Archive for January, 2008

Why I’m not going to physical therapy

Shouldn’t I be going? Should I be down on myself for not going? There it is, the truth, I haven’t been going, and I’m not going.

Why?

Here it is: get dressed, for a specific time, get loaded into the car with wheelchair, go out in the cold, drive 20 minutes, park, pay to park, haul wheelchair out of car, haul ass exhaustingly across hospital campus likely in the RAIN for quite a long distance, wait in waiting room. Feel that horrible hospital feeling. Do physical therapy. Ow, ow, ow. Haul now-exhausted ass back through hospital and campus and scary parking garage full of SUVs driven by aggro yuppies not looking for people as short as me in a chair. Drive home. Haul self and wheelchair out of car. Collapse.

OR…

Do all that but add in taking off all my clothes in a cold dressing room and taking a shower and then being cold and wet and hauling my ass into a pool. Walk around in the warm pool and do leg lifts. Haul exhausted ass out of pool, be freezing cold, get dressed again while crying in pain. Drive home, collapse.

OR…

Stay home in warm pajamas. Do normal housework which incorporates most of the movements they’d make me do in physical therapy anyway. Do some half-assed bicycling on stationary bike.

Which would YOU do?

So that’s why I’m not “doing physical therapy”.

I will now call some massage places to find a FEMALE massage person who will come to my house and do range of motion exercises and massage.

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Magically better: not

When earlier this month I got undiagnosed there was a wave of shock and relief. And then my brain did something like a rewrite of my projected narrative, like “And then I will just work hard and get magically better so fast everyone’s head will spin.” It cheered me up!

That hasn’t happened, and I’m starting to hit a wall where I realize I’m still in pain, and I’m not getting magically better. Going off the baclofen and Lyrica did not free me up to suddenly dance in the streets. I’m walking more, especially around the house, and can do housework with more competence. I can wheel myself about as far as I could last fall. That’s it.

I missed my appointment with the neurologist in part because of scheduling problems but in part because I just Couldn’t Deal With It. It was a relief not to think about things too much in the last few weeks.

Now what? I’m not sure.

I’m so glad I didn’t get any more injections … I’m feeling very skeptical of the trigger point and botox injection routes. The botox thing especially might not be so benign and temporary as it has been presented to me. After the injections into my spine last May, which was very horrible and painful and with lasting painful aftereffects, skepticism is my friend.

By the way! I am enjoying New Mobility magazine. Here is one glossy magazine where I read all the ads — as avidly as I read the articles. And, how fucking important and heartening to see a magazine full of other disabled people, and with bits and pieces of their complicated individual stories, not reduced to a sound bite, not over simplified. But with all the complexities of daily life, of varying pain level and ability and need for help. I noticed Kids on Wheels magazine as well and am going to suggest it to the school district and the local library. It would be very good for able bodied kids to read it and see that things are complicated… and that being disabled does not make other people alien creatures.

My legs are still cramping up or spasming; doing that thing. I don’t know what to call it! And, my foot still drags and my leg goes numb and tingly. I’m doing my stationary-bike pedaling every day a couple of times a day, again. My left upper arm is still doing that thing that I think of as the Perturbing Thing that I Have Never Felt Before. (It’s just not as constant or as bad as it was on the baclofen). My hands are still a bit messed up. Cold is painful and intense for me. I’m starting to think that extreme heat is also not so good; hot baths (that help pain on one level, because they warm me up) and hot tubbing leaves me oddly limp and in a whole different kind of pain.

By evening I’m ready to cry from pain and exhaustion, which probably means I’m pushing myself too hard, living a little too fast, not pacing myself during the day.

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In search of the perfect movie

I was reading this light-hearted celebration of violence and it occurred to me to ask:

What IS the perfect movie?

Must have maximum possible:

- beautifully choreographed fighting, shot correctly
- explosions and fire
- sexy implements such as swords, guns, motorcycles, computers
- fast moving
- destroyed things
- as unsexist as possible
- no mushy bits
- minimal exposition
- leaping from thing to thing
- Car chases are okay if spectacular, with leaping
- Mass battles in historical costume are a bonus

In other words I don’t want to be fast forwarding to the next cool fight scene. The whole damn movie should be the fight scene.

