yet another never updated blog

Is this thing actually working?

2012-01-28T19:32:00.002-06:00

Maybe I will reactivate it just to share this hilarious email from Livejournal:

Dear yanub.blogspot.com!

LiveJournal is planning to start deleting inactive empty accounts. Pursuant to our housekeeping policy, your LiveJournal account yanub.blogspot.com is scheduled to be deleted in 15 days.

If you wish to reactivate your account to avoid deleting, please visit http://www.livejournal.com and log in within 15 days of this notification.
If you do not remember the password for your account, you can reset it following instructions over here.

So, does Google known the LJ is now in charge of blogspot?

Farewell, blogger

2010-09-07T17:16:00.002-05:00

I have migrated the contents of this blog to a new one hosted by WordPress. I am tired of being constantly locked out of Blogger at home, unable to either comment on friends' blogs or post to my own. Please visit me at iformaybe and reset your links, if by some chance you actually link to me.

Me v. Plants

2010-08-10T10:14:00.003-05:00

Plants win.

This past summer, I moved back into Austin to be near work. I was just so tired of losing two hours a day to driving and of all the associated expense.

I have lately been reminded, quite harshly, of why I was willing to commute an hour into and out of town for work rather than live near work. Austin is a sink for pollution and pollen. I have severe allergies. We are not a good combination.

At any rate, this past summer has been mild and moist, a perfect growing environment for nearly any plant. And what plant is most annoying come August? Ragweed. And it is everywhere, and worse than usual, and I feel hellish. I've been on steroids since Friday and can't say that I feel particularly better. I can't get the crap out of my lungs, and the medicines I'm on, while keeping me out of the hospital, add their own layer of lethargy, stupidity, and clumsiness to that so helpfully already provided by asthma. I do OK as long as I am semi-reclining in bed. But bills get paid by me getting out of bed and hauling my ass to work, so into work I must go even though I get exhausted just surfing the net.

And work? The air conditioner is broken. Lovely. Nothing to filter the air or remove a few ounces of water from it. Yesterday, I ended up begging to go home for a bit, just so I could rest enough to close up the office later. Since it was either that or me slowly crawling on hands and knees unable to summon the strength to get up, the boss agreed. Fact, people: Oxygen is vital to good health.

Enough whining. I have to get myself ready to go in again. Maybe the AC will be working.

Shougai Yakusha

2010-07-18T23:07:00.004-05:00

A while back, I was reading an English language blog on life in Japan. The post was about a government report that seven of ten Japanese people with disabilities have experienced discrimination. The first comment, from someone with disability: "And the other three were in a vegetative state and couldn't answer." All comments after that agreed that the first comment was correct, that discrimination is extremely wide-spread and the report was likely understating the problem.

So, it was with great interest that I read that Kotaro Yanagi, a member of the ikemen* acting troupe, D-BOYS, had published an autobiography of his life since sustaining a severe brain injury. Great interest, and despair, because my ability to read Japanese is pretty much limited to distinguishing the men's and women's toilets. But now one of his bilingual fans is taking it on herself to translate for all the people who have bought the book but can't read it. Seeing as I was hopelessly pondering how expensive it would be to find someone to do that very thing, I couldn't be more delighted.

She has just started and only has the prologue up, but if you are curious, you also might want to read Hicchan's Translations. And, like she says, buy Yanagi's book even if you can't read it.

At any rate, I am very eager to read how Kotaro has managed to continue as a performer. And also, I am delighted that he's still considered an ikemen actor. I wonder if the same thing would hold for a young American actor who faced similar difficulties.

*good-looking (only applied to men)

Ashley treatment, writ large

2010-07-04T16:47:00.004-05:00

I have been incredibly busy lately, and so quite late in checking blogs, email, festering sores that need attention.... OK, I did manage to work in the attention to festering sores. But I have had a deficit of web time. Yesterday, I was finally able to work through my RSS feed. Huzzah! And good thing I looked instead of just marking all as read, as I was tempted to do after three weeks of neglecting it. For there in Pharyngula, was a post about some perversely diabolical doctors essentially recommending taking poison to prevent the calamity of lesbian daughters. He is shocked and horrified, calling it "a convenient anti-uppitiness pill for women" and supplied a link to Alice Degner's criticism of the experiments at Bioethics Forum. A commenter also gives a link to Degner's commentary on the matter at Psychology Today.

While both of Degner's articles are worth reading in full, I call your attention to this sentence from her Psychology Today piece: A democratic medical establishment does not alter people's bodies to fit regressive social norms; it advocates for patients by demanding the social body get its act together.

This, this, this. This is why the attacks on people with severe disability, the failure to respect basic bodily integrity and human rights, are not an attack on just people with disabilities. It's convenient and self-assuring to assume that what happened to Ashley X, the maiming of her body for her parents' convenience, is something that only happens to a special class of people for whom it somehow a "good." But it shouldn't be so hard for people to understand that there are a whole lot of groups of people who aren't convenient. As David said "Ashley is me. I am Ashley. And you are Ashley, too." (Sorry, I lost the link to David's blog post and now only have this CNN article.) And now a medical "cure" to fix the main problem of being inconvenient!

This is much in keeping with the historic "destroy the Indian in order to save him" tactic of late nineteenth century US humanitarians (and, I understand, the practice of forced deculturization also has been done by Australians against native peoples there). "Of course," they say with a patronizing tone, "nobody actually hates the _________ (disabled, blacks, Indians, women, gays, etc.). This is for their own good. Because we care!" And, yes, I suppose it is a better approach than Phillip Sheridan's "nits make lice" genocidal one. But, my dears, it is the same damnable attitude. If the "other" is acceptable only when made convenient, the "other" isn't acceptable at all. And what of those who can not be made convenient under any circumstance? Then there is Sheridan's approach, which the patronizing will let happen while they wring their hands over how sad it all is.

Post deleted

2010-04-22T09:38:00.004-05:00

I just got tired of having to delete spammer comment requests.

Back soon with posts that will hopefully not become time-sinks from dealing with dingleberries trying to sell s e ks. (Weird spelling in the hopes of killing spambot interest.)

Look, Ma, an update!

2010-04-03T22:22:00.002-05:00

It was bound to happen. The past few weeks, I had been thinking how well I feel, how I was able to get all sorts of things accomplished and that my pain levels were completely manageable with hardly any narcotics at all. Oh, sure, there were other things. Asthma attack. Gluten contamination. Some minor narcolepsy-type events. But nothing all that serious. Thus, I planned a busy Easter weekend doing housework and getting paperwork taken care of.

Which means, of course, that first thing this morning, my right foot went out of place and all I can do is wait for it to reduce itself. As long as I stay completely off it, I'm fine. But as soon as I get up, I'm hurting. I can't do housework, can't cook, can't rummage through my files looking for the papers I need, because all that requires that I stand and walk and use my hands. And I can't stand and have free hands since I need them to hold onto the canes to keep the weight off my foot. Not even my fancy-schmancy shoes help.

Here's hoping tomorrow is better, because there is so much I need to do. I want to at least put my new plants in pots.

How dare they!

2010-03-13T00:37:00.004-06:00

My friend Frida was verbally abused by people paid out of tax money, in front of her children, because she uses a mobility device.

There are people who insist that "nobody hates the disabled." Those are generally the words that one hears prior to explaining how discrimination against people with disabilities isn't actually discrimination. Don't tell me this isn't hate. Don't tell me it isn't frightening and intimidating, that it isn't meant to be frightening and intimidating. Don't tell me they hadn't intended to degrade her. I am sick of excuses.

The end of the world is nigh

2010-02-23T22:07:00.003-06:00

Yes, boys and girls, the unthinkable has happened, and we had actual snow that caused the people in suits to send us home early from work. Just a smattering of snow, you say? Aha! Spoken like someone who lives where there are enough sand trucks to get to all the bridges before the carnage mounts.

Frankly, I would have preferred to have been told not to come in at all, since driving in a mix of hail, sleet, and snow is not my idea of a fun time for all.

Cause of death: Easily distracted by shiny objects

2010-02-13T14:55:00.003-06:00

OK, friends, I need a gadget. Surely there is something out there that will alert me that I have forgotten to turn off the burner on the stove. Something besides the smoke alarm that I can never reach and end up knocking to the ground where it lies dormant until I get someone else to put it back up. Something that will come on before the smoke alarm. That would be good. I've already managed to cook the spout right off one tea kettle. Stop me before I manage new feats of inadvertent stove-top metallurgy.

A friendly warning

2010-01-23T18:49:00.001-06:00

If you get cinnamon shower gel as a gift, do not use it on your face. Or more personal areas.

Good news in shoes?

2010-01-07T21:06:00.003-06:00

One of the last things I did in 2009 was go, yet again, on a quest for decent orthopedic shoes. This time, I even remembered to bring my prescription! Yay! When you know from the outset that your fugly shoes and insoles are going to cost you in the neighborhood of $200, it is nice to know at least they won't be taxed.

The ones I bought back in August were already breaking down from the stress of my gait and stance and being worn constantly everyday. And shoes that are breaking down don't do much to prevent pain or keep me from falling over. And if the shoes aren't preventing pain and keeping me upright, then tell me again why I am wearing orthopedic shoes with my dresses? Yes, time for new visually unappealing footwear.

I went to a different orthopedic shop this time, that carries slightly different stock in both shoes and in-soles. So, this time, I ended up with a pair of Drew Boas and a whole new in-sole build. The Boas are still not what one would call appropriate for dresses, but I actually like their look. They are black with silver highlights and glow-in-the-dark white piping. (Just like the one on this page about them.) And they don't have to be tied, which is an unexpected good feature. Instead, there's a knob on the back that twists to tighten the lacing. Since my fingers are on the wanky side, my laces were always coming undone and posing a tripping hazard. I still have to tighten these throughout the day, but the laces can only get a bit loose, not flop around. And I just have to tug on the knob to loosen the laces up enough to take the shoes off, so removing them isn't the chore it often is if I have ties that I've managed to somehow get to stay put.

OK, that's the shoe part. The really exciting part is the insole. They had me try Cluffy Wedges to prevent my big toes from hyperextending and help with the pronation. And they work! I was really hesitant to say anything to y'all at first for fear that the good effects were temporary and that my sloppy feet would just find a new way to fail. And maybe they still will. Who knows? My feet have mysterious Fail powers. But these past two weeks, it's been amazing. Dear hearts, I actually have been able to take the stairs because my knees and hips have fallen into alignment. I had--get this!--muscle pain in my thighs and back instead of joint pain from the waist down! To me, this is sort of the toe version of Silver Ring Splints. Yes, I still have to have significant arch support and a lift for my left leg, and I still have to wear orthopedic--er, "comfort"--shoes, but it is a big deal to be able to actually stand in the checkout line at the grocery store for as long as it takes instead of having to abandon the cart and try shopping again some other time.

And I'm also happy with Total Relief Footwear, for not only figuring out a good system for me but also being understanding in finding me something that I don't find depressing to wear. They were worth the extra driving distance.

In the Reception Room

2009-12-29T16:26:00.003-06:00

I went to the doctor's today, just to get a new prescription for orthopedic shoes. It was cold and rainy, and I was glad to find parking and get inside without falling down. I signed in and took a seat.

Across from me, a pleasant woman maybe a decade older than me spoke in soft Tejano accents with a man near my age. Their level of ease with each other indicated they were family. The man was called in for his visit and after he left, the woman looked at me and smiled like she had something she just had to say.

"Are you here to see the doctor?"

"Yes, just to get a prescription."

"You are so lovely. You look very good."

Well! Well! Now, that's a good start to anyone's day!

A bit embarrassed, I thanked her and asked how her Christmas had been. "Oh, very nice." She was visiting her niece, she told me. I asked where she had come in from. Laredo. I said I hoped she'd flown, because it is too long a drive.

"And how was your Christmas?" she asked, turning the subject back to me.

"Good. I spent it with my daughter and son-in-law."

A moment's pause.

"Are you a widow?"

I suppose I looked confused, so she repeated herself, and I realized I just hadn't accounted for her accent. A widow.

"No, just divorced for many years. Are you widowed, then?"

Yes, she told me, eight years now. Her eyes focused on an inner place of her heart.

"It was a freak accident, the day before Thanksgiving. My husband was diabetic."

"A car accident?" I was thinking of the diabetics I have known who have misjudged their sugar level and had serious, though fortunately, not fatal, accidents.

"No. We were at home. I was busy in another part of the house. He was painting the bathroom. Somehow, he fell. He must have hit his head, and he cut himself badly. By the time I came to check on him, he had bled to death."

She smiled. "I get through the days because I know he waits for me. I look forward to when we are together again."

Her family member came out and sat down, apparently needing to wait for his shot to take effect and preferring the drafty reception room and the company of his aunt to the sterility of the examination room.

"Until then, I must live everyday."

"Because that's what he would want for you, to live fully?"

"Yes." She looked at the man beside her, and smiled. I'd say she beamed with love, but that would give the impression that she wasn't beaming with love before. You could tell, from her despairing heart, she pours her love into those around her.

You know what? She was so lovely.

Xmas: survived!

2009-12-26T18:45:00.003-06:00

It isn't that I hate Xmas. I don't have any negative feelings about it. I just don't love it, not the way that the incessant carols and advertising and build-up since before Halloween insist that I should. I enjoy New Year's Day much more, with its simple meal and quiet contemplation. And the week preceding, when I put away all the claptrap of Xmas and try to get out of the way any business holding over from this current year so that I can start freshly on the 1st.

But I did have a lovely Xmas. I got an unanticipated phone call from my brother, who merely wanted to chat and ask when I would come to see him. And I spent the day with my daughter and son-in-law, in their underheated, drafty abode, warmed by the fire of my silly girl's love for Xmas. As much as I am indifferent to the day, she is downright bouncing off the wall with excitement for. But, then, she's like that with everything, and it is one of the many endearing traits she has. I came away with tons of gluten-free cookies, all home-baked, and what feels like a literal ton of Japanese language learning magazines. The cookies are becoming ever lighter, but the magazines are still in my car, awaiting the assistance of someone who can not only pick them up but do so without collapsing immediately. So, maybe tonight, then, if the son-in-law comes by.

To everyone, whether your Xmas was good, bad, or indifferent, may the last week of 2009 be the perfect preface for the new year to come.

Japan and disabilities--links

2009-12-22T21:48:00.005-06:00

So, to help me on my way, I am collecting informative links about disabilities and society in Japan. These will be news stories and the like. Feel free to send me a link if you find something. I will edit this post as I find new things.

A politician calls for eliminating the "weak". He also plays a ukulele while singing about people who oppose him. I suspect his song must go on quite a bit, because he must have a long line of people who dislike him.

A disabled man is killed by shiftless lowlifes who pocketed his disability income. There should be prize to the first country that figures out how to protect dependent citizens from such vultures.

There's a city that has made an effort to become an accessible tourist attraction. Interesting how that one politician sees people with disabilities as a burden, while a large number of pols in Takayama must see people with disabilities as an opportunity, instead.

A man who has practiced aikido and is biking around Guam. Was that common, 40 years ago, to expect babies with spina bifida to die early? That is surprising to me.

Thankful

2009-11-28T01:39:00.005-06:00

The past few weeks have been exhausting. Between a hellish pace at work and my joints, I have been beat. Too beat to even think about having something witty, useful, or at all worth reading to write. And not hardly the energy to read anyone else's blogs or answer emails.

For Thanksgiving, hoping to contain the general family mayhem, I had everyone over, knowing that the lack of TV reception would have them all eating and leaving in short order. Yes, I am devious that way. It was tiring getting up early when I so needed to sleep in, but rewarding to see my vegetables being eaten, eat my mom's turkey and ham, and celebrate a new step-nephew's inclusion into the family. And then, today I slept. And slept. And slept. I think the muscle pain may finally be wearing down.

I saw the ortho Tuesday, told him I wasn't going to do the PT or see the neurologist again because I think his diagnosis was wrong. And he agreed, encouraged me to essentially keep being bullheaded, and said we will just take things as they come. I'm thinking I may be past the defensive medicine stage with him, so that is good.

The wound on my back from the removal of the carcinoma seems to be healing OK. It has stopped oozing, and the skin around it, that had started to break out and blister from the bandages, has calmed down and is looking mostly normal. The scabs are sort of half on and half off, and still itchy, but at least I can lie down on my back now when I sleep. Another good thing.

Most importantly, I have the desire to research again. Finding the time to do it will be the trick, but my efforts at learning Japanese and my interests in pop-culture and disability issues are all sort of coming together at the moment. My money, time and employment issues are the same dragging forces as ever, but my interest is back. And maybe even some of you will want to know what I come up with, despite my lack of useful affiliation with any institution and absence of peer reviewed publication? Or maybe I'm just at a stage where I no longer care about those things, and will just do what I want.

New comment policy

2009-11-14T19:25:00.002-06:00

I'm sorry to do this, but the increased number of spambot comment submissions make it necessary. From now on, you will need to log in with your Blogger or Open ID account in order to leave a comment. Real comments from real humans who have something decent to say (as opposed to trolls and spammers) will continue to be accepted.

Derm test results

2009-11-07T21:04:00.003-06:00

The dermatologist's office called yesterday with the results, and, sure enough, I have a basal cell carcinoma. I'll get it removed Monday morning, then go to work. I hope there is something better to do that just put vaseline on the wound, because that is what he is having me do for the wound from the biopsy, and, man, I am getting sick of my shirt sticking to the oozy scab.

I'm not worried about the surgery itself. It should be fast and hopefully completely remove the offending skin. I've had a basal cell carcinoma in the same spot before, but it was treated with topical chemicals rather than just getting rid of the damned thing.

Dermatologist comes complete with clue!

2009-11-04T01:53:00.003-06:00

Wow!

I went this morning (well, now it's yesterday morning) to a dermatologist to have my back checked since Carapace had thought she spotted some problematic moles.

