Probably TMI, if you're a guy

Yesterday I went shopping for a bra.

If you've been here a while, you know that this is a huge (ha!) deal. Besides the whole, FM-having-people-or-clothes-touching-me-in-any-way-is-extremely-painful thing, there's also the fact that I am generously endowed, let's say, and so, finding bras that fit and don't make me want to cry just by wearing them is no small feat.

And yet, mission accomplished!

I went to this awesome, hoity-toity shop called Intimacy in the Copley Place Plaza in downtown Boston, and eventually, I had a personal bra fitting assistant who totally knew her business, and mine too. First off, though - the mall?

Is totally intimidating. Full of stores I have no business being near - Marc Jacobs, Barney's New York, Bergdorf Goodman - you know: Fashionable type places. Also, Insanely Expensive type places. Full of stuff I couldn't afford unless I won the lottery, and then I'd be too busy buying libraries to fill that I wouldn't be bothered. As soon as we managed to find our way out of the parking lot maze, Mum and I both said "uh oh:" We knew we were out of our league here. (I found the store through Yelp, and it had gotten great reviews, but nobody mentioned that it was in a millionaire's mall.)

But we persevered - after an initial bit of wandering, we found the shop, but it was closed because they were shooting a clip for a local TV show in there. Seriously. Models tried on bras in full view of the glass doors as a camera crew shot footage of an older lady (I think she was the owner) showing how each bra fit or didn't fit.

Only at first?

We didn't know they were shooting something there - there was no sign and the door was wide open! - and Mum looked at me and I could tell we were both thinking the same thing: "No way, no how." Neither of us was going to set foot in there if you had to be naked in front of the windows! And cameras! And why the hell were all these people willingly doing that!?!

Then a guy came over and closed the door and told us what was going on, and could we come back in an hour? Holy hell, yes: if it means I can still get a bra, and not be naked in front of the whole world? I will definitely give you an hour.

So we wandered past the stores we could never afford, thinking how money certainly does not equal taste, until we eventually smelled food. We had soup and wraps at Au Bon Pain, and then headed back down to the shop. On the way back we saw headbands that cost $50: for a headband. That wasn't even fancy, or pretty, or... anything. It just held your hair out of your face. So we were pretty sure we could never afford anything at this store, but at the very least we'd get a good fitting, figure out the right sizes, so we could shop more successfully somewhere else.

Back at Intimacy we made appointments - they took our names and everything - and filled out a questionnaire about what kind of bras we usually wear, what we were looking for in a new bra, etc etc. It was pretty humorous, because I wrote something like: 'I have FM and I just need something that makes it possible for me to leave the house without having to cry every time I put it on,' which I think may have confused my fitter a little.

But we finally get called back - separately - to the dressing rooms, which have fabulous non-yellow lights, wide doors and individual spaces, and the requisite full length mirror. While I am none too pleased with the mirror part, I like that the lights are not making things worse (I tend to look sallow under most fluorescent lights, and I am already going to have enough issues being that I'm going to be half naked in a few minutes) and that I can fit the chair into the room, no problem.

Then Angela (my fitter) asks me what I'm looking for, and I tell her. She asks what size I think I am , and I tell her that too. Immediately she says "No way - that's not right," and before I know it, I am shirtless and sitting in the bra I already know doesn't fit, while she checks the tag. With a shake of her head, she bustles out to the showroom, which is lined with drawers full of bras, each clearly labeled by size. She comes back with a handful of lacy bras, and any lasting hope I have had that this was actually going to be a positive experience dies right there.

They do not make lacy bras in my size. My size requires things that say 'minimizing' and look more like two old-timey football helmets soldered together with wires that dig into your skin and hooks that could put your eye out.

Lacy bras are for the lucky ladies who could leave the house sans bra, if they so choose. The only times I have so chosen were times where I was going to the emergency room, and I figured if I injured myself - or someone else - I was going to be there already anyways.

Lacy bras are insubstantial and flimsy - neither of these words could be used to describe my rack.

But I was there, and if I was going to find anything, I had to show her that she was wrong first, so I took off the ill fitting bra I had come in with and was prepared to put on another, just as ill fitting only prettier.

And I was right - it didn't fit. But that's because it was too big. Seriously.

The first bra she brought in was in the size I had told her I was - and I was so wrong. Angela knew it before I did, but after that she explained the whys of it. The cups were not fitting right because the band was too big, she told me. Too big? Something I am trying on is too big for me? I probably would've bought the whole store at that point.

