Monday, May 19, 2008

Over did it

Yes, I over did it. For that, I am paying the consequences. My legs, hips, and feet are swollen and aching. My ankles are considering never speaking to me again (go ahead, ankles. You never have anything nice to say anyway). My back is sore. My wrists feel twisted and my hands are prickly. My right shoulder is trying to make a break for it. Various nerves keep pinging to let me know of their deep and abiding unhappiness. I knew this would happen. That's why I kept putting it off. But I really needed to do it, and there is still a lot left to finish.

But at least I got half a box unpacked and put properly in the closet.

Saturday, May 17, 2008

Religion, hardship, and belief

In Screw Bronze!, Elizabeth eloquently discusses the way that her old church friends have deserted her, offering weak promises of prayer instead of comradery. In the comments, Gaina inquires how Elizabeth can remain "a christian after everything you're experiencing"?

As an atheist, I wish to respond to that: Why shouldn't she?

I was once a Christian, but am not any more. I didn't drop Christianity because bad things happened to me. Bad things happen. I think monotheism creates an unnecessary problem of evil, but that's an intellectual standpoint, not an emotive one. Of all the former Christians I know, and I know plenty, not one of them stopped being a Christian because of bad things happening to them.

People who remain religious either don't feel the same degree of intellectual dissonance with their religion or find enough comfort in its myths, rituals, and world view that their dissonance is minimal in comparison. And that's pretty much all there is to it. And if believers and nonbelievers alike are willing to look past the vocabulary differences they have and get right down to meaning, generally they find they have more in common then they have as differences.

Tuesday, May 13, 2008


I see where Amanda of Ballastexistenz has gotten silver ring splints. Good for her! I hope she enjoys them and doesn't lose them and break them, as is my forte. I do still have my thumb splints, held on by elastic because the bracelet bothers me.

My new equipment acquisition comes in the form of, yes, ugly shoes.

Oh, those aren't so ugly, you say. But you are wrong. Because these are what I will be wearing everyday no matter what else I am wearing.

They are very comfortable shoes, but having them is, for me, a concession that I had sworn to myself I would never make. Yet, here I am.

I went to the orthopedic shoe store with the best of intentions and highest hope. Maybe I'd find something that was a least all one color, even if it was a trainer. Maybe I'd even find something with some nice detail! The pedorthist brought 4 boxes of shoes. We started with Finn Comfort, an ugly but all black shoe that could pass as office casual. I walked from one end of the store to the other. He went to fetch an arch orthotic. I walked again. He retrieved a pair of MBTs, which worked great for my hip, but was nearly impossible to balance on with my left foot's severe pronation. We tried another shoe, but I was back to dragging my foot and near-collapsing every few steps. And so I knew what the final box would contain, and what I must buy.

New Balance.

Damn it.  

Thursday, May 08, 2008

a bit of whinging

Poopy poopy poop poop.

OK, first, I think I have tracked down my migraine-inducer to the latest GF flour I was using. Back to corn and buckwheat! But in the meantime, I have a mouthful of cold sores and the intestinal distress that lets me know that things don't look so great on the inside either. One week and running. So to speak. Maybe by the end of this week, it will finally all be out of my system. But I have a lot of this flour leftover. Any ideas on what to do with it?

Second, it's hell time at work, which means a lot more physical movement than my joints like. Everything hurts. Except for the things which are tingly with pinched nerves. Things like, oh, my hands.

Third, I'm not very happy with people purposely getting in the way of me doing things that make my work place more accessible or with them making comments about how I do things. I don't care if it isn't the way you do things. It's the way I do it.

But fourth is funny. My housemate just woke up screaming and prancing around from a giant cockroach having run into his pajamas. I only have pain. He has a cockroach in his drawers. I think I'm ahead.

Monday, May 05, 2008


I've been planning on writing on the topic of identity for some time now. With Elizabeth going through the repercussions of a serious seizure, I think maybe now would be a good time. So, Elizabeth, this is for you.