Once the dermatologist began his check, he noticed my ring splints and asked me what they were for. I told him, "to keep my thumbs on." Then I told him that my daughter has an official diagnosis of EDS, hypermobile. (My own official diagnosis is much more vague and scattered.) He's touching and pulling on my skin, and says "I was going to ask you about that." Then, "what other symptoms do you have?" I told him all my joints are generally lax and that some people say I have soft skin. And he said, "It is soft." Then asked me some more questions about Carapace and other family members.

Now, you may wonder, why I am impressed with this. After all, I am pretty obviously symptomatic, right? And I always give a complete medical history, both personal and family. But doctors hear what they want to hear, see what they want to see, and will tell you to shut up if they don't like you rocking their world with conditions they don't feel adequate to treat. They'd rather send you for endless pointless testing in the hopes that it will lead to something they know about than believe the evidence in front of them. But this doctor was different, and for the first time in a long time, I feel like I can trust a doctor, and my confidence in my own ability to assess what is going on with me is better because of that.

So. That ortho? He can either pull his head out and pay attention to what I say, or I can see a different one who listens in the first place.

and the ortho says....

2009-10-31T10:06:00.003-05:00

Frozen shoulder. He didn't think the tear was significant.

I don't know. Maybe? He didn't seem convinced himself. He kept asking me if my shoulder was stiff, and I kept telling him I couldn't move it through it's full range. That's different from stiff, right? Stiff is where you move slowly, but after a while, it isn't so bad. I wish doctors would use the same language the rest of us use. It would make things so much easier.

And he doesn't seem to understand the connection between shoulder problems and hand problems. Or he doesn't talk as if he understands.

Anyways, he prescribed PT. I'm willing to try just about anything, but I am dubious since he decided against any specific instructions to the therapist, on account of him being not so sure himself. Well, maybe I'll be pleasantly surprised with an unusually good therapist.

very slight update

2009-10-29T13:34:00.002-05:00

So, apparently I have a torn tendon. I don't have an appointment yet with the ortho, but it will be soon. I hope something good can be done, because my hand keeps going out of place now, too. Not that it takes much to make that happen, but still, not having it lock up on top of everything else would be nice.

Eventful events are eventful

2009-10-24T14:21:00.003-05:00

As promised, a long-delayed blog post!

These past couple of weeks seem to have been conspiring against me getting online again. But I found a place that actually fixes power jacks for cheap and without a bunch of caveats, so here I am again! Yay! The little beast is working better than it has in years, so I am hopeful of maybe now having it for some years to come yet.

It's been frustrating not having the laptop since work has been so busy I haven't been able to do much more than sometimes clean out my in-box of emails that didn't absolutely need to be answered and mark everything in my RSS feed as "read". If you said something that you were really hoping I in particular would read, and I haven't responded, give me a holler. Sorry for the inconvenience.

At least, the laptop woes coincided with the weekend Carapace and I had planned to go to TRF. I have some pictures, and I will post a few later if all goes as planned. We camped, as usual. As is not usual, the weather was as close to perfect as it can get for a Texas autumn and Carapace managed to have not one single significant seizure! I, sadly, had my usual allergies keeping the entire campground awake (ha! That'll teach those guys who put their tent right up against ours!) and, despite my efforts to plan, perimenopause played the hormone roulette wheel and came up red. Still, that did not negate the very important experience I had using a pair of hiking sticks instead of just my cane, or even pair of canes. With the hiking sticks, I escaped having notable leg and hip pain for the first time in years--and that despite my period! It had gotten to be so bad previously that I wasn't even looking forward to going. So, I highly recommend getting yourself some if you are a cane-user and have started to miss out on events that require a lot of walking.

My niece is out of the woods as far as the overdose is concerned. She's facing a long stint in psyc rehab, though. She prefers that to going home, I know, since the home environment is currently unstable due primarily to financial strains. There are other issues, too, but I don't like talking out of school about other people's personal lives. The one thing I will say is that, my family is in denial about how pervasive mental illness is in our family. It isn't just one individual with a problem. Most of us are untreated, uncounseled, and our coping skills are ad hoc, to put it nicely. I really admire Glenn Close and her sister, Jessie, for their decision to speak out about mental illness in their family. I hope that it will encourage other families, including my my own, to take positive action and be more supportive of each other emotionally. (And, in case my family stumbles onto this and puts two and two together, I love you all. Just, wouldn't it be nice to stop pretending and start dealing with reality instead?)

In more horrifying news, a coworker of mine has an aunt who is likely to not emerge from the coma that her husband put her into. It is a classic case of an abuser first isolating his victim, and then escalating the abuse. I am astounded that the husband is out on bond. How can this be? Why isn't domestic abuse taken more seriously?

Oh, and finally, much less universally depressing but potentially more annoying for me personally, it looks like I have a torn rotator cuff. And that I am actually going to have to do something about it, what with not being able to use my left arm being a real nuisance, what with me being left-handed and the driver's side door being on the left in the US. I don't know if it will mean surgery and then PT, or just PT, but, either way, I have a feeling I am facing a lot of PT. And I hate PT. So, expect a lot of griping.

My precioussssssss is returned!

2009-10-22T12:35:00.002-05:00

Oh, laptop, darling, darling laptop! Don't ever leave me again!

The past week or so has been eventful, and the next few weeks also promise (threaten?) more of the same. So, I should blog about that. But not right now. Right now, I should get back to work. But this weekend, I'll be sure to catch you all up on my exciting life.

computer woes

2009-10-12T22:37:00.002-05:00

I won't be online much for a while until I can get this dang computer to work consistently. So, please, I'm not ignoring you or unappreciative of you all. I just can't get my power jack to work.

a bad day

2009-10-09T19:43:00.003-05:00

I feel miserable. I have cried from the pain.

And now I learn that my niece has overdosed. This has just happened. My heart breaks. I don't know how she is yet.

Update: It looks like they got to my niece in time. She has a hospital stay in front of her, and we all have some drama to come, but I am grateful that she is still with us. She is a beautiful, sweet girl. I hope she can learn to be a strong woman.

Noise!

2009-09-25T00:57:00.003-05:00

I don't know that this will help with the woodchipping monster when it happens next time, but maybe it will help me get to sleep earlier: SimplyNoise, a noise masking website. I'm also eager to try it in the office to see if it can counteract the infernal buzzing, humming, roaring and whirring of office machinery. Try the pink noise with the oscillator. It seems soothing to me.

How do they know?

2009-09-22T01:23:00.003-05:00

Lately, every time I walk into the office at work, I start sneezing. This isn't too surprising, given my tendency toward allergic reactions. I have been mostly trying to ignore it, given that every single allergy medicine does two things (1) stop working if you use it too often and (2) fuck you up somehow. So, I ask myself, can I possibly get anything done if I don't take something? If I'm not sneezing constantly and dripping copious amounts of mucous on everything, like some kind of particularly off-putting movie monster, then I prefer to just struggle through. Last Wednesday, though, was movie monster day so I dipped into my arsenal of pills. Yay! My face stopped swelling! Boo! I ended up with insomnia, completely unable to sleep until 5:30 am. And then, not sleep well. At least I work second shift, right? So I don't have to be up until late morning.

Except that Thursday morning, at 8:10 am, I was then awoken by the unwelcome sound of a woodchipper being fed the tremendous pile of dead trees and branches they pile up across the street. It shook through the walls. It vibrated the floor. It screamed through my bones. I put in ear plugs. I moved into a different, further room. I put my head right next to the high velocity fan over which I can't ever hear the TV.

There was no salvation.

It only lasted 40 minutes, and then they were gone and the world was quiet again.

Not that that helped me any, because I still had insomnia and couldn't return to sleep easily. It isn't like this is the first time, either. And every single time, it is always after a night I spent struggling to get any sleep at all. Why? Why? Why do work crews do this? Why must they do the noisiest activity of their day first thing? Why can't they at least wait until nine? And how is it that they manage to do this only when I haven't slept?

Grrrrr. Visions of Fargo danced in my head.

Learning Japanese

2009-08-21T09:31:00.003-05:00

I started attempting Japanese this summer. It's been a long-standing whim of mine to learn a non-Europe writing system, and there is plenty of available Japanese text available, so I decided, why not? Beth thinks I've made a lot of progress, even though I only can recognize the kana and a couple dozen kanji.

The kana are easy--just sounds associated with symbols. They all look alike at first, and I still struggle with katakana shi and tsu, so and n, since the difference in those pairs is so small. But I am getting better. Eventually, I hope to recognize them right off and not have to sound them out to make a word, just like I've been doing since childhood with Roman characters. The kanji are easy since I decided to put off associating sounds with them until later. They can be learned just associating concepts, regardless of native language. Writing them is tricky, though. My magic slate is getting a workout. (I really don't know why Deaf students aren't first taught a written language like this, one based on symbols. It would make more sense than teaching a phonetic language. If there is anyone Deaf who has some insight into this, please, tell me! Maybe I am missing something?)

I listen to Japanese music on the way to work and back, and watch a half hour or so of Japanese television shows in the evening, and spend a couple hours looking at Japanese blogs, running them through Google Translate and then picking out interesting looking sentences (the ones Google Translate especially botches :D ) for me to work on myself. Can I translate better than a machine? I have to make heavy use of an online dictionary, but I am getting there! And then, of course, I spend some time every night just working on learning kanji and refreshing the kana.

But, yanub, you ask, how do you find time to do all that? And is that really the best way to learn a language? Answer: Once I get home, I don't do much that doesn't involve sitting. This is interesting, and also doesn't strain my joints. And, you may have gathered, I tend to hyperfocus on things that interest me until I am completely bored of them. Is this the best way to learn a language? Oh, I don't know. It's a way. If I spent time worrying about the best way, then I'd never get around to trying any way.

Hmmm, I guess that's my summer report. Now I should go find some crayons and notebook paper to illustrate it. I wonder if my mom will put it on her fridge?

New shoes!

2009-08-19T20:22:00.003-05:00

I had the afternoon off so I took advantage of the time to get myself to the orthopedic shoe store where I could get a pedorthist to help me find a new pair. After all, it has been a year since my last pair of shoes. This time, I had high hopes of at least getting something all one color.

I could tell that the pedorthists were skeptical that I needed any assistance from them. The senior one initially tried to get me to get help from one of the regular sales clerks, but I insisted it was pointless to look for shoes without specialized help because of my joint instability. When the junior, RC, came available, I explained again the general instability problem I have and showed the orthotics I had gotten along with the shoes last year, and mentioned that the pedorthist last year believed that my left leg had lost length. So, RC whipped out his trusty level and, sure enough, my left hip is sitting about 3/4 of an inch lower than my right. That's worse than last year, and I knew right away might be why I have been having so much pain throughout my leg. (You know, I told this same information to my regular GP and my orthopedist, who both promptly ignored it and thought I should have an MRI. I really do hate doctors.)

RC went off in search of shoes for me, coming back with, of course, New Balance, and, this time, a box of Drew mary janes. Oh, joy! Mary janes! Is it even a possibility? And also, of course, new orthotics--arch supports and a heel lift. Because, no matter what else, the old ones always turn out to be Not the Right Thing. Ka-ching! Oh well. When you have floppy feet, you get used to paying for the bones to be on the outside.

We started with the New Balance, with had the virtue of being all black, a definite improvement over last year's white and purple. And with the new orthotics, it was almost like walking normally. My heart sunk because I knew the Drews weren't likely to be as good. And they weren't. But they were almost as good! It was really tempting.

The drawback to the Drews was that they didn't stop my left ankle from pronating. Which then led to my knee buckling. Which drags my hip and spine down, too. Oh, one big house of cards, that leg is! I don't think RC had ever seen such instability, because he made a comment about me moving my knee around. I again pointed out to him that I all my joints are unstable, and that the only moving I was doing of my knee was trying to keep it from collapsing.

And that led to his suggestion that I need a build-up on the arch support. We discussed the shoes a bit more, because my vanity was pulling me toward the Drew. But I decided to get the NB. Sigh. They really are more supportive. If uglier. But the good part is that the build-up is on the orthotic, not the shoe, so if the opportunity presents itself to get the Drews (a second pair of shoes? for me? ones I could wear and stand in at nice events, not just sit? ooooh, I shouldn't get so crazy greedy!), I can just switch out the orthotics.

So, $235 later, at least, my shoes are all black and not driving me to my knees. Worth every penny.

On pain and piety

2009-08-17T23:28:00.002-05:00

Frida wrote a thought-provoking post on the significance of crucifixion in regards to understanding pain.

Speaking as an atheist, I don't really know of any other atheists who mock crucifixion. "The" crucifixion, maybe, but that is because the one single event is teased out of the tens of thousands and held up as something special, while all the others who died horrible deaths, alone and in pain, bodies disposed of like refuse--nothing and nobody so who cares? But taking Jesus as a representative case--as Frida does--rather than a special case is a healthy approach, I think. It acknowledges all the others, elevates the worth of all the other individuals who are largely nameless, recognizes the shock against humanity inherent in torture and murder. And in that way, the example is edifying.

The trouble with pain is that it can't be seen by others. People who are comfortable like to flatter themselves that they have somehow done something to deserve their comfort, that those who experience misfortune are maybe pitiable but still deserving of their hardship. And I wonder if, in this age when human sacrifice and mass execution is no longer in vogue, if the refusal to honor the pain of others, to respect and allow the alleviation of pain, isn't some sort of vestige of the past, a sacrifice that pain sufferers are supposed to nobly endure for the sake of the larger community? I remember reading a short story years ago in which a society had developed without any want, deprivation or pain--except for one child, who was kept locked away and tormented, whose suffering was considered essential to the well-being of the rest of the society. I think there is an extent to which poverty, pain, and disability treated that same way now, so to the extent that a lot of people allow themselves to think about those problems, they are seen as sacrifices. And in that way, the usual story of Jesus is again reflected, making a widespread social and political problem that could be resolved with human will into disparate special acts of sacrifice that should not be tampered with and that bear no relation to each other. After all, the lesson of the crucifixion as I was taught it as a church-going child included stress that Jesus wasn't like those he was crucified with. Those others, they deserved it, but Jesus was pure. I reject that. No one deserves pain.

Another joint bites the dust

2009-07-30T00:30:00.003-05:00

Friday, I somehow badly subluxed my left shoulder, as well as having the usual slippage in my neck. Needless to say, I was not happy. My housemate mostly managed to get the shoulder back in, and it turned out he has some basic massage skills, so he was also able to relax my neck enough for the vertabrae to slip back towards their original home. Still, sleeping and folding laundry and really attempting to do anything at all during the weekend was likely to be brought up short as my right hand grabbed my left upper arm and I offered whatever curses came to mind, which was a lot. By Sunday night, though, I had pretty much assigned the blame for the continuing nuisance to me handwriting more than usual. What with being left-handed, I figured that, since I wasn't exactly babying my arm, I had managed to inflame the tendons.

But I don't think that now, since this evening, the stupid shoulder seized up again. And this time, with Carapace's help, we figured out that the problem is orginating in the collar bones. Damn things are twisting, which locks up the shoulder, which then makes the muscles seize in the upper arm. It has been so bad off and on this week that I seriously considered seeing my doctor. Why did I not see him? Because experience has proven that any appointment for a subluxed or dislocated joint will coincide with a spontaneous reduction in that joint. I am a desperate woman to even think for a moment that seeing a doctor will be of any use in anything other than lightening my bank account and wasting my time with pointless tests.

So, I don't know what to do. This past weekend my attempt to go enjoy myself ended up with me standing and watching, afraid to put any new pressure on my shoulder as it started acting up again. This weekend has grander plans: road trip, museum, maybe some downtown San Antonio driving during which it would be real darn convenient to be able to steer. So, what to do? Anyone have any bright collar bone ideas?

A Best Chance

2009-07-19T13:17:00.003-05:00

Via Media dis&dat, here's a Dallas Morning News article explaining the problem with the two year waiting period for Medicare for people approved for Social Security Disability. I assume most of y'all that pop by here need no explanation as to why that rule is one of the stupidest regulations on the books, but go on and read it so that you can point it out to non-Americans who want to take a moment to feel superior as well as Americans who live under rocks.

The current push to establish a national health care plan may not come to much at all, but it is also the best chance in years to make needed reforms to Medicare rules. Even my beloved backward state of Texas supports ending the two-year rule (though I don't trust our two Senators to ever do the right thing, even when the state legislature has passed a resolution). So, if you haven't made your voice heard on the health care debate, at least pick up the phone or shoot an email to your Congress Critters telling them to make sure to end the 2-year rule on Medicare.

One point that isn't made clear by the article is the cost of not granting health insurance to people who have already been found too disabled to work full-time. A lot of people on disability could, theoretically at least, work part-time and would like to work. But while they are untreated, they can't work. Pain, seizures, lack of mobility equipment and so forth robs them of two years of productive capability. During that two years, skills rust, licenses become obsolete, and health declines to the point that the possibility of re-entering the workforce becomes evermore remote.

One of us?

2009-07-17T22:05:00.003-05:00

Thanks to EDS Alert Newsletter, I learned that a Swiss doctor is speculating that Michael Jackson may have had Ehlers Danlos Syndrome. And if you don't read French, you can read the article in mangled English, thanks to the power of Google Translate.

What do I think of it? Well, not much. I'm not big on following celebrities, so I have no idea if his symptoms really do match up with EDS. But even the speculation is helpful, I think. So few doctors have any clue at all regarding EDS. If a few of them read this article and start taking joint hypermobility seriously, then I will feel that something good has come from the circus that has arisen in the wake of Jackson's death.

Well, then.

2009-07-11T22:16:00.005-05:00

I have been very, very boring of late. Perhaps I have fallen off the face of the earth? But, no, terra firma is still firm, even if I do not stand firmly upon it.

