Posts Tagged ‘swimming’

Hello from the surface of the motherfucking sun

It’s ONE MILLION DEGREES in my house. I have iced my head and watered the pavement. Can’t think, can’t move! Ill-feeling and cranky! I need an IV and a salt lick. No, fuck it, it’s brain in the jar time. *Schloop* (removes brain from skull & places into nice cold jar with internet connection)

We went out for pizza – Moomin says he is good at pinball – I agree as he kept scoring 5 million more points than I was able to – he’s fast on the flippers. I get all James Dean reckless and end up tilting.

Long good day working, helped out Squid a bit in the corners, could not muster up the energy to do more tonight.

It has been weird to have Rook act the stay at home and to come across him earnestly filling out forms, doing all the paperwork, magic food appearing in house and suddenly all cooked and stuff, the bags of things to take to donation were whisked away, it is eerie, pleasant, and guilt-inducing all at once, along with a very unworthy feeling of NOW YOU TRY IT THEN, HA, which I wish I didn’t feel. Actually my gratitude at not having to fill out those school forms knows no bounds. Just not having to *track* everything… Is it really okay? I find that I really, really, really love it when people make me food. Who doesn’t love it? But, especially now. It makes me want to cry. It always seemed to make sense for me to be doing all the form filling out and insurance-company-calling and crap, but I can’t remember why, even when we both worked, and both had the same commute. Maybe I need to let go of that for a bit. And putter in the garden a little, and focus my house-labor efforts on getting rid of books and things.

I suggested going to the beach tomorrow but that is kind of a dumb plan as I am not prepared at all – there is no beach food – I have no gas – I am physically in bad shape – The thought of wheeling myself down the long path fills me with horror and pre-exhaustion – But I felt bad that I have not done anything special with Moomin and it seemed like a good idea to get us all out of the house. Really, I would like to stay in bed until it is too hot to bear, and then maybe just go to the library. Can I change the plan? I already invited his friend to come… maybe just a regular play date instead and i could sit and play a good long board game with them, and have ice cream. Then fall back into bed. Much more my speed. I meant to do a board game thing tonight, but instead, pizza, books, and pinball. Then I collapsed into bed & computer.

Sunday will be swimming at Squid’s house. Ordinarily Zond-7 would come down for a bit but this week we can’t. I will miss him at the pool party. must – remember – not to drink too many lemon drops – at Squid’s house –

Cats – get off me – you’re sweaty, enormous, hairy animals – it is too hot to cuddle – Why do I not have several box fans in this house, and a minion to gently sponge me with ice water or lemon-flavored vodka –

Read more of the Crypto book, got to the bit about Clinton & Gore, their wonkiness, and the Clipper. WTF! And read a bit of Flora Tristan, and the first Narnia book (which Moomin is about to read) to imagine what Moomin will think of it.

Getting that crazy late-night feeling. Rook is snoring and peaceful. Cats as i mentioned are all over me. I want to cry for no reason and read snippets out of books and jump around and write crazyass poetry and drink some tequila and type till I pass out into this blog, quotes from the most beautiful books, complaints & celebrations, melancholy & nostalgia for bloggings-past. I’d like for the oddest & most rare & true things to come out of my fingers and come to you, in some sort of moment of little bits of paper flying around like the illustration of salome with birds in the comic book version of Wilde’s play. I’d like to do FABULOUS THINGS and just pretend to act like they are usual. I’d like to throw things up in the air and have them, with no explanation, NEVER COME DOWN, and for no one to act surprised by this. Long streaks of rainbow paint coming out from the heels of my converse as I skate around over the pavement, painting out comet-tail footsteps that melt & dissolve into the cement. It’s just what she does, that badgerbag chick over there. *shrug* If even that much notice.

And so to bed.

Uneasy need for rest

I spent yesterday in bed writing drafts and abandoning them, watching feeds, absorbing too much information. After the long intense weekend, complete rest might have been a better idea. Last night in sleep and waking I scrabbled an endless round of anxiety dreams about airports, schedules, missed trains, my wheelchair being taken away from me, being lost in cars, and stressful arguments. I don’t want to get out of my pajamas. My mom and dad are here, planning to take Moomin to the giant complicated indoor playground-inside-a-swimming pool in the East Bay, meeting Minnie and her baby, going back to her house, so I also feel torn and sad and want to be with them and that I am letting my family down, my child barely missed me, I am not needed, I did not organize, I didn’t invite, I didn’t cook or shop or prepare, I’m not participating, I’m not paying attention, I’m letting the moments slip away.

I made hundreds of shallow connections, but not enough deep ones. Nothing felt like it bore fruit in the moment. But, it will, and I trust that. Instead I was a conduit and a connection point. I didn’t do anything, make anything, fix anything, build, create, even in my imagination it all remained inchoate — but I took the quick evaluations & shallow connections and said here, you talk with her, you need to know this, read this, are you aware of, and people lit up as they connected, as if I were a telephone switchboard. If I am invisible in that, I have to still be satisfied with my role and abandon my ego. It is hard to be visible, but invisible. A sort of conspicuous mascot, seen but not known. I could cry on the shoulder of everyone I met but did not get to know. Is it possible to love everyone? Maybe, but not to love them right. There is too much, there are so many of us, I am starving to know everything and everyone.

