Posts Tagged ‘backpack’

On being uptight

If you are the sort of person who prides yourself on not being uptight then it’s a shock to realize the ways you’ve totally got a stick up your butt and in fact, are completely insane. For me it was just a few years ago when I realized that certain unreasonable things drove me up the wall.

Pre-expedition dawdling

One was planning to go somewhere on a big trip like to the beach or out shopping or to an event with other people and them not being ready, dawdling, not having gas in the car, suddenly deciding it was a great time to clip their toenails, etc. That makes me insane! Be ready! Lay everything out beforehand! I am like a general of an army for a week beforehand thinking of all the small things that must be accomplished to lay the ground for an expedition to the beach. 10am the morning of the beach trip is not the time to check your oil, buy sun screen, stop to pick up a sandwich, etc etc OMG! There should be no fuss! No! Fussing! Now, I try to endure with patience and be adaptable if there is an oversight but if I can see that dawdling and faffing is the order of the day, I have to re-imagine everything properly in my head in order to stay sane. (“Sane”.)

Expedition mealtime “surprise”

Another one is eating food in museums and amusement parks. If you are only going to be in a museum for like 2 hours why are you spending 45 minutes of that in a claustrophobic loud horrible plastic generic cafetorium eating a 12 dollar wilty lettuced sandwich? Fuck me! Eat beforehand! You know you have to eat, plan for it! Eat some crackers from your backpack, drink from the water fountain, and suck it up till you get home. It is not so much about the money or being thrifty. It’s that it’s a totally crappy atmosphere. I have geared up my finest receptor and sensory and analysis modules to have an Experience, my input dials are maxed out, and now I’m in a Denny’s. Aaaaaaaa!

The Balance of the Universe, in my mouth

Another — you see what I mean, I find as I get older there are either more and more of these uptightnesses, or I’m more self-aware — is about the way of eating food. This one is probably very common on iamneurotic.com. I sort of mentally portion out my food so it is balanced all around and I like it to come out even. Yes! Neurotic! The other day, Rook brought a sandwich at work, with the extra pickle I asked for (yay) and … It’s so hard to explain. It was a lovely sandwich that I had increased the pleasure of by having looked forward to it all morning. As if from my little officey world of withered grey cubicles I had pinned all my shining hopes on this delicious Sandwich With Pickle. The pickle was in 2 halves. Of course, half the pickle for one half of the sandwich and the other half for the other. RIGHT??? Well just as I came to the end of the first half Rook casually picked up the pickle and went to take a giant 6-foot-tall-guy-bite out of it. I squawked like a motherfucking cockatoo. Hello, this is a man who can put his entire fist into his mouth. PUT DOWN THAT PICKLE.

The next second I fell over myself trying to assess whether it was his lovely expectation that that was his pickle and plus trying to suppress any selfishness and at least allot him half if not handing over the whole thing. (While still internally shrieking OMG if you wanted one, why didn’t you get your own!) And re-imagining my sandwich trying to still see it as glorious rather than a sad tarnished wistful wrong-ish half-sandwich-without-its-rightful-flavor.

As I thought over my own uptightness and yet, adaptability and willingness to hand over MY HALF OF MY FOOD, I realized the key to my being able to adapt like a normal human being is in imagining-out. If I can pause for a moment and imagine out the alternate future to the one I had already prepared myself for, then I’m all good and right with the world again and can be a gracious person. If not, then I’m stuck in being a surly petty bitch. So for example on going to the beach if I see that things aren’t happening as I wished then I make a new plan to go outside and mess around in the garden (the key thing here is avoiding the deadly feeling of waiting for other people.)

I told my sister Minnie the pickle story to make her laugh because she’s exactly the same way. If she had olives, she would have an unconscious awareness of portioning out the olive to sandwich consumption ratio and I would never presume to perturb that balance in mid sandwich. Am I right??? This is possibly part of our crucial sister telepathy (which has decreased as we get older but is still there.) Doubly so, perhaps, for bacon and pancakes. There is a special circle of hell for bacon-stealers.

These things are the minor things; the actual ways I’m actually uptight I can’t tell you because I’m too freaked out by them to talk about them, like phobias. Before any talking about it happens, denial hits and I veer off onto some other subject for the sake of self-preservation.

The thing about this way of thinking is that normally it works very well. I keenly enjoy the pleasures of the imaginary becoming real and I have a great time and am full of enthusiasms, major and minor.

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DIY: Access Hacks project

For the second year in a row, I thought of the wheelchair modification and disability access projects that could and should be at Maker Faire. I’d like to make that happen next year.

At Maker Faire this year, I talked with Miguel Valenzuela, who was showing Lift Assist, a toilet lift device that can be built for $150 out of bits of PVC and junk from a hardware store, powered hydraulically from your own water system. That kind of thing costs thousands of dollars if you buy it as a medical device. If it were a DIY kit, and if it had open source plans and instructions up on the web, it could be useful to thousands of people all over the world.

So I got to thinking. Who would I even hook Miguel up with, to get his plans used? What other projects are spreading disability access devices, open source? Could things like this just be given over to an organization like Engineers Without Borders? How can they be open sourced or copylefted?