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Can I whine with you?

If you want to hear me do a Texas accent, head over to Can I Sit With You? live for a video of me reading the bit of the story where some nasty 10 year old “kicker” chick in 1980 goaded me until I ranted the good rant.

Then, buy the book!

If you want to see me read an even sillier, and more obscene, story, come on Thursday to the Center for Sex and Culture in the Jon Sims Center, 8pm. I’ll be reading from my story in the book Sex for America. It’s not porn… it’s political humor that happens to have some nostril-flaringly dirty sex in it.

Speaking of rants! Holy hell, I hate the rain and cold. Though I’m all glad there’s ramps, I hate wheeling to Moomin’s school, and I hate going up the elevator, and trying to muster a smile for the desperately-smiling yupster moms, which today I just couldn’t.

What’s with that insane-o chick who greeted me today with a head splitting grin and in a toddler-amusing voice said simply, “WHEEEEEEEE!” as if I must be overcome with the joy of movement or as if I were her 18 month old forced to go down the slide alone, clearly not enjoying it and in need of encouragement. While I often am overcome with that joy of movement, it tends to happen in the sun, and warm, and not in the rain when I have wet hands and a wet lap, hunched and ruffled and huffy in misery like a little wheely owl. All I can tell you is that I was ready to leap up and smack her one across the face with a be-gloved, wet hand. Wheeee, indeed.

I am coming to think that what able bodied people could do most to help me out is to submit themselves for a hearty slapping with a wet codfish. It would get some of the aggression, bitterness, and sadism out of my system.

MEANWHILE, earlier today I went off looking for a notary. I thought of the mailbox place in the big parking lot across the street, but rejected that thought. Online I found a zillion places with notaries. I put on the 5 layers of clothes I must don to survive the brutal 60 degree California winter and set out on the expedition. AN HOUR LATER and several times of crutching into somewhere and then wheeling in only to find no goddamn notaries, who are amazingly useless anyway, the very last place I tried (on a whim as they were a tax place near my house) their usual notary was out… doing whatever notaries do on their days off, the Royal Nonesuch or cavorting in the sleet or returning to their underground burrows and lairs… and had I tried the mailbox store in the shopping center across the street, because they had a notary for sure? OH.

As I wended my weary way from invisible notary to invisible notary, the fancy plant store sucked me in. I bought a $35 hanging pothos. The shame of it… I used to grow them very successfully in jars from leaves pinched from other people’s houseplants for free. But to hell with it, here is a frothy thing bigger than my entire body, like an exploding air cthulhu, now enlivening the kitchen! Instant gratification!

Rook is in a sort of Internet Drama about copyright and the Open Gaming License. I’m fascinated! Zomg. His meticulousness, let me show you it. A small part of it. I contemplate this (and Quilty’s archival tendencies) and wish I could achieve something like that. Instead, I do what I do.

In cheerier news! I have been spending more time with Moomin and feel less rotten about myself as a parent. He is lovely… I will be rotten today, hiding in bed, perhaps eating his months-old halloween candy if I can find it, but once I perk up with the help of electric blankets I’ll be nice again, and help with homework.

Zond-7′s mom and nephew are in SF now at a cool-looking cheap hotel in the Mission. I liked having them. It was a little stressful, but good — mostly stressful to worry over whether they were secretly miserable or not. Of course it was vastly entertaining to be blasted with insight about the characteristics of his family. Also, they shopped and did dishes without any undue fuss, and unlike my own parents and more jaded set of inlaws, they didn’t try to do some vast helpful Project like throwing away all my possessions or earthquake-proofing and greasing the cats. (Though the last Project *was* helpful…) His mom is likely the worst washer of dishes I have ever encountered but rather than bothering me to find smears of peanut butter over everything “clean” it just made me feel like a Domestic Genius. (Believe me, a rare feeling.) The characteristics have to do with maybe a sort of disconnect, combined with the ability and determination to guess what other people want and make it so, which can be pleasant and make life smooth, but also can go very wrong at times in more ways than one. We made bread pudding, and went to the mall. They hid a lot in bed with their computers and books, compatible with our normal lifestyle. It was peaceful. I did not stick to my resolution to do computer-fixing for them. I did feel happy that our Unconventional Thing was accepted and respected. I need to come out to my own parents. It always feels icky not to be. It is not about being in their face or anything. It is just not sustainable not to be “out”.