You who care will be gratified to know that I am doing well physically. Yes, my joints are still crap, but that isn't likely to change unless the blue fairy gets off her ass and starts granting some wishes. My mental gears have been grinding something fierce, but I think I may be pushing past that now. We shall see. I've been in a state of high distractability the past several months, so I have quite the pile of things I either need to do or want to do but can't remember to finish or can't sustain the drive to finish or whatever it is that one need in order to see things through. On the plus side, I have a lot of projects started!

For one, I have finally begun cleaning out the room that is supposed to be the sewing room and has been cluttered with unpacked crap since I moved to this house. I actually have the sewing desk cleared off and the sewing machine set up. I actually mended something, and have to mend two more things tomorrow.

For another, I am trying to learn Japanese. This is mostly an outgrowth of my latest amusement, which is to go to a Japanese website and run it through Google translate. The resulting hilarity has finally provoked my curiousity enough that I have to know...why in the world would what is obviously "born in" (as in, "born October 5,1982) get translated "made of malt"? I have to know! So I have to learn.

I'm still sketching, though I need to be more regular about it. I am pretty pleased with my progress, even if the constancy of my practice leaves much to be desired. Oh, well. If I was going to let lack of follow through stop me from doing things, I'd never do anything. It would be the same success rate, but with no fun.

Oh, yes! Something I did at last accomplish! Listen up, y'all. I have been having this idea in my head that I could make my lap board actually work well as a laptop board if I just finagled with it. After staring at the limited selection of hardware in our local Mart of Evil, I finally saw what I need. Exactly what I needed! See, going back and forth between two aisles of useless crap and staring sadly at the stock does work! OK, this is what I bought: a roll of two-way sticky foam tape and a package of one foot long square dowels of varied sizes. I went home and put two strips of two-way tape one on top of the other toward the front of my lap desk. Then I got out the largest of the dowels, that just about is the width of the tape, and put tape down its length. Then I stuck it further back on the desk, using my laptop as a guide so it would be about an inch from the back of the laptop. This has been great! My padded lapdesk now can have my laptop on it without the laptop overheating, and I have a nice cushioned lapdesk to keep the no longer so hot laptop off my lap. And I like the angle much better, too! This is better and cheaper than anything I have seen for sale purporting to be a laptop desk. So, if you have a lap desk you like that you couldn't really use with your laptop, now you know what to do!

Stand by Iran

2009-06-28T10:01:00.003-05:00

Bon Jovi and Iranian singer Andy Madadian have recorded and released this cover of BB King's "Stand by Me" to show support for the people of Iran. What a wonderful way to buoy the spirits of Iranians during the current crackdown! I will now never hear this song without thinking of Iranian courage.

Yo

2009-06-24T01:49:00.003-05:00

Beth alerts me that I have been unusually quiet, even for me. So I reckon I best give a holler before people grow concerned. I'm OK, just feeling unsociable. Which probably means I need to work on that before it gets worse. So, Beth, thanks for prodding me.

Let's see, what's been going on....Saw my parents on Father's Day. Got to meet my sister's boyfriend at last. Nice guy, but can't barbecue worth a damn. Not that I said that. Even I know better than to insult a man's barbecuing skills.

Summer has been nice so far. I've been able to get wonderful local tomatoes and squash and yard eggs from the produce stand a few blocks away. The onions are about spent, but the melons are up, and so is the okra and soon will be the beans. Oh, and there are lots of cucumbers. I wish there were greens. Maybe if I get there earlier.

Summer is also kinder to my joints than the other seasons. And I at least have the chance to go to the river and fool around in the water. I'm trying to do it once a week, because water exercise is easier on my joints. Carapace and I went to the old mill dam this past week, and think we will go there the next time, since it is fairly close (only 15 miles away) and the water is warmish and not too fast.

Another thing that has been helpful is going off Red Yeast Rice. My doctor wanted me to take it because I wouldn't take prescription statins after reading about side effects. You know, horrible muscle pain (especially in the legs) and even liver damage? Hey, turns out, Red Yeast Rice has the exact same side effects. I stopped taking it, and now I just have the usual joint pain from arthritis and instability instead of the really frightening pain I had in March and April.

Bwahahahaha!

2009-06-01T03:06:00.003-05:00

Do you hate cleaning the kitchen? Do you like giant combining robots, even though--especially though--they make no logical sense? All is explained here, where Nobody Scores.

These aren't bears

2009-05-31T21:01:00.003-05:00

A friend emailed me, telling me that she had seen a bear. I told her that all I had seen were some deer and domestic cats. To which she replied, "Did the cats have on little aprons?"

Um, yeah. See:

Google, what's up with Blogger?

2009-05-31T14:00:00.003-05:00

Seriously, I am getting sick of Blogger randomly refusing to recognize or set cookies. Every few months, it's a fight. And I'm not geeky enough to remember exactly what steps I took to work around it previously. Did I just wait and things improved? Completely re-install my browser? Cast chicken entrails into a brazier and read the portents? Be sure to allow cookies to be set is the "helpful" advice. Yeah?

How come every other site I use has no trouble with setting cookies? Yahoo can manage this, but not Google? Live Journal? Facebook? Yeah, they can all set cookies, even if my enthusiasm for Facebook rivals my loathing for family get-togethers and school reunions, and Yahoo pretends every two weeks to not know who I am as part of its "security". What up, Google? (I've also been having trouble with Google's search acting all kindsa weird. Again, what up? Why are suddenly re-using open tabs instead of opening in new ones? This is not how I have things set.)

So. If you use a different blog host, and are happy as you can be with it, let me know. I'm once again pondering moving this puppy to a different kennel. One with easy customization and image uploading, and that will be easy to transfer to. If you have a suggestion, please leave it in the comments.

Sketchy!

2009-05-27T01:04:00.003-05:00

The final four of my holiday sketches! I know you were hardly able to contain your excitement. Truthfully, the sketches look better in real life than in the scans, but they aren't shabby in the scans, either. And this time, I remembered to use thumbnails instead of large pictures, so the page should load faster.

After observing the heron on the dunes, I went down to the visitors' center. It hadn't opened yet, so I shared the vista with a couple from Kansas. He was using a powered wheelchair to get up the multi-level ramp to the look-out. Seeing nothing strike my immediate fancy, I headed toward the center's ramp to the beach. They had a similar idea, and got there first. The ramp goes to the beach, but not to the water. This worked out nicely for artistic purposes, as the gentleman left his chair on the paved platform and, with the help of his wife, limped out to one of the benches to better view the Gulf waters. This sketch shows the chair, with footprints leading away. A dune hides the destination.

(I've read that there is such a thing as a portable walkway/ramp now, and that it is used at some beaches. The US National Seashores need to invest in some. Yes, they have beach chairs free for the use, but it takes a strong person to push them and most people who use wheelchairs do not have strong people to push them. They have their spouses, their moms, their children, who are just regular strong or even on the weak side. As someone who has often had to push a person both heavier and taller than myself on tricky terrain, I plead on behalf of all the pushers, please get the walkway/ramps.)

It was getting close to 8:30 when I finished the wheelchair sketch. I chatted with the couple, and then opened my cane/seat so that I could sit watching the beach as it came alive with color and people. This beach scene shows a handful of intrepid bathers wading into the still cool waters stretching into the horizon.

Remember that heron sitting at the top of the dunes? When I went back to the beach, it (or possibly another heron. I don't know one gray heron from another) had moved near the water.

First, it was standing in the partial shade of a picnic table canopy. The canopies are just slats, and at so early in the morning, the canopies threw stripes on the sands. I was able to get closer this time, sitting at the next table over while looking at the black-striped heron. The black on gray was fun, and I decided to leave the picture in the graytones I first rendered it.

After about ten minutes, the heron broke free of his prison garb in order to hunt along the water's edge. Gulls and plovers fluttered out of his immediate reach, so he struck a watchful pose, waiting for some smaller critter to forget caution. I also left this one black and white.

Thanks for taking the time to look at my sketches. It was a great experience, the first of what I hope will be many day trips just for the sake of sketching.

Back and Up

2009-05-25T22:29:00.006-05:00

I'm back and rested from my seashore shenannigans. I camped overnight at Padre Island National Seashore, enjoying good weather and more peace and quiet than I usually get from my neighbors at home--even if the dingleberries in the next campsite over did keep honking their horn around 11 pm. At least they stopped by midnight. This was the very first time in my 50 years of life that I went somewhere completely by myself for vacation. I travelled maybe too light, but it was OK, since it meant less to deal with both at the destination and coming home. I was very glad, again, for having bought an easy-to-pitch tent. Not even the evening beach winds could keep me from being able to set it up by myself. However, next time, if it is for just one night, I will probably just sleep in my car and if it is for more than one night, I will bring a lounger, because I can't even pretend to sleep flat on my back for more than an hour.

I trundled out to the water's edge the night I arrived. No one else was out there at all. Once I turned off my lantern, there was no artificial light. I figured I would get to see the moonlight and stars reflect off the sea foam. What I did not expect was to see the shoreline flash softly in blue and purple. I bent to examine the source, turning my lantern back on. It was the nasty seaweed that litters the beach! By day, it is quite ugly. But at night, the plankton that live in it biolumenesce up a storm! All these years I have gone to the beach, and I had never seen this. If you go, make sure to go to the shoreline when there is no one else there with lights or fires so you can see for yourself. Other beaches may have other colors, depending on the plankton. It's really wonderful.

One of my main reasons for going down was to get myself into regular sketching again after, lo, these many years. I took a small sketch book and some pencils and charcoal, and spent the morning after camping drawing whatever interested me.

Earlier today, I finally broke out my pastels to add some color to the drawings and have managed to scan in the first three of them. Let's see how they turned out, shall we?

This first one was done at daybreak. When I got down to the beach, the sun was just coming up. By the time I got the rough proportions of beach, sea, and sky pencilled in, the sun was off to my left, high enough in the sky that I couldn't see anything but blinding white light on that side, but not high enough to bring out color. For the most part, the colors of sand, water, and sky were indistinguishable. But still, there was plenty of light for the plovers and pipers to find their prey in the tide. The color I've added in is actually more than what you would have seen with the naked eye, but it's pretty close.

By the time I finished with that, the sun had risen enough to bring out the yellows and roses along the beach. This small shell was left in a tiny crevice made by the receding tide. I thought the shadows and colors around it were interesting, even if I didn't quite capture what I saw.

When I went back to the camp site, I looked over the dunes and saw this magnificent gray heron observing the hustle and bustle of the campers. He was quite large, maybe three feet tall standing at the crest of the dune. I should probably have drawn him with his neck extended, but this is the pose he settled into, so I went with it. I didn't want to get too close for fear of spooking him, but the only time he showed any sign of perhaps flying away was when a karakara swooped in nearby. But a three foot tall heron is a match for a karakara, so they quickly ignored each other. The heron would move, later, as I'll show you tomorrow.

Off to the beach

2009-05-20T13:25:00.002-05:00

I'll be less active online than usual, what with me daring to leave this laptop at home as I take myself on my very first solo holiday. I'll let you know if I have any exciting adventures.

May disability blog carnival

2009-05-16T19:48:00.001-05:00

If you didn't know before, you know now to head on over to Same Difference for the list of links. Set aside a chunk of time, because they are all good reading.

Pass along

2009-05-04T00:46:00.002-05:00

Ooh, I have a pass-along award! This is the sort where someone tells you they like your blog, and then you pass the honor on to more people. It's a good way of learning about other blogs, as well as of letting folks know you think highly of them. One Sick Mother gave me this one, a Premio Dardos award:

The Prémio Dardos is given for recognition of cultural, ethical, literary, and personal values transmitted in the form of creative and original writing. These stamps were created with the intention of promoting fraternization between bloggers, a way of showing affection and gratitude for work that adds value to the Web.

Now, who to pick, who to pick. So many good choices, and only ten spots to fill. Trying not to duplicate OSM, here's the list:

Moon Phases--Lisa writes engagingly about making her way through life after a work-acquired injury
Mind, Body and Soul--the very best medical blog I read
Frida Writes--musings on personal life and the world, through the lens of disability
Bad Cripple--William is one of them thar uppity cripple types
Through Myself and Back Again--always enjoyable and thought-provoking
Cara Makes--a craft blog with stories
Andrea's Buzzing About--science, work, family, disability, art, humor
En Tequila Es Verdad--atheism, politics, and lolcats
The Old Foodie--astounding recipes from the past, of the sort that make you hold tight your Betty Crocker
Media Dis & Dat--simply the most comprehensive blog on disability news

Hooray for the Evil Side

2009-05-02T20:17:00.007-05:00

I suppose I should talk about myself and how I am doing and blah blah. But doing that will only get me wound up into a rant, and not a fun one, so if I'm going to rant, lets rant about something far more important: Those damnable Autobots.

If you are a Transformers fan, or inescapably linked to someone who is, you have no doubt seen the recent episode, "Rise of the Predacons." When I viewed this episode with my housemate, I summed up the Autobots as a bunch of able-ists. When, later, my daughter also viewed the episode, her reaction also was "bunch of able-ists!"

Now, for those of you who have somehow managed to miss out on this touchstone of geek pop culture, in the Transformers universe, there are two sides which have been at war for hundreds of years. One is the Autobots, which in the current incarnation have a firm base on Earth and control of their home planet of Cybertron. They are the self-proclaimed good guys, led on Earth by Optimus Prime and on Cybertron by Sentinel Prime. Playing the part of the villains are the Decepticons, led by Megatron. The Autobots are supposedly on the side of freedom and life, while the Decepticons are into power for the sake of power.

So, if you were a permanently disabled Transformer, which side would you want to be on? I'm telling you, there's only one side that will have you for you, and that is the Decepticons.

Look at "Rise of the Predacons." In it, Elita One is revealed not to be dead, but instead to have been somehow combined with a spider to become Blackarachnia. As Autobots, including the two aformentioned Primes, discover that she is alive but now different, they each declare their revulsion and pity. Oh, sure, Optimus is all about wanting to cure her while Sentinel is speed-dialing Dr. Kevorkian, but the upshot is that neither one of them can envision a Transformer society in which somerobot who is part organic can be accepted and thrive. It's kill or cure, million dollar babycakes.

Meanwhile, what is the leader of the eeeeeeeevil Decepticons doing? He's on a road trip through space with his disloyal henchbot, Starscream. Megatron does not need to be palling around with Starscream, and if he were to get fed up with Starscream's constant jibes and machinations, he could always easily get away from him. Why? Because, at this point, Starscream has nothing left of himself but his head. And yet, this annoying, trash-talking head is still seen as a valuable contributing member of the Decepticons, worth being toted around everywhere. Sure, he's not fully respected, but that's not really different than when he had a body. And when the Decepticons come across Blackarachnia? Yeah, they call her a "techno-organic freak." But they will also offer her a job, a vital role in their organization, seeing her as valuable for her skills and knowledge. The one thing they don't do is throw her a pity-party.

So, here I am, feeling lately particularly vulnerable in this current economic climate as my body discovers new ways to give out on me. Which side would I prefer my own employers to emulate? Freedom-loving Autobots with their fetish for the normal or scheming Decepticons who don't care how you do it as long as it gets done?

All hail Megatron!

So, um, happy belated Blogging Against (Dis)able-ism Day!

My housemate vlogged about this after we discussed it. Let's see if I can successfully embed the video!

And then it got wholly depressing

2009-04-21T00:28:00.004-05:00

When last we met, I was venting about my terrible, horrible no-good, very bad day going to the neurologist. Why is it that, I say "I have this pain," the medical response is "maybe there's something wrong with your nerves!" Oh, fine, Doc, ignore everything else I am telling you. Let's placate you with playing Tiny Taser.

The neurologist was very nice, I must say. She did the usual poke, poke, pound, pound, before doing the electrical conduction test. What is an electrical conduction test, you ask, all doe-eyed and innocent. Why, it's two horrible things put together: being stuck repeatedly with needles, and being zapped with electricity! Yay! Doesn't that sound like fun? Doesn't that sound like it would be even more fun if you werealready so tired and in so much pain that you could barely pull yourself around? One thing it does, besides give you two kinds of pain you could have done without, is contract your already worn-out muscles. Yay! There's nothing better for exhausted muscles than forced contractions! Except the prospect of going to work right afterward and having to be on your feet and dealing with people.

After my torture session was finished, the neuro asked me to walk around a bit, which I did as much as I could, which is to say, I collapsed a couple of times when my leg buckled. Then we looked in tandem at the MRI results. I was pleased with this turn of events, since the previous neurologist I had seen not only didn't show me my MRI results, he hadn't seen them himself. The upshot of the whole thing was that she doesn't see any substantial nerve involvement. Some narrowing in a couple of discs and some bone spurs in the spine. But not enough to cause all my problems. This is no surprise to me, because I'm pretty damn sure that most of my problems come from the way my hip and knee slide all over the place. But what do I know? I just a person who inhabits this body.

So, let's go on to this week. Monday. Time to see the orthopedist for the follow-up. He tells me essentially the same thing as the neuro, and I tell him that the neuro had already told me all this, and that I wasn't surprised by it. Certainly not disappointed.

That's right, he says. If the nerves were involved, that would be very bad. All the things with the nerves would be huge problems that he couldn't do anything about.

Oh, I say, brightening, then what can we do?

"I can send you to a pain clinic for cortisone shots or you can do PT."

Now, this is not happy news, and I made that clear. I think I looked like I was about to cry, because he suddenly looked like he realized he had made some bad suggestions. I explained that I have done PT before, and that I found it pointless and exhausting. That I am open to PT only if it is going to do something to stabilize my joints. That I want pain relief, but not pain relief alone. That I need to be able to keep my job. That I fall down. Often.

Now he looked at me as if for the first time, as if I had mentioned joint instability for the first time. Jeesh. It was asked about in the new patient form. And I told him face to face. Really, why do I even fill these things out or bother with offering information before a doctor has done playing House?

"Do you use anything now to help with the instability?"

Duh. What's that black thing propped up in the corner next to me? Oh, yeah. It's called a "cane."