Back in the late 1980s, I could write up a storm. I could read a dense academic book, cover to cover, in one weekend, and push out 10 or more pages of coherent prose about it. I can't do that anymore. What happened? I had a major, protracted period of depression, and emerged from it different than I was. Different, but not worse. I now can't read dense prose without falling asleep, and have to reread pages, repeatedly, if I am sidetracked at all. I struggle to keep focus in writing, to have a consistent thesis or even theme. But like I said, I'm not worse for the changes. I also used to be dysthymic and anxious. Now, no, not really. I can't remember the last time I panicked or spent the day in tears. My brain has re-wired. There have been trade-offs, but I am not displeased with the new me. While it has taken me a while to accept myself as I am now, I do indeed accept me. And I never did before.

MD used to read 500 pages in a day. She was such a voracious reader that she reviewed books just to have them sent to her. She'd get a dozen a month, and still be borrowing books from everyone and every library. Then she went into what was essentially a year-long seizure. She also finds herself falling asleep while reading, which she never used to do before, so her reading speed has slowed down to maybe 300 pages a day, which is nearly half what it once was. But, she tells me, there has been a trade. She now vividly dreams what she has read, in such detail and color that she prefers her new ability to the old one.

We change all the time. The changes can be outward--stretch marks, loss of strength, loss of bits and pieces. They can be inward, with loss of mental agility or even new gifts to replace the lost old. We are shifting, never the same. The idea of self as static must give way to the idea of the fluid self, pouring over the terrain of life, adapting to whatever environment we find. Here we are fresh and clear and bubbling. Here we are constrained, dark, and deep. Here we flow underground, and there we re-emerge as a spring. The important thing is to keep flowing, and we each find our ways of doing so.

Thursday, May 01, 2008

Who are these freaks?

It's Blogging Against Disablism day, and I actually have a post up for it!

Elizabeth of Screw Bronze! got me thinking more about how I see myself. And how, from my perspective, I'm absolutely normal. It's everyone else who is weird. What do you mean, you don't pick things up with your toes? You have a hard time with clothes that have back zippers and you can't scratch your own back without a tool? When something is just a little too far away behind you, you actually move back toward it instead of subluxing your shoulder and just reaching further? How freakish! I don't know how you can live like that.

MD and I were talking about this earlier tonight. We both find that we are surprised to learn how much most other people are built differently than we are. Last week, I learned that one of my sisters can't pull the skin on her shin away from the bone. See, I thought everyone could, but apparently, no, I'm the odd one. MD noticed that her husband's hands and feet aren't nearly as creased as hers. Again, it turns out that he's what passes for average. So that's "normal"? Who knew? Not us.

I suppose that if I were to wake up tomorrow with a "normal" body, it would be nice to not hit the wall of pain that immobilizes me if I can't rest. But I think it would be hard to get used to my new limitations and I'd probably end up breaking something when my body didn't give the way I have come to expect.

We started talking, MD and me, about how our being different and our family members and friends being different than us, is no big deal. On our own, or with certain family members or friends, we aren't disabled. Everything we need to do, we can do. We have what we need to do what we need at the pace we need. It's only in going out into the world that we find ourselves disabled. I'll find myself having to carry too much weight or bend over too often, and parts of me will start going numb from pain or subluxation. There will be heavy doors I cannot open, steps and ramps I cannot climb. Though most people can't look at me and tell that I am disabled, that door, that incline, disables me. MD is tall and robust looking. She also has a large side helping of autonomic dysautonomia to go along with her serving of EDS. So, yes, she does need to sit down. Right now. In fact, she's going to lie down for a moment. Offer her a seat, and she'll take it. Refuse a place for her, she's still going down.

To us, it all so unnecessary, these doors, those stairs, that lack of seating. We go to our respective homes, and the disability falls away. We are our own normal again. And we wonder, who are these freaks who design a world that disables people?