There are specific projects like Whirlwind Wheelchair International and its design for the Rough Rider chair, developed by Ralf Hotchkiss and students over many years and meant to be distributed to shops or factories or organizations in developing nations. In other words, partnership with actual manufacturers. There’s the Free Wheelchair Mission which has a kit to build wheelchairs for under $50. They seem to take donations and then ship a giant crate of wheelchair kits to somewhere in the world. Those both look great. But neither of them were for a disabled person who might want to build their own stuff.

Then I found some nifty sites like Marty’s Gearability blog, which has a DIY category for “Life with limitations and the gear that makes things work”. She has made dozens of posts on modifications she’s made for her dad, who uses a wheelchair. I especially enjoyed the how-to for a wheelchair cup holder.

I’m also somewhat familiar with Adafruit Industries and its projects like SpokePOV. What if assistive devices used something closer to this model? Rather than people patenting, and trying to sell their designs to a medical supply company, which marks it up a million times until disabled people in the U.S. can’t afford them unless they have insurance or can wait 5 years and fight a legal battle with Medicare.

I found organizations like Remap in the UK, that takes applications from individual disabled people, and hooks them up with an engineer who will build them a custom device. This I think exemplifies the well meaning but ill advised attempts to help disabled people through a “charity” model rather than through widespread empowerment. If an engineer is donating time and an invention, why not have them write up and donate the plans for whatever they are building, and post the DIY instructions for free? Then, thousands of people all over the world could build that invention for themselves.

OneSwitch, on the other hand, has the right idea. It’s a compendium of DIY electronics projects to build assistive devices. Perfect!

Meanwhile, I went looking for the latest news in open source hardware. What’s up with the Open Source Hardware License?

My own inventions for assistive devices have tended towards the creative yet slapdash use of duct tape. For example, my Duct Tape Crutch Pockets, an idea easily adaptable to small pouches for forearm crutches and canes, or to get more storage space onto your wheelchair.

My own canes and crutches that fold (with internal bungee cords) could use simple velcro closure straps to keep them folded up while they’re in my backpack or in the car. There are some ingenious ways, also, to attach canes or crutches to a wheelchair.

I have thought of, but not made, ways to extend storage space further. For example, I think that the lack of pockets in women’s clothing is a political issue. Women’s clothes are mostly designed without pockets, because of cultural pressure to look skinny, so women end up encumbered by bags and purses. If you think about how wheelchairs are made, it is interesting that they are assumed not to need storage space, cup holders, things like that. People hang little backpacks off their chairs. And there are a few custom made pouches for walkers, crutches, and wheelchairs, like this thin armrest pouch. You won’t find them in an actual wheelchair store – and rarely in a drugstore or medical supply house. Why not?

As wheelchair designs continue to evolve, I hope that manufacturers will create customizable backs and sides and seats. Nylon webbing with d-rings, sewn into the backs and under the seats of wheelchairs, would mean that custom pouches and packs could clip onto a chair. Then it would be easy to set up your chair with interchangeable bits. My laptop could go in a pouch under the seat, for example, so that it wouldn’t affect my center of gravity so drastically as it hangs off the seat back in a backpack.

I’d like to see more and more mods for chairs and canes and crutches that are just for fun. The little holes in adjustable-height, hollow metal walking canes — don’t they seem like the perfect size to stick an LED light in there?

Also, meanwhile, I had posted briefly the other day for Blogging Against Disablism Day 2008 with a list of ideas for Practical actions that will help, like smoothing out steps into a small business (ie just freaking pour some asphalt in there or build a wooden wedge even if it is not exactly to code; people do nothing, for fear of being sued, rather than spend thousands to do a to-code ramp, and I’d rather they just stuff in a slope and bolt a rail to the wall than do nothing!). After I made the list, I went looking for online instructions on how to do the things I was suggesting. What did I come up with ? Jack shit! Nothing! Nada!

So, here’s what I propose we do:

- Compile free and open source how-tos, plans, designs, etc. on Disapedia. I have made a page for DIY equipment.

- I will go and interview Hotchkiss and his class, and write up more detail on how their open source project works.

- A meeting to share access hacks and start to add to that wiki page on Disapedia.

- I’ll head up an effort to organize a really good disability/accessibility hacking booth for Maker Faire next year.

For the Access Hacks booth, I’d like to pull in:
- craft/sewing people for stuff like mobility device storage and mods with velcro and fabric
- metal working people
- electronics people (like the OneSwitch folks)
- Maybe invite Tech Shop and the Bay Area wheelchair stores to participate
- obviously, disabled crafty/makery people. I thought I could try to pull in GimpGirl and put the word out in other communities
- Flyers on how to open source your hack and make it free – license info, where to post, hook up with places like WikiHow.

This could make a super fantastic real life application for hardware/craft hacks. I would love to just hang out all weekend with a bunch of other people with disabilities and share whatever hacks we’ve already come up with. That in itself would be productive without even doing it at Maker Faire. I’d like an Access Hacks meeting around here and I wonder if people would host them elsewhere and then post tips on Disapedia. (I would like to use them rather than host a new wiki, but I’m willing to make an access hacks wiki if that’s what people would like.)

Please, leave feedback in the comments.

