For those of us who can't shut our stupid brains off

Here's an image or two that might make particular sense to you:

via Quotebook


via i can read

And, just for a change of pace:


via icanhascheezeburger

:) Snap your way through the day, why don't cha?

A little bit on the whiny side, I'm sorry to say.

Every phone call with my mother ends the same way now: with her telling me about the work that's still not done, and me trying to think of something to say that isn't twisted and harsh and bitter.

I don't like it, and I know it's not her fault that things are moving so slowly, and I know that I am lucky to have a place to be that is safe and warm and where I am loved and I know it's just stupid & useless to feel sorry for myself, but I do.

I feel like I don't have a place.

I just don't belong anywhere -

As much as I love it here, and spending time with my grandmother and sister and uncle is amazing and wonderful and great;

As much as I know that Mum and Dad are working and painting and scraping and getting estimates 4 days out of the week;

As much as I know that this is all temporary and eventually, there'll be a house I can get in and out of, with a brand new cozy bed I just paid a lot of money for, and a bathtub I can take showers in and a kitchen I can cook in and a room where I can let the kids just play and not have to worry about them breaking something that's 115 years old or waking somebody up from a much needed nap.

As much as all that is true, right now?

At this moment?

I feel ...like those days are still too far away.

like I've overstayed my welcome, no matter what they say

like nobody who's supposed to care, actually cares enough to do the things that I can't do for myself. Or to find out how I'm doing, or to even think that I might be upset by the way things are playing out.

And, wow, am I upset.
I'm angry, even.
I'm shocked at how angry I am - that people can't be trusted to do even the simplest things, that time keeps passing, that I'm so useless, that I keep getting worse, that nobody seems to be worried besides me. I'm angry at myself, and I'm angry at just about everybody else.

Not all the time, not even most of the time... but today. Today I am.

I know it's because I'm feeling so much worse, and because the longer I stay here the harder it gets to pretend I'm still ok, and because the harder it is to pretend, the more I cause the people here to worry, or to go out of their way, and the more I feel like a big fat burden.

And also? Because I am just so sick of pretending.

I'm at the point where I can't hide the fact that I get tired halfway through making a sandwich and have to lay down for 3 hours. At the point where wearing a bra 24 hours a day - for modesty's sake - is no longer an option (hell, most days, it's not even an option to put it on at all) and I almost don't even care that they know I haven't taken a shower in almost 2 weeks. At the point where they can see that I save every last drop of energy for those two days when the Lil Girl (&/or her big brother) is here, and the rest of the time recuperating.

It's all the little stuff that doesn't matter when I'm at home, that matters big time here. And it only matters because I let it: I know that my grandmother doesn't think any less of me because I have greasy hair, or that my uncle is going to be thinking I'm lazy because I just can't clean up those dishes I left in the sink.

But I'm not without pride. I don't like people, even the people closest to me, to know how much I can't do, to see how much help I need to make it through the day. It's not a choice, though, when I'm staying here. It feels like all of my flaws, all of my faults and failures, are on display, all day, everyday.

And even though this rant is full of angst and all 'poor me', I know it'll pass soon. I'm already embarrassed that I even wrote it, because reading it back for errors makes me sound petty and like I don't appreciate all I have. I do. I really do.

But I'm not going to pretend it never happened, I'm not going to keep on pretending, at least here, that I'm not bothered by the fact that I still have no home. Or the fact that the majority (not all, but most) of my siblings have only contacted me in the past two months when they needed me to do something for them, and then promptly forgot that I exist. Or the fact that, at 30 years old, I have to constantly eat food I don't like because I can't just fix my own or watch the news b/c if I don't stay in the living room till 11:00, I'll cause people to worry.

I'm going to give myself this space to not have to bite my tongue or to not have to use my "I'm totally fine and can socialize like a normal person" voice.

And then I'm going to take a deep breath and open the door again, and try to convince my uncle that he'd really just like to order a pizza tonight.

As always, thanks for listening.

My Best Shot

Here's Lil Girl & Sister K practicing on the piano.

If there is a 3 year old in your life who has access to a piano, then you know that practicing actually means "making as much noise as humanly possible," and so you can appreciate the patience of SisterK appropriately.

Happy Monday, all. Now head on over and check out some more Best Shots.

If I could explain it to anybody,

it'd be you.

But I can't. I just don't have the words. All I have are all the things I want to say, and no words that make sense when I say them. I'll try again later. Just know I'm thinking about y'all. Hoping your day is going along in as positive a way as possible. Be back soon.

As usual

Sorry about that last post, peoples - I have no idea why the video didn't post, and no energy to try to fix it right now. I will try to get to it by the end of the week, though: how to feel stupid and lose blog audience - attempt to upload video for the first time, do not complete (even though blogger never told you it didn't upload), and then disappear for days at a time. Good work.

(Dope slap)

I have no other news right now, but can post a few of my flickr pictures as penance - they are already edited, so all it requires is that I click the buttons: easy peasy, hopefully.

Let's see what I've got for you -
Here's the newest member of our family, she's about 2 months old now. She's my cousin's baby, which I can never remember if that makes us 1st cousins once removed or 2nd cousins... I'll have to look it up (again). She's baby Fi -


Youngest Nephew on the phone with SisterK, who was in San Francisco on a trip. He was warning her not to change her allegiance to the Red Sox just because she was in California. I was trying to make his freckles pop in the picture, with varying degrees of success.


Lil Girl & SisterK, after Lil Girl realized that she was in the Dora cartoon I bought her for her birthday - I think she likes the idea:




Lastly, these are the pillows at the hotel I go to to take my showers. It's some advice I could take as well as give:

More pictures of me in one post

than you've seen in the 4 years of this blog put together.

Today is my 30th birthday, and I'm having a pretty good day. I'm ignoring my pain as much as possible, heading to the hotel to take a hot shower, and sitting on the front porch with my grandmother, feeling the cool breeze and listening to the life stories of people I wish I'd known (or known better). As a rule, I don't particularly like pictures of me, and I've been stingy when it comes to posting them here, I know. But I'm in the mood to look back and to look forward, and I thought this would be a nice way to do that.

You don't have to watch the 3 minutes or so of pictures from my life: I'll give you the Cliff Notes version if you'd like. For all my challenges and issues, through all the disappointments and losses, I've still been one lucky lady. I have a lot of people in my life who love me, who I'm lucky enough to love, and who've made my life a real experience. It's never been easy (see: name of blog). It probably never will be. But, for today, all I can be is grateful. (It's too bad only one person in any of these pictures will read this, but I'll try to tell the rest of them in person, if I can.)

Have a great weekend, everybody: I'm going to try for a computer free weekend myself, but we'll see how I'm feeling tomorrow.

I know posting is still light,

but it's probably just because everything else feels so heavy.

I'm struggling to get things accomplished here, in the limbo of my grandmother's house, faced with new challenges and none of the old comforts. Which is not to say I'm not enjoying the new - and unique - comforts I'm lucky enough to get here: it's just that they're not what I'm used to, and so I find myself unsure how to balance having someone to talk to till the sun comes up with my need for laying in the dark for hours. Trying to decide if it's worth it to sit on the porch for an hour feeling the beautiful breeze and remembering every summer I've ever lived through, if the price is going to be a complete in ability to move for hours afterwords.

