bed. "I just said good-bye to Mac", she said, her voice low and thin.

I put my head on her shoulder, she put her head on mine. A few minutes later, she whispered "I just don't know if I'm ever going to see her again."

She was crying as she said it, and her tears made me want to flinch they were so heavy.

Then her hearing aid whistled at us, and she collected herself, pulled herself back in, saying that she shouldn't be leaning on my shoulder, because it hurts me.

As if I care.

But she bustled out, and I knew she needed to be alone for a few minutes: Because sometimes you just can't cry in front of other people; because sometimes you're afraid you might not be able to stop.

I sat on the bed, in the dark early morning, with the stupid birds chirping away outside the window, and the light trying to creep in through the cracks of the shades, and I thought about what it must be like to have to say goodbye to your child, never knowing if you'll see them again.

Of course none of us ever knows, but we each have our own false comforts of being young, or healthy, or knowing that you only have to wait till tomorrow, or that you're right down the street, or that you've had all your shots.

I thought about how scary it must be to have lived long enough to know that it doesn't matter how safe you are, how old you are, how prepared you are: no matter what, life and death happen. You can't control them.

To have lost everyone who came before you, to know there's nobody left between you and what comes next ? How frightening it must be to be 92 and to know that whatever time you have left, it's not going to be enough.


It's scary for me to think about that, to try to imagine my world without her, but I've scraped together the remnants of my own naive beliefs, and I wrap them around me like a cocoon of denial... it hurts too much to go there.


I can't imagine what it must be like for her, without the comforts -however false - to protect her heart.

After a while, I went out to the couch where she was laying down and I just sat and held her hand. The tears slid from her eyes, backwards toward the pillow, slowly now, but I could tell she'd been crying harder, by the dampness on her pillow.

She apologized for getting me up (again: as if I care).
"I love to see them come," she said, "but I hate to see them go."

And we were both silent for a while, and I can't be sure what she was thinking, but I know that I was thinking about all the people who've gone and never made it back: Three of her children, my father included, 10 years ago this week. Her husband. Her mother, her grandmother, all of her siblings. Nana. Uncles and aunts, cousins and friends.

People you said goodbye to like it was any other day, only it turned out not to be. People you clung to as you said goodbye, knowing there'd be no tomorrows. People you waved away, absentmindedly, only to regret it forever.
People who just... left.

And I thought about how brave you have to be to let the people you love out of your sight, even for a moment. Why can't we all just sit around holding hands all day, every day? (Yes, I realize that we'd all go crazy within 10 minutes, but still...)

She lost her mother when she was six years old, and she's managed to make it through everyday of the next 86 years, knowing how fragile life is, but not being able to do anything about it besides live. I know it's all we can do, but sometimes it seems like SO MUCH, like TOO MUCH. 86 years and counting of risking, and loving, and wishing and lasting, and trying, and fighting and fearing, and hoping, and just ... being.

And surviving - sometimes curled up in a ball, and other times with arms open wide - but always surviving.

I know...

I'm a bit behind this week, for various reasons

Reason A = Pull Out Couch of Death.

Reason B = Recuperation from 92year old grandmother's birthday party - more slowly than said 92 year old.

Reason C = Tumblr. And all sorts of Tumblr-y goodness, some of which I will share with you in short order.

Reason D = Doctors and pharmacies that can not communicate with each other, and make me do all the (virtual) running around instead.

Reason E = Lil Girl, Aunt Mac, random dragging out of days.

Reason F = I have been more dizzy than usual, and experiencing more jaw pain than usual, and was thinking it was just part of my Flare (see reasons A & B). Yesterday, all of the sudden, I started realizing that the pain and the dizziness seem to be coming from some sort of pressure in my left ear. I'm pretty sure I have an ear infection. But my temp is not up, so new PCP says "don't come in unless the pain gets worse." Of course, now it is Friday night, and the pain is getting worse.

There are more reasons. We shall skip over them. Instead, I shall give Ms Crazed Mom herself a well deserved shout out for perhaps my best comment ever: "an inability to do physical tasks do not preclude brilliance, commenting on TMZ however, does." :) Brilliant, as usual.

I be back, in a bit. I think it's going to be a long night.

:)

Yesterday was my grandmother's 92nd birthday, and I spent today in bed recovering- hence the late Best Shot, but it's still Monday, at least! The party was great - nobody bickered (or if they did, I didn't know about); there were munchkins for everyone to coo over, food for everyone to eat, and fun for everyone to have.
Grandmother was almost in tears twice - once because of truly heartfelt gift and once because of a truly hilarious gag gift.