Instead we kept trying - This one was too big in the cups, that one too small. This one had wires that were trying to burrow into my armpits, that one was uncomfortable before she even got it hooked - until eventually I found three different styles of bra that I liked - and one that I even loved. When Angela had finished with me, I was left in the dressing room with 6 bras to choose from - between color options and styles that were just slightly different.

I learned a lot of things I was doing wrong in that dressing room - things nobody ever told me. How you're supposed to wear a bra no more than 3 times a week, alternating them, so that the elasticity has a chance to bounce back, and that they last longer that way. That that piece in the middle is supposed to lay flat against your breastbone - which I didn't even know was possible for me - and that the back strap isn't supposed to be up near your shoulder blades, but about halfway down your back. (Bonus for me: the pain in my back is worse high and low, and the center of my back has the least amount of tender spots.)

I mean, I've been fitted for a bra before, but nobody ever told me these things, which would've been helpful, since I am the least fashionable person I know. I don't know if other women just know these things somehow, or if I missed the class we held on it in school or what, but I don't get clothes. (Or make-up, hair, or shoes, really either.) I don't understand how they're supposed to lay on my body - I mean I see how they work on other peoples' but mine is so different than that. Things don't look the same when you're not standing or walking or when you've got a lot more weight on you.

When I'm trying on clothes, I always figure one of two things - 1) That clothes just don't work right for me because of my unique circumstances (big boobs, sitting all the time, pain making me hunch more or making it more difficult to wear layers, etc.) or 2) That everybody else in the world knows the rules about clothes, and just forgot to tell me. I think most people pick them up by osmosis - or they know what they like/don't like and figure out how to make it work for them. I am not like that... And I usually don't mind, except when I have to look nice.

And the bra shopping - not to mention a hair cut, plus dress, make up (I own mascara. It is too old to wear anymore) and shoe shopping that I still! haven't! finished! - is all because my oldest friend is getting married next week and I can't just show up in my pajamas. And I'd like to look nice.

So imagine my delight at leaving Intimacy with two nice bras (One is even lacy! and purple!), even if they did cost more than I have ever spent on bras in my life. (Mum spent more than I did, and she came out with 2 she loved too!) I know they weren't ridiculously priced, though, and they're so worth it because a) they fit, b) they don't hurt as much because they fit right, and lower (which I probably would've paid twice the price for, because not having to take extra pain meds to put on your bra is worth it), and c) I'm comfortable in them - not just physically, but socially. I know that the different parts of me are staying where they belong, and that's pretty much priceless.

Now I just need a dress. And shoes. And makeup. Ugh.

Still, mission accomplished. And it only took 3 extra pain meds! (People and clothes were touching me, what can you expect?)

" All night hearing voices telling me That I should get some sleep Because tomorrow might be good for something"

If you're one of the lucky people who have trouble sleeping, every night you eventually get to the point where you give up. Where you just say "Fuck it" and roll over and get on with your day.

When that time comes as early as 3:15 a.m., it tends not to bode well for the rest of your day, but you know it's as good as you're going to get.


Night has turned into a dreaded time for me. My fevers rage, for no reason, and I sweat and get sticky. The aches of my day must be accounted for - they make themselves known in ways and places that seem impossible, but are normal to me. I toss and turn - top to bottom, back again - and twist myself up, inside and out.

When I'm 'sleeping', it's like being barely under the surface - feeling every twinge, every twitch; hearing every sound; gluing my eyelids shut against the dawn. I struggle to stay 'asleep:' to go deeper, to go under, if just for a few minutes. I want to claim just a few blessed minutes of peace for myself. But I'm just aware enough to panic if the sleep starts to get real, as if I might drown in it, and I freeze in terror at the thought. I'm stuck there, in this half-sleep state, unable to surface, unable to sink.

Which is when the fun really begins. The debates (with myself) about sleeping pills, which really only make me drowsier, which is not something I need help with.
The deep breathing/meditation routine I've got down pat, but by the third time it gets old, and I'm still not asleep. The internal battle over windows open or closed/blankets on or off/pillows up or down/radio babbling or silent. And, finally, the frustration gets to be too much, and the light goes on while I grab for my book, or the TV clicks, blue light floods the room.

Or I come here, where I ramble on about not being able to sleep, and question whether it's coherent enough to post.