Oh poor me, a weekend of hundreds of people telling me I’m super awesome!

Ugh! But am I… I’m so not… they don’t know… Is it enough? Am I enough? Can I ever do enough to be satisfied with myself? Can I at least finish a few projects, follow through on anything? How do I know that people like me for the right reasons? What if it’s all flash and show and surface, and false?

Where is my discipline?

What if I am making all the wrong choices?

But back in real life and out of my theoretical identity tailspin:

Aside from catching up with some regular work, I want to continue trying to synthesize this weekend and some general thoughts about blogging, gender, class, and digital divides. And I’d like to look forward as well into planning some things to do or suggesting directions.

I have an awful lot of blogging cards to look at. Blogs to consider and link to. Notes from conversations to write up. Thoughts to gather and express.

Meanwhile the book project is on the back burner, a constant torment and source of guilt.

I am comforted yet perturbed as the hypothetical of “at some point in next few years Rook might switch career tracks and have a break” becomes “Now I support the family for a while and switch roles myself.” Can I do it? I’m a little scared. It might be a very good thing in many dimensions.

I might need in a big way to migrate all my blogs back into a single one, clean up this one big time with proper tags and categories even if most of the categories are nebulous like “Long Philosophical Rant Mixed with Daily Life and the Juicy Bits Buried Baroquely”. Badgermama and Composite feel so cramped and sterile and thank god I still ramble on at length without trying to narrow the focus here, where I say whatever the hell I want (barring a couple of limitations which i will keep trying hard to think of as Tact).

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Tell It Like It Is award

I’d just like to take a moment to appreciate the bloggers who do not hold back and who say what they’re thinking. I used to do this much more and then I got all boring and square and circumpsect.

I’m thinking of giving a totally unofficial spontaneous blog Award! Complete with a little badge!

The “Tell It Like It Is” award!

Right now I’m looking at you, Totally Rosalie and you, Just my Life! You crack me up! Just My LIfe, I will totally never forget your whole deal with your Mom In Law and the swimming pool and also how your awesome husband comes home and falls asleep in the damned recliner and snores and you have to all tiptoe around. Also, “busier than a cat covering shit” is my new favorite expression. Seriously I read your blog and tears leak out of my eyes as I laugh hysterically and you are the blogger I most want to do tequila shots with as we bitch about all the stuff in our lives.

Now I have to get it together to create a funny little badge thing for people to stick on their blogs!

A city’s soul and a fat rant

For the next three weeks I’ll be traveling around! London, Brussels, Budapest, then London again. See you at Global Voices / Open Tech ! I’ve packed really well for the trip!

My tiny computer is very cute! I am still setting it up, but now it has functioning wireless and ubuntu on it! I described the process of installing eeebuntu on it!

Here’s a very lovely blog I came across thanks to paraleipsis, beautiful & inspiring & clean & messy all at once, really a poet of vignettes & cities:

One of the things i like about this city ( and of course i didnt like everything, you can see in many ways how spoiled many americans are) is that being direct is a quality, its just an arrow that goes directly to your heart, somethimes you say ouch!! now THATS a quality, If you are like that you skip many many problems on the way. They have created the city of either you are strong, direct and fast or you are dead, and self consciusness is high .

I liked the photos and thoughts on all those rusting things, and also when he goes to be a fireman for one week in a fireman class and thinks, Fuck Art, this is much better.

Every once in a while I come across a stranger’s blog and fall in love a little bit. Today I’m in also in love with Joy Nash and her Fat Rant #3:

I have a big juicy blog crush on justmylife and her dilemmas over her mom in law and swimming in the pool, and how her husband comes home from driving his concrete mixing truck and falls asleep in the recliner, and her potty mouthed bitching which I totally identify with and do all the time about every detail of my life complete with detail and overanalysis. There is something about the totally honest way she writes about the complexity of her extended family and daily life that I really admire. I think she is the secret-blog-friend I would most enjoy hanging out with in real life of all the hundreds of blogs I have seen in the last two months in my new job! She makes me miss Texas a bit… though I don’t know where she is…

Today in Actual Real non-blog life I dropped Moomin off with my friend SuperT (You remember her from WoolfCamp?) and her son Hamster; I worked like a dog; I then had a nice gossipy lunch with Sarah and then we had a supposedly 1 hour meeting which was so productive we just kept going for several more hours. We do work well together! And she is a fantastic project manager! We were on the same wavelength or something and just cut through all sorts of confusions, design issues, usability, and all that stuff.

Then I drove back hauling ass through massive traffic to pick up Moomin and I