Everybody should have a grandmother who requests a weapon for her next birthday, who'll help you search when your sippy cup goes missing (poor Baby O, we still didn't find it!), who'll tell you the potato salad was wonderful even though you know it was too dry.

Who'll sit through a long-winded cousin's story without rolling her eyes, but commiserate with you when you tell her you were thinking of rolling down the porch steps to escape.

Who gets a kick out of her children, her children's children, and their children ~ who you always know is watching, listening, and is guaranteed to catch you in the act.

Who manages to love with her whole heart, even if people sometimes don't notice.

So, in honor of the day, I've been saving this picture from a couple of weeks ago: Happy Birthday, Grandmother ~ many happy returns!

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

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

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

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

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

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

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

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

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

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

Matthew seems to think the suit makes sense, because

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

But he'd also like to note that

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

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

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

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

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

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

Lil continues to make her position clear, stating that

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

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

More than one commenter echoed Hawks' opinion -

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

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

Sarah thought it was important that we know

If I was disabled, I'd kill myself.

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

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

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

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

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

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


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

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

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

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

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



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

"And that's the way it is..."

I was too young to watch Walter Cronkite on the evening news, but, as kind of a history buff, I've since seen a lot of his reports. The two that stick out so clearly in my head right now are the ones in which he is openly emotional - reporting the assassination of JFK and the moon landing several years later. I can't really relate to a newscaster that everybody trusted implicitly (nowadays there's little on television that can be trusted, news or no, IMO), but his humanity is what is striking to me - His deep sense of mourning when he announces Kennedy's death, his obvious awe and abundant JOY when Armstrong takes that first "small step."





Rest in peace, Mr. Cronkite.

On the front porch with you...

Some of the things that I've learned at Grandmother's house -

- Having somebody tell you "I don't think I've ever told anybody that before" is a priceless gift.

- Sometimes paper and pen is the way to go...
- But good luck finding a working pen.

- Progress can be a four-letter word.

- The importance of knowing the day of the week &/or the date can be highly overrated.

- I could do the laundry/make the coffee/bake cookies at home, if things were set up in a way that allowed me to do them. (Social model of disability, anyone?)

- There is no occasion that doesn't call for tea.

- Worrying is a hereditary trait.
- So is fainting.
- And stubbornness.


- Although it is totally politically incorrect, and I realize it is not my place to decide what a group of people to which I do not belong prefer to be called, I think 'colored' sounds a lot nicer, and a lot more accurate, than 'black.' Of course, my father, the first time he saw a black person on a city bus, (probably around 4 years old) called her a "chocolate lady", which also sounds rather nice.

- Cheesecake at 3 in the morning isn't just something you see on TV.

- Letting the phone ring less than 5 or more than 10 times should be a punishable crime.

- Just because there's no fire doesn't mean the electric stove isn't on. AKA Electric stoves are much more tricksy than gas stoves.

- Some people still care what the neighbors will say.
- I am trying hard not to be one of those people.

- It is ridiculously easy to fall out of the 'loop,' and sometimes you don't even care.

- I am very suceptable to other people's speech patterns. Yes ma'am, I am.

- Sometimes a phone call is a lifeline.

- So is something as simple as a postcard.

- Even bad memories are important to share.
- And yet, sometimes keeping something to yourself is a true kindness.

- Make the effort - as much as you can, as often as you can.

- No one needs to watch the news 4 times a day. No one.

- I know that mugs are tougher and more accessible, but I miss the teacups. Drinking from a teacup makes the day that much more special.

- You do not need to be in the same room as the TV to 'watch' it.

- Having to depend upon people to do things for you, especially if you used to be able to do those things for yourself, does not get any easier, no matter your age.

- Asking for help is hard, especially when you have to keep asking: be a good advocate for yourself - and for others - remind people of what's necessary.

- Speak louder. Slower. And make sure it's worth repeating before you open your mouth.

- Even the most devout have doubts.

- Everybody needs somebody who can reach the top shelf.

- There's always going to be a to-do list. It's ok if it becomes a to-do later list.

- Everyone is susceptible to a little girl with ringlet curls, a big smile, and a million questions.

- It doesn't matter what the calendar says: If you're cold, turn on the heat. Even if you had the air conditioner on yesterday.

- There should always be a blanket and a pillow readily available.