“Chronic suffering creates its own chronic sense of time – a thick, stoical knowledge of how long a day takes to be digested, and of the secret folds and crease of time that a sleepless night conceals. Each portion of the twenty-four hours has its own touchy mood as well. The hours before midnight are sometimes hopeful; the darkness seems fresh, and almost like sleep. Even the minutes between one and two a.m. have their mild drama, the sense of a solitary tryst with the self. And in the middle of the night, the need to be brave for the sake of others is mercifully suspended. Everyone else is asleep. Bodies are at rest.

But the time just before dawn requires serious negotiation. These are scary, bottomless hours. It’s as if every night at four a.m. you have to sign a new contract, with many little riders, agreeing to wake up the next day. And this is when the prospect of going under becomes seductive. Struggle seems bogus, the work of a bad actor. At four a.m. fear and the imagination take over, interpreting every new symptom as hemorrhagic stroke and heart attack. Tumors are nocturnal. Like a dog with a bone, the pain runs away with you.

Then there is the loneliness. No one else is up at these hours, and if they are, they don’t want to be. Partners brew tea, droop, and chain-yawn. Even books seemed closed and shuttered for the night. Late-night radio channels voices from the other side – a kind of wacky Australia of exiles from the day light world. Only wolves, ghosts, new mothers, jazz DJs, and people in pain inhabit this corner of the night.
At four a.m., you have no choice but to lie there and accept the weight of time. Lie submerged in it like a boulder in a cold stream, half in the water, half breaching the air. You are bestride two elements now, like an artist in dialogue with the self. Pain has split you into the subject and the object, where, like Emily Dickinson, you can observe yourself decked out in the coffin of the moment.” Marni Jackson, Pain: the 5th Vital Sign

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Only I never did.

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

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

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

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

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

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

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

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

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

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

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

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

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

But I haven't got any.

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

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.

Who likes parenthesis?

I hope it's you, because this post is full of 'em.

Only Lil Girl showed up today, and she showed up in her best mood. We watched thunderclouds roll through and looked for rainbows when they were gone. (But we didn't find any) We ate all sorts of cheese based meals (mac and cheese, grilled cheese) with very little nutritional value whatsoever and pre-meal whining was at minimum.(Fruit? Never heard of it. And sadly, there were no green beans at hand, so vegetables were also a no go.) We watched half of Toy Story 2 and she fell asleep during the first song of our 'quiet music' playlist. (With a pillow over her face: safety is our call word around here.) (I didn't leave it on, don't worry. But, seriously, who falls asleep like that?) My camera stopped working, but I'm hoping(/pretending) that it's just that the batteries were too low, so I'm charging them all again. (Two pairs of batteries, and the screen was still shutting off... I can NOT afford to buy a camera right now, so let's all say a little chant that it was just the batteries.) I watched 3 minutes of the Michael Jackson coverage and bawled, and was quite glad to miss out on the rest of it. (Blah. I do not know why people cannot understand that if somebody in your family dies, you would like to be left the hell alone... the only part I saw was that little girl crying, and HOW can anybody not be touched by that?) My brother picked up his child before the sun set (for the first time in over a month) and she was ready to go when he got here. And now I am writing to all of you, getting ready for Jeopardy (Remind me to finish that post about Grandmother's house and Jeopardy, so that you can understand how important that is), and being glad that my heating pad is working again (yesterday it decided to not work. At all.)

How did your day go?

Snuggle time

One of the best things about the time I am spending here at my Grandmother's house is that Tuesdays and Thursdays are still my days to watch my little munchkins. Which means that the kids have been getting to spend a lot more time getting to know Grandmother, UJ, and Sister K.

As a result, Youngest Nephew is now aware that UJ is an excellent baseball coach and that Grandmother's favorite soda is cream soda, and that her family used to make their own root beer in the cellar every summer when she was a kid (80 odd years ago). Lil Girl knows that Sister K's room is an unmitigated disaster area, that she can con UJ into taking her up to the park if she asks in just the right way, and - perhaps the most universal truth in our family - that a grandmother's lap and a rocking chair is the most comforting thing in the world. (Or, in this case, a great-grandmother's lap.)



Starting the week off on the right foot, with this Best Shot. Don't forget to visit Tracey for other fabulous shots!

Am spending time in hiding,

considering that some people are in very mad moods. Is it kind of sad that my response is to want to read them Alexander and the Terrible, Horrible, No Good, Very Bad, Day?

Yeah, that's what I thought.