I suppose it's just that I had a routine, and now I have to figure out a whole new one, and then I'm going to have to figure out another new one in a few weeks when I can finally move into our new house.

I don't know what the point of this post is, except to tell you that I am still here. Figuring it out, getting through the days.

Hope the day you are getting through is treating you kindly.

Mine is.

"But I want the pickle..."

Celebrity Jeopardy, as portrayed by SNL, is one of my go-tos when I need a laugh. I couldn't be happier that there was one I hadn't seen yet. :) Hope it gives you a giggle too.

The Collective told me to

1.One of your scars, how did you get it?
I have a chicken pox scar, a little moon-crater, over the arch of my left eyebrow. The scary thing is that my brother and sister - who both had the chicken pox at the same time as me, have very similar scars. There must have been something in that strain?

2.What do you want more than anything right now?
A hot shower. A really, really hot shower.

3. Do you know what time you were born?
I was born at 8:30 pm on a Tuesday night, at the conclusion of Laverne & Shirley. I don't know if my mom was waiting for the show to be over or what.

4. What was your favorite toy as a child?
My nana's dollhouse. It was elaborate and breakable and off limits till I was 7. But once I was allowed to use it, it was like I had my own little world (where they had both a spinning wheel and a TV: Anachronism was not in my vocabulary then).

5. The Best TV show ever created
Since Joe already answered this correctly, I'll do the runner-up: The Daily Show

6. The last person you talked to
My Uncle sneezed and I god blessed him.

7. Do you get scared in the dark?
Yes, if necessary.

8. The last person to make you cry?
My Grandmother's been telling me stories from her childhood the past three weeks: She lost her mother when she was 6, 2 of her five siblings in WWII, and the last three within the past 5 years. So, definitely her.

9. How many wisdom teeth do you have
Zero. I had 4, but I didn't have space for them (or 8 other teeth, for that matter).

10. What is your favorite cologne/perfume?
Do not like. Can not use.

11. What kind of hair/eye color do you like on the opposite sex?
No preference. But if they have an accent, then I'm there.

12. Would you rather be smart or funny?
I'd rather be funny, because you can always learn more, get smarter. Funny is natural.

13. Coffee or energy drinks?
I don't like either, but I'll have a cuppa (tea, that is).

14.If you could eat anything right now, what would it be?
I'd really like a steak and cheese sub with pickles, and some of those thick cut steak fries. Greasy, hot, and salty: Yum.

15. Who is the last person you made mad?
My brother. Cuz I'm right, and he knows it.

16. Do you speak another language?
I know a little bit of most of the romance languages, but not enough to remember the word for 'purple' when Lil Girl is asking me for it.

17. Do you like someone?
I don't, but I'm open to.

18. Would you fall in love knowing the other person is leaving?
Would I have any other choice? If you can stop the fall, it's probably not love.

19. What is the best way to tell someone how much they mean to you?
You could get them a conversation pot. Or direct traffic to their new etsy shop. :)

20. What annoys you most?
People who think it's ok to say hurtful things: It's not, FYI.

21. Have you been out of the US?
No: wanna take me?

22. Your weaknesses?
An accent, a sense of humor, sexy nerds holding babies.

23. If you could get plastic surgery, what would it be?
When I was a kid I thought I had the biggest nose ever, but then I grew into it. What if I had surgery and then the rest of me grew so that it would fit the original part? I'd look pretty odd, I think.

24. Why did you fill out this survey?
Because I want to be cool like the Collective.

25. Are you too shy to ask someone out?
I don't think shy is the same as socially awkward, so no.

26. What do you get complimented about the most?
Apparently, I am very patient. I did not know this about myself, but people keep telling me I am. Perhaps they should instead be complimenting my ability to hide my true feelings about things.

27. What would you do if alcohol became illegal?
I'd have to start a rehab for all the drunks I know, I suppose. They'd be a mess.

28. How many kids do you want?
More than I currently have.

29. Were you named after anyone?
My first name is from a pop song, my middle name is my Mom's name.

30. When did you last cry?
Didn't we already talk about this? Why do I have to keep telling you that my grandmother was almost put on an orphan train headed for Tennessee?

31. Any bad habits?
Of course. I have a hard time admitting when I'm wrong, even over something as simple - and easily verifiable - as movie quotes. (I could have sworn it came from Caddyshack.)

32. If you were another person, would you be friends with you?
I hope so.

33. Do you know anybody who's famous?
I really, really don't.

34. Do looks matter?
The looks you give me matter, so you better not be staring at the chair, buster.

35. How do you release your anger?
I'm good at the long seethe: so that just when you only vaguely remember the thing that you've done to wrong me, you'll be surprised by the venom of my response.

36. Do you trust others easily?
I'm no pushover, but I'm always looking for the nicest explanation to things, so I might believe that you really did lose power just to your alarm clock, or that your homework was bacon flavored, and thus, attracted your dog unduly.

37. Favorite thought-provoking song?
I have neither a favorite thought-provoking song, or a suitably witty joke song.

38. Favorite day of the year?
The first day I can smell fall.

39. Favorite expression?
Although The Collective has already used it, it's got to be "That's what she said." Which fits nicely at the end of more than one of my responses. I'll let you decide which ones.

Yesterday I fell

Not a graceful little half-fall, where you manage to catch yourself feeling woozy in time to fold nicely onto the floor, chair, or closest hard surface, but a full out, "let's see how much damage I can do on the way down, before I hit my face - and any other available and tender body parts - on every sharp corner and solid piece of wood like the table and FLOOR" kind of a fall.

And can you imagine that that was not even the worst part of the fall - the actual falling? No, no - the aftermath is so much worse.

Because I was alone when I fell, and I would have liked, if possible, to keep the information to myself.

It happens: I fall. It's a part of my disability, the reason I am in a wheelchair in the first place, an unwelcome reminder on any given good day that I am not nearly as well as I like to pretend I am. Nowadays, I mostly know when I am pushing too hard, and don't even attempt to transfer from chair to bed on my own when I am feeling that way. I just ask Mum to help me get from point A to point B, and don't mention it's because I'm afraid I might fall on my face. (Thus explaining one of those confusing parts that SisterCh likes to harp on: "Why do you ask for help doing things I've seen you do on your own?" Her explanation, is, of course, that I do it for the attention. The actual explanation is that I want to avoid the need for emergency medical attention, but hers fits her "you are making things up" theory much better.) But I am at Grandmother's house, so unless I wanted to ask a nearly 92 year old to help lift my fat ass, I was on my own as far as transfers went yesterday.

And yesterday was a fabulous day - I saw Youngest Nephew for the first time in a month, and we talked and drew, and played games and blew bubbles and I tried to teach him how to use the speed motion capture mode on my camera. It was great. Exhausting, but great. Pain level high, but happiness level high too, so who can complain?

So, after he left, I needed my heating pad, which was in the other room. Plugged into the wall, low down on the wall. I got it out, feeling particularly woozy after the bending over (as usual), and waited a minute before I got back in the chair, and came to 'my' room across the hall. Which is actually their den, with it's lovely & lifesaving pull out couch, on the other side of which is the plug I need to access to get the heating pad in my hand to actually warm up. So, I scooted carefully across the bed, put my feet on the floor, and tried to leaaaan over a bit to reach the plug. No can do: plug is blocked by a speaker and leaning over any further is prevented by a rocking chair. I considered just laying down without the heating pad, but did I mention: OUCH. Must make things even the tiniest bit better. (If you've been here long, you know that I will use the ice/heat numbing capabilities in the middle of both heat waves and blizzards - every little bit of relief is necessary at any possible times.) Next option: crawling, which, while painful manages to cover two not-fainting-now bases - am not standing, and therefore my blood won't pool in my feet, and if I do faint, I am closer to the floor and will, therefore, get hurt less. But straight crawling is also out - I'm going to have to stand to get through the space between the speaker and the chair, and then I'm home free.