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Facials! I don’t mean the dirty kind!

I think I’ve had a facial maybe 1 other time and it was one of those deals where you go “Oh, whatever” and abandon yourself and 60 bucks to the hands of fate. Salons and day spas are such a crapshoot. You know that some strangers are going to touch you for a while and some shit’s going to happen to you – but what? It is very like going to a whorehouse but for middle aged suburban ladies (as I’m sure many of you have noticed.)

So what happened to me in this huge fancy (yet cheap) new salon place in downtown Deadwood was that two women removed my socks and shoes and put me into a giant vibrating chair (see?) that also did percussion and kneading. They soaked my feet and hands. I thought the hand soaking bowls were nifty because they put smooth glass pebbles in them so your fingers don’t get bored. There was painting, and dabbing, and massaging with about 6 different kinds of scrubby stuff and lotions. They did all the dabbing and pincering of cuticles and filing early on. They pointed at the autoclaving disinfecting thing to reassure me about how modern they are & that flesh eating bacteria will not rot my fingers off my bones because of their cuticular invasions. There was hot stone massage. I noted they took the hot stones out of a crockpot. The hot stones might have been the best part, but I also liked the HOT LOTION. Dang! Then, a rather elaborate french manicure which is pale pink or clear nails with white tips. I don’t know how long thatall took. A long time.

I find that perhaps because language is a barrier, but perhaps also cultural difference of some kind, the Nail Salon ladies are alert to the slightest twitch and they overinterpret a bit. So, if you fidget, or scratch your nose, they assume no matter WHAT you say that you don’t like what they were doing and they should switch. Alas. An exaggeration of the Curse of the Just Right, where someone is massaging you, and you say “OMG, just right, don’t stop, keep doing exactly that” and they can’t HELP doing it different. Also true for sex. You might have noticed this in your own life.

For the facial part I was led back into the bowels of the building where there were candles and more mysterious Stations for things to Happen and then into a small room with more candles and all sorts of big dentists’ office looking machines. I was given a white cotton muumuu for purposes of neck and shoulder massage which made me feel nearly certain this would not be like my FIRST time I braved the “facial”. When THAT happened oh, it was awful. If you look at my skin, which I recommend you don’t, you will see I am acne-ridden, greasy, and dry-skinned all once. There are blackheads and whiteheads and sort of looming way underneath lurking incipient zits that cannot be stopped but are lined up on a zit conveyer belt waiting for their turn. So in the historic facial of days of yore, some lady whose language I did not speak *squeezed my zits* and sort of eviscerated them with a tiny post-hole digger. It was wildly painful. Afterwards my face was all raw. So anyway, THIS time was awesome. The dental machine turned out to be a high tech Vaporizer which gently puffed warm, perfect steamy air onto my face. A hot towel was wrapped around my head and then infinite strange hot faceclothings and more dabbing and scrubbing and face massage happened. IN between every stage I got hot towelled again. I lost count. First there was coarse grained scrubbing and then a towel. Then fine grained scrubbiness. Towel. Lotiony stuff. Towel. Tingly stuff. A sort of Mask thing which dried as I fell half asleep deliciously to some horrible new age flute music and a botched rendition on guitars of that one Satie piece that they always play in arty movies. Some shoulder and neck rubbing happened while I was lying there on my back with a warm fuzzy blanket over me. There was a point where there was tiny karate-chop percussive massaging all over my face, my sinuses, jaws, much better than you’d think.

So that was pretty awesome. My face does not feel or appear magically different — the point is more the hour of face massage. I don’t really care about the nail polish either (though it is rather splendid) since I will ruin it by tonight, but the good news on that front is whatever they use for polish does not asphyxiate me or them.

The bad part was they were flipping out the whole time about my crippledness (which they didn’t the first time I went there! dammit!) and just could not grasp that I could walk okay. Like, I walked in. With my backpack and crutches. And they saw me walk a little without the crutches. But, they would grab onto my arms while I was walking, or try to lift me up sort of from a chair — unbelieveable — and I had to explain 5 times that no one had dropped me off, Yes I could drive, no I did not have a special car for handicapped people — Yes I could work the pedals — no, no one was coming to get me — this from people who were looking at my feet and watching them move for an hour and a half and I repeat, who saw me walk in and walk around their salon. (My guess is that much like it was in China, Vietnam must not quite be there with popular awareness of ideas of independent living, despite some evidence to the contrary. I dealt with this as if quaaludes were my compass and anchor with a mild half-smile and eventually all the questions stopped as I dozed and sank into the awesome vibrating throne chair and let myself be buffed and squashed and oiled like a motherfucking empress of rome.

Rook drove to M4rin to pick up his mum from her spirituality Retreat & thence to the Assploratorium. They are on their way back. My plan is to feed them soup and hope to god my mom in law goes to bed early after her exhausting day. Armed with my 3 hours of hand, face, and foot massage and new age music I have another plan, which is, ANY time she brings up any crappy health thing or says anything that pisses me off I will Change the subject and ask her what her plan is for when she begins to lose mobility in her 4 story house that has stairs to get in the door, and also what she will do when she can’t drive safely any more, and what her blood pressure is, and I will also regale her with stories about my mom’s parents in their assisted living with expensive round the clock aides. That ought to fix her wagon. If that fails then I will remember some errands and leave for an hour or so.