Maybe next time.

Piddle ...

I'm listening to the traffic that follows the 4th of July spectacular here - perhaps you saw my across the river neighbors on the television? - and am glad to have spent this fourth here, at Grandmother's house. I know I've done (more than) my share of complaining about the fact that I am still here (66 days and counting), but that's only because I long for home. My bed, my things, my complete ability to not get dressed for 37 days in a row if I so choose home. The company here is splendid, overall, though, and I'll admit I may just have been in the place I needed to be tonight.

Because, since I've been sick, the 4th of July was something I did with Nana. With the rest of my family moving off to one rooftop or another to try to catch the best view of the fireworks, Nana and I would watch the Pops, mock the line dancers who couldn't hold the beat (could FIND the beat), and shake our heads at the fact that people needed karaoke words for Yankee Doodle Dandy. She would walk away in disgust as acts like Aerosmith "paraded around like pansies" or Big & Rich "screwed up even the Star Spangled Banner". I would tune her out or in, accordingly, waiting till she came back from her latest cigarette to tell her about the doofus with a really tall Uncle Sam hat. And she'd be settled in with her last hot cup of tea by the time the fireworks started, and she - who didn't really understand the point of special effects in movies or anything like that - would be captivated, would gasp and point out her favorites like any member of the crowd. It was something she didn't really enjoy in person ("too much smoke, people & bother," she'd say), but on TV, it made her face light up. It came back to me, all in a wave tonight, that she's not just at home watching without me, that I won't get to watch them with her again. And so, the tears then, and now, as I sit listening to the honking that she would've cursed, because it's still hard to know that.

Watching tonight with Grandmother & UJ was different - UJ was pissed at the people in the street who let their dog run loose, for one thing and so it was a bit tenser than usual - but it was good. It was happy. Grandmother didn't let the fact that she's not a singer stop her from singing along to the patriotic music (like I do), and she appreciated each extra sparkle and twinkle that the fireworks could provide, each time a little painted face came up on the big screen. It was good for me, and I think, good for them (I guess they don't usually watch: which - sacrilege!) I heard the stories of when they used to go to the fireworks, of when Arthur Fiedlder was leading the Pops, of the time my eldest cousin pouted all the way back to the car (because my uncle made them leave early to beat the traffic - I don't get that either).

I miss Nana - all the time, every day - but today was a little bit easier because I was here.

But here's a movie I introduced my Revolutionary-War-Lovin', 5th-Grade-Teaching Nana too, and a song, just for her.

Did you ever see that movie...?

In other news, Yes, I am still at Grandmother's. No, I do not want to talk about it right now. Except to say - Did you ever see The Money Pit? It was always one of my Dad's favorite movies, and anything that made my dad laugh hard enough to cry was in frequent viewing rotation in our house.

It's about a couple who buy their "dream house" and how the house then crumbles around down around them, making the couple crazy bit by plastered bit. It's a hilarious movie, if only because Tom Hanks does that little barking laugh thing that he does, and I find that pretty dang funny. Here's the laugh:




Anyways, during the movie, there's a running gag: each of the workmen (contractors, plumbers, electricians) who come to work on the house all promise that their work will be completed in "two weeks". Months pass, work continues, and yet, always the reply is "two weeks." The "two weeks" quote became one of our family sayings, whatever we'd all say when somebody asks us how long what we're doing is going to take and we really have no frickin idea. It's really come around to bite me on the ass though, this time. Because I've been hearing "this weekend" for the past 2 months. So "this weekend" is really just code for "two weeks". It's not as funny when it's true.

But the scene where Walter (Tom Hanks' character) is stuck in the rug? Always funny. Always. (Sorry, the only clip I could find was of very poor quality.)

Bits and pieces

Here are some (very) random words/phrases/quotes from things I've been reading lately:

• "People induce labor by various means including: breast stimulation, sexual intercourse, herbs, vaginal lubrication, abdominal manipulation, hot bricks pressed on the abdomen, friends beating and kicking the abdomen, hanging the mother from a tree and community members pulling on the abdomen, gagging the mother so she will spasm, slapping and yelling at the mother, episiotomy, and stretching the vagina." Gulp. from a very interesting post on the myths of childbirth

• "In order to prevent the resurgence of Nazism, Holocaust denial is illegal in a number of European countries." I think that's pretty cool, even if it does rub my liberal, American, free speech loving soul the wrong way. From wikipedia