Also cheerier! My entire work team came over last night, tromping in with enormous amounts of fancy beer and wine and cheese which they squirrelled away and set out on plates. They draped themselves across my enormous couch & each other, and most of us hot tubbed. My hot tub can fit at least 8 or 9 drunken, naked software engineers in it. Did you know? Some of the newer co-workers didn’t know and were not quite in the California naked hot tub thang. Maybe next time. They were sweetly sad yet congratulatory that I’m leaving that job (but sticking around for a while as an occasional contractor.)

I have read the 2nd Empress of Mijak book, well, skimmed it because it was not really that good to the point of being nearly unbearable (and really only the first bit of the first book was good, anyway) and Howard’s End, and Terry Bisson’s excellent kids’ book on the Nat Turner Rebellion, and re-read the Golden Compass which seemed considerably less awesome than I had found it to be when it first came out and I was a young grasshopper with less critical oomph to my brains. I’ll just throw it out there that the movie Lyra was better than the book Lyra. The part I still liked, parts, were the panzerbjorne, the atmosphere/background/setting, and the end where Lyra realizes that both her parents are freaking scary and not to be trusted. I loved the book when I first read it for that basic message of not trusting authority & for the lack of happy ending. Yet… as a “strong female character” I have to say, Lyra blows.

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The pace of visitors

Visitors for the past few days which makes you attempt to see your life through someone’s else’s view and of course that’s a funny balance because visitors change the way you do things. I notice over time that Rook and I have our standard “Joys of Deadwood City” tour we offer to visitors; the walkable downtown, the handy Food Hole grocery which means you can stroll to it once a day and have nice fruit and bread and things like that; Buck’s; the cafe. There is not really much else! I’m not up for H4ndley Rock, and Bore “Island” is really just a marshy landfill which is only charming if you like the remnants of industrial waste and highway and undiscriminating waterfowl who need a place to stop over on the way to Venezuela. A person who had their shit together might go to the Little F0x or the big F0x theater.

After those limited Joys are sampled it is a matter of lather, rinse, repeat. Sleeping, reading, lounging on couches, baking, and board games punctuate the suburban bliss. Abundant parking may also be savored by the urban visitor, as a sort of grace note in the symphony of slack.

Anyway! I think Zond-7′s mum and nephew are over their jet lag and eager to move on to the Big City, tomorrow! His nephew has also made friends with bank tellers, homeless people, record and game store owners, the supermarket checkers, and the “Buddhist” cult around the corner in the old Salvation Army church: being a gregarious soul and inquisitive about gang colors, pancakes, and other Americana.

Speaking of gang colors! I noticed for the very first time in Deadwood, some blue 13 sureño tags – big and bold right under the J3fferson overpass! Holy crap! I was pretty shocked and wonder if it will have some repercussions. For 8 years I have lived here and it is all XIV all the time. I don’t know dick about it all, other than noticing the colors & symbols and decoding a little bit. And… oddly… feeling a bit patriotic of the norteños since I do live here. Anyway, the main thing is that I worry that this means new conflict. Though the tags mostly seem to be kids dabbling or fooling around, in this neighborhood.

I have cut Zond-7′s hair, and his nephew’s which was hacked bald in places since he is the sort of person to let small children cut his hair (and who is going Out for a Run about once an hour, in the rain, on the edge of manic) and we have lounged and loafed and walked (rolled) and eaten enormous brunch. Zond-7′s mother is hemming his pants.