Since I've already told you I fell, I suppose you can guess what happened when I stood up - ever so slightly! - to try to get through the tight space? Exactly: kaboom. I banged my face on both the corner of the speaker and the floor, and the rest of me on lots of corner type things and edges and then the floor. So, yay for pain management technique, you idiot, now you are in even more pain. AND you are trapped in a corner.

Because after I pass out, even though it's quick, it sometimes takes me a while to be able to sit up again, takes a while for my coordination (such as it is) to come back, takes a while for me to be able to get past this new pain to a point where I am willing to believe I might actually be able to live with it. And so, 20 minutes later, I am sitting up, stuck in the corner, because there is NO WAY I am standing up again to get out of here... even I am not that stupid.

So I try pushing the speaker over, but the computer is plugged in, and I'm afraid that if I push it any further, the computer will take a tumble too. Not acceptable. I try pushing the rocking chair (which is of the lazy boy variety, not the light and airy wicker type), and I manage to nudge it over a few inches until it bangs into a table. Alrighty then. Can I get to my knees in the space I've made?

Still no.

Plus, also? After passing out, I sometimes feel very pukey. I don't know why, and I've never asked the doctor, but sometimes I do even throw up. So now, as I'm trying to unwedge myself through the space, I also am trying very hard to not throw up. Because the only thing worse than being stuck, in lots of pain, in the corner, is being stuck, in lots of pain, wedged in the corner and sitting in vomit. I speak from experience here. So I did all of the little breathing tricks you do when you're trying not to throw up - quick, small breaths, slow deep breaths, breathing just through your mouth - and I put my (now throbbing) head against the chair, against the speaker, and, finally, back against the cool floor while I waited for each wave of naseau to pass.

After about 25 minutes, with one foot way past the numbing tingles and totally into flat out asleep territory, and the other starting on it's way, and with very little additional progress made, I decided I would not be able to get out of this on my own. You may call me stubborn, it's ok: I've heard it before. But the thing is, not only do people make a huge deal out of the passing out, not only is my grandmother a championship level worrier already, not only was there the added complication that I could feel my pants sliding down in the back but there was no way I'd be able to shift my weight enough to pull them up before help arrived, but my only means of help was Uncle Jack, who has been sick as a dog all week and I didn't want to disturb him.

And I am making it seem funny here, and it is now, looking back, but sitting there? Knowing that all you have to do is move 1 foot - maybe 18 inches - until you are safely on the bed, and knowing that you Can. Not. Do. It.? Is impossibly difficult to describe. I knew I couldn't do it, but admitting it? Felt like giving up. I felt weak and useless and stupid for getting myself into that position in the first place. It's demeaning to ask for help, even when you are used to it, even when you know you don't have any other choice: sometimes it just is.

Also, and I may not have mentioned this about my grandmother's house - she has a hard time hearing, so the TV in the living room (the ONLY TV in their entire house, if you can believe it) is so loud that I can 'watch' an entire show from my perch across the hall. It's loud enough that I wear the earplugs I take to the movies if I am sitting in the living room watching it with her. So I had to wait for a break in the action before Uncle Jack heard me. Do you know how rare it is for a television to be absolutely silent?

Rare. Trust me.

45 minutes later, I was finally rescued - there was, gratefully, no flashing action, as my pants remained low on my hips and my uncle remained in front of me. It took him about 45 seconds to help me get onto the bed, from which I have yet to move. (It's about 15 hours later. I really need to pee.) He, thankfully, understands about Grandmother and the worrying, and so did not say anything to her after he helped me up - although he did some worrying on his own, which was sweet, but I was so upset, I don't think I handled it very well.

The rest of the night passed without incident (but with a heating pad, as UJ plugged it in for me), and I'm dreading what I see in the mirror this morning, because I can feel how swollen my face is. Explaining that away may not be quite so easy. But I'm only a little worse for the wear, and I'm going to stay in bed today (with exceptions for the bathroom, because, really: 15 hours is a lot), and tomorrow I am going to the hotel to take a very nice, very hot shower, and that will be AWESOME, because I definitely need it. I'd go today if I could.

The physical part was tough - I'm hurting today, I won't lie - but I am constantly surprised by how much emotional strength I need to get through the things my illnesses bring. It's taken me years to realize that admitting to the emotional difficulties of my disability is not admitting to weakness, or looking for pity, or being overly dramatic: It's hard, this constantly accepting that you have limitations, this knowing that something that "should" be easy for you to accomplish is going to be harder than suddenly sprouting fins or wings or claws (unless you are an X-Man). It may even be impossible.

It's hard to accept that, but I can do it.

Bruised face and all.

Getting back into the swing of things

with a best shot for this Monday.

Lil Girl, enjoying Grandmother's garden last week. I've got a series of her and Uncle Jack playing hide and seek that I'm working on, but this one brings a sunshiny smile to a drab and dreary day.

Don't forget to head over to Tracey's for more Best Shots.

So, where have I been?

Well, on April 30th, we finally sold our house. The weeks leading up to that day were fraught with millions of tiny little details that had to get attended to, more than one overly emotional scene, and an impossible to measure amount of exhaustion. I'm sure that this is true for anyone who is selling and moving out of their family home, but I have to say that, for me, it was both surprisingly easy in some unexpected ways and intensely, intimately difficult in others. But by the time we finally got to the point of passing the papers (2 days and 1000 little-things-going-wrong-at-the-same-time later), I was ready to be done. I had said my goodbyes and packed up all my memories along with my belongings, and I was ready to move on.

Since the 28th of April, and the final big cleaning push of the old house, I've been staying - gladly and thankfully - at my grandmother's house. I've had a (mostly) fabulous time, getting to spend time with Grandmother and UJ, watching Lil Girl get to know them better - and watching them enjoy her as much as I do -, and just really enjoying my visit. But that's the thing - it's just a visit. I'm not home. I'm not in my own bed, with my own things, in a place where it's ok to just lie still all day without setting off all kinds of alarm bells for other people. (Mum knows that on bad days I don't so much as roll over: Grandmother thinks it's cause for emergency interventions, and should she call the doctor?)

It's just not my place, and the longer I stay - and I'm nowhere near the end of my stay, as illness and injury, as well as a few siblings who seem to have forgotten our new address, have contributed to the new house not even being a quarter of the way ready for me to move in - the harder it becomes for me to keep up the energy required for being in proper 'guest' mode. It's exhausting just to deal with my normal pain, and then you have to add in the fact that there are no showers here, so there's none of that temporary relief (though I did escape last week to a hotel room for a shower, and I'll do it again next week too), plus the fact that I'm sleeping on a pull out sofa bed, which isn't exactly the leading contender in comfort; plus all the additional work I have to do to get myself through the day - breakfast at the table, getting to the bathroom on my own, transferring from the chair to the couch to the chair to the bed a lot more times a day, the fact that any of the stuff I have to do is just a little bit more complicated because none of the things I need are set up to be right on hand, like they are at home: well, it's been a challenge, is all I can say.