• "Human beings are hardwired to see patterns. Seeing links and connections between various stimuli is a big part of how people navigate complex environments. Back in the earlier days of our evolution, it helped us to hunt and find food; today it helps us deal with people, keep track of large amounts of information and figure out just what the fuck is happening on Lost." Seriously: WTH is up with Lost? I didn't see the last 3 or 4 episodes, but even so, I don't think they'll be helpful. Am very much looking forward to the final 18 hours of this show. I will need everysingleminute of those 18 hours to be explanatory, but that's ok. From Cracked

• "And I've learnt not to show impatience, never to be grumpy. Before, as a "standing" person, my occasional bad mood was tolerated: now I must exhibit unfailing cheer, grace and humility. We wheeled citizens had better appreciate others' Samaritan actions, lest our ingratitude causes offence!" Nodding Head. From standing up for the seated
  

• "As someone living with fibromyalgia, when faced with articles and attitudes like these, I find myself at odds between the desire to be a peaceful sort and the urge to take a tire iron to the denier, yelling as I work them over, “IT’S OKAY! IT’S NOT REAL!” Amen and Hallelujah! Why didn't I ever think of that? From the comments on this awesome post about the freaking ridiculous Salon article that said it was attacking Big Pharma, but was, in reality, attacking FM patients.
  
  

15 books

I haven't been tagged, but I rarely am, so I have to hijack other people's memes. Here's one I've seen floating around for a while - 15 books.

“Don’t take too long to think about it. List 15 books you’ve read that will always stick with you. Choose the first fifteen you can recall in no more than 15 minutes. Tag 15 friends, including me.”

In no order:

1. It by Stephen King. One of my top 5 books of all time. I read it when I was the same age as the kids in the book, and the idea that kids had power was so shocking to me. Welcome, but shocking. And it always makes me think about how people underestimate children, and how we think of the children we know in relation to our own lives, sometimes forgetting that they have lives of their own. Plus, it has the scariest clown ever.

2. Little Women by Louisa May Alcott. I first read this book as one of those cassette tapes that were popular in the 80's: "you can read along with me in your book" and I can not overstate how much I wanted to be one of the March sisters. When Amy burned Jo's book, I wanted to jump into the pages of the book and tear her hair out. But when she fell into the ice a few pages later, and I heard the sharp crack of it - I gasped and nearly cried, thinking of Jo and Teddy on the edge of the ice, trying to pull her up. Of course, I always do wind up crying whenever I read it, but that is the reason this book lives in the freezer.

3.Century by IDK. I have never seen this book anywhere besides my Nana's bookcase, and somewhere along the line, that got misplaced (or taken), so I don't know who wrote it. I can also barely remember the plot. What I do remember is that it was in a shelf of books that I was "too young for," and that meant I had to do whatever I could to get to it. It had a shiny gold cover, and was, in reality one of those really horrid romance novels that gives people the impression that the romance genre is a wasteland, but oh how I wanted to read it. I would sneak little snippets of it while in the sunpalor by myself, and, being 9, was shocked that there were NAKED people doing NAKED things in it. I wasn't interested in any of that then, but knowing that I wasn't supposed to be reading it gave it all an extra thrill.

4. Twillight by Stephanie Meyer. Because there's no way that this book is good - it's not written well, it doesn't have an original plot or unforgettable characters, and you spend most of the book (hell, the series) wanting to help Bella grow a spine for god's sake, and still it is Full Of Crack. Addictive as hell, and almost as stigmatizing. Plus, it's brought 2 of my sisters back to the realization that reading is not just a waste of time, but rather, an enjoyable waste of time. ;)

5. The Monster at the End of this Book by Jon Stone. One of the first books I learned to read on my own. One of the first books Youngest Nephew could read on his own. And a perfect example of if you want kids to read, to learn that reading is fun, to LOVE it like you do, you have to put on a show.

6. Jewels of the Sun by Nora Roberts. Made me a Noraholic, an ADWOFF-er, and made Nora, and her alter ego JD Robb, an auto buy for me. Always.

7. Ethan Frome by Edith Wharton. Because Oh My Sweet Jesus, why? Why does a book so boring and bland get to be required reading? This was almost an entire semester's worth of work my sophomore year in high school, and it showed me why other people thought reading was boring. Because there isn't a single moment of this book that I didn't read hoping against hope that some axe murderer would come in from all that snow and just kill everybody.