"Maybe a quad cane? Or a walker? Or a wheelchair?"

All that would be fine, I told him. That I actually have used those things under particular circumstances. Except that I couldn't use them and do my job. I explained about my job, what I do all day.

"There's nothing I can do, really, for intermittent instability."

"I wouldn't call it intermittent," I replied.

"Well, you don't fall down all the time."

No shit, Sherlock. This hardly makes me the Rock of Gibralter. There are houses of cards that stay up longer than I do, though. That's what I wanted to say. What I said was:

"There has to be something. I can't keep falling down at work. And I can't keep having this level of pain and get through a work week. Isn't there a brace or something? Can't it be that the joint instability and the nerve compression in my spine are making things worse together? Can't we do one thing to help?"

At this point, he finally thought to ask about my instability in my knee. He wanted to know which direction it is unstable in. That's easy. All of them. I showed him, saying that I'd be glad to just reduce the overall instability somehow, that maybe that would help the hip and the pain.

"How about a knee brace? Have you tried that?"

Oh, at last, we have gotten somewhere. No, I haven't tried a knee brace. Not a real one that actually fits and doesn't ride up or down my leg and lasts longer than a month of daily use. (Why haven't I? Because such things are prescription, and look at the trouble I have had in just getting this far. I swear, every medical device I have ever had prescribed has been gained only by me insisting that Something Be Done Now.)

So, now I have a knee brace that does seem to offer some degree of stability. So, that's nice. Though, so far, it hasn't actually helped with the pain, I am hopeful that it will after I get used to it.

But I told you in the subject that this experience is depressing. And it is. Because the reality is, I need to find another job. One that pays at least as much, if not more, and also has health benefits. And that I can use a quad cane, a walker, a wheelchair, while doing.* And I need to do it soon. In this economy. And I have to tell my supervisor this, because she is also my friend, and depends on me, and I don't want her to find out only when a reference check is made.

*There really isn't a good way to make my current job work out. The department is underfunded, understaffed, and overworked in an inappropriate facility with inappropriate furniture. Just ask the short people who have to get files out of the top cabinet drawers. We'd all love for our offices to be the experimental model for universal design. We'd also love to win the MegaMillion Jackpot.

I could have done without that

2009-04-16T02:57:00.004-05:00

Monday night was a hell night at work, the sort that leaves me knowing I will be in deep pain the next day. And when I awoke Tuesday to the sound of my cell phone alarm going off, reached over to grab it and then didn't feel it despite looking straight at my hand laying on top of the darn thing, I knew it was going to be a long day. A long day in which the "highlight" would be a nerve conductivity study on my legs and lower back. Yippee! What could be more fun? Maybe a hair dryer in my bathwater? Oh well. While I didn't expect anything useful to come from this study, it seems a necessary step since my doctors insist that joint problems can't possibly explain my pain and dysfunction. These are, of course, people who note that I am "unusually limber" and then don't want to hear it when I try to talk about family history of being unusually limber. (Any doctors who might read this: When your patient tells you what they consider to be an important part of their medical history, even if it doesn't seem important to you, that would be a good time for you to shut up the train of thought in your head and open your mind to maybe something useful being shared).

It is a good thing I had several hours to get from my bed to the doctor's office, because I needed every minute. I had hoped to stop at the hobby store and buy a sketch pad and some pencils, but being hardly able to move kind of ate into my time. As I finally threw myself into the driver's seat of my car, I noted that my left foot was buzzing. Fifteen minutes later, it had gone numb. Hey, why should my hand have all the fun?

I got to the medical complex, parked in the closest available handicap spot, and wondered if I would be able to make it in. Starting up the ramp to the sidewalk, it looked like the answer would be "no" because I didn't have enough momentum to force my left leg to swing forward. A woman maybe 20 years my senior was sitting in the vehicle next to mine, window down, watching me. "I'm stuck," I said as I manuevered a few steps from the ramp, "...try again." She laughed, "I have those days," the way only someone else who has been defeated by an ADA compliant ramp can laugh. With her moral support, I got up to the sidewalk and limped the 20 feet into the building.

The staff were waiting for me, which was great. I wouldn't have to fill anything out or even sign in. But then I was asked for my co-pay, which meant balancing to open my purse and dig out my wallet. I could feel my hip giving way and did what I have come to regard as the safest thing to do. I fell. No sense in fighting gravity. If I let myself fall, at least I can control the direction I fall. But it is damned embarrassing to fall in public. I fall in private nearly everyday, and just drag myself up. In public, I am a spectacle. Half a dozen hands reached out to lift me up. I chose the uninjured arm of a sturdy-looking man there with a hand fracture. It makes it easier to decline everyone else's help if I can pick the person least likely to fall on top of me.

I wasn't hurt, but I was shaken and exhausted from the effort of having to get up right away instead of being able to lie there a bit. I wasn't convinced at all that this was the last fall of the day, and I felt flustered for being the center of attention. I tried to read for the few minutes it took to be called to the exam room. As usual, the assistant started walking too fast. (Note to medical aides: If the person you are escorting has a cane, walk slowly. Stop to see if we can keep up.) In fairness, she did realize what she was doing before the door shut on me. That doesn't always happen. And then she was careful after that. The 10 feet to the exam room pretty much took out the rest of my energy reserves.

And then, the electrician showed up. I mean, neurologist. I'll try to talk about that tomorrow.

Doctoring time again

2009-04-12T12:52:00.003-05:00

A few months back, I switched GPs, since I had moved and my former doctor was now 15 miles in the wrong direction. The new doctor is one of those who aggressively monitors cholesterol and weight and blood pressure and whatnot that I'm not really all that concerned about, since none of that has killed anyone in my family. Still, new doctor's obsession with my cholesterol may be a good thing. I told him that it is my leg pain that is my priority. So now he is intent on helping me with that so that it will move down my priority list and he has a shot at convincing me to use statins, which I promised I would consider if he could tell me what's going on with the leg.

I've had mobility problems with my left leg since childhood, but they came and went and, when I was young, no one ever noticed unless I ended up flat on my face. And then it was chalked up to me being clumsy. And it never fully cooperated when I was bike riding; in a way that's hard to describe, my efforts to push through it always dissipated in the hip. I certainly never drew attention to it, since I was already sickly and strange and didn't need to add to my reputation as being weird by asking what other people do when their leg suddenly stops working. Anyway, over the past decade, I've used canes, a walker, and the occasional scooter or wheelchair to get me through the increasing times of my leg's unreliability. I've sought before to find out why it is getting worse, why it is constantly in pain, and if there is something I ought to be doing to arrest this decline. So, I go through this cycle of extensive, irritating tests that reveal nothing, with my questions about whether my hypermobility is causing it summarily dismissed.

New doctor has sent me to an orthopedist, which I was hopeful about because the previous doctor sent me to a neurologist. Repeatedly. And that was a deadend. Well, it was multiple deadends, but I suppose they had to rule out lesions. So, off to the orthopedist last week. And what does he decide? That I need to see a neurologist. Arrrrgh!

I have a nerve conduction study scheduled for Tuesday, and had a new MRI last week. Why, why, why? Why are they so convinced it's a nerve problem? If it's a nerve problem, why don't they think it has to do with the hypermobility? Every single one of them notices it, but then says it couldn't be the problem. Why not? Every joint in that leg slides around like a badly loaded stack of boards in a pick-up truck going down a dirt road. OK, yes, I just don't want to do the conduction study, because I've had one before, and they rank right up there with elective tasering on my list of things not to do.

Oh, well. Maybe something will be decided. And then what? My daughter asked me that, and I really don't know. It isn't like I expect that whatever is wrong can be fixed. But I would like to slow down the decline, since I feel more and more divorced from that leg to the point that we're barely on speaking terms anymore. And I realize I have to do something, because my main strategy of just ignoring it until I can't take the pain anymore is deterring me from doing things that I need to do on a daily basis.

In other news, I bought a slightly used mobility scooter for my daughter and I to share on outings. It breaks down into small enough pieces that I can pick them up and fit them into the back of my subcompact. I need to practice with putting it in and taking it out, and putting it together. I suppose I should get to it.

April Blog Carnival

2009-04-09T08:00:00.027-05:00

The summer blockbuster season is just around the corner. And if summer be nigh, can action heroes be far? Nay! For here, on this very post, you find those who have heeded the call, answering my plea for help. Their hearts are pure, their aims are noble. They are the Action Heroes of the April Disability Blog Carnival!

I hadn't really planned to have any theme, and sort of pulled this one out of thin air at the last moment. It was the logical choice, I think. I remember, oh, back in those days of childhood, when I didn't notice the bad animation in cartoons, how I came to love my first comic book super hero, The Mighty Thor. It wasn't for his flowing locks or his bulging biceps. No, it was because he preferred his secret identity as lame Dr. Donald Blake to being the son of Odin.

I still enjoy the fictional heroes who not only make peace with their weaknesses, but actually enjoy them. I also like the ones who aren't going to let a little thing like repeated brain injury and medical quackery stop them in their quest to destroy the bad guys. Oh, Condor Joe, you are my hero!

Not everyone is as on board the hero train as I am, though, to me, an action hero is a regular person with the boring parts removed. And usually a silly costume.

Ettina presents an alternative to 'action heroes' in Willpower is Not Enough posted at Abnormaldiversity.

And here's the sort of hero I most respect, from Life at Full Tilt, Action Heroes: My View.

"I just want to share a moment of absolute freedom," writes Kateryna Fury. "I haven't figured out how to dance in my wheelchair, since it is broken and resists working at all, but found another way." What a lovely post to be found at Textual Fury, describing the feeling of Dancing with Limited Mobility. Yes, Kateryna is a regular Action Girl, one of my favorite heroes.

And here's another Action Girl. Etha of A Wheelchair View shares her passion for photography by explaining the benefits of a VR Lens for the Wheelchair Photographer.

What is it about the sea that makes amputation the de rigeur disability of the ocean-going hero? Whether real life hero Admiral Lord Nelson

or The Man Who Can Talk to Fish, Aquaman,

a missing hand immediately telegraphs derring-do. Or piracy. And you might think that indicates evil, but it actually represents one of the positive aspects about the pirates who have fed popular imagination. When someone was injured, they were given a disability stipend and kept on crew if at all possible. Skilled seamen were treasured, and willingness to sacrifice life and limb depended on the sort of group cohesion that comes with knowing that you aren't considered expendable.

I think Aquaman and Nelson would both find the arm and leg prosthetics in the making posted at A Repository for Bottled Monsters quite interesting (this Flickrstream link takes you to see the pictures). Neither the real person nor the fictional one was big on hiding the missing limb. Nelson went with an empty sleeve, while Aquaman sports a harpoon. What would they think of the mid-20th century attempt to blend function with disguise?

Even better, Mindy at Fake Arm 101 has some ideas about identity as an amputee. In I am not Arm Girl, she explores both other people's reaction to her visible difference, and her own reactions to the gaze and questions of strangers.

The heroic team is a staple of action hero stories. The members of the team are not uniform, and as individuals often have some glaring weakness. But together, they draw strength from each other.

What else does that? Oh, yeah. Families. With team leaders, Mom and Dad.

Erin presents 7 Things Parents Should Know Prior to Going to an IEP Meeting posted at School Psychologist Blog Files.

But then there are the things that happen after the IEP meeting, the things that constantly shake the confidence of the parent. Bug's Mom tells about School, Recess, PE, and my breakdown.

I think just about any parent who has a child with a disability can relate to Rickismom's Parenting a Child with Down syndrome or Other Special Needs – a Declaration of Rights posted at Beneath the Wings.

Jordan's mom has a thing or two to say about the attitudes of others toward her son, in It's Not Contagious, posted at River of Jordan.

Bad Cripple, William Peace, says that An Ancient Skull Makes Me Think about the history of human disability, family, and community.

Of course, not all communities, or even families, are supportive, much less heroic. Samedifference1 asks What Happens When Online Support Groups Are NOT Supportive? at Same Difference.

And crafty River Wolfe wonders about the tendency to dehumanize "The Blind Guy" on American Idol, at polymer-clay-art.com.

Many disability bloggers spoke up in the wake of Obama's Leno gaffe, as the President went from Superman to Captain Hammer in the space of a single sentence.

Michael Berube places the incident in a larger cultural context, Special ?special? edition posted at Crooked Timber.

In Get Over it: But What are We Getting Over?, William Peace is chagrined that Obama's foot-in-mouth hasn't led to more in-depth national discussion of disability stereotypes

Laura at Touched By an Alien: Life as I Know It explains why she found Obama's comment inoffensive in No Offense Taken. Perhaps one reason that remarks like Obama's continue to be made despite the efforts of a couple or three generations of activists is the uneven pace of change in education. Laura also talks about that in An Incomplete Solution.

Wheelchair Dancer, in How We Talk About Each Other, discusses disability language use within the disability community. Changing the way we talk about ourselves is important to changing how others talk about us, isn't it?

One trend I like in action heroes is that there are more of them who are, let's say, socially awkward. That's last year's Kamen Rider, Kiva, who was extremely shy and reclusive. But he gets more outgoing. Then relapses. Then outgoing. Then relapses. Then got outgoing. Then relapses. Then extremely assertive. It was almost realistic. Well, for a show where people regularly henshin.

The Queen Bee talks about The Very Model of Social Disability in Andrea's Buzzing About.

What the Heck is Prosopagnosia posted at BayDisability, will tell you more about living with face blindness.

Dark Angel brings us into the Twilight Garden with Off the Fence and On the Spectrum. Also, take a look at her post, I Have a Dream.

Elisia Ashkenazy, who has her own blog at Aspitude, writes about Blasting Stereotypes in Autistic Females posted at Autism-Change.org.

One recurring motif for super-powered action heroes is invisibility. However, being invisible isn't all it's cracked up to be, as these bloggers can attest.

Dave Hingsburger discovered that he is invisible in An Elephant Disappears posted at Chewing The Fat.

Penny Rdr talks about why she had to stop being invisible in Coming Out of the Disability Closet posted at A Penny for Your Thoughts.

Think no one is ever invisible to you? Test your when you take the Quiz: Representations of Disabled Bodies in Logos at Hoyden About Town.

Need a hint? Read Astrid's The Real Meaning of 24-Hour Care posted at Astrid's Journal.

What would an action hero do with all the spare time if it weren't for the dastardly villains that show up? I admit, sometimes I like the villain more than the hero.

The Goldfish tells us How to Be a Disabled Villain.

If you want to be a real villain, and get away with it, see how Roberts Bartholow did it in The Rafferty Experiment posted at Providentia. As Penny Richards comments, "Not only did this horrible thing happen, but the perpetrator published the details and was never punished for his act. Let's remember Mary Rafferty and the many others like her." Well, I guess he didn't completely get away with it. There was some tut-tutting.

To sleep, perchance to dream--even necessary for white knights and carnival hosts. Thus I leave you with two more entries.

Fatigue and the dream of finally being rested is Cheryl's theme in I'm Tired posted at Finding My Way: Journey of an Uppity Intellectual Activist Crip.

And in Tiredsville Donimo lets us all know that we can heroically meet any challenge if we just imbibe the right soft drink. Well, any challenge except for kryponite-laced carpet. That's even more diabolical than the Spam regularly featured at Chronic Holiday.

Thanks to everyone who participated, willingly or not, and to all who go visit these heroic blogger's posts. Leave them a comment!

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Of course, there are submissionsI forgot, and typos I have made. I'll try to repair any mistakes; just let me know. And if you forgot that there was something you wanted to submit, please post in the comments. Thanks, everyone.

Blog Carnival--So you want a topic?

2009-04-01T16:47:00.003-05:00

The Disability Blog Carnival is coming up, and will be hosted right here April 9. I didn't set a topic because I tend to stress out if given a topic, but others have indicated they'd like one. I aim to please, so here is the topic: Action Heroes.

Interpret it broadly or narrowly. Or ignore it altogether, if you are like me and freak out when given a narrow parameter.

You can submit a blog post either by leaving a comment here, or by clicking into the Disability Blog Carnival thingie icon whatzit in the lower lefthand column of this site.

By the way, if you submit a blog post, you will already be an Action Hero.

Party Crashers

2009-03-27T22:51:00.007-05:00

I read Chewing the Fat whenever Dave updates, which is nearly every day. His post, An Elephant Disappears, told of an incident at an airport that demonstrates an extreme of the ableist mindset. For those of us in the disability blog world, it is astounding, but ultimately believable, because we know Dave and know we can trust him, and we know ableism, both as a word and the concept behind it. We know it, and talk about it, the same as we know and talk about the social model or self-advocacy.

It is something, isn't it, how blogs become little homes, or maybe parlors, where we expect to meet with certain visitors who know us and have a history with us, and we say things in ways that our expected visitors understand and build friendships and kinships. And then, every once in a while, a parlor gets inundated with strangers. Some are come back again as friends, most are just curious but well-meaning one-time guests, and a dread few are home invaders. I see it happen so often to Beth, and now see these party crashers at Dave's. And I wonder about the people who go to other people's personal blogs and act rudely. Do they act like this in real life? If so, they must spend a lot of time "thinking it over" under the custody of their local constabulary.

As someone who is more often a guest making a comment than the other way round, I too find it disorienting when I go make my visits to my friends and find all this noise going on. But not to worry. Friends stay around after the excitement has died down, pick up trash and wash dishes.

Purple Day

2009-03-25T17:06:00.004-05:00

March 26 is Purple Day. Various epilepsy societies throughout the world are asking supporters to wear purple. How does wearing purple advance epilepsy awareness? Hopefully, enough people will be wearing purple that other people will get curious and ask what all the purple is about.

What it is about is that 50 million people throughout the world have epilepsy, yet there is very little funding available figure out the many root causes of epilepsy and how to manage the conditions. Even worse, few people know what to do if someone has a seizure, and many people are very fearful of those who have epilepsy. Check out Purple Day to find out more about the origins and goals of this awareness day, and the Epilepsy Foundation for more information about living with epilepsy.