And, yes, I know that I don't have to be in 'guest' mode all the time, but it's what I do. I'm surprised at how much I manage to 'hide,' about how much I feel I have to hide, so that nobody knows how bad it really is. This might be ok if I'm only seeing people for short periods of time, but long term? It's impossible. And I'm finding it scary, how vulnerable I feel, even though I know that Grandmother and UJ love me and they're my family. I don't know why it's so hard to show them how much pain I'm really in, but it is. It's like I'm letting them down, not being the person they expect me to be, or like I'm hurting them by showing them the truly overwhelming nature of my illnesses.

I've had to cut out things like my breathing doctor appointments, because trying to get in and out of the house once a week - which means climbing down 3 or 4 steps, into and out of the car here and there, then there and here, then climbing back up the 3 or 4 steps - was just too difficult and cancelled out any benefit I may have been getting from the appointment in the first place. I've learned that there are somethings I thought I couldn't do that I actually can - hello, idiot: If you have smaller containers of orange juice or soda, you can pour them for yourself, and not have to wait for somebody else to do it for you! - and somethings that I need help with that I just am too embarrassed to have anyone but Mum do (and that I totally need to get over that).

I'm pretty sure I need to find another PCA, too: to handle all these little things I need help with when Mum is too busy to do them. Of course, this is, in effect, demoting my mother, and I haven't quite figured out how I'm going to do that yet, so that's obviously easier said than done. But there are a lot of things that are falling through the cracks because she's busy with the remodeling, and they are things that would make it easier for me to function, so I should be at least attempting to find somebody to cover for her. Instead, I'm trying to struggle through on my own, and I'm not sure how much longer I can do that.

But, that is where I have been - struggling to get through the everyday a little bit more, which means that my google reader has read "1000+ new posts" everyday since I've been here, that my gmail has gone unanswered, and my blog has been neglected. I do think I'm doing better at hiding less, not trying so hard to make it seem like I can do things that I really don't have the energy to do (Basically because I hit a wall, which is not unusual for me - push too hard, hit an impenetrable wall of fatigue and pain. Repeat as necessary until you get it through your thick skull that you JUST CAN'T DO EVERYTHING YOU WANT TO BE ABLE TO DO, you dope. Oh, and also? You have no immune system, so stop pretending that you haven't caught that sinus infection - you have. It's living in your face. Call the doctor and get a Zpack already. KThnxBye!) This should translate into a schedule closer to what I'm used to - which means more puter time, because I don't have any energy to do anything else.

Although I'm not passing up on the hour long talks with Grandmother & UJ - one of my favorite low/no energy activities, and one which I'm happy to be able to indulge in to my heart's content right now.

I know, I know: Where have I been? Long, much delayed explanatory post to follow ASAP, but in the meantime, Here: have a video. Click the link. Let's get this thing passed.

Fin

Ok, so I've finally made it through every.single.BADD.post - or at least all the ones that have been posted as of May 6th, and I have to say: Wow.

As always, there was soo much wonderful writing, so many excellent perspectives. And, I think, this year, so many more participants - or at least more participants from a wider range of the blogosphere. I was so excited to see the Fishy's logo up on some of my favorite feminist or personal blogs, and glad to be introduced to so many new-to-me blogs as well. The word is definitely spreading.

There were only a few blogs I didn't/couldn't comment on, but the majority of posts were exceptional, and - if my brain was cooperating at the right moment - I tried to let them all know. Here are the final bits and pieces that I want to make note of (I often look back at my round up post when I'm trying to think what I should discuss in my next BADD post.) So here are things that are definitely worth remembering/spending more time thinking about:

This is the disablism specific to invisible disability: you could do it if you really tried. Because there is not a wheelchair, or a cane, or some other visible indication of my disabilities, people assume I am exaggerating or making them up out of whole cloth. You could do it if you really tried, and because I am looking at you and not seeing the trying, you must not be trying at all.My disabilities are invisible, like the wind. Like the wind, they are real; like the wind, they can make it really fucking hard to move forward, they can knock over everything I've built.

If I come to you and say, the wind blew my house down, you don't say, I didn't see it happen, you must not have built your house strong enough.

If I come to you and say, my disability made it so hard as to be impossible for me to do this thing, don't say, I didn't see it happen, you must not have really tried.

Mine are invisible. That doesn't mean they aren't there.

The GOddamn Wolf Woman hits a hole in one with her wind analogyfor invisible disabilities.

His life is a series of missed moments...
I think he believes sometimes that I find him a burden.

I don't. His disability is a burden; he isn't.

Taste is Sweet stated very simply, and brought me to tears.

"Equality" in relationship terminology, and this is really a basic feminist premise, can mean you expect your partner to do as much in the relationship as you. 50/50. But when your partner has a disability, 50/50 on the household chores or whatever isn't going to work, and if you start resenting that, guess what? You're being an enormous ableist jerk.

Bitch Queen Emily, PhD talks about how relationships with disabled partners get out of balance so easily (and I really feel that applies in all relationships, not just marriages, because I feel it so keenly in the relationships with my friends and family, how I often I am just not capable of putting in the required 50% and how they react to that.

And her partner tackles the truth of it with her postButterfly Cauldron: The sharks are here every day

They can't see the thwarted ambition. They can't see the life plan thrown irrevocably off track. ...
I'm always struggling, in some way, with reconciling the image I have/had of myself and the reality of my situation. I fight the urge to blame myself, to give in to the delusion that I'm just imaging things, that they're not as bad as they seem, that I don't really hurt this much, it's all in my mind.

I am not your Sunday afternoon special. I am not your magical rejuvenating golden girl. I am not a reflection of your idealist worldview.

I am a person. I am a person with a disability, but I am still a person. How I own my experience is up to me, not to you or your preconceived notions of magical disabled persons.

Not a stereotype is right.

The fact that I feel I have to defend my actions, justify the logic of my self-care, is fucked up. I am an adult, and my health is my concern. And I am in the best position to make those kinds of decisions. But I feel like I am accountable to everyone who knows that I have depression - like it's only acceptable for me to show it if I can prove that I am trying really hard to get better.

Kirsten's discussion about advice and having to justify her behavior and actions really makes me think about all the times I have to 'prove' I am following doctor's orders, and how difficult it is to disobey them (even if you know you will benefit from it) because other people will not understand.

and lastly -

Needing help isn't a weakness, it's a way of overcoming one.

from the Multiple Sclerosis Foundation blog

As always, thanks to the Goldfish for all of her hard work in putting this together, and if you haven't gotten a chance, head on over there to check out some of the fabulous posts.

Part dos

of my BADD wanderings, with some more seriously excellent highlights of seriously excellent posts:

This is my usual problem. The standards and expectations I have for myself are huge and unattainable compared to the expectation I have of other people. Everyone else gets compassion and respect from me, but I haven’t figured out how to turn that on myself yet.

gets a big ditto from me, Morphine Breath

Being fat in and of itself does not impede my functionality, but it does more or less eliminate me from many people’s Good, Attractive, and Capable Person Lists. People thinking you can’t do stuff, and thus not getting the chance, often winds up materially identical to not actually being physically able to do it. Looking “healthy” is much more important in this world than actually being “healthy.”

by Meowser

i don’t mind hard work, but i hate that everyone thinks i have it easy when i’m putting every waking breath into either doing the work, or charging up to do the work.

jo/e @shivering naked

Where do I even start? Obviously she wasn't trying to diminish what I've been through, but she did. Her words took power out of my struggle by making it seem less. It isn't less, not by a long shot, but anyone hearing those words might possibly think I was whining or overstating my case. I'm not.