I have worked on poety translator things, submitted 2 batches of poems to places, cooked, done laundry, on top of all that!

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I love to go somewhere with no plan

One of my particular pleasures in life is, when I have to go somewhere, go an hour early and explore with no goal in mind. Right now I’m in SF in a slightly random spot on Spear and Folsom. I have “discovered” Hills Brothers Coffee office building, which looks early 20th century built of warm brown brick and with arches and those fancy cornice things also out of brick at the top of the building, and a tall nearly windowless tower. In the entryway there’s a statue of a Turkish-looking guy in slippers and turban and robe drinking a big cup of coffee – with a plaque that explains it was the Hills Bros. logo. The courtyard is breezy, sunny, fountainy; across the street loud bangs and drone of construction on an office tower. On the other side the windy sound of traffic on Embarcadero and the highway. I have a clear view of the first tower and arc of the Bay Bridge, grey against the sky, and it’s very beautiful next to the brick. There are seagulls. People sitting or walking, hanging out, smoking in hardhats, unloading things, on the phone, clicking across the paving stones in their heels and pantsuits, with backpacks and briefcases, rolled up sheafs of paper which make me think there’s a design or architecture firm nearby, mixed with the jeans and polo shirts of tech. I buzzed around to look at everything. I’m near that sculpture of the bow and arrow which I’ve only seen from my car. Other people’s office windows show some rather upscale open-plan hipster cubes in there, like officey ikea-y living rooms.

My everything bagel double toasted with salmon and cream cheese & a latte = Nirvana.

I think this mild pleasure & habit developed over time. I can’t remember when I started doing it. I think while I was temping in Oakland in the early 90s. You couldn’t always count on buses, so it was good to go to work early. I’d end up in little corners of downtown, or far-distant office parks, always worth exploring for their atmosphere.

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Blobbing some more

Hey y’all! I’m having a pajama weekend. There have been remote control “Mosquito” mini-helicopters, and endless Art Projects. We saw a wounded raccoon, we hot tubbed, we made LOLcats; we are wearing dragon and cheetah suits.

funny pictures
moar funny pictures

porcu-beaver, by Peanut
A porcu-beaver, drawing by Peanut

Later in the afternoon we are off to the Newhark aquatic center where there’s a “lazy river” indoors. Will I go down a water slide? Can I go there and be boring grownup who doesn’t want to swim in the little kid pee pool?

Rook and Zond-7 and I watched the first bits of Season 2 of The Wire last night. It was really really really great. I spent hours reading the episode guides to season 1 on Wikipedia, tentatively wiki gnoming them for typos, bad spelling, and nitpicky factual errors.

I made more amazing chicken and dumpling stew, because I wanted it but also to show it off to Zond-7. He is very satisfying to cook for – super appreciative. His eyes pretty much roll back in his head. It is the same if you offer him a q-tip unexpectedly.

We have had Peanut over a lot this weekend, which was interesting. She’s getting to be a Big Kid.

State of the legs: I am walking around fairly well for short distances. Around the house I do very well as long as I rest a lot in between. I still can’t go a full day like I could while I was able. Instead, I have to make sure I have some rest periods that are not only off my feet, but also not-stressed.

It is a little scary as I push my boundaries.

Yesterday I came down the stairs from Zond-7′s house and only hung onto the handrail. I didn’t use the crutches. I had them in hand, but didn’t lean on them for about half a block. Then, I started to need them. We went up a slight incline into the park and into the grass. Grass, sand, any uneven ground, is about 10 times harder than level sidewalks.

Just now, I got ready NOT on crutches, finding my backpack and wallet and shoes. I got to the car, drove 2 blocks to the Old Navvy, walked in slowly on crutches (by this time, hurting and tired), got a little kid bathing suit (so, all the way in the far end of the store), paid for it (luckily only 1 person ahead in line) and walked back out to my car. After that, I need to lie down a while for real. My legs and back and hip hurt from it. There is the stripe of pain, & also exhaustion and cramping. I feel a little like crying. It would have been easier in the wheelchair.

Even at best with walking, I am still limping (right side from the back/hip).

But you see though what huge progress that is? That I can *do* it at all and not pay for it with hours or days of pain?

Now I am truly back to where I was in September or mid-October.

I predict there will be some mild ups and downs, but I could be mostly out of the chair by summer. In the 90s, walking increased slowly and I got stronger and braver over about a year. Museums, zoos, big stores and malls, airports, that sort of thing, were the last frontier for wheelchair use, probably for about another year or two. It will be a little rough but I’m very happy to project this kind of progress.

Worst case, whatever it is will surge back and I go back to my leg buckling uncontrollably under me, dual swollen-knee troubles, and/or the sort of nerve pain that means a car ride is hell… I hope not… What a relief to be out of that territory for now.

io9 is particularly good this week. I’d like to see this movie: I’m a Cyborg and that’s okay.

I’m ready this week to think about translation and about Perl and Python. And at least one PT session in the warm pool.