Catching up

2009-03-15T01:23:00.004-05:00

First off, go check out Charming BB's really great Disability Blog Carnival. Go on. I'll wait. But be sure to come back here. And be sure to leave me a link to your favorite post this month, because I host right here next month. It will mark my first time ever as a blog carnival host. I don't have a theme I expect others to fit themselves into. I'll see what comes up from the submissions I get. Help me out here, and send me your best stuff!

Second off. Er. Um. To continue. Er, no, to switch topics. Yes, that's it. I went to Staple in Austin last weekend, and got a copy of Usagi Yojimbo, Book 1, "The Ronin," signed and with a little sketch by Stan Sakai. Oh, so cool! And many other neat people also were there, such as Rod Espinosa and Chris Allen, who have both done historically oriented comics for Antarctic Press. I bought a signed copy of Allen's Obama, the only Obama commemorative item I have spent money on. I also bought The Less Than Epic Adventures of TJ and Amal, which is a self-published book by E.K. Weaver. And I got a very nice sketch of Amal tossed in for the price! And also, I bought Phuni Comix, which is more of "Science and Religion", which I bought last year and enjoyed. It's probably a niche taste, but I find the silliness appealing.

And lastly, my right wrist separated Thursday night. Oh, it's fine-ish now, but I'd like to know, why is it that I can never find my bandages and splints when I need them? What compels me to put them away? Why aren't they laying out on my dresser along with my old teddy bear, single earrings, and crumpled receipts? I swear, I go through this every single time. Where can I put them that they won't be in the way when I don't need them, but also won't be impossible to find when some part of me has decided to storm off in a hail of bitter recriminations and tears? What do you do about things like this? Where do you put your repair kit stuff that it can be fetched with whatever limb you have working at the moment?

In which I finally make what is probably an obvious connection

2009-03-12T01:54:00.004-05:00

The past several days have been absolutely miserable. There was a joint in my body that wasn't complaining, and quite loudly, too. And I was nauseous. I was inflamed. You'd think the nausea would have clued me in, but I am stubbornly dense. Anyway, pain. Of the beaten to a pulp by giants and then rolled over by heavy machinery that won't get off me sort. I only have Darvocet for pain relief, because this bad of pain this much all over isn't an everyday thing, for which I am thankful. And even really bad pain can be ignored to an extent if I can stay distracted. Being distracted, though, is impossible when one wants to sleep.

Monday night, I finally realized that my head was also hurting, that someone was coming along every few moments and wailing on the right side of my skull, sending my eye shooting out the socket. Well, it felt that way. And that is when it dawned on me that maybe I ought to take a Zomig. It worked marvellously well. I actually fell asleep within an hour and slept through the night.

So. Hmmm. Now I'm thinking that my crapped out neck maybe leads to the migraines, and the migraines magnify every other distress in my body. It also helps that the pressure front that was bearing down finally broke into actual storm. However, since I can't command the weather, I will instead follow up on this migraine-joint pain connection.

Death by a Thousand Paper Cuts!

2009-03-05T02:17:00.003-06:00

OK, not death. And not a thousand. But still...oh, so very, very annoying!

My fingers go on these jags wherein, for a couple weeks every so often, it seems as if the cuticle around the nails tears at the slightest provocation. Since I handle paper as part of my job (oh, the perils of office work!), I can't avoid the chief cause of the injuries. The last couple of weeks I've been furiously painting Liquid Bandage on one finger, then another, and then recovering the wounds an hour later when the stuff peels off. Anybody know a better product? I have considered Super Glue, but it is pretty much a one-time use product for me, since I can never get the lid off more than once. If it gets too bad, I'll wear latex gloves at work. It looks weirdly creepy, though, so I like to avoid that.

The Blue Lantern

2009-02-26T00:01:00.003-06:00

Obama, I understand, is a big ol' geek. That's why I'm sure he'd love this rendition of himself as Phil Jimenez's Blue Lantern.

Five-oh

2009-02-14T01:47:00.004-06:00

The great thing about naming one's blog in such a way as to disabuse readers of any notion of timely updating is that no one worries when I haven't posted in over a week. This state of affairs might have gone on for another week, but my fiftieth birthday is Saturday (today), which is a big enough deal that maybe some of you would be put off if I didn't tell you.

Not that I'm doing all that much interesting for my birthday. I'm taking a friend to the airport, meeting up with my daughter, and going to a comic book shop where I will also meet up with a friend who has never bought comic books but thinks it might be cool. And we will eat. I think I will try a Greek place my daughter goes to with her best friend. Then we will go to Goodwill to rid ourselves of things we can no longer wear. Then we will go to Half-Price Books to rid ourselves of books we have done with and to buy new used ones. And then I will be exhausted. Gad, what am I doing? That's a lot of standing and shopping for one day. My knees are already preparing their protest, I can tell. They are busy with poster paints, picket signs, and giant puppets. But I can assure them, my plans include plenty of sitting down time. And I have a cane that unfolds into a seat, which works well for browsing for comics and books.

Which reminds me.... I went clothes shopping last weekend, since I've dropped too many sizes to keep on wearing my old stuff. While I was at the mall, I spotted another woman, about my age, making her way into the parking lot with a look on her face and a gait that I recognized instantly. She was in agony, every step sending waves of pain from her feet up into her brain, and all she could think of was to keep moving, to get to her car, to sit down. She nearly stumbled into traffic but showed no sign on her face that she saw anything beyond her own pain. And she was wearing what passes for comfortable shoes, so I know this wasn't the first time. Sister, I feel your pain. Where's your cane? It needs to be your next purchase.

Oh, other excitement today. I mean, Friday, not today which is Saturday. (No, I haven't gone to sleep yet. Yes, it is 3 am. Why do you ask?) I had my first full fledged asthma attack in quite some time. Oh, yeah, I always have asthma, and generally have some symptoms. But except during ragweed and pollen season, when I'm prepared, I haven't had any serious problems in several years. Damn, I had forgotten just how much I hate it. Guess I'll sleep sitting up tonight. Which is today. Er. Man, my sleep schedule is just a mess.

So, why am I going to the comic book store for my birthday? Oh, you tell me what else I should do when I am severely single and my birthday falls on a day dedicated to romance, and every freaking event in the city is geared toward couples? Dammit, I'm going to commune with my kind. It's been over six months since I last had the time to go, so surely there's something waiting for me. I wish Dylan Meconis's Bite Me was out already, but I guess I'll just have to use its coming out later as an excuse to make another foray sooner than six months. At least, it better not take 6 months to finish its journey from web comic to bound graphic novel. I wants it now!

Speaking of vampires. Sort of. Last month's most interesting geeky fun was watching Kamen Rider Kiva, the touching story of a young man, abandoned by his vampire mother, raised by a mechanical bat and a possessed violin, who lives in a house with the best bathtub in all Japan and the worst locks. Seriously, if I'm taking a bath and people keep showing up and climbing in with me, I'm seeing the landlord about my deadbolt. But I really liked the character development of the story, and wish it had gone on longer so more could have been done. So far, the current Kamen Rider isn't as promising. The worst photographer in 10 worlds has to fight monsters on 9 worlds in order to keep the 10 worlds from collapsing into each other. Ummm. It's being called "Crisis on Infinite KR Worlds" by toku followers, and since versus-type stories don't appeal to me, this one is rather leaving me cold. However, Donut, I mean, Decade, does have a "light red" uniform, so I am at least amused. Oh, and Heroes is back. The entire issue of Daphne's CP seems to have been dropped. Why is it that a TV character only has a disability when it is convenient? I'd like TV shows to reflect the reality that disability is everyday, not just as a plot device. Thus, Kiva failed when Nago's eyesight came back miraculously, but succeeded as Wataru, even though he got better at coping, continued to grapple with his rather substantial psychiatric issues all the way through the series. Heroes, can't you take disability more seriously than a kids' show?

Well, now, this post has been all over the place, hasn't it? Happy Valentine's Day, all you couples and triples and whatnot out there. And the rest of you, this is my birthday, so celebrate it with me. Surely there is a comic book calling your name.

Truly wonderful!

2009-02-03T13:30:00.005-06:00

I read in Media Dis & Dat today of a new park being built in San Antonio, TX. Morgan's Wonderland, named in honor of his daughter, will be what is probably the first-in-the-world public park with dedicated primary use for visitors with disabilities. Philanthropist/developer Gordon Hartman has even managed to bring the city, county, and local school district in on the project, and is making sure to keep records of the process so that others will be able to duplicate his efforts. Non-disabled children and adults will also be using the facilities, but at this park, disability is not an after-thought or add-on. How neat!

Ring splints

2009-01-23T01:50:00.007-06:00

I don't know if the use of ring splints in EDS is widespread enough to be called universal, but it is pretty darn common. I've used both Silver Ring Splints (SRS) and Oval 8s, both of which have plusses and minuses. I first got SRS, oh, six or seven years ago, though I needed them earlier. Completely losing the ability to maintain a grip was a motivating factor in getting them. I got eight fingers splinted at the time (three fingers on each hand, plus thumbs), leaving out my pinkies in order to reduce my out of pocket expenses. Since then, I've managed to lose splints, break splints, and replace some splints. Pinkies are still waiting for the love.

Perhaps you'd like to see pictures? OK, here's pictures!

This is a front view of my hands with silver ring splints, including thumb splints. I have the thumb splints tied on with elastic band because (1) I find having anything more substantial right at the base of my palm drives me nuts and (2) I tend to snag bracelets. I used to have a splint for my right middle finger, but it is broken.

Here you can plainly see that I don't have my pinkies splinted. You also get to see my lovely saggy baggy skin. It's always been that way, sort of flopped on top of bones and veins. My hands naturally curl up--tighter than this--and the splints help keep me from contracting them quite so much.

Both hands, with fingers forced straight. Notice that the unsplinted fingers are taking creative paths. You can also see that my thumbs do their best, even splinted, to disappear into my palm. The splints on them guide them into the correct place, but don't put a lot of pressure on them. In fact, over time, all of the splints become deformed from my fingers' tendency to veer off. This is why Carapace prefers 3 Point Products Oval 8 splints. Also, you can buy Oval 8s directly, if you know your knuckle size, but SRS need to be sized by professionals. Because I have so much extra skin on my fingers, and the joints were quite swollen, the hand therapist had quite a challenge getting the right size, so if you are like me, don't expect that you will get the right size the first time with SRS.

Finally, here is a palm-side view of my left hand. You can see that I have a mixture of extra-strength and regular-strength splints. I would suggest to anyone to get the stronger ones because of the tendency of the splints to deform after a while.

*********
Please take a moment to speak up for Minna. Her life depends on all of us.

I ain't dead

2009-01-20T00:16:00.003-06:00

It's the little things that keep me from blogging. Specifically, of late, my left pinkie finger. I keep forgetting that it has decided it isn't stable anymore, and thus I keep slamming it against the keyboard as if I could actually type with it. I'm going to have to do one of two things: Either I remember to type like my daughter, who has never had use of her pinkies, or I actually remember to schedule a visit to the hand therapist and get the pinkies splinted up. Me remembering either one doesn't seem to be happening. You'd think the pain and annoyance would be enough reminder.

Note to anyone else who is in the process of getting finger splints: When they ask you which joints you want splinted, even though you would like to hold the cost down, go ahead and get your pinkies done even if they don't seem to be much of a problem. Otherwise, you'll be like me, grumbling "ow!" every few keys and then just closing down the program to go do something that doesn't threaten to dislocate your poor neglected pinky.

Other than pinky abuse, I've been having a pretty good time of things these past few days. I did take health leave for a few hours Monday last week. Thanks to the combination of EDS and the menstrual cycle, I was a collapsing mess all day. Menfolk, you have no idea what it is to have a monthly dose of cartilage dissolving hormones loosening up your already loose bones. By mid-afternoon, my muscles were spasming from the effort of holding myself upright. When the boss suggested everyone taking a "meeting" at a lakeside cafe, the first thought that popped into my head was dread at trying to sit up in a bistro chair. That's when I knew I really needed to just go home. Ah, home, where my recliner is and gravity isn't trying to coax my head off my neck.

I am actually trying to get another post written, but finishing it will have to wait until I'm up to bashing my pinkie some more.

Fuzzy

2009-01-01T19:40:00.003-06:00

It was the Monday before Christmas and Carapace wanted me to take her to see the lights and get in some last minute shopping. So we started off with a nice lunch and made our way into The Big City.

On the way, I started to feel it slipping over me. Pain? Maybe. I'm not particularly good at identifying pain. Discomfort, yes, discomfort. Tired, so tired. Patella slipping out of place--annoying, potentially ruinous of the night's plans, which involved walking through a neighborhood to see the lights. But tired, so tired. So very, very tired. And uncomfortable. And nauseous. Everything comes through as if in static. Sight, sound, touch. So much fun to be driving like this, oh, such a delight. No stress, no stress.

When we get to our first destination, I take a Zomig and stay in the car, try to sleep. A car pulls up in the next space, waiting for someone, it seems like hours, pouring out pounding hip hop. I want to vomit. I sleep for five, maybe ten minutes. I give up and go into the stores. Maybe I am feeling better. Maybe that's why I can't sleep. I'll shop. But the lights are wrong, there are lines, there are people moving faster than I can process. My stomach starts rolling again.

Carapace sees me and tells me I look bad. I wonder what I look like to other people who aren't her. She thinks I look like Death, that I have no color in my face, that my lips are white. I feel like Death, so it is good to get some external validation. Do other people see me and see the same? Is that why they move past so quickly? I lie to Carapace, telling her I feel a bit better, and that we can go to the next shopping center. She's having a good night, this time. And I think she rather likes it when she is the one whose brain isn't misfiring.

We get to Target, and she no longer believes I am doing any better. "You need caffeine," she says as she hands me a migraine tablet. I protest that I've taken the Zomig, that maybe it will start to work. "Doesn't matter." She's insistent, and I'm in no shape to argue. If she'd told me I needed arsenic, I'd have relented just as easily. "We need to get some coffee in you." I buy a coffee at the in-store deli, but it is their last cup of the day. It's weak, old, and not enough. She's bought her last few items, and I promise to stop for coffee as soon as we find a place.

I drive on auto-pilot, taking the literal roads of least resistance. Other drivers are being extra courteous as I slow down, trying to suss out a place to go, a place that won't be too loud, too bright, too unlikely to have coffee. I've about given up when I spot a Whataburger. Assuming they have coffee, it will be in copious amounts, because they don't do small. And, while brightly lit and garishly colored, they don't do "ambient music." I've had all the ambient music I can take for one day, so fluorescently lit orange it is.

We linger over coffee. I discover that the annoying scratchy crinkly sound I've been hearing all day is my knee brace. I have a window now. I'm not completely better, but I can function like this. We leave. Young men in the parking lot are singing about sex. They notice us as we approach and suddenly change their tune: "Fa la la la la, la la, la la." I get in the car, laughing. It's the best I've felt since lunch.

We go see the lights, and they are fun. I'm glad not to have missed them. One more store--groceries. Now Carapace is down on the floor with a seizure. Her window is closed for the day. Mine will close again soon. Time to go home.

X marks the Day!

2008-12-25T01:10:00.003-06:00

It's here at last, Xmas Day! The most X-citing day of the year. Yes, there are the gifts and the relatives, and the contemplation of all I didn't get done (stack of cards addressed but never sent, as usual? Check!) But the really thrilling part is what comes next: Putting it all away!

Wheeeeeeeeeeeee!

Oh, you think I'm joking, don't you? Well, you are so wrong. See, I grew up with a tradition that the house must be clean come January 1st. Tree and decorations taken down, things replaced by new gifts packed and taken to the thrift store or tossed if too ratty, the general mess of the holidays cleaned up and the household ready to start in on the new year's troubles with as few of the old year's as possible. And I only have 5 days to do it in! And on the sixth day, I make a nice simple dinner of corn bread, greens, and black-eyed peas. And that is my favorite holiday dinner of all.

I finished all the wrapping and deciding who gets what on Christmas Eve (except for my daughter and son-in-law, I can't generally remember what I got for who), and started the process of putting all the papers and tissues and bows away, and attacked the Room of Doom where such things as gifts waiting for wrapping and projects hoping to be completed lie in wait, strewn on every flat surface, and on some surfaces which are not quite flat but allow for artful balancing. The Room of Doom is much less doomful now, having transferred the doom to my knees and feet since I foolishly did my sorting without wearing shoes. Which means without orthotics. Which means I will be paying for my oversight for quite a while. But no rest for my weary soles! There is more cleaning to be done in the early morning before the day's festivities begin. And then there is breakfast to cook.

Just knowing that the new year is coming, I am feeling much perkier. I might even get some cards in the mail.

Open Letter to Obama

2008-12-23T11:02:00.006-06:00

President-Elect Obama,

I was among the millions stirred by your victory speech the night of November 4, heartened by your call for the contributions of every American, including the "disabled and the not disabled." I was so excited that I immediately blogged about it.

Since then, I've been thinking about your invitation. It wasn't specific, which is entirely appropriate since you have no way of knowing what each individual may be able to bring to the table. What can I do, what special insight might I have? More generally, what can disabled people offer a country that often thinks of disabled folks as nothing more than an unfortunate expense? Now, since your bizarre and inappropriate selection of Rick Warren to give the prayer at your inauguration, I have a better idea of what we can bring: a sense of what inclusion actually means.

I have been disappointed in the Democratic Party for several years now. Back in 2004, at my county convention, I put forth a proposal to support the strengthening of the Americans with Disabilities Act in the wake of the Supreme Courts undermining of that important civil rights legislation. All the time, I hear "oh, no one is against the disabled." Well, you'd have had a hard time proving it that day, as person after person, with increasing vehemenence denounced any such bill. And what justification did they give? To a person, they each stated that they were against "special rights."