From Not just an annoyance

However, if the person arguing, or demanding that his civil rights be respected, or especially losing his temper, happens to have a mental health diagnosis and the other person happens to be a staff member, it is all too easy to dehumanize the mentally disabled person’s behavior and assume the “acting out” to be due to his illness. Well, maybe not so: people with psychiatric or developmental disabilities are disabled, yes, and that disability is an essential part of their being, but that doesn’t mean that they’ve lost their humanness and will take things that the healthy wouldn’t take.

Astrid makes me aware of yet another example of how those with mental illness are dehumanized. To not even have the right to your own feelings is a grave injustice.

But the thing to remember, and it's hard to remember when we're in the umpteenth "should women shave their legs?" or "it's not okay to use 'gay' as an insult" discussion, is that isms haven't just become mild annoyances to gab about on blogs. Sometimes big things happen... like not getting health insurance.

Trinity reminds us that ableism isn't just what we're talking about, but what we're living.

How to get over that sense of ‘otherness’? That feeling that certain types of people are fundamentally different? It requires some growing up. A realization that those “other” people are just ordinary people. Not a case of ‘that could be me’ but a case of ‘we are in the same boat’. Nothing special at all above and beyond the ordinary specialness of being human. And nothing less, either, than the extraordinary specialness of being human.

From the brilliantly titled Us Vs Us

I've still got plenty to get through, so there may be still another post in the making, we'll see. The # of participants certainly seems to have grown this year, and the quality of the posts is, as always, spectacular!

Results of my BADD wanderings

part 1. It usually takes me a few days to get all the way through these posts. And it has been a truly horrid week, so I'm slow going anyways. But they're so awesome, and I could really use the distraction, so you never know: I might finish them all right now.


Here are a few highlights so far -

...the experiences of the privileged are considered the norm everyone should be expected to live up to. Just as women are expected to simply adapt to institutions and social structures that evolved out of male privilege, those with ADHD are expected to be able to succeed in education and careers designed by and for people with "normal" abilities and ways of thinking. Those who don't are called lazy and irresponsible, or are blamed for not pulling their weight at work.

from The Acrimonious One

Many will argue that if they do not know about the issues, they can’t be guilty of being ‘disablist’. But that misses the point of a truly inclusive society - one which not only breaks down barriers, but doesn’t even create them in the first place. A perfect scenario would be where it is harder to exclude than to include. Perhaps this is an unrealistic hope, but it is nevertheless a noble aim and should be the target of our efforts.

from A Pretty Simple Blog

o those who are too ill to work outside the home for a paycheck are unproductive by definition, regardless of how much they get done. Furthermore, the self-care that is so essential to managing chronic conditions is valued even less than the ongoing care of others*. Our most vital work is society's least esteemed.

by SKM over at Shakesville

Pain, as I explain to people, is not a feeling. It is where I live, and while I can't make out my neighbours through the fog, I know I don't live here alone.

A beautiful, heartbreakingly true line from Whirlwitch (Although, LJ users: how about having a visible e-mail address or enabling those anonymous comments - even if just for days when you're getting linked to from something like BADD? I don't much like having to delete anonymous comments either, but I hate not being able to tell someone I've loved what they've written.)


and lastly (for now),Rachelcreative's line

I don’t expect you to be a mind reader but when I tell you I have a problem with something you have to trust me that I know what I’m talking about.

really hit home with me as well. (SisterCh, even though you don't read this: I am talking to you.)

BADD Girl

For my BADD post, I'm updating/editing a previous post about chronic illness and friendship, just in case you're a regular reader and this sounds kind of familiar. Happy Blogging Against Disabilism Day, everybody. Please head over to the Fishy's place, and read the awesome entries.

I spend way too much time thinking about the past. I remember the me that used to be, the me that told people everything, that had a wide circle of friends I could call, in tears, whenever I needed to, and I wonder when I closed myself off, I wonder if this is just part of growing up, growing old, or if there’s really something wrong with me now and I wonder what I’d have to do to let other people in again.

From Princess Nebraska

One of the greatest challenges of living with a chronic illness is the sense of isolation it can bring. It can be devastating to suddenly (or not so suddenly, depending on the situation)find yourself in a place where nobody else seems to understand, where you have nothing in common with those around you, where you are left facing an illness - and all of its many challenges - on your own. I was 15 when my illness changed my life forever, and almost immediately, I began to feel disconnected from my friends and peers - but by experience rather than time or distance.

In high school I was different because I didn't date or go to parties. I never drank or smoked pot (the norm at my high school, anyways), I couldn't drive, & I didn't skip classes to get pizza because I knew I'd need the sick days for actual sickness. I missed the prime gossip hours - lunch, study hall, walking home from school - because I only showed up to go to classes, and then went home and crashed, or I was homeschooled (when things were really bad). I had to stop dancing, and those 'friends' disappeared from my life immediately - I can remember showing up to the next year's recital - the recitals I had previously felt like I owned, the recital where I was supposed to finally have earned the right to a solo - and feeling like an intruder, feeling worthless & forgotten. I had no enemies, and managed to maintain one or two close friends, but we still had spaces between us - inside jokes I didn't understand anymore, trips I couldn't take, heartbreaks I couldn't nurse them through with cookie dough and sleepovers.

During college, things were much better - living on campus brought me independence, brought me a community of girls who bonded with me over papers and boredom, the frenzy of finals and the loathing of lesson plans. I loved them, and they loved me, and they somehow - amazingly, to me, it seemed - managed to understand who I was and that I wasn't just this weird combination of illnesses.

But there were still things that branded me as an outsider - I went home on the weekends because the sensory overload in the dorms was too much for me. I didn't have boyfriends who broke my heart or hangovers that lasted two days. My wheelchair accessible dorm was fine, but the student center, the theater where the plays were held, the alumni center were committees were formed, the neighborhood restaurants were all off limits to me. When my friends would plan their birthday parties, they'd always include a stop by my room: we'd take pictures, I'd give them my gift, they'd preen, I'd send them off for a night on the town. These pictures are bittersweet to me now - having friends who cared enough to come by at all is sometimes overshadowed by the fact that they were on their way to a night full of fun and I was on my way to bed. (4 years of college and maybe 17 pictures, all following the same pattern - the group of us sitting on my bed in my dorm room, them dressed to the nines and me in my pajamas.)

After we graduated, the gap began to widen again: my friends started getting married almost immediately, a few of them had kids right away, and they all had jobs. They all got careers and husbands, eventually homes and kids. I wound up with doctor's appointments, random rare diseases, a datebook filled with medical tests; fabulous kids that I play auntie to, but who go home at the end of the day, and the same twin bed I've had since I was 16.

(I know that there's more to my life than that last sentence, I'm just trying to make a point about the gap I've been feeling lately.)

"What are you doing now?"
"Where do you work?"
"Are you seeing anyone?"
These are all routine questions, to which I have very un-routine answers (at least for my age group). Most almost 30 year-olds work. Most almost 30 year-olds date or are in serious relationships. A lot of them have kids, mortgages, cars to buy, bills to pay.