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A day of doing everything superwoman style

Today I blogged a bit over at feministsf.net to post the Carl Brandon Society booklist of speculative fiction for Black History Month, adding links for all the books and authors and a few notes. I had coffee with Mark and gossiped somewhat harshly and honestly about literary things. I was really glad he called and pried me out of my comfortable electric blanket cave, because it was a beautiful day and that was some good pie. I was on crutches, and I might add, only halfway so and very nimbly.

Then I came home and rested a bit and tore apart the bathroom “closet” which is actually the bathtub and shower with a clothes-hanging rail thing and some boards on top and milk crates in the bathtub. Oh, my god, what a lot of crap got thrown in there over the last year. At some point, something dripped or condensed. Mold grew. There is still mold. I threw away 4 enormous bags of stuff, and put the rest in bins, in rough order, and washed some things to put elsewhere. Everything in there needs to be removed & washed and the tub blasted with anti-mildew cannons. For now, it’s at least decrufted and orderly.

I did much the same thing to the hall closet, in which some months ago my parents labored to install shelves. Those shelves were buried in stuff that has not been put away in the intervening months. I threw out a lot of sheets to make everything fit in the little bins for sheets and blankets and pillowcases. Whew! Most of it I did sitting down, but it was still a lot of physical work.

Then, feeling like a huge weight was off me, I rested a tiny bit more. And then drove off to deposit checks and to vote. (Checks, on crutches! Scarily! Voting, in the chair, because it was too far, and I didn’t think I could stand there and if there was no chair to sit in I’d be screwed.)

I snapped at the same “nice” volunteer lady I snapped at last time. She was weirdly holding the door for me even though the door was propped open (and she was in the way doing it.) I stopped dead and just stared at her in a fake polite way… waiting. Her smile got tenser. “Go right ahead!” I said. “Go on in! After you!”

Nice Voting Lady: Oh! *MASSIVE FLUSTERMENT*
Me: …. (waits)
Nice Voting Lady: Let me help you, here!
Me: Excuse me! *waits attentively*
Nice Voting Lady: I’ll just hold the door for you!
Me: Hmmm. Why? It’s propped open. (beginning to crack up laughing)
Nice Voting Lady: (with goose-hissing hostility, now) Well, why don’t I just hold it.
Me: Why? Does it make you feel good about yourself, like you’re helping crippled people? *completely loses it laughing*
Nice Voting Lady: *Ladylike sputtering* (Finally gets out of my way)

I am afraid I do not respect my elders sometimes as I should. I do not always spare them when they act weird because they are uncomfortable with me. Their pity is only a thin veneer over the anger they seem to have at me for being unexpected, and for causing them confusion and discomfort.

Oh well, usually, I’m super nice.

Then I drove off realizing there was no way I had it in me to go to the beach. I thought of the ocean and how nice it is to gaze at. I want warm sand against my cheek as I close my eyes against the sun and hear shrieky seagull noises and distant kids playing. I want to smell the clean but seaweedy smell and bake myself for hours like a dead thing washed up by the tide or a loaftastic elephant seal. No… could not make it. So I drove up to where 92 meets 280, where the bike riders park, and sat on the gravel next to my car, overlooking the reservoir & its sparkles & flocks of birds. Nearly as good… It’s a good thing I keep that picnic blanket in my car. I wished I had the perfect turkey sandwich at that moment and also that I was sweaty from physical exertion, hiking or swimming. Alas no. Just stiff and hurty from walking. I wrote poetry and thought about poetry and translations and looked at things I’d written. I felt so glad that there are always new things to think and that I can write them all down, and that I’m not bored with my own mind. In some ways it’s like tracks deepening, but there are still wild forays outwards.

I wrote poetry and also some musings on poetry and I thought about putting my essays-on-poetics and a whole jesusfuckload of translations up on Composite. I have an enormous backlog of translations and could post one every day for months without breaking a sweat. So… I might just start slammming them up there. Translation & publishing and international copyright are so fucking broken. I am done with that as a worry. Seriously, fuck it.

Anyway, writing was glorious. I stayed up there about an hour in the beautiful beautiful warm sunlight. My bones rejoiced. Even with my butt on a picnic blanket by the side of the road in the gravel & broken glass.

I crutched in to get Moomin! For the first time since mid October! Then I wished I hadn’t. I got out my chair and watched him run around the playground with some other kids. The other kids’ mom talked with me, when we both started laughing at Moomin who cannily pretended he wasn’t it, sidling up to his classmate’s little brother to tag him and run. Moomin was consistently the slowest runner, but excellent with strategy. He would stop and consider and plan.

At home he read a little bit and then I ripped him away from his book to play Crazy Machines, which came in the mail today! It was just his speed. He played without stopping to Level 16. I helped explain the way gears and rotational direction work. A perfect game for him, with no time pressure or THINGS COMING AT YOU OMG OMG ADRENALINE.

He did some homework and I rested and then I started cleaning obsessively again. I am freaking a bit that I will be working again, and not really better, and all the housecleaning and child care will fall on me and I’ll be completely fucked.