"Special rights." What are special rights? Apparently, (here I'm judging from the comments made by fellow Democrats) the right to a fair chance at employment, the right to housing, the right to visit the homes of friends, the right to access public buildings and businesses. There is a further context, the right to the body, the right to sexuality, the right to marry. The tradition of denying people with disability reproductive rights is not just a sorry history painfully recorded as a warning to the present. Instead, it is an ever-present reality. As the Ashley X case made clear, public support for even the violation of body integrity is widespread, with sexuality being considered a burden for the disabled rather than a natural function. While law has changed to permit marriages for people with intellectual disabilities, social sentiment has little budged, and practice continues to deny people with disabilities full rights to control over personal sexuality.

What other group in the United States currently faces similar restrictions against their sexuality, their employment, their right to housing? Who else is told that access to the same rights as everyone is "special rights"? That would be everyone considered homosexual, the group you have chosen to single out as expendable in your choice of Rick Warren to offer an inaugural prayer. Rick Warren, who actively campaigned for California's Prop. 8, and who embraces only "ex-gays." This is a wholly unnecessary slap in the face to gays, lesbians, bisexuals and transgendered people. And it is an insult to those of us who are straight and count among our friends and family non-heterosexuals. We have seen their pain, their isolation, their hardship, and see how the inherent difficulties of being a member of a minority group are magnified by legal discrimination. Rick Warren wants to continue to make life as difficult as possible for non-straight people, justifying his discrimination with "love the sinner, hate the sin," and calling for non-straight people to change rather than society to change. This is as preposterous a stand as demanding that people with disabilities stop being disabled before being included in society. And, yes, people do make that argument,that people with disabilities aren't being excluded, that it is the disability at fault rather than society, and once we get "cured," we'll be welcome. Such an invitation to fellowship rings hollow whomever you are.

You can't distance yourself from Warren's small minded hatred. You didn't need to have a prayer offered at all, and as a supporter of the separation of church and state, I'd argue that you shouldn't be having one at an official government event. But you obviously want to make some kind of public statement, to present a particular type of image, by having a prayer said for you. And thus, your choice of Rick Warren has indeed made a statement. It is a statement that your support for civil rights for disenfranchised minorities doesn't run any deeper than campaign rhetoric.

Your public distancing of yourself from gay and lesbian supporters isn't the only rejection going on right now, either. In the name of "security," the inaugural welcome of those of us with disabilities has also been rescinded. No chairs at the parade route, insist security officials. What about walkers, canes, wheelchairs? The latest I read is that security is still "thinking" about that. Thinking about it? Thinking about clearly violating the ADA? Sadly, it won't be the first time, since "homeland security" has been allowed to trump civil rights at every turn.

So, I am telling you now, as a person with disabilities, that what you need to do, what you need to make uppermost in your priorities as president, is embrace full civil rights for us all, not just those who already hold positions of power and privilege in our nation. You remember us, right? If you don't, then all your beautiful words about hope and change are meaningless. Full civil rights undergirds everything we in the disability community have been campaigning for. To live in communities, in our own homes, rather than warehoused in nursing homes and institutions. To be employed based on what we can do, rather than idled based on fears of what we can't do. To have mature sexual relationships, to have children or not depending on our own decisions, to have the right to adopt, to marry and form families. These are not "special rights" of only privileged groups. These are among the rights of all Americans.

Help some cat in Japan

2008-12-22T02:25:00.004-06:00

Via Elizabeth, I learned of the Japan Cat Project, a trap/spay/return program to reduce the feral cat population. You'd think the land of Hello! Kitty wouldn't have any unwanted cats, but you'd be wrong. If you find you are short of a gift for a cat-lover, why not make a donation in their name? I'm sure they'd rather have that than whatever it is you were going to pick up at Walgreen's. Face it, you don't even know what you were going to get them at Walgreen's.

No "good death"

2008-12-11T03:04:00.004-06:00

I have been absolutely sickened by the news coming out of Britain. It's just horrible. My daughter and I have started avoiding British news and programming because of the euthanasia drive. I know we shouldn't, that we should actively confront this monster on the global scale, but there is so much bigotry, so little understanding of disability--where to start? How to get it through people's heads? It's a kind of terrorism directed at the disabled, I think. More of us have been openly identifying as disabled who in the past would have denied it and tried to hide it. We've experienced relief in doing so, and found solidarity with our brothers and sisters who are unable to disguise their differences at all. And here the bullying able-bodied world wants to shame everyone again, to clear their days of any interaction with openly disabled people. It will be those with learning disabilities and neurological problems and bad joints pretending that they don't need any accomodations, so they can keep their jobs. It will be those in wheelchairs, in braces, those who are deaf or blind, cloistered behind drawn curtains so no one has to have visual reminder of disability. And those already largely housebound pressured to submit to the ultimate exclusion, euthanasia. And once it is a common place to kill those who require nursing care, the next level of social "burden" will be targeted. None of us are safe in a culture where the answer to weakness is death.

Pro-euthanasia advocates insist that they would never pressure anyone into committing suicide. But they lie. Their language, as William Peace shows, reveals how they routinely devalue and disparage the lives of people with disabilities. Daniel James's parents are excellent examples, saying that their paralyzed son, along with disabled people in general, are "second class citizens." Since when is the solution to a problem of second class citizenship euthanasia? I'll tell you when! The Indian Wars! Oh, those poor Indians, losing their land and culture. Let's kill them off toot-sweet and put them out of our misery. It's a veritable final solution to the issue, one might say as one goose-stepped along.

Euthanasia advocates also purposely muddy the waters, appealing to people's wish to resolve the suffering of loved ones who are truly dying in distress in order to get assisted suicide legalized. Thus British television viewers were given the opportunity to witness a disabled man said to be at the end of his life kill himself at a Swiss clinic while talk still swirls about Daniel James, who was not terminal. Disability does not mean dying, but if the euthanasia advocates get their way, it will soon.

&*$%#!!

2008-12-11T02:01:00.004-06:00

Damn. It's cold. I know, I know. It gets cold every winter. But every winter, I take the dip in temperature as a personal affront. People, it sleeted on me on the way home last night. I had to stand outside in the sleet and hail when I got home, covering the plants as best I could, hoping that they don't all just shrivel up and die. Poor, poor plants. I'm a bad plant mommy.

And, apparently, my cover is completely blown. I blame the norther. Its howling winds and freezing temperatures, combined with Hell Week at work, seem to have left me actually looking as bad as I feel. OK, maybe it was the cervical collar. Or the knee brace. Or me having to take a lie-down on the back office floor because back went out. Or the ashen look on my face ams I fought down nausea and headache most of the evening. Maybe the boss is right and I am falling more often.

If only I could get someone to reduce my left shoulder before my left hand gets anymore numb. But, sad. I'd usually ask my housemate but he's actually sick right now, and I'm completely what passes for healthy in my gene pool. And in many ways, I feel better tonight than I have in several days. I don't know if this is because the front is actually here now instead of coming in, or if I'm feeling some low-grade giddiness antecedant to headache. I guess I'll find out soon enough.

Just another boring week

2008-12-06T22:53:00.004-06:00

I know, I know. You are wondering what I've been doing all week. Well, it's just been so exciting.

Monday: Fell down in front of people at work.

Tuesday: Fell down in front of people at work.

Wednesday: Avoided falling down. Started wheezing.

Thursday: Cedar (mountain juniper) season began in earnest. I took an Allegra at noon. My nose kept running. I took Sudafed. My nose kept running. Except for when it was sneezing. I work with the public, mind you. I called the doctor's office to beg an appointment. How about Monday? Ha! I'd be lucky to last so long. OK, squeeze in for Friday morning? Perfect.

I get home at 9:30 PM, my nose still running. I took Claritin. Yes, I know I'm not supposed to layer antihistimines, but I do, because antihistimines are easy to get but steroids always require a prescription.

Friday: I'm so tired, between the allergies and antihistimines that I can hardly stand. I get to the doctor's. I wasn't trying to go for the death warmed over look, but I suppose the chest rattle makes it convincing. Steroids! Fresh new inhaler and sinus spray, ridiculously expensive but I no longer have to contemplate telling my supervisor that I will be taking sick leave during our most hectic time of the semester.

Saturday: Now it's just the regular pain of my left leg feeling like it is rotting and my hands being stood on by elephants. And the falling in public.

.............................................................

Heroes

C.P.? They have got to be kidding. She was so disabled by C.P. that she could not walk, but she somehow managed to build a scare crow in the corn field and make regular visits to talk to it? That's one unusually accessible corn field. And how's she fitting back into her braces? Last I knew, metal doesn't have particularly elastic qualities. I know, I'm just nitpicking on an issue that most viewers won't catch at all, but still, sheesh.

It does look like Daphne's belief that Arthur Petrelli had given her her powers was just a lie he had told her to control her. Maybe she and her dad are both particularly gullible, and she never had C.P. but rather one of hundreds of other possible mobility conditions that her lazy-ass small town doctor couldn't be bothered to read up on. OK, that's my fanwank, and I'm sticking to it.

Heroes, disabled

2008-11-28T14:41:00.010-06:00

S * P * O * I * L * E * R * S

Hey, I'm going to talk about the show. I will reveal things that happened. If you haven't watched it, but plan to, and just hate having the plot revealed, Go back! Go back! Captain Kirk, go baaaaaaaaaaaaaaack.

Last Warning!

I got caught up on my favorite TV show, Heroes, yesterday. The Eclipse, Part I is something of a study on disabilty attitudes. Everyone lost their powers and suddenly became disabled, merely normal after they had gotten used to being supernormal. Each character reacted differently to their loss, with their reactions in keeping with their personality and values.

To some of the characters, the loss of powers is a relief, even though it brings them great pain. For the super-healer, Clair, the pain is what she cherishes most, since she had lost the ability to feel it. Even though she is shot in a botched kidnapping attempt, and can't immediately heal like she usually would, she is happy that she now has confirmation that she is human after all. Series all-purpose bad guy Sylar is also content with his loss of ability, focussing on his release from the constant hunger and discontent his super-comprehension had put him through. In comparison to what he was, he now has a cognitive disability, and he couldn't be more pleased. And Mohinder, who had mutated himself in the service of mad science, is thrilled to no longer be turning into an insect...at least until the heavies come around and threaten to beat him to a pulp.

Some of the characters are irritated with their loss and resistant to adapting. Nathan Petrelli, at the beginning of the episode, was chiding his younger brother, Peter, who had lost powers to their father earlier in the season, for being resentful over his relatively disabled state. Then he also loses his powers and begins lashing out at Peter for suggesting that they take his inability to fly into account in their travel plans, and his stubborness leads them both to a deadend. Psychic Matt Parkman, who had nearly given up on finding happiness when his superpower first began to manifest, again nearly gives up on finding happiness--this time with the excuse that he can't do anything to win his intended without his ability.

The most pathetic character, though, is the one whose loss of super-speed renders her disabled by TAB standards. Daphne is ridiculous. Tim Kring, why did you pull out the self-pitying disabled person stereotype? All this time, we were led to believe that Daphne was in thrall to the evil Papa Petrelli because of some super terrible feature of her pre-super life. And now we find out that the terrible thing is that she has leg braces and forearm crutches? And to avoid having her powers stripped by Papa Petrelli was willing to betray everyone she loved and act contrary to her own moral code? What kind of a person would rather be someone else's puppet than be unable to walk? This is a completely unbelievable personality flaw, and a libel against people with disabilities. If you had other characters who were traditionally disabled without their powers, then it would be OK to show one of them as being a self-hating cripple. But you don't. You are using one character to stand in for an entire class of people. You may as well kill off the black cast members on a regular basis. Oh, wait. You do that, don't you. Maybe you all need to think a little harder about your positions of privilege?

The one character that I think best reflects the disability reality is Hiro. He refused to allow Parkman to feel sorry for himself, insisting that a real hero wouldn't need special powers but would find a way to save the day. He is confident that everything will be fine, that they must simply have a plan. Yes, right now, he has the mind of a child and is looking to get his own power back. But it is his basic personality that is leading him, and that views regaining both his adult mind and powers as simply a means to an end. And if he can't be a hero with his abilities restored, he will still be a hero. He's already saved Parkman's romance.

(Hiro is actually reminding me a bit of my mom right now. She has messed her leg up but good. Again. Maybe permanently this time. And she is irritated about not being able to do what she usually does, but chalks up her inconvenience to not having what she needs for the circumstances: a wheelchair, someone to walk her dog, handrails. She has a plan. She's going to get those things, and everything will be fine.)

Rudolph, redux

2008-11-20T00:07:00.006-06:00

Way back in December of aught-six, I considered that perennial classic, Rudolph, the Red Nosed Raindeer from a disability standpoint. And now, in November 2008, Ces Marciuliano sends up the cantankerous, small-minded Santa of that stop-motion favorite.

Santa in 4 panels
To Donner: "Hey, if I didn't build Dasher an office ramp after the bus accident I'm sure not gonna put your handicapped son on my team, Donner..."
To unseen elves: "'We are Santa's Elves'...Well, maybe next time, invest in an electric pump before committing musical abortion."
At dinner, talking about the Misfit Toys: "They're misfits!!! I can't deliver misfits! Even blind kids would know they got fucked."
Angry, to unseen Momma Claus: "Do you think I wanted to hit you, Momma?! Do you?!"
Final caption: The not-so-endearing Santa of "Rudolph."

On Beth's meditation: Falling

2008-11-19T00:31:00.003-06:00

Beth uses her seizures and falling as a metaphor for the difficulties that people face, and enjoins her friends to see people's falls (in the sense of adverse circumstances) as an opportunity to be the hero we imagined ourselves as children.

I fall quite often. It comes free with the bad hips, bad knees, bad ankles and bad feet. What I have learned is there is no point to fighting it. When I feel me going down, I bring me down instead of trying to stay upright. People often think I just suddenly decided to sit. Indeed, I did. I decided that suddenly sitting would be better than suddenly slamming into the floor. Gravity is a harsh mistress.

It's peculiar who will stop to help and who will make it a point to not see that any help is needed. Some people are terrified to acknowledge that others are having difficulties, even small ones. To notice the needs of others would force them to have to consider helping. To refuse to help would make them Bad People. But to offer help would undermine their autonomous self-image, since in the act of rendering real assistance, the helper and the person being helped become one in their goal. And some people fear being helped for exactly that reason, that loss of the illusion of independence. I mean, it is an illusion. We are all interdependent, we truly cannot live without each other.

Walking!

2008-11-15T21:27:00.002-06:00

I took a walk today. The wind was blowing hard, much harder than I would usually dare to walk in. But I learned from my TRF experience that I can walk almost as well as I used to if I use two canes, so I decided to try it out. And it worked great! I went almost the equivalent of three city blocks in a wind that would normally have knocked me down. Now I think I will try to do this every day, or nearly every day. Maybe I can develop a bit of muscle tone; that would be refreshingly different.

In other news, if making a recipe, make sure to know what country the recipe came from. Oh, yeah. England. Explains why these cheese biscuits are flat as cookies. They are cookies.

R!M goes to TRF

2008-11-15T15:57:00.005-06:00

Pictures, at last! None of me or my daughter (I'm not photogenic and she is skittish about having her picture taken in the first place). But a renaissance festival is always filled with hams ready to cut it up for the camera. Especially if you hand them a prop.

First off is Lewis, of the Other Brothers Juggling Show, seen here about to take a bite out of Raaaaahr. They are always on our "must-see" list.

And from the other side of the festival grounds, it's Shelby of Sound and Fury. R!M is very impressed with Shelby's facial imitation, perfectly capturing R!M's permanent expression of horror and bewilderment.

Next we have a frightening encounter with the Bilge Pumps, as "Harvey the Corpsman" goes Lewis one better, actually biting into R!M's felty arm. See, there are reasons R!M never changes expressions. When you are a six inch monster, the world is full of danger, including ravenous pirates. Oh, if you are looking for pirate music for your next Talk Like a Pirate Day party, their inaptly named Greatest Hits v. VIII is probably the best buy for your boullion. R!M wants them to sell lots of music, so they can buy food and not be so hungry for monster flesh in the future.

At last, life is looking better for R!M. From Valentine's Academy of Arts and Armour. It's a bloodthirsty show, but not for monster flesh.

Here's one of the lady supporters of the program making bosum buddies with R!M.

Even the violent Hard John Thomas takes a shine to R!M.

By this point, R!M was getting a bit worn from the handling, so took a good long nap in my bag whilst I enjoyed the melodious bagpiping of Tartanic. And some other things about Tartanic.

Nothing about us without us

2008-11-14T00:26:00.009-06:00

Courtesy of Frida, I learn of We Can Do's campaign to get people with disabilities to write the Obama disability policy team to take advantage of this historic opportunity to have our voices heard and have a part in the change to come:

But we cannot afford to allow the moment to end here. Whether we supported Obama, McCain, or another candidate, we all know there is far too much work ahead before we can say, “Yes, we have made real change for people with disabilities.”

It is time for people with disabilities, our loved ones, our neighbors, and colleagues to join together, across ideological divides, to reach out to Obama. We should all send an email to Kareem Dale, Obama’s National Disability Vote Director (at kdale@barackobama.com), WITH COPIES TO Anne Hayes, a volunteer on the Obama Disability Policy Committee (at ahayesku@hotmail.com).

Girl, with legs

2008-11-13T14:51:00.005-06:00

For your viewing pleasure, a lovely cartoon of a young woman with prosthetic legs. And, also, a cat swishing a prosthetic tail. Click on the picture or click right here to go to the artist's site.

Huzzah!

2008-11-12T00:40:00.003-06:00

This past weekend I went to Texas Ren Fest, camping Friday and Saturday nights. I'd show you pictures, but I think Carapace has the camera. OK, so I'll show you pictures later. I know what you are really wondering is, "how'd it go what with walking around the festival?"