- Drop ins are welcome, even if they've interrupted your nap. Or a good book. Try to remember how lonely you were before they dropped in.

- If you've willingly pre-paid your funeral expenses, but balk at getting an expensive, digital hearing aid that will greatly improve the quality of your life, your priorities need adjusting.

- Write things down as soon as you can, because you WILL forget the details.

- It's ok to be in the room by yourself. But be there.

- There's always going to be somebody else who wants to do it their way. Let them, sometimes. Other times, don't.

- Regrets for other people - for the things they've messed up or missed out on - can be stronger than any regrets you have for yourself.

- Even a good show gets stale quick, if you're watching the reruns three times a day.

- Having eclectic taste in music is a real bonus.
- So is a mastery of YouTube.

- When there's nothing good on, just shut the damn thing off.

- It would be nice if the UPS truck stopped here sometimes.

- Some stories will never get old - and some should never be repeated.

- There's always going to be something you don't know.

Stupid computer

Yeah, I missed yesterday, so my July NaBloPoMo challenge didn't work out, but I'm going to blame it all on my computer, which seems to have caught some sort of virus that I have already spent the better part of 5 hours trying to figure out. UGH! I hate it when the computer decides to complicate my life. That's ok, though, I'm just going to pretend that everything is fine now, and once the virus scan stops scanning (for the 33rd time), it will tell me everything is hunky dory. Won't it?

Grr...

Next time, I'm going to make somebody

skip out on work and take me to the midnight showing. But not this year -



which does not mean I am not uber excited Re: the new Harry Potter movie. (Wanna make something of it?)

Image via momentarily

If only I could put it in my pocket

I can think of nothing worth noting about my day. It has been filled with a whole lot of nothing much besides

• sunlight carrying the slight breeze through the windows,

• corn on the cob and steak on the grill,

• the common bird calls mixing with the voices of the kids across the street

A quiet Sunday, exemplified.

Next Sunday, we shall have company aplenty, for it is my grandmother's 92nd birthday. And I know that there will be a moment - between all the cousins playing catch up, and the baby-hogs vying for baby-time, and the much longed for camaraderie of family - when I long for just a little bit of today's peace and quiet.

Because they make a good point about Dumbledore

who should have just TOLD Harry that Voldemort could read his thoughts instead of hiding from him for an entire school year... Check out this article, about lazy wizards. The highlight:

Gargamel is a hermit "wizard" who is the Smurfs' main antagonist. At various times he either wants to capture the Smurfs and use them as part of a potion that creates gold, or he wants to eat them. The Smurfs are a versatile resource for Gargamel.

The case against him:
If successful wizarding were baseball, Gargamel would be the White Sox. His only goal in life is to capture the Smurfs and since all Smurfs are roughly the size of squirrels and subsist almost entirely on a diet of Smurfberries, one would conclude that a basic knowledge of mousetraps would do the trick.

Instead, Gargamel, with the entire arsenal of potions from the wizarding world at his disposal, launches infuriatingly complicated Rube Goldbergian magical schemes, and completely fails every single time.

Being outsmarted by a Smurf is like being outsmarted by one of your shoes. The Smurfs each fulfill a specific function in their little communist utopia, such as being bashful, vain or gay. Take them out of that element and they have no idea how to cope outside of screaming their blue heads off to get Papa Smurf to rescue them. The fact that Papa Smurf usually does rescue them by using his own magical powers means that Papa Smurf is actually a far greater wizard than Gargamel. By extension this probably also means that one of your shoes is likely a far greater wizard than Gargamel.

From The 7 Most Powerful Wizards Too Lazy To Use Their Powers

Must be making plans for HP 6 soon... am VERY excited.

"That's the way to catch a beau..."

That's from More New Math. Let me just add that NTE's Insomnia = The Pull-out Couch of Death (TM) + YouTube Videos of Haley Mills Movies = Having "PollyaANNNAAAA" or the totally anti feminist lyrics from Femininity "You must walk feminine, talk feminine, smile and beguile feminine ... Hide the real you" in your head all freaking day long.


Just in case you were wondering what "every girl should know"



You're welcome. (bangs head against desk) Go play Jeopardy, boost your IQ.

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

Arnold Bennett

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

Check out this amazing discussion by Aimee Mullins about the intersection of disability and design. Highlight:

So people society once considered disabled can now become the architects of their own identities and indeed continue to change those identities by designing their bodies from a place of empowerment.