IN between that, while I was trying not to grab the mouse from Moomin and take over his Crazy Machines game, I modded up my wheelchair Barbie (aka “Becky”) with a black macbook with stickers:

with laptop

I’ve had this barbie doll since about 1993 when I was disabled the first time. She had my exact outfit with jeans, backpack, converse, and plaid flannel shirt. Also, my wheelchair at the time was red. And… it sounds corny… but I really did like having some kind of pop culture object that reflected something of my reality. She needs a haircut and a dye job don’t you think? Is it insane that I want to print out a tiny bit of text… I was thinking maybe a very-tiny screen shot of some blog that I read plus ecto in the background, and a term window, to paste into her computer screen…

Yes you heard me. I play with Barbies.

Then I made dinner for Moomin and then dinner for me and Rook (who has been at horrible late meetings) and tried to clean a little more and collapsed into a little heap. I should not have done anything else after dinner. And, I should not have done an errand AND gone to coffee AND voted AND picked Moomin up AND sat at the playground for so long AND made dinner. That was like the old me, trying to bust out, but I’m very much not there yet. Really, I can do *one thing* and pick up Moomin. There is no room for all that hauling ass. I was doing all that y’all and also working like 3 jobs … how?

I got cranky after about 8pm as I realized that there is so much to do. And i could just keep doing it. And I began to fret that I will not know how to manage things and that Moomin will not learn how to pick up after himself and neither will Rook and I will be their servant for the next 10 years. I unloaded the dishwasher and washed the dishes rather bangily and with a heart full of bitchiness. Oh where is my beautiful commune in which all the shit work is done together with hearty socialist gusto? And we don’t unload it all off onto someone of lower status? Where? Then I knew I was over tired and it was time to stop.

Also I was hurting like fuck and just disassociating as best I could in the name of “pushing myself to walk more” but also I think because I feel weirdly driven.

I still keep thinking… a million times a day… what if I had been dying, or degenerating as rapidly as I had feared… and never got time in this world to get my shit together. So much of the time I felt so helpless and frustrated. I have just got to do this and get my life in order while I can.

As even more of an excuse I offer to you that my parents are coming and I especially cannot take any crappy pity or condescension and so my plan is that everything is astonishingly clean. Or at least more of it.

So I will take a painkiller now and maybe cry recreationally while holding onto a pillow, and have hot chocolate in the bath.

It was nice to feel like my old self for most of the day.

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Being selective about things

Rook asked me if I wanted to do anything fun today and I looked at him blankly. “Fun? Fun. Hmmmm. No.”

What I want is to keep getting rid of stuff. I feel weighed down by junk. I’m a little impatient with myself for accumulating so much crap.

Also, I feel old in a particular way. Old and jaded. There are particular kinds of crap that I remember liking to have. I’d buy these things in garage sales or thrift stores or pick them up free off the street. Things like… oh stuffed animals and weird jewelry and tiny cute boxes and tchatkas of that sort, and scarves, and bits of lace, and pieces of computer equipment that might come in handy someday or else get made into a craft project or be fun to take apart and figure out… figurines of lizards, and unusual decks of cards, and empty boxes that might be good to put things in or make something out of, useful-seeming bags and backpacks and purses and shoulder-holster travel document holders that make me think of bandoliers and tricorders… bits of lingerie that can be combined with other things to make silly new-wavey-punky outfits or be worn to bed to be torn off of one’s body and then thrown away… little notebooks… big notebooks… office supplies and index cards… odd bits of clothing that I thought I might save for children to play dressup with if I ended up having that sort of children or hosting them as guests.

NO…

I don’t really like most of those things any more and if I continue to accumulate them it’s like trying to travel back in time and give my younger self a present. But me-now doesn’t give a flying fuck.

I have too much of that stuff, years and years of it, and could get rid of nearly all of it.

What if I did, and kept just two… or one… of each of those sorts of things?

What about going through the shelves of old journals, and tearing out pages that are or are not interesting and throwing the rest away?

The junk I have a weakness for still are: snarky tshirts, books, ephemera like flyers and posters, stickers, notebooks. If you count books as junk which surely you don’t.

Once my sister had me rip the snarky fronts out of tshirts that I never wore anymore & save them or use them for patches (to sew on or pin onto backpack or jackets). That worked. I regretted a couple of them later.

It’s painful to toss some of these things because they are memories.

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The one nice thing about going to that hospital

Some people can be nice to you so that you don’t mind being helped, even if you’re me and have a big attitude about not needing help to the point of snarling at any poor fool who stands in my way while holding a door open. The valet parking guys at Big Trees Hospital can help me all day long. Maybe it’s just that today, I’m not feeling like supercrip, and I liked the help. But every other time, they’ve been nice too. Waiting and seeing what help I needed, or asking, and being sensitive and intuitive and patient — instead of offering help and then acting offended that I need something different.

Today it was pouring rain and the parking dude opened my door and took the chair that I handed him from the front seat. He opened the back door and got out my wheels and popped them on… and waited while I got the cushion and put it on just right. He hung up my backpack. All without acting like he was *waiting* for me and I should hurry up or do it faster or get out of the car like an able person would. Also, without being so overly deferential that I felt like he hated me, if you know what I mean.

We commented on the rain, like people do.

I got a little bit wet but really appreciated the help.