Last night most of us went to Squid’s place with Indian food. Iz told me about Cambodia, and Moomin read Polly and the Pirates which I swiped from him later and which was EXCELLENT, and SJ was there. I was exhausted (from having take his mum to the mall which I am still not sure if she wanted to do that for an authentic American experience or she just wanted to buy things). The mall trip was hilarious. I think from having raised a couple of butchy punky superfeminist strongminded daughters she knew just how to manage me so that I didn’t mind. I would balk, suggest leaving the store, act disinterested and attempt to direct her to things she might want, or say harrumphily that I refuse to even look at clothing with fake pockets… and where my mom would argue the point and despair, she just blinked slightly, nodded in understanding, suggested the boys’ department, rifled through it, swept me to a completely different area, and like a kindly librarian matching me with the Book of Gold she found me a magic selection of suit jackets with functional pockets, sleek with no frilly crap, including *the perfect jacket of my dreams* and corresponding white dress shirt. In it, I scare myself, I’m so handsome and sleek and foppish. So, that’s how I went to the mall for the first time in ages, and came out feeling triumphant.

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Furry lady scary


Furry lady scary
Originally uploaded by Liz.

We had a great time at Queer Open Mic last night! ANd this morning SJ is over hanging out. We hit the cost plus for towels and a bathroom & raided the nasty cleaning fluid smelling yet awesome $avers thrift store — obtaining a mink with a clippy mouth. FURRIES!!! It has one eye. Pirate? Laser LED implant? Gleaming rhinestone? O readers help us! MINKY THE DEATH MINK.

Children are still in pajamas squalidly watching Chitty chitty yum yum while grownups snark at it with obscene glee. It’s like we’re drunk, but we’re not.

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Crosslinky thoughts

About intersections of disability, body image, gender, and family, I guest blogged over here on Body Impolitic: Our Big Old Crippled Crazy Bodies Are Political.

And there’s a flippant book review on FeministSF of a sort of feminist action-cryptography-mysticism-conspiracy-novel from 1988, The Eight by Katharine Neville, at The pleasure of retro.

I’m enjoying io9 a lot. It got an instant community of good commenters, and it’s got archives back to last October, so I haven’t been bored on the internet for a while now.

I have been working on walking quietly around the house, and my enormous detailed obsessive bundle of information about The Orphan’s Tales including a high level summary, a more detailed summary of In the Night Garden, and a glossary of characters and place names. (You can follow that link; no spoilers there, but the links from it can be spoilery.)

I’m having another quiet weekend mostly puttering in the house and resting and reading in bed. Saturday we had a Dragons game with action figures and a battle. Sunday I helped Moomin with his diorama and his book report on a book about a time machine and then in SF (dinner at Emmy’s with Zond-7 and then helplessly watching him melt down with stress for a while, then we Planned Things and both felt better.) Today was very relaxed with more reading and computing and then one of those very harmonious 2 hour long conversations over chicken tacos and while driving… about class, books, SF, Scalzi, Orphan’s Tales, Potter fanfic, our families, childhood memories, the nature of storytelling and anecdote. We’re all back in Deadwood now; Moomin is about to give us a practice session of his oral report on the time machine book. We have all watched a YouTube video with Korean breakdancers…. thus goes my life…

My only complaint is that it’s cold, rainy, my legs hurt, my knees are being horrible I think from the increased amount of walking on my less-spastic-but-weakened legs. Spring, please come!

OH… and I’m reading on Friday at Queer Open Mic at the Three Dollar Bill Cafe, in the LGBT Center in SF, with several other readers from Can I Sit With You? including international glam queen blogstar SJ of I, Asshole, and then the open mic itself, which is always entertaining and thought-provoking. If you’re around, do please come to it! And… buy the book, which make a very good present for older elementary school kids & up, if you don’t mind them reading some swears.

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Ridiculous toothbrushes

I was contemplating my toothbrush just now and thinking how ridiculously overengineered and overmanufactured it is. This after a long yet instantaneous vision of how, post-apocalypse, I’d have to use this same toothbrush for the rest of my life.