I do have a lot: this isn't about that. I know I have a lot to be grateful for, a lot of happiness inducing, valuable people in my life, a lot of interesting & intriguing ways I spend my time... this post isn't about me feeling sorry for myself (or, at least it's not meant to be), it's about how hard it is to be connected, to stay connected to people you care about when you have so little in common.

It's about how strange it feels to have no 'real' answer to everyday questions - when you're friended on Facebook by an old acquaintance who asks how you are and what you're doing now.... why it's so difficult not to just skirt the truth, to not want to just make up some better, more acceptable answer. It may be by necessity that I'm not working, it may even be a blessing that I am able to devote so much of my life to being with the people I love, but that doesn't make it easier to say that I don't have a job because I'm too ill to work right now.

It's about how left behind you begin to feel when all of your friends are doing adult things - hell, when your little sisters are doing adult things - and you still feel like you're living the same life you were living 12 years ago. I did go to college - it was an unbelievably intense challenge that I am so proud of myself for conquering - but I got so sick afterwards that I couldn't put it to use, and now, 8 years later, I'm still here, still stuck.

So it's hard to be the one to pick up the phone and call one of the girls from college and say "Hey, come and visit me: let me just let my parents know first."

The Internet - particularly the blogosphere - has been really helpful for me with all of this, helping me to find new peers, to connect with other people like me. Peer groups need not be just by age, after all - having friends of all ages who can understand your experiences can be vital too: I've bonded with readers, with photographers, with aunties, with other young adults with chronic illness. Having people who have faced some of the same challenges in connecting with the 'real' world, who feel the same sort of disconnect has been really important for me and has, at times, kept me from becoming completely isolated from non-family people. It's one of the things I like best about the blogosphere - there seems to be no end of blogs written by outsiders, by the non-cool kids, by the uncliqued masses (Sure, there's some clique-y-ness every now and then, but by and large.) I have made real, true friends online, and I never expected the blessing of that.

It's just that lately, I've been feeling this disconnect between me and my IRL friends pretty keenly: there's been a rash of pregnancies - and second pregnancies when I've never met the first baby in person; my oldest friend (I'm talking 2nd grade here people) is getting married in October and I've yet to meet her fiance, even though they've been dating for 3 years; I'm finding out secondhand & after the fact that there are parties, shindigs,& get togethers that I would usually be invited to (and have to decline) that I never knew about (and I honestly don't know which is worse: the having to decline or the not getting the opportunity to)... It just feels like I haven't put enough effort into these relationships, and they are crumbling around me.

Think about your own life - think about the best friend you lost touch with after high school ended, the acquaintance you used to send a Christmas card to until you just forgot one year, the woman from your kid's little league games that you talked to 3 days a week for 3 summers in a row and now never see - and about how easy it is to lose those ties. Now think about how much easier it would be to lose the connection if one of your friends hardly ever left her house - how quickly you might get sick of inviting her places if she always says no, how awkward you might start to feel about letting her know the good things that were going on in your life if you think she's got very few positive things in hers, how rapidly life runs away with you so that you never have a moment to sit down and put the fact that you're thinking about her into action.

I've been really good at keeping up virtually - I always send birthday cards (almost always on time); I comment on their kids' pictures & send presents signed 'honorary auntie NTE'; I pledge money when they run marathons and donate to the 'in lieu of flower' organization of their family's choice if someone they love passes away. But I can count on one hand the number of times I've actually been in the same room with most of them (excepting Best Friend/College Roommate) in the past 8 years.

So I've been thinking about how to do better at this, and I think the key is not to wait. Not to wait until I feel 'better' enough, not to wait until I feel like I've got more interesting things going on. I'm so horrible at this (we've talked about how I hate the phone. And how I am actually shy in real life and get embarrassed really easily and on and on and on) but I'm going to try not to let myself make excuses. I'm going to write an e-mail this week to at least one friend and see if she can't carve out some time for me. And then I'll carve out some time for her.

Because I do need those people in my life that I can call when I'm sad and need cheering up, that I would answer the phone for even in the middle of an un-Tivoed, brand new episode of The Office, that I get to see the engagement rings of and rub the pregnant bellies of. Because I think I am a good friend, and that's not something I'm willing to put on hold any longer.

Hey there, all!

Connections
Originally uploaded by bbackprple

Peeking out from my blogging break to post this photo for the I Heart Faces theme of Reflections. (It's so great that they have the themes posted ahead of time). I knew exactly which picture I should use for this.

Things here are crazy. Tonight's my last night in the house, and I'm all over the place, emotionally & physically. Happy, sad, confused, excited; sick, exhausted, & sore. (Mostly exhausted and sore.) I'll be staying at my grandmother's for the foreseeable future, while all the repair & painting type work gets done at the new house, so posting will continue to be catch as catch can for a while now.

In the meantime, enjoy this picture of Lil Girl reflected in her dad's picture: it's certainly captured the whole "looking forward, looking backward" vibe I've got going in my life right now.

Hope you all are well, and, if you get a chance, head on over to check out the rest of the I heart Faces pictures!

Because I need some smiles

and, although I missed Monday, these are My Best Shots: Lil Girl looking all grown up. (Which she needs to stop, immediately.) iThe first one, in my mind, lacks only a big banana clip, and then she'll be a totally awesome 80s girl.

And this one shows her feistiness in all it's glory. She's a handful, but it's a fun, wonderful handful, that's for sure. :D


Hope you all are having a great week!

Everybody says

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

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

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

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

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

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

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

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

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

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

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

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

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

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

:sigh:

According to Netflix

... because I am interested in Gene Kelly: Anatomy of a Dancer I might also be interested in Being Ron Jeremy.

... because I like musicals, I would probably love High School Musical 3.

... because I enjoyed Schoolhouse Rock I would also enjoy SNL: The Best of Gilda Radnor.




Netflix: You do not know me nearly as well as you think you do.

FAIL.

In case you missed it...

There's a big kerfuffle over Amazon and its deranking of certain "adult" books. The kerfuffle being that the only books being deemed "adult" are those that contain GLBT themes and characters, and some erotica. What follows is the (3rd) draft of the e-mail I'll be sending them tomorrow... Any ideas for improvement?

Recently, I have come across numerous blog postings regarding new Amazon policies that either remove certain books from the front page searches or remove the sales rankings from certain books. According to these posts, the sole justification for the changes is the content of these books - specifically that they contain erotica; or are published by a mainly erotica publishing line; or that they contain characters who are homosexual, bisexual, or transsexual. Now, I will not pretend that I understand ranking and what it means to the sale of books, or even exactly how important it is for a book to be reachable from a front page search - I'm not in the publishing industry at all. I am, however, an avid reader, and I know that I often use your front page searches for books I am looking for, and if I don't find them there, I quickly move on to a different book. So I can see that the practice of removing certain books, imprints, and publishing lines from these searches would be detrimental to their sales.

Supposedly, these books are being adjusted based on their inclusion of "adult" material, and - while I do not condone that sort of practice at all - if that is your policy, I expect that it will be a blanket policy and apply equally to ALL books that are posted in your system. Unfortunately I'm seeing case after case where this is not what's occurring. If you were, in fact, to apply this policy to all of your books, then your search feature would become obsolete, your rankings meaningless.