Just in case you think I’ve gone utterly mad, though: when I came back out of the hospital 20 minutes later, the same person in a giant SUV was parked under the awning thing which was why I had to get wet in the first place (and get my wheels wet, which sucks because then my hands are wet, and then my pants are wet because I have nowhere else to wipe my hands.) So I was about to get in, and realized it was that same chick. I commented to Nice Parking Guy, whose mild mannered umbrella extends even over dry-space-squatters. Then my usual ill temper reasserted itself and I wheeled around my car in the rain and rapped on her window.

“Excuse me, I just thought I’d let you know… if you weren’t in this space, I wouldn’t be wet right now. But I am.”

“But, I’m waiting for my mom to come out of the hospital.”

“HA! I don’t care. Maybe you could wait and then pull up when she comes out. Byeeeeee!”

I blithely wheeled off to where Nice Parking Guy was smothering a giggle & waiting to help me stuff the wheelchair back into my car.

Anyway, I’m up in SF now. My left leg is bad, unable to take much weight. The big muscle in the back of my thigh is spasming or doing something odd, and just collapses. Painfully. On the right, it’s more about my ankle, foot, and calf. My plan for the evening is to lie her in this warm bed with a cat, writing and reading and maybe doing some book layout if my hands aren’t too painful, but if they are, I’ll read a book.

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Before and after decluttering


top of the bureau
Originally uploaded by Liz.

Here’s a good rainy day project. I am picking another small yet horrible area of my house to go through. The top of this bureau gathers anything that I’ve taken out of my pockets or cleaned out of my backpacks and bags and suitcases. Every few months for the last couple of years, I kind of go through it and try to create some order and put things away. This is the stuff that never got put away. As I ponder it, which I have infinite leisure to do since this is the view from my bed if the computer isn’t in front of my face, I realize the things fall into some main categories:

- papers, flyers
- business cards
- stickers and patches
- barrettes
- conference junk; straps, pins
- toys or junk, dice, gadgets, wires
- coins, pens, chapstick, pills in foil wrappers
- office supplies, post its, binder clips

I’ll squirrel the papers all to my office. I’ll put the biz cards in an enormous envelope and file them in filing cabinet (they probably need their own rolodexy thing, if I keep them at all, which I will because they’re often kind of cool.) Stickers in another envelope and badges in another. Pins and buttons go up on the conference badge collection hanging on my bookshelf. Office supplies also go to the office. That will be one box in itself. (You realize that this same pattern of Junk is replicated in other places in the house; on my desk especially, and my night table drawer.)

There is bathroom stuff like barrettes and chapstick and allergy meds and tiny bottles of hand lotion. Bathroom box!

Then what? I guess I’ll find out. I should have a system to deal with these things, since they’re always the cruft of what’s left after I do the normal everyday cleaning and tidying.

****
There will be updates, and an “After” picture later today!

****

WHEW. Here is the halfway mark:

"progress"

And this is where I’m stopping:

whew

Everything’s sorted into little bins by category, including all the junk in my night table drawer and some things from other horrible tiny bins of junk around the house. I did all this sitting on the bed, but I’m still exhausted.

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I hate the TSA, I love comic books, and home is a beautiful place

Rook persuaded me to go home and so I spent the morning mildly drugged and with Rachel Edidin who was so awesome at Wiscon and got me to be one of the Birds of Prey, and who writes for Girl Wonder. Rachel took us all around Dark Horse, where she works as an editor. Moomin liked the giant statue of Concrete a lot and I am sure now he’ll want to read about Concrete. The first dude we talked with gave us a cool hardback book of Tarzan comics, the ones by Joe Kubert. Moomin opened, started reading, and then just folded up and sat down in the hallway where he had been standing. It was very awesome looking because he was so small and so engrossed. My son, let me show you him:

stopped cold in tracks by comic book

See? Really awesome. It just makes my heart flop around like crazy in an AWWWWWW sort of way. How lucky we are…

I feel like a good, or at least competent, parent again.

So, we toured all around and I met a zillion amazingly cool-seeming people whose offices are all decorated with comix posters and action figures and books and fun stuff. And did I mention all the people were super nice, and loaded us with free books and comic books and stickers and keychains and buttons? And there were lots of cool women working there. I mean, I’m sure it’s like working in any small publishing job where the pay might be a bit sketchy and yet, there are amazing benefits to working there

Rachel drove us back to Hell Hotel, where we ordered some food and ended up eating it in the car on the way to the airport. I was so relieved to be going home. And so grateful for the ride. Thanks Rachel! I wish I were more “on” and sparkly and talky and all that. But I just wasn’t… I was in that barely hanging onto reality place, where you go when you’re in a lot of pain. I know Rachel understands this from her own experience and was cutting me a lot of slack.

I will miss Rook and Moomin and I feel guilty for not being able to pull it together to stay and be cheery and family-ish. And I had looked forward to being in a bunch of games with zdashamber, because she rocks… Yet it’s so much better to be home.

The nicest thing about friends, and this morning, is that friends fix everything wrong. Rachel does not know it but she cured me of feeling full of bitter hate. Not with the 50 lbs of free comic books but with just basic human decency.

Rook too of course. He was a glorious force-field of reality-warping goodness.