Pretty damn good.

I took two canes, a knee brace and, of course, my orthotics. The combination kept me steady and took the weight off my legs and feet that usually has me done in after a couple of hours. I was exhausted and dehydrated and hurting at the end of Saturday, but a night's rest and plenty of water had me feeling much better Sunday.

Funniest line I heard at TRF this time was from a toddler who observed me and then told her daddy with great excitement, "She has two sticks!" Heh, someone is learning to count. I am glad to have been of service. Second funniest line was from a patron, in mock horror, on her way to the exit. "Someone stole all my money!" It's a fact that money seems to disappear unaccountably at ren fairs. Apparently many people were losing all their money this past weekend. I made a point of asking vendors how their sales were, and each one I asked told me the same thing, that this weekend people seemed happier, more willing to part with their money, than the week before. Almost like some major event had happened that left consumers feeling a bit more confident. I don't know about other business people, but the TRF vendors seem quite pleased with Obama right now.

I didn't buy a whole lot, being mostly kitted out already, but I did get a nice rucksack with a dragon design while I was there, relieving me of having to manage a shoulder-carried bag while using canes. And I got a few odds and ends. There was some beautiful artwork for sale that I would love to have if I had the room. But I don't. Anybody wants a bronze water fountain in the shape of a dragon or a green man, I know just the guy.

Other good things that made the weekend pleasant:

new Coleman propane stove with instant lighting. It was nearly as easy as using the kitchen stove.

new tent with 7' height and enough space for two twin air mattresses. Sadly, one air mattress wasn't worth the attempt to inflate it, but the good one left Carapace sleeping comfortably, as did her tall-sized sleeping bag.

my adjustable portable table! It's not just good for sewing; it also fits nicely into the back of my car and is light enough that even I don't struggle with it.

taking Monday off for recovery. I had a whole day to put things away, wash clothes, and sleep after I got back. And so I went back to work Tuesday happy and feeling good.

Next year:

Don't bring lounger. It never got used.

Remember jacket. Sure, I can just wear all my garb, but it would still have been nice if I remembered to bring a jacket.

inflammation advantage

2008-11-06T13:10:00.001-06:00

On the bright side, I'm the only person in the office today not freezing.

Disability denial

2008-11-05T01:35:00.003-06:00

Drake, at Cloud Viper, talks about the trouble he has accepting that the body he has always known is a body with disability. One Sick Mother makes a really valid point (in the comments) about you not having had time to adjust after so many years of being encouraged to be in denial. Now you don't need to be in denial anymore; you can take care of yourself and learn to live in the body you have instead of the body that nondisabled people expect you to have. But all those years of denial are going to be a while in the getting rid of.

And even then, there will be times that you think to yourself, "Oh, I'm just a whiner. I'm not really disabled." I do the same thing myself. And then I get out of bed, like I did yesterday, putting my foot down to stand up, and I scream. And all day, people ask me what I did to cause my foot injury. And they look at me as if it isn't the most everyday thing in the world to injure yourself by standing up. And today? Foot is pretty much back where it is supposed to be.

Now, why, when you and I and OSM are so regulary reminded by our own bodies of just how unreliable they are, do we ever have a problem accepting that we are disabled? What difference does a diagnosis make? Nothing at all has changed in the way your body works since you got diagnosed. If a new doctor disputes the diagnosis, again, nothing changes. What's going on that we, and others around us, are resistant to the bleeding obvious?

I think there are at least a couple of factors. A very important one has to do with that damnable stick figure sitting on a half circle. Yes, that faceless, degendered symbol of disability the world over. Ever notice how s/he is always in the same condition, day after day, year after year? S/he never shows up for work with a foot working that didn't work yesterday, or eyes not working that worked only last week. And everyone knows immediately on looking that Handy Stickperson is Special. And, also, Handicapable. Good old Handy is completely healthy, just missing a part or two, or maybe with a nice injury that can be conveniently covered up under clothing. Handy plays wheelchair rugby or runs track. Handy does not need to spend weekends in bed, shaking from pain and in pain from the shaking.

You and me, buddy? We just need to snap out of it. Get with the program. See a shrink for Munchausens. Get right with God. Take a supplement. Stop being weak. But we aren't disabled, right? Because everyone's seen disability. And it is painted blue and uses a ramp and doesn't have people challenging its right to park in the disability spot. After all, those spots have the portrait of their owner, and we don't look like that.

People are always so helpful, screaming at us that there was nothing wrong with us other than being lazy, or stupid, or whatever the adjective of the day was. See how not-disabled we are when so many fine folks have taken it on themselves to call us fakers and complainers? And we agreed, didn't we? We accepted that we must be normal, since that seemed to be the most prevalent opinion. And then some doctor comes along and tells us that our normal isn't. So, who you gonna believe? Some doctor, or your third grade physical ed teacher?

President-elect Obama!

2008-11-05T00:07:00.004-06:00

I am so happy. At last, I can once again hear a politcal speech without screaming. It's like Obama has reset the bar for public speaking. McCain's concession speech was good and unifying. And Obama's victory speech was fantastic!

And he gave us a shout out! In our language! In his speech importuning Americans to continue to work together to turn this nation around, he specifically mentioned those of us with disabilities:

It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states.

Now, that may be a small thing, but when was the last time we were called to serve? Or included as part of the key to victory? When was the last time we were seen as part of the solution instead of a problem to solve?

Good start, Obama. Good start.

New Doctor visit

2008-10-29T10:18:00.003-05:00

When I moved in March, I kept right on seeing my old doctor, despite him now being 15 miles in the wrong direction. But now he's closing his practice in the area, and I figure if I am going to get used to someone new, it should be someone I don't have to schedule an extra hour of travel time to see.

The new doc is a friend of the old one, so I am hoping he will have some person skills in common, since I like the old one. The new patient visit was yesterday. Summary:

Office is cramped. I don't know how they get people in wheelchairs or scooters to the back. Maybe they move furniture. The scale is inconveniently right in front of the doorway to the hall. Speaking of which, I've lost 10 pounds since this summer. I've also lost .75 of an inch since the last time I was measured, way back in my twenties.

Dr. M. is nice. He listened to me describe my current condition and past things that I thought he should know about that weren't asked on the new patient form. He said that the scar on my nose from the basal cell surgery was well done and acted like he could hardly see it, which either means he is extremely polite or in need of glasses.

He also prescribed blood pressure medication for me upon the one reading, and directed me to buy a blood pressure cuff. It seems a bit much to me to prescribe blood pressure medication off a reading at a new patient visit, but maybe there is something else he noticed or something in his notes from my previous doctor. We'll see. He will find I am a reluctant meds user, so he'd better keep the number of prescriptions low. Already, I misplaced the bottle and had to go on a safari to find it, and I hadn't even taken any yet.

I told him that my cholesterol was high the last time it was measured, but that I didn't want statins because of the associated muscle weakness, and that I couldn't afford any more muscle weakness than what I have. He promptly tested my muscle strength, which revealed itself to pretty much not exist. Ah, the old "squeeze my fingers" trick. Try to break them off, he said. Bwa-ha-ha! Hey, I'm just happy that I can complete a grip. Then he tested my arms and legs, with similarly sad results. Unless he can pull a magic potion out of his bag that will instruct my muscles to actually build, there is not going to be any useful change. (I can see it in his eyes, the question forming for next time. Would physical therapy help? No. No, it won't. But it will be exhausting and painful. Thank you.)

And he renewed my pain pill script, which is good, because we are coming to the time at work where we are standing most of the day. Except when we are bending.

And he wants me to keep a migraine diary, because he thinks maybe I should be taking a preventative. Oh, this will be hard, remembering to keep it. And knowing what to say.

OK, so I begin with that today. Woke up. Left side of head, behind and to the side of eye, hurts. Treatment: Ignore it. Breakfast: cup of coffee with cream, gluten-free waffle with butter. Head still hurts.

Oh, one more thing. I bought that blood pressure cuff right after the visit, since I needed to go to the pharmacy anyways. Checked blood pressure last night at the close of work. Also checked my vegetarian boss's. We have the same blood pressure.

A new book to find and read

2008-10-25T16:42:00.004-05:00

Well, begin reading, anyway. All around me are books that I have begun, yet not finished. Is it my fault I forget where I have put them and then have to start over?

At any rate, author Gary Presley has asked me to spread the word, so I am doing so. From his email request:

Seven Wheelchairs: A Life beyond Polio was recently released by The University of Iowa Press.

The memoir is a history -- an American tale -- of my fifty year wheelchair journey after being struck by both bulbar and lumbar poliomyelitis after a vaccine accident in 1959. The Press says Seven Wheelchairs gives "readers the unromantic truth about life in a wheelchair, he escapes stereotypes about people with disabilities and moves toward a place where every individual is irreplaceable."

Other reviewers have called Seven Wheelchairs "sardonic and blunt," "a compelling account," and "powerful and poetic."

I hope you can mention Seven Wheelchairs on your blog. We all live different disability stories, I know, but perhaps if you find the memoir worthwhile, you might want to recommend the book to others who are curious about what polio or disability in general.

Of course, the book is also available through Amazon and Barnes & Noble.

--
Gary Presley www.garypresley.com
SEVEN WHEELCHAIRS: A Life beyond Polio
Fall 2008 University of Iowa Press

Looks intriguing. Carapace, want to get me another book to attempt to finish?

Everyone else, got any ideas for helping me get all the way through something before misplacing it and starting something else? I've read more halves of books than anyone I know.

Assistance requested

2008-10-25T14:16:00.003-05:00

I need help! I've begun a filk, but only have the chorus and one verse down. Now, to the tune of the Eagles' "You Can't Hide Your Lying Eyes," please join me in writing

You Can't Drive with Migraine Eyes

(chorus)
You can’t drive with migraine eyes
Because the lights
Are way too bright
Thought by now
You’d realize
There ain’t no way to drive with migraine eyes

(1st verse)
Silly you forgot to bring your Zomig
Had to make do with coffee and Naproxen
Another drive
It’s going to be a long one
You squint at the road while your head begins to scream

Please add to the desecration of this classic rock ballad by contributing in the comments.

Better living through cheap accessories

2008-10-20T03:11:00.004-05:00

I bought a $25 folding table with adjustable legs a few weeks ago, thinking I would use it as Thanksgiving loomed. Then I thought, oh, why not use it now? Why not use it to do some sewing since it will be several more weeks to months before I actually get the designated sewing room cleaned up enough to do any sewing there.

And so I used it Sunday, and it was great. With the legs as short as they will go, the table is perfect to sit at while in my favorite comfy chair, and gives me lot of space for what I'm working on. And it's very sturdy. I wish I had got a table like this before. But I have one now! And that's what matters. Yay! Mending got done! Real projects now stand a chance of being completed! Excitement!

And I really like sewing in the front room. So I might just keep doing that, and just organize the spare room for optimal storage. That would be a good thing, too.

Not accessible

2008-10-18T21:36:00.003-05:00

What, you are asking yourself, is that picture? Why, that's the door to the "accessible" women's restroom at the Travis County Expo Center. The other restroom, in the other building we went to, had a large garbage can holding the door open, making it impossible for anyone in a wheelchair to get by. This one, as you can tell, is impossible to open if you use a wheelchair. And once in, while the wheelchair user stall was large enough, the door swung inward, making it difficult to impossible for someone in a manual wheelchair to shut or open the door on her own. But I guess they figured that no one in a manual wheelchair would be there without an assistant, seeing as how every single entry door had a threshold so steep that it required both being pulled in backwards while a third person held the door to get in or out. And then there were the vendor booths and exhibit sites, in the stock barn, placed so that there was a drop off the pavement into sand at each one.

There is a reason why the Texas Civil Rights Project is suing the Expo Center for failure to be accessible despite their recent multimillion dollar face lift. Go get 'em, tigers!

(While the site itself has led Carapace and me to decide we will never again go to an event held there, the Expo staff themselves are decent people working in an impossible place. Thanks, especially to Isaiah. We couldn't have even got away from the car if it wasn't for him going out of his way to fix Carapace's chair.)

Minor league griping

2008-10-12T21:21:00.005-05:00

This past week has been rather uneventful, other than the usual slings and arrows. Which have annoyed me more than they normally do, merely because I had been having a good run of it over the summer. While I enjoyed having several weeks without daily pain, it has a negative in that, with the return of the distinct feeling that my joints are shredding and liquifying, I am irritated unreasonably. It isn't like I didn't know that my respite was temporary, and I know it seems petty to be grumpy over having the daily pain again when so many never get a break from it ever.

Still.... Poop. I would like to be able to go to TRF without my knees and hips driving me to the point of tears. How to manage it? My ideas from the summer seem so paltry now. Will two walking sticks work? When I tried it out Saturday, when my kneecaps were trying very hard to take up residence on the backside of my legs, it seemed futile. Should I get a new rollator? I hate taking a rollator to TRF, but what else can I do to take the weight off my legs? Scooter? Hated that, too, at TRF. Things that work well on pavement don't work so well on hard-packed, sometimes muddy, dirt. And then there is getting about in the shops to consider. You think your local mall is inaccessible? Look upon the ren fest and note how the lack of shop accessibility is the one area in which there seems to be no anachronism. And my very favorite show is always at the least accessible stage. What do people have against ramps? Grumble, grumble.

It's still not enough for me to not go. Or to not camp. I am looking forward to it. But I also want to have the best experience possible, so if anyone else has ideas, please pass them on.

Oh, also. You know what I hate that isn't usually painful? Waking up to the sudden sound of a joint going "pah!" And those few moments when I wonder, "OK, so can I still move?" It's especially unnerving when the joint in question is a couple of vertebrae. Anyone else have this, or is it just me?

OK, I'm done with my whining. Anyone else want to grump about relatively minor things? The comments are open. Oh, don't tell me how good I've got it or offer (yecch) sympathy. Whine, dammit! Whine! Or tell me your hints for ambulating at Big Events.

About me....

2008-10-04T19:29:00.007-05:00

I left a comment over at Do not read this blog, and Blane asked me a question:

yanub, you seem to have developed a very balanced and healthy perspective on these things. I don't know anything about you--but is there anything you'd be willing to share about your life or background that would illuminate us regarding your outlook? I agreed with your comment about comfort, but still, don't you ever have just a small bit of sadness when you think about your consciousness ceasing to exist?

Do I have any sadness over my consciousness ceasing to exist? No, not really. I regret that, when I do die, there will be people who will be sad because I won't be around. At the same time, it would be even sadder if no one missed me. I fret more at the prospective loss of those I love than over my own prospective death, and want to stay alive because I know others feel the same way about me.

I've lived through a long period of depression, which is behind me now. What got me through my own lack of desire for life was knowing that I was loved, even if I couldn't fully feel it, knowing that my death would affect others and hurt them. And I've never wanted anyone to hurt because of me. But when I am dead? I will be as aware as I was before I ever came into existence. I figure, if I don't mind the previous non-existence, I have nothing to fear from that non-existence to come, either. I really only regret my decades of depression. I wish I could have somehow stopped that sooner, because that is a sort of existence without existence. But a disease must run its course, and there is no fault in being sick. And no turning back time, either.

So, now I am well into middle age, with a body that creaks and gives out like I am well into old age. And while I feel free to grumble when I hurt or have to bypass doing something I would have liked to do because I can't get cooperation from all the important bits and pieces, I also don't really care. I don't care if people stare when I limp. I don't care if they think bad thoughts when I use a handicapped spot and seem to walk pretty good at the moment. I don't care if they keep asking what happened to my neck. Or if they ask about my finger splints. I have no problem saying "no" if asked to do things that I simply can't do. I have nothing to prove, no one to impress, and wouldn't try to prove anything or impress anyone if I did.

I owe a great deal of how I feel about things now to Carapace, who talked me through my depression and my outrageous anxiety attacks, and who still impresses me with her (un)natural good humor. Oh, yeah, she's my daughter, but I've always admired her as a person. Wearing her reverse headgear to fifth grade with such confidence and hope for improvement that all teasing bounced off her and shriveled away. Her indignation over the school's treatment of a mentally ill classmate while brushing aside her own treatment by the school while she was using a wheelchair. Her intense excitement over her crafting and art despite the high cost she bears with the associated migraines and seizures during a creative burst.

And then there's Elizabeth, about whom I've recently posted. How can I help but want to be a better friend and neighbor when Elizabeth is such a great one across so many miles? Or my friend Sheila, who is always concerned about my welfare even when she is most despondent? Or my religious parents, who were once disfellowshipped for actually caring about people instead of just trying to "save" them? Or my atheist boss who everyday exemplifies gratitude and the sort of humility that comes from really believing in equality? My grandmother who traded pies for tamales, who insisted on being known by her first name by her neighbors because she was her own person, not her husband's. My grandpa, who completely agreed. I could go on and on. But the point is, all these people have had and continue to have an enormous affect on me. When I lose one of them to death, they will still be alive--in me. And if I go first, I will be alive in them. We are all shaping lives yet to come, people who will never know our names. Our personalities and goals, our hopes and dreams, everything that is essentially what we think of as our consciousness, we get that from other people, from people who are around us now, and from the people in the past who passed on their hopes and dreams. When I die, then, my awareness of consciousness will stop, but what is essential about it--that belongs to the living, and always will for as long as it is worth passing on.

I was raised Christian, and taught to expect, at anytime, the end of the world and a final judgment that would leave the majority of people ever born in eternal torment. Compared to such a horrible thing, death, plain and simple, is a small thing, and the ability to participate in making the present and maybe the future more pleasant for everyone is a large and wonderful thing.

Blane, I hope all that sort of addresses your curiosity.

Hooray for the open road!

2008-10-04T01:15:00.003-05:00

I was able to park in my own driveway tonight, much to my relief. And we got an unexpected benefit from the road work. The speed bumps are now wider, which means that getting to my place at the end of the street, past 3 speed bumps will no longer be so jolting to my spine. Or injurious to my car's suspension. So, that's good.

