Saturday, May 30, 2009

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.

Tuesday, May 26, 2009

"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.

Sunday, May 24, 2009

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.

Monday, May 18, 2009

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.

Sunday, May 17, 2009

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.

Saturday, May 16, 2009

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.

Wednesday, May 06, 2009


Ok, so I've finally made it through - 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!

Friday, May 01, 2009

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.)


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.