It’s a pleasant, firm, yet yielding texture, faintly rubbery but in no way sticky or too slick or unpleasant. It could be a high class prosthetic device. Its coloring is precisely controlled, so that it’s perfectly white and then has harder plastic purple bits. We haven’t even gotten to the bristles yet; this is just the handle. It has sparkly gold letters for its superdesigned logo. There’s a hole in the ergonomically designed handle just in case I want to hang it up.

How can this be sustained? How can we make such very designed and made and yet disposable objects? Isn’t there a cost to this conspicuous consumption? Must everything be so nice? Isn’t the superfanciness of this toothbrush actually made of someone’s blood and misery?

Some whole committee probably did studies of how the subtle womanly curves of the toothbrush handle could play upon our advertising-sick psyches. What a waste of their lives and time and mental energy.

All this for what is basically… a few bristles glued to a fucking STICK.

I’m sure there was a cheaper, plainer toothbrush, but maybe I would have saved a quarter by buying it.

Wait, but if I buy the fancy one, I’ll probably brush my teeth more. Because I associate brushing my teeth with the idea of an annoying chore. So the more ornate the object, the more I’m ritually buying belief, or commitment, to the toothbrushing.

Here is where I think that sumptuary laws might be a good idea and also relatively painless. Though it seems ridiculous to make a fancy toothbrush illegal, and I’m sure for someone with arthritis, the fancy grip is helpful. Or just give, oh, I don’t know, tax breaks for companies that manufacture simpler things. I’m not saying there needs to be an aestheticism tax, or a cushiony-tool-handle tax… but maybe something more like a “needless complexity tax”. Or every 5 years, have a sort of contest and only allow the top 10 different toothbrush designs. How the fuck many do we need!

Standard disclaimer on how I don’t know anything about actual economics.

Also, I’ll never say no to that really thin minty “glide” floss, which does mean that I floss my teeth rather than just thinking about it.

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Reading The Shadow Speaker, and an update on pain

I’m in the middle of The Shadow Speaker (by Nnedi Okorafor-Mbachu) and am digging it a lot. It feels more serious & weighty than Zahrah the Windseeker, which I also loved. I like its superpowered mutant kids & intersecting magic worlds & fantastic writing. I might be in love with Jaa the Red Queen warrior who has two husbands. Or the way that the politics of chocolate play into the story. Or all the strong women in the story… Or the way that Ejii starts to be able to see things in microscopic vision, seeing cells, and then atoms and molecules. No… wait… really I’m still in love with the plant-computers from Windseeker. & the city. I’m a sucker for skyscrapers made out of giant plants.

Today was long but good. I recognize all the feelings in myself of a long day where I have gotten too exhausted. I don’t know where my limits are physically. I’m afraid not to push myself, and afraid to push myself too far. It’s so exciting to feel stronger. I am still so relieved and happy about being undiagnosed, but those feelings are complicated and mixed with fear, anger, guilt, feeling both duped by the probably-wrong diagnosis and also responsible for it somehow.

I walked around a lot this afternoon but still needed the wheelchair. My right leg stiffens up. But the deep horrible pain is gone… what was that about? Exhaustion perhaps? The baclofen making my legs perceive walking to the bathroom like running a marathon? My right foot burns, and tingles, and prickles, and goes numb, but mostly does what I want it to do, except lift up all the way. The cramps in the bottoms of my feet are gone. My other foot buzzes and hurts, as do my hands, but that’s usual… So in short, aside from being physically weaker from the last couple of months of less activity, I’m back to around where I was all spring and summer.

I helped Z. by driving him around and packing boxes into my car again this morning and being moral support in general. Later back in Deadwood, I sat and threw away old papers today. Half a file cabinet drawer is now toast. Then I got Moomin (tiring, but not *impossible*) and helped him with his homework and did some dishes. It was very hard and I laid down in between doing things every few minutes. I took out a bunch of the trash, which I haven’t done for ages and ages because it is difficult from a wheelchair, but now I can do it on one crutch if I am slow and careful. I feel scared, proud, and brave lately as I walk around so much. Anyway, finally around 8pm I realized I was going to cry, and found my off switch and made Rook (who is sick with a cold) wake up and take over.