Sure, lots of erotica contains "adult" material: so do lots of OTHER books: Fiction is full of "adult" material - will Lolita be losing it's rank? How about Shakespeare? What about regular romance novels that are published by mainstream publishers, rather than just those that are published under other imprints: I hardly ever notice who's published the book I am reading, but just glancing at my shelves, I know that there's more than one mainstream - bestselling - author whose work contains "adult" material: will their rankings be adjusted as well?

I'm quoting now from a blogger who's listing the books who's standings have been changed, and he writes "the only "sex scene" in The Well of Loneliness consists in its entirety of the words "And that night they were not divided."" The Well of Loneliness had it's sales rank removed, and yet I can think of more explicit sex scenes in almost everyone of my beloved Nora Roberts novels, and after checking three of her books, I see they are all still ranked. As is Playboy Nudes, Spring 2007.

And it's not just fiction - apparently, The Ultimate Guide to Pregnancy for Lesbians: How to Stay Sane and Care for Yourself from Pre-conception through Birth, 2nd Edition has lost it's ranking: I fully expect, then, that What to expect when you're expecting will be unranked from now on as well? And that to search for it, you'd have to search from Books rather than All Amazon? And what could possibly be the justification behind labeling Young Adult books as "adult" material and giving them this treatment - unless you're also going to be de-ranking books I loved in my young adulthood, too? Will Are You There God, It's Me Margaret be no longer available from the front page search?

I am shocked and saddened to learn that it is your corporate policy to discriminate. Perhaps this is, as has been suggested in the blogosphere, an extreme programming error on your company's part - a glitch where books are being removed/de-ranked based on arbitrary keyword searches. Even so, the fact that those programs would be searching for terms that include words like 'gay', 'lesbian', 'bisexual', 'transexual', or 'erotica' to the exclusion of words like 'nude' or 'graphic sex' is incredibly discriminatory, and it's not something I can support.

Personally, I don't think you should be excluding any books from the searches, as it is obvious that you can not create a filter that will give the proper "consideration to your customer base." And I think it is very shortsighted that you would even try to - I am your customer base - I'm a reader, a book reviewer, and a friend to untold authors - I was certainly not "considered" when this decision was made. As a customer, I think it's more important for me to know that I will get accurate results from my search, rather than censored results. If I type in the name of a book, and the book doesn't come up until page 5, what's the point of searching? (As an extreme example - what good would it be to me if I searched for Hamlet, and instead got Green Eggs and Ham as the first result? Hamlet, after all contains violence & paranormal elements - perhaps they would be the next keywords to be excluded?) You do a disservice to all of your customers when you pick and choose what to include in the search results.

Judging by the responses I have seen online so far, your policy is going to start costing your company a lot of money, very soon. For my part, unless I see that your policy has been quickly changed, and an apology has been issued, I am one avid reader who will begin searching for my books somewhere else. I will also no longer link to books on amazon.com through my blog, and will be removing my wish list widget from my sidebar: I cannot knowingly contribute to a site where such policies are considered as sound corporate practice, and I am not alone - I think that you will find that if you'd like to earn the title of "earth's most customer-centric company" you have quite a ways to go

Looking for the next imaginary place

as we start the last final few weeks here.

We're amping up the packing, finding all sorts of memories hidden unexpectedly in corners, in trash bags shoved in the back-beyond of closets, in endless foot high stacks of papers. Every breeze that blows in the window carries a reminder of some long ago day when we chased each other around the tiny tree or sat on the back porch listening to the rain. Every curve in the wall is a place long forgotten - the third step down that was our favorite place for telling secrets (apparently, acoustics was not our best subject at age 8), the hole in the floor between the parlor and sun parlor that we used to think hid a secret room. Random sounds combine into the first songs she taught me to play on the piano, the dripping of the pipes overhead as I played with my dollhouse in our dank dark cellar, the off tempo clock that only half ticked as I spent another lazy afternoon visiting the Green Gables. Even ordinary smells seem to hold extraordinary pockets of memories these days - the brand new tube of Crest toothpaste in the bathroom reveals the Easter eve night we had a sleepover upstairs, and in that moment, I could almost still swear that I'd truly seen the Easter Bunny that night.

Everywhere I look there's another story I'm afraid I'll forget again, another little piece of who we were, here. Then. I tenderly pick up each one, put it in my pocket, my dented and patched up boxes, my recycled Rubbermaid containers, and I wrap them in bubble wrap, cushion them in cotton, do anything I can to make sure that they'll survive the trip.

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

Andrew Largeman: You know that point in your life when you realize that the house that you grew up in isn't really your home anymore? All of the sudden even though you have some place where you can put your stuff that idea of home is gone.

Sam: I still feel at home in my house.

Andrew Largeman: You'll see when you move out it just sort of happens one day ...one day and it's just gone. And you can never get it back. It's like you get homesick for a place that doesn't exist. I mean it's like this rite of passage, you know. You won't have this feeling again until you create a new idea of home for yourself, you know, for you, kids, for the family you start, it's like a cycle or something. I miss the idea of it. Maybe that's all family really is. A group of people who miss the same imaginary place.
From the movie Garden State

My quote this week

"It's a strange thing, but when you are dreading something, and would give anything to slow down time, it has a disobliging habit of speeding up."

Harry Potter and the Goblet of Fire, J.K. Rowling

Time is going both too fast and too slow just now. The closer we get to our move out date of April 30th, the more I want time to just pause - not slow down or go faster, but to just wait a minute for me to catch my breath. Just wait a minute for me to make tough decisions, for me to know which is the right way to go, what is the right thing to do.


As time shows no signs of actually complying with this request, I figure I better just pick something, or else.

And I'm not really up for any 'or else's right now, thank you.

Hope your Friday is going ok, and wishing you all a nice, restful weekend.

I've been writing a post for more than hour

that's supposed to be about how ... well, I guess if I could narrow it down to one thing, then it'd be a lot further along than it is right now.

Mostly, though, it's about how I am pissed off at feeling so bad, about having no answers, about having to find the energy to keep looking for solutions. I'm pissed off at having to explain myself to people who don't even care enough to really listen. I'm pissed off about where I am in my life, and the options I've got, and the not knowing what comes next.

I'm just pissed off.

A lot.

So there: 75 minutes of writing, and what it comes down to is I'm pissed off.


Only the other post had more cursing.


I really need to find a way to finish it, because I so rarely feel like cursing that I don't want it to go to waste.

If you're having a hard time

trying to decide between laughing and crying, I'm going to add to your problems and link you to some "Science."

I hope to god that's a joke... because if that's how people are learning their 'science', I'm surprised we as a species, still exist.

A new ballet

Amazing. Ballet is so beautiful to me, and I love it when there is something new to see.

Sorry, no MBSM

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

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

Right?

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

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

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

The Creepy and The Cool

when it comes to what's new for kids:
First the creepy: a "peekaru" carrier -



(Very Alien ish, if you ask me.

Then the cool: Shoes that grow with your kid's feet -



If they actually work, how awesome would those be?

Both images via The Shopping Blog

New meds this weekend... so far, besides making me a little itchy, no help, no hindrance.

We shall see.

Hope your Saturday night is more exciting - and less itchy - than mine.

Friday Quotables

"You don't think she lived happily ever after?" Lord Richard asked softly, his fingers brushing past Amy's as she traced the contours of a small bird.