The Portland airport was easy to get around, very small really; I got my ticket and to security in like 5 minutes. Then, the TSA gave me shit because my drivers license had expired. I forgot about this and if I’d remembered could have brought my passport. And I have a current license, but lost my wallet and then used my old expired license figuring I will go back to the DMV soon, and then haven’t had time, and then forgot I had to do it. Soooo… it was super dumb, because an expired drivers license is still perfectly valid ID. The only reason it expires is to make you go back to the DMV to check your vision and if you are still competent to drive, or something. It’s not like the ID-ness of it expires! There is your photo! Still very you-like! But the TSA is too dumb to realize that. And so put me down as having NO ID. Which also is no big deal and just means you go in a different line, which as a crippled person I do anyway, and they frisk you extra (which they do anyway since I’m crippled, naturally) and search my bag by hand.

SO. Here is my little irate-customer fight with the TSA. Because what more fun thing could I do high on Vicodin and nearly crying with the jabs of pain and fire pulsing down my shattered tibial nerve, and my zombie leg spasming like a dying eel?

As I was being frisked by the well intentioned but clueless TSA frisking lady, who was named something like Paula 56234 or Denise 52342, bag-searching guy yelled from maybe 10 feet away, “HEY! Does she have her boarding pass?” I looked up from where Paula 56234 was shoving the backs of her hands uncomfortably between my ass cheeks and the wheelchair cushion, waved, and said snappily with a bitchy-polite smile, “Hey man! You can ask me directly, I’m a human being right in front of you, and I can hear!” The bag-searching guy walked over with a menacing cop swagger. His name was something like Robert 56965. (I have to find the little piece of paper where I wrote down his badge number, but he was definitely a Robert; an older man with a grey mustache.) Robert 56965 got right up in my face, considerately bending down to my level. Robert 56965 then yelled at me like he was my dad and I was a bad teenager. He let me know that there was no cal for me to be rude. And that I would learn, and he would teach me, that I should “keep my mouth shut” and “not butt into conversations that were not addressed to me”.

I am a crippled girl with purple hair, travelling alone in a wheelchair carrying a backpack and balancing my sticker covered crutches between my legs. I yell at hotel managers. I have a job. I am the media. I go to Beijing. And I just got a lot of free comic books because of powerful geek girl solidarity. I’ve already been a giant entitled bitch about a hundred times on this trip. Do you think I am afraid of being arrested and thrown in fucking jail by the likes of Robert 56965?

No. I am not.

Well maybe a little. But, fuck it.

I might have flipped off Robert 56965 when he turned his back and the frisking lady definitely saw that and smothered a giggle.

So then when frisking was over, I explained to Robert 56965 that he should address me directly and that it was rude not to and that it is well known to be offensive to disabled people to talk to the person next to them using the 3rd person to talk about them as if they could not hear or understand. He refused to answer me and instead directed many sarcastic comments to Paula 56234. I whipped out my own Sarcastro superpowers and began to critique Robert 56965 to Paula 56234 while he searched my bag and swabbed my digital camera and my extra laptop battery and my toothpaste as if they might be super secret dangerous hi-tech crippled bitch weaponry. “Maybe you can let ROBERT 56965 KNOW in your SPECIAL LANGUAGE THAT ONLY YOU SHARE that I do not mind how much he searches my bag and that I would like to SPEAK TO HIS SUPERVISOR who maybe just maybe will know MY special human-being language.” Oh, poor Paula 56234!!!

Robert 56965′s supervisor came over and in front of Robert 56965 I told the supervisor that it was not right and that some people have issues because of people looking a little bit different. And that that was not acceptable. And that I would be complaining to the TSA with everyone’s badge numbers. I explained very politely and coherently that when a person points OUT that someone is being rude, that rude person might then get defensive and hostile. And that as a disabled person I am very familiar with people who thoughtlessly speak not to me but to the person next to me, and I try to point it out on the spot when it happens. Etcetera. The flak-catcher nodded and put on a Very Serious Listening Face and said nothing-ish things and I took the comment card and left.

Oh, glorious mocha, and nice lady in the waiting area who had been in China and talked with me about the Great Firewall, and perfectly nice seat-mate on the plane who was a real estate developer who worked on the California Academy of Sciences and is now proposing to build the Disney Family Museum complex in the Presidio and who listened to me talk about wikis, thank you for making me feel human again and helping me not burst into tears and cry all the way home.

I didn’t, and I am now home, and the nice taxi driver helped me load up all my crap back onto the chair and then my housemate the Pilot brought in my chair and the mail and my backpack and the exciting packages from Amazon that had come in my absence, and talked with me to make sure I was okay alone, and brought me a soda.

I am very happy to be home in my own bed.

I’m so happy to be in a place where I can go to the bathroom without being on public display and without going through many heavy doors. I still can’t put any weight at all on my right leg. But I can crutch myself like 8 feet away to the small bathroom. I have internet from bed and I have my cell phone, so I am very comfortable and happy considering my leg doesn’t work and hurts a lot. Later… a hot bath. Zond-7 has a cold and an uncertain kid-pickup-schedule so he might not be able to rescue me from alone-ness without herculean effort. But he will come tomorrow. If I need help tonight there are tons of people I can call.

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