I’m trying to remind myself that my usual pattern is to go too far and backslide. I don’t want to do that. Also sometimes it isn’t my fault; it’s just impossible to tell how much is too much to do at once.

This morning while driving around and waiting for Zond-7 to come down the stairs with boxes, I thought about some of my translations from early last year, and I listened to cheery and moody 80s music in the glorious sunlight… and was very happy. I had that feeling like I was in my car and could just decide to drive off and keep driving, full of music and sunlight.

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Peaceful weekend, but a little rantiness

It’s been a fairly quiet weekend here at the Nuthouse. House full of kids in and out, Moomin’s friends and Peanut from next door. They’re in the hot tub right now all flailing around. (Thankfully supervised by someone else.)

I have done increasing amounts of housework and cooking and playing with kids over the past week since stopping baclofen). I also looked a bit at work again finally (not working so much as just paying attention) and poked at some layout for poetry books. In short, I’ve been perking up and able to do more.

Days have been pretty good, but by evening I’m in a lot more pain and am unsteady on one or both feet.

My right foot and calf remains messed up. It does all the weird things it’s been doing; right now it hurts and my outer toes and ball of foot is weird and tingling and numb, and doesn’t seem to work right.

But!

It’s nice… really nice! to have my arm strength back. I continue realizing how bad the last two months have been.

Also the strength in my left leg. I can go up stairs slowly with alternating feet. NOt all the way up a flight of stairs, but a bit of the way, with the crutches or 1 crutch and handrail.

I worked all afternoon helping Zond-7 pack some more for final bits of moving to his new place. Mostly I did the kitchen and I did it sitting down in a chair. We got back here & I collapsed & he helped me take off my boots and pants. I took half a vicodin. An hour later or so I took a very perfect bath.

You realized that on the baclofen I barely had the strength to wash… and to get undressed and get in the tub and dress again was an ordeal… so exhausting and painful & miserably cold to get undressed & then be wet afterwards. I was bathing only every 2 or 3 days, for all of November and December.

I look at how I was after the EMG and I was bad, but you know? Not worse than I was other times, like this spring. It was the drugs that messed me up catastrophically, & how.

RANT ALERT. Here it comes!

Mailing list buddies are telling me all the details of their years and years of diagnosis and un- and re-diagnosis. People who were told PLS, then rediagnosed with it, then had abnormal EMGs, then didn’t then had lesions and then didn’t later… It’s obviously a hot mess. Looking at all the emails, what I see is that by the time you’ve been through 10 years and 6 diagnoses you’re on 6 different drugs and who knows which end is up any more. Add that bit of data to my conviction that we are all vulnerable to overdrugging and this just strengthens my resolve to stay off all the drugs that get thrown at me. If I wanted, even slightly, I could right now legally be on vicodin, carisoprodol (Soma), baclofen, and Lyrica, with ambien on top and anti-depressants and anti-anxiety meds on top of THAT. In short I could be high as a kite every second of the day if I told doctors that I felt better that way — because I’m upper middle class and have insurance. While people vastly more miserable than I am cannot get the most basic medications necessary for their health; and while other people in difficult situations can’t get any sort of medical care or psych help and turn to street drugs and get thrown in jail.

I have more ranting to do, but not here & now. Must process a bit more in semi-private before I bust out with it.

Oh… and it feels a little weird for people to congratulate me on being un-diagnosed. I mean thanks but, it’s just odd feeling and I don’t know what to say. Thanks but you know what things are still hard and I’m still in pain and still afraid for my future in so many ways. Yes, it’s a relief that I have some objective evidence of not having ALS. Yes, it’s a huge though somewhat qualified relief to have another neurologist say I don’t have PLS and she doesn’t think I have MS either. I mean, yay. But… on the other hand… still in pain and disabled and dealing with the same things I have been since early last year. And still with a hefty chunk of uncertainty as to why and what happens next. I’ve still got one neuro saying one thing and the other disagreeing. I do appreciate it that other people are and have been worried about me and haven’t wanted to hear it that they might have to see me go through a progressive illness. But, you will have to bear it that I’m not like… BETTER. okay?

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