"That's an ending for books, not for people."

"What are books about, if not people?"


- p289, The Secret History of the Pink Carnation, Lauren Willig.

I'm having much better luck with books this week than I am with people, so this quote seemed like something I should try to remember. If you're interested in seeing more quotes, or in participating, click on over to Bookish Ruth for today's other Quotables.

Off to cry

while watching the ER series finale. I'm sure I will, so I've penciled it into my day.

Other than that, I'm going to be pissed a phone call was promised but never came and an audio book that wouldn't play. But those are minor annoyances, and we took Lil Girl to the library today where she was excellent, so all in all, a very good day.

I hope yours was too.

Speaking of fools...

**** Hey Sister of Mine - This is probably not a post you want to read, unless you feel like crying or being pumped full of rage. It's about the PUS. Feel free to skip. (This goes for anybody, of course, but my sister especially). I'd rather not write it, to be honest, but it's probably a wiser option than waiting till one of them comes by and kicking them in the face. Which is what I feel like doing. So; writing it is. ****


The PUS are just about all moved out now, with just their part of the cellar and what the realtor calls 'a few odds and ends' left upstairs to take with them. I can not fully explain how amazing it feels to be in this house and not be afraid of having to leave because of something they've done that will make me more ill. Or how it brings me peace to be able to take Lil Girl outside to draw with sidewalk chalk and not have to worry about someone pulling into the driveway and shooting us dirty looks, or worse, attempting to talk to me. It is bittersweet, to the extreme, to have this house be almost the way it always should have been - ours.


Only Nana is missing.

And she has been on heavy on my mind lately as we move into this final month of our residence here, how could she not be?

Her best friend came over to visit us yesterday. Because she's afraid that we'll move too far for her to come again, the visit was full of unnecessary goodbyes, (as we aren't moving anymore than 30 minutes away no matter what) but she also spent a good deal of time rehashing old hurts: cursing the PUS for all they did to Nana, cursing Nana for putting up with it, wishing she'd been able to convince her to do something about it. It was like listening to my own soul talking, especially when she said

"If we could've found a way, she'd probably still be alive today."

To outsiders, this statement makes no sense, I'm sure. An overreaction, perhaps, or wishful thinking to the extreme. But to me, it is a mere fact --> my grandmother, no spring chicken when she died at 84, would most likely have had a longer (and most definitely a happier) life if she hadn't had to battle everyday for just the air she breathed.

Stress, we all know, is aging. It's detrimental to your body on a cellular level. It hurts physically and emotionally. And my Nana lived in a soul crushingly stressful environment. It wasn't even just stress, it wasn't ordinary familial tension - she lived in a place where she was abused, everyday.

It takes a lot for me to write that. To know that it is true and to know that there were choices we all made - choices that I made - that enabled that abuse to continue.


I hope that in all my life, I will never do anything that I could regret more than not doing what I know was right. I hope that I would be strong enough, now, to know that having her mad at me for calling the cops - over and over again, if necessary - would be preferable to not having her at all.

"She wasn't beaten to death," you might say, "She died of cancer." And you would be right. She did. She did die of cancer, but she also died because her environment was toxic; because her son and his 'family' poisoned her everyday.

By ignoring her. By making her feel worthless and stupid and vile. By treating her as if she were little more than a bank - a bank where loans never had to be repaid and interest was never charged and you could insult the clerks at will. By hurting her heart and allowing their children to say that she wasn't their grandmother, or that they'd never really loved her. By screaming at her and calling her hideous names. By not caring for her when she was so obviously sick, and not caring enough to let anyone else have the chance to care for her either. By bullying her into believing all the wretched things they said about her (or us), and threatening her if she dared to stand up for herself (or us). By treating her as though she was invisible - by showing her that her opinion meant so little it didn't deserve to be heard, that her presence meant so little it wasn't even worth noting. By making it so that no one else could stand to come to her house, since it meant being in their presence, since it meant having to sit by seething while she was belittled or being belittled themselves.

(I would say here, in order to keep myself from becoming completely enraged, all over again, and because I am listening to the Harry Potter books on cassette tape, that she was Dobby, and they never gave her so much as a sock. If that makes sense to you, I think we should be friends:) )

They poisoned her, as sure as if they'd been feeding her arsenic, and 22 years worth is a lot of arsenic to swallow. It's a long time, and a lot of damage, and if every day you're living on a battlefield, using all your strength and energy to fight off poisons, you don't have any extra resources when you need them.

And that's really what happened to her - she just didn't have the resources she needed for that next battle, and it happened to be against a foe she couldn't best.

I'm not saying she wouldn't have had cancer. I'm not even saying she would have survived the cancer, really. I'm just saying that she would've had a better shot at doing so if she didn't have to also survive her 'son' and the rest of the PUS.

You may disagree, and I haven't written it before because, well... it sounds so stupid written down like that, even to me. But they wore her down, they wore down her spirit and her energy and her self, and when she got sick, she needed all those things and didn't have them. So yeah: I think that the damage they've done is immeasurable. And I am damn glad to see them go.

But today, alone in the house, as I heard the footsteps of Hippobeast PUS (the daughter - who's 22 now & who was one of Nana's frequent tormentors) thump on the back steps, I had a moment of "What's to stop me?"

My anger was so clear and sharp and focused that if I were capable of climbing the stairs, I thinkknow, in that moment, I absolutely would have. I wanted to yell at her. To tell her how evil I think she really is; to tell her the truth.

We haven't talked in over 12 years, and I assume that she thinks I am as horrific as I think she is, but in that moment I just wanted to be able to look her in the face and say: "Listen, you need to hear this from somebody, and it sure as shit ain't going to be your fucked up parents that tell you because they're even more delusional than you are. So hear this clearly, and know that it is true - YOU are wrong.

All those things you did, at first because your parents did them, and then later just because you could? The hateful things you said and the punishing ways you acted? Were wrong. Were evil and hurtful and poisonous and led directly to the dissolution of our 'family' and to Nana's death. And you can never make that better.

I can't go back and do the right thing - I can't go back and call the cops when I should've or actually send that letter to the lawyer the way I wanted to, and that will always haunt me. But you can't go back either, you can't undue the harm you did, the hurt you've caused, and I can't let you leave this house without letting you know that I hope it haunts you. Because it should."

It's probably good that I can't climb the stairs, because even as I was thinking about how great it would be to deliver this truth to her in person, I didn't, for a second, imagine that she would just sit there and let me say all of that to her. And that would've pissed me off even more, and things would most likely have escalated. (Although, seriously? Giving her the chance to punch me might have been worth any increase in pain because you know I would've called the cops then, friends.)

And by the time she plodded her way back down the stairs, I had calmed down enough to return to my Harry Potter and plot about how to 'accidentally' aim a Cruciatus Curse at them all instead, but the wanting is still there. Because I know that they still think they didn't do anything wrong.

That they will never think they did anything wrong - that they were the victims of a family that turned their backs on them, as opposed to the perpetrators that caused a family to be shattered.

And that's not okay with me. But I'm just going to have to let it go.

So, even though we still don't know where we'll be, I am definitely looking forward to thirty days from today, when I won't have to see them again. Or hear their false voices again, or suffer under their hands ever again.

And then? I shall have to settle for the Obliteration Charm instead, wiping them from my life once and for all.