8. By The Shores of Silver Lake by Laura Ingalls Wilder. Because between this book and the one before it, Mary had gone blind (Spoiler Alert, sorry). She had scarlet fever and all in the previous book, but everybody had been fine, dealing with it, whatever. And then I opened up the next book, and Bam! Blind. WTF? It was very upsetting, and I cried for a good hour.

9. Reviving Ophelia by Mary Pipher. Because she was talking about me. And everybody I ever knew. This idea that girls get, somewhere along the line, that they have to pretend to be what they're not, that they can only exist within the narrow confines of the place society has marked out for them was so specific, it seemed as if she were writing about my life. I was a college freshman when I read it, who didn't have any of the terminology about gender roles and patriarchy and all of that, but once I saw it, I couldn't unsee it. And that's powerful. (Also under this category, books on the second shift, on disability, on any of the sociological -isms we see everyday; on consumerism, on ecology, on the green movement and my role in it.)

10. Harry Potter and the Deathly Hallows by JK Rowling. Because I read it with my sister at my side, all in one big gulp, the day it came out. Because I had to put the book down more than once to cry properly. Because the next HP movie comes out in like a week and a half, and I MUST see it. Because HP and his gang of gawky teenage wizards have given me more enjoyment in the past decade than any other cast of characters I can name.

11. Lies my teacher told me by James Loewen. Because WTH with all the lying? A key element in my evolution into a critical reader. And thinker.

12. The Painted Bird by Jerzy Kozinski. Because it was a truly terrifying, ick-filled, horror of a read. I felt dirty by the time I finished it. I still kind of do.

13. Illness as Metaphor by Susan Sontag. Because, again, she was writing about me. And how society sees me, and tries to make me see myself. And because I finally felt like I wasn't the only person who thought that society was full of crap when it came to people like me.

14. Where the Sidewalk Ends by Shel Silverstein. Because "I cannot go to school today said little Peggy Anne McKay. I have the measles and the mumps, a gash, a rash and purple bumps. My mouth is wet, my throat is dry, I'm going blind in my right eye..." Sick. The first poem I ever memorized, and, when I was 7, the best poem ever. "What? What's that? What's that you say? You say today is Saturday? G'bye I'm going out to play!"

15. All I Really Needed To Know I Learned in Kindergarten by Robert Fulghum. Because it's totally true. Observe: "

"Share everything.
Play fair.
Don't hit people.
Put things back where you found them.
Clean up your own mess.
Don't take things that aren't yours.
Say you're sorry when you hurt somebody.
Wash your hands before you eat.
Flush.
Warm cookies and cold milk are good for you.
Live a balanced life - learn some and think some
and draw and paint and sing and dance and play
and work every day some.
Take a nap every afternoon.
When you go out into the world, watch out for traffic,
hold hands, and stick together.
Be aware of wonder.
Remember the little seed in the Styrofoam cup:
The roots go down and the plant goes up and nobody
really knows how or why, but we are all like that.
Goldfish and hamsters and white mice and even
the little seed in the Styrofoam cup - they all die.
So do we.
And then remember the Dick-and-Jane books
and the first word you learned - the biggest
word of all - LOOK…"

Consider yourself tagged - please play along if you're a book nut like I am. And tell me here, if you do, because I'd love to see your 15.

Bring on the new month

Ok, so June - as far as this blog goes - was pretty much filled with suck. I tried a lot, but accomplished very little. (Very little meaning things like, oh, still having your freaking CHRISTMAS banner up the top there, with it's little snowflakes and such. It is such a good thing I do not have my own house - I would be the annoying neighbors who never take down their twinkle lights.)

We all know the reasons - feeling like shit, still being at my grandmother's house, a full 2 months after everyone else has moved into the house that I'm actually supposed to be living at (I do not say 'my' house, because it in noway feels like 'my' house), just general chaos and craziness and blah feeling - so I'm not going to go over them again right now, but I kind of just decided that I'm going to attempt another NaBloPoMo type thing, and try to post something everysingleday for the month of July.

The reasons being that I tend to feel less like crap if I've taken the time out of my day to say something to y'all - even if that something is just a quick "Hey: feeling like crap, so no real post today" type of post. Plus I've got a backlog of pictures and good quotes, and random things from around the webiverse, so I can always post some of those... it's about taking the time, I think.

So, there it is, in blue and white (are my words still blue? Holy jebus I need to get crackin on a new template.): come back tomorrow for something new.

Even if it's just a hello.