Still, here's hoping it will be at least a year before they resurface my neighborhood's streets again.

In other news, the ankle is getting better. It stayed in place most of today. If I baby it this weekend, maybe it will forget its wild ways and stay where it is loved and appreciated come Monday. As an incentive to good behavior, I ordered new orthotics since the old ones have lost most of their spring.

It figures

2008-10-01T21:36:00.005-05:00

So, today they closed down my street to do road work. Meaning that I can't park near my place. And, of course, this morning, my left ankle went out on me. The ankle has since been joined by a metatarsal. Now, this may not sound like much to you, but if it doesn't, it's only because you aren't the one trying to walk with a foot that feels like a large shard of glass has taken up residence in it. Parking on the next street over is hellish. I am not happy about having to cross through dark yards from the next street over to get to my street. No consideration for accessibility was made at all. This doesn't have to be done this way. Half a street at a time could be done. The way it is being done is just stupid.

Confidence

2008-09-26T23:13:00.003-05:00

My neck was squeaking like mice in an old sofa. And it had been doing this since I had awoken in the morning, with no sign that it was going to simply click into place like I had been hoping. So, out came the cervical collar. I slapped it on over my hair, little caring how it looked. I could fix my hair later. Besides, it isn't like no one isn't going to notice it no matter what. Eventually, people get used to seeing me with bits of gear, depending on the trouble of the day.

A lovely young woman came in to the office a moment later, asking for her paperwork. But she didn't have her official identification. She'd been in before, and we'd let it slide once but couldn't again. She really didn't want to have a picture made, not like she is right now. "How much longer with the eye patch?" "At least two more months. Do I really need to get it made now?"

I was trying to think if I dared assume the authority to grant another extension. "Oh," she asked, "are you alright? What happened?" "Huh? Oh, yeah. Nothing happened. Sometimes I have to wear this. It's how I am. It's OK. ....Your ID, you know, you really need it."

She smiled. "It's fine. I'll get it."

Support EFM!

2008-09-23T23:53:00.005-05:00

Why should you help Elizabeth McClung? If you follow her blog, you know that she is a good friend, a generous person, and way, way too self-deprecating to have accepted help before now. Her wife Linda can tell you what they need help with specifically. Linda has finally gotten a Paypal button working at her brand new blog, A Girl's Gotta Fly, because so many of us have begged to be able to help.

Let me tell you how Elizabeth came into my life. She's the one who took the initiative, browsing blogs during a night of insomnia. She found mine, and posted a comment about pain and dislocation. I'm a chronic insomniac so I responded right off, and then went to look at her blog. And I posted. And she responded! She responds to everyone! She's great that way! To Elizabeth, everyone is important, and everyday is a day to be grabbed and lived. And she is astonishingly honest about the reality of life with a rapidly progressive disability.

I said she was generous, didn't I? There's no need to take my word for it. When she and Linda went to Japan, they took all Beth's readers along, too. Tell me, if your health was steadily deteriorating and you had the chance to go on the vacation of a life time while you still had life, would you bring along a motley assortment of people you've never seen? But Beth did, posting wonderful photographs and in-depth coverage of her Big Adventure every single day, no matter how badly she was feeling at the end of a day of sightseeing. While there, she made a point of buying postcards to send to all of us who had asked for one, and she mailed them off steadily while she was still there! And since then, she has continued the fabulous Postcard Project. If you haven't gotten a personalized postcard from Elizabeth, it's only because it's either in the mail right now or you haven't asked.

Probably, if you are reading this, you are already a friend of Elizabeth, and I am telling you nothing new. But I wanted to post about her again anyway, and the advent of the Paypal donation button seems like as good an excuse as any.

Blue Tag

2008-09-18T00:40:00.003-05:00

For months, Carapace and I told ourselves we'd be sure to bring the camera to take a picture of this parking space sign. Today, at last, we did. Underneath the traditional blue handicapped parking sign is another sign, in red and white: "If you don't have a handicapped sign, and if you are planning to park in this space, the owners of this property will place on your bumper the following sticker: I (heart) parking in handicapped spaces and I don't care."

I suppose it would be better if the owners would simply call the police to have the vehicle ticketed, but maybe some people are motivated more by the threat of a public shaming than by a fine. In any case, I've never seen the two spots with these signs being abused by non-placard holders.

Obama!

2008-09-11T15:19:00.005-05:00

In case anyone is waiting to decide who to vote for until I officially announce my support:

Obama!

Check out Obama's disability issues platform!

And if you are in Texas, vote for Noriega for Senator. We can do without Big Bad John, who has chiefly contributed to the state image through his hilarious comedy video and concerns for box turtles.

How wheat causes dislocations

2008-09-09T00:33:00.005-05:00

It began innocently enough. I saw the fried catfish on the menu and, hopeful, asked the waitress how it was prepared. "Oh," she gushed, "it's coated in corn meal. "Just cornmeal? I wanted to make sure. "Yep. I've worked here nine years, I know all about how everything is cooked."

By midnight, I knew wasn't as familiar with the kitchen as she thought she was. The evidence? The sores that were developing in my mouth. Sores that make their painful appearance when I've been eating something with wheat in it. Damn. Damn damn. I took a benedryl, washed my mouth out with antiseptic mouthwash and went to bed.

When I woke up, I instantly wished to stay home. Some mule driver had come into my room during the night and had their jackass kick me square in the face. I felt horrible. The sores were hot little wounds. And my sinuses were swollen--another effect of the wheat, combined with the ragweed in the air. I ate some plain yogurt, making sure to get it all over my gums. I took another benedryl. I sat down in despair. Damn that mule. I should take something for the pain. Naproxen? Who was I kidding? I already had sores in my mouth and probably my entire gut. Maybe Darvocet would help.

I went to work, hoping the Darvocet would kick in. Or the benedryl. Or that my face would explode and kill me. Really, any change would have been welcome. After a couple of hours, the sinus swelling from the allergies started to go down, though the pain was still relentlessly hanging on. Another couple of dispiriting hours went by. Suddenly---Pop! My jaw went into place and the pain began to dissipate.

Wow, my mouth sores had been annoying me so much I hadn't even noticed that I had dislocated my jaw. Too bad, because I could have fixed that right off. So that's why I felt like I had been kicked in the face. I must have been grinding my teeth in discomfort during the night. I'll try to avoid a repeat of this experience, and take the pain killer before going to bed tonight. Because those mouth sores? Still there. I'm sticking with the grilled catfish from now on.

Another recipe

2008-08-31T18:54:00.003-05:00

On a high fat diet because you've cut all the carbs out and have to have something to burn? Or simply want to make a nice treat but you don't have the energy/skill/accessible kitchen to do anything interesting? How about making a cream soda?

Cream Soda

sparkling/seltzer water
flavored syrup (sugar free if you are avoiding carbs)
whipping cream
ice

There are no particular amounts to use, because measuring takes the surprise out of life. Experiment with what seems good to you.

Pour syrup (this is the sort of syrup used for coffee drinks) and cream into a glass filled with ice. Pour sparkling water over it. Mix with an ice tea spoon.

Be careful! As with ice cream floats, this treat can rise well above the edge of the glass, so you can't see where the liquid starts and the foam begins. Taste your drink and decide if you need more of anything.

Heh.

2008-08-30T19:09:00.001-05:00

Darn liberal elitists.

Texas Sunshower

2008-08-28T00:29:00.005-05:00

White light streams through shining clouds onto pastures below.

(Yes, I took this picture! It's mine, all mine! If you want to use it, be courteous and link back here. )

Recipes sweep the disability web!

2008-08-26T22:49:00.007-05:00

As often is the case, Dave started it. Then Frida jumped in. And since my non-broccoli eating housemate asked me to buy broccoli again, I suppose I should add my secret recipe for getting crucifers into vegetable haters. And it is gluten-free!

two heads of broccoli
onion to taste (dried or fresh chopped)
water to cover
one can of broth
one stick of butter
1-2 cup/s shredded cheese
2 medium eggs
1-3 cups liquid (water/milk/cream/broth)
black pepper
salt

There's a right way to do this, and the way that I do it. I'll tell you my way.

Wash the broccoli and break it up. It doesn't need to be chopped, because you are going to cook it down until it breaks apart. Put the broccoli and the onion into a large enough sauce pan, cover with water, and set to boil. Pay attention or you will burn the broccoli, and that is something you definitely don't want to do. Add more water if needed. You will boil until so soft you can break it apart with a spoon. (Checking to see what I left out, and it's this: Break up the broccoli!) Turn the heat down to a low simmer.

Add the broth and the stick of butter. When the butter has melted, add the cheese (I use Muenster, because that's what's been cheap around here). Stir.

While the cheese is melting into the broccoli, break two eggs into one cup of the remaining liquid. Whisk it really well. Now turn off the heat from the pan, and slowly pour the egg solution into the soup, stirring vigorously the whole time. Stir, stir, stir. If you don't stir with spirit, your eggs will end up scrambling instead of thickening. Also, now is when you are breaking your broccoli into tiny bits. Stir, stir, stir!

Now, add the rest of the liquid, as much or as little as you please. Taste. Add salt and pepper as needed. Taste again. Get bowl for yourself. Eat it. Then dish yourself some more and give the rest to everyone else.

***************

OK, who's next? If you also publish a recipe, tell me in my comments.

I hate allergies

2008-08-23T12:31:00.003-05:00

"Atopy" comes from an ancient Greek term meaning "out of place." How appropriate.

Yesterday, I got nothing done. And it's all because of allergies. I hate allergies. Of all the things that my body does to make my life more, er, interesting, allergies are the worst. I started having slight asthma symptoms at the beginning of the week, but since I was having a fairly laidback week it wasn't anything I couldn't ignore. And then yesterday, the mucous membranes got into the act. In a bid to stop the constant flow and sneezing, I was taking antihistimines every two hours. Everything I took was supposed to work a minimum of four hours, and some for twelve. But faced with my immune system's insistence on working overtime, Claritin, Drixoral, Zyrtec, and Benedryl merely tuck tail and run. So, in exchange for minimal relief from the incapacitating symptoms, I got the side effects of lethargy and heaviness and mind-racing panic from the antihistimines. It's always a toss-up as to which is worse.

I had decided I'd go to the clinic today for steroids if I wasn't better, but fortunately the big storm we had seems to have given me a reprieve. I'm grateful, because I could see I was headed fast to a full-fledged general atopic collapse.

Vacation success!

2008-08-17T01:30:00.004-05:00

We're back, poorer in pocket but richer in memory and know-how! I appreciated the good wishes sent me prior to taking off for vacation, and especially appreciate Elizabeth's ideas about making things safe as well as fun. I did take that to heart and found us a beach with lifeguards and lots of other people around, in case of trouble.

Also, we ended up not camping. The more I thought about it, the less I wanted to expose Carapace to even one day of unremitting sun, seeing as she is photosensitive. As luck would have it, I stumbled across a funky beach cottage establishment that still had an efficiency for rent at astonishingly affordable rates. So we stayed there both nights, enabling us to go to the actual beach twice on Thursday, and then swim in a pool after the sun set. It was really quite an old cottage, but all the same it was almost accessible. If they would just ramp the entrances (which all had high anti-flooding thresholds) anyone could get in. The door to the bathroom was already plenty wide. A sliding bench and some hand rails would have made the shower and toilet available to anyone. But I can tell from the rates they were charging that there are no major renovations planned for these 80 year old cottages any time soon. I'm frankly astounded that the upkeep is as good as it is in such old cottages. I'd stay there again, but if I needed a wheelchair....well, that poses a whole set of problems for a community built on sand.

Here's what I did that made our vacation about as safe as it could get for us:

life jackets--Carapace didn't want to wear one, but I did, and it helped me a lot. Last time I went to the coast, the waves battered me pretty badly and I was so exhausted that I couldn't enjoy it. This time, the life jacket did the work for me so that I didn't have to try to fight to both keep my head up and keep my limbs from being jerked out of place by the waves.
Dark goggles--they kept both the bright light reflecting off the waves as well as the waves themselves from stinging our eyes. I have a particularly badly shaped forehead for keeping liquids out of my eyes, so not having to deal with that nuisance was great. My goggles, unfortunately, did tend to create a vacuum around my eyes that I had to keep breaking to keep being able to see. But it was a fair trade off. Just, next time, I will try on the goggles before buying them.
Rash suits--I wore both a sleeved top and long pants, and C wore a sleeved top over her swim suit. This kept us from burning, and also offered some protection in case of jelly fish. Weirdly, we saw no jellies or portuguese man-o-war the entire time, but experience has taught us that there is no swifter end to a beach vacation, so it was good to be prepared.
Morning and evening at the beach, afternoon in the air conditioning. Avoiding the hottest, sunniest part of the day also was a big factor in keeping us from becoming toast.
Cheap canes--this was the result of an unexpected find at the island grocery store. They had wooden canes for $1 each. We each got one, and so were able to do some beach combing without worrying about messing up our good canes.
Cervical collars have more than one use! This was also an unexpected "find." I use a cervical collar because my neck tends to go out of place on an annoyingly frequent basis. But I didn't need to use it at night during vacation. At least, I didn't need to use it on my neck. Instead, I wrapped it just above my left knee to keep my leg bent like I need it at night, instead of using the towels I had brought. It worked much better, since it didn't fall off when I moved or need to be readjusted. Now I know that when I replace this cervical collar, I can continue to get use out of it.
Not overdoing it--this was maybe the most important thing. We made sure to get plenty of rest and never spent more than an hour doing any particular activity. Sure, there was a lot more we could have done if we had been go-go-go the whole time. But this vacation was about relaxing, enjoying different surroundings without demands, and being ready to go back home where work and chores await feeling refreshed mentally.
Coming home with enough time to recuperate--who doesn't need a vacation from vacation? We went during the week so that I could have the weekend to do laundry, buy groceries, and rest my weary bones. And rest I have.

I also put to test something else I had been considering, that anyone who hates re-packing might do. I bought a couple of disposable roasting pans, a disposable grill top (such as is supposed to be used on a regular grill), and instant-light charcoal. I punched some holes in one of the pans, and bent both pans so that the inner hole-y one was up a little higher than the outer one. I put in the charcoal, bent the grill around the pans, and lit the coals. Soon, I had our hotdogs ready to eat. All I had to do after that was pour water on the pans and throw them away. Nothing dirty to pack back up! Yay! If I was at a park instead of the beach, I would want to put the pans on a couple of bricks or something, because they get very hot. But for the beach, this was perfect.

Oh, and I made sun tea by using the car windshield and the foil-covered window sunvisor as a lazy woman's solar cooker. I put water and 8 tea bags in a large sports bottle full of water, and set the bottle between the windshield and the sunvisor. It made for a strong tea ready to be diluted in my half-gallon pitcher, in just 90 minutes.

Another important thing I learned is that I can really book with two canes. Next big adventure will be TRF, and I will have two hiking sticks with straps on me, even if they aren't period authentic for Tudor England. Maybe this time I will be able to avoid the pure agony that comes from dragging one leg around all day.

Okay, okay. I know, this is educational and all, but did I have fun? Yes! I had some very nice food at Moby Dick's and Virginia's on the Bay, where each place went out of their way to make sure C's and my diet were accomodated. We successfully beachcombed! We played in the ocean, bobbing over the waves. A big pelican flew right over my head, close enough to make out the breast feathers even with my goggles on! And a school of fish moved in on us, very nearly slapping C upside the head as they lept out of the water. One of them swam right under my foot as I moved to stand in the chest deep waves. It's a strange feeling to stand on a fish! We had a long and fun conversation with the evening barista at Sips. We fed the seagulls at the park.

Was there anything bad? Well, I did have a terrible cramp in my right calf that still hurts two days later, and that tried real hard to cramp up my thigh, too. But that could have happened at home just as easily. And my neck went pretty badly out of place on the drive home. But again, that sort of thing happens all the time, so it's no reason to not have a vacation. Besides, that's why I carry a cervical collar everywhere, so it isn't like I wasn't prepared. And C ended the trip with a migraine. But again, that was likely to happen anyway. Because we both anticipated having our usual gamut of problems, we were able to have a good time while also taking care of ourselves.

Not NICE

2008-08-15T23:19:00.005-05:00

I just returned from my very lovely vacation, and am catching up on my favorite blogs. And what do I find at Junkfood Science, but a review of Social Value Judgements, a report put out by Great Britain's National Institute for Health and Clinical Excellence for the purpose of shaping its National Health Service's policies and budgeting. Sandy Szwarc rightly declares this document dangerous:

The entire world should care about what this disturbing document forewarns. It is the most palpable document in recent history to bring the same bioethical dilemmas, on the moral claim of personhood and quality of life versus the interests of the state, that were raised in the 1920s.

Szwarc ends with a warning that this devaluing of individual personal judgment regarding one's quality of life is

the inevitable outgrowth of what happens, as history has taught, when health becomes public. When health is a measure of good citizenship. This is the foreseeable results when government foots the bill for healthcare: the state then assumes power to decide what happens to an individual’s body and to determine when a life is of insufficient quality or too costly to society to preserve.

I think that blaming government-run health systems is too limited a view. As we've seen in the US with insurance companies, the corporate board can be just as coldly utilitarian as any government bureaucracy, and will just as readily adopt bioethical reasoning in pursuit of limiting expenditures. The real caution is for us all, no matter what system is in place in our particular nations, to value human life so much that we refuse to allow the machinery of governments and corporations to treat any of us as no more than replacable cogs.

Words Hit Like a Fist bmp

2008-08-11T22:42:00.004-05:00

I took the liberty of turning Active Gray Matter's pdf of Dave Hinsburger's Words Hit Like a Fist card into BMPs, for anyone who wants to embed them in their own blog. Sue at Active Gray Matter has also arranged to give away 10,000 of these cards to activists and advocates! So what are you waiting for? Go there now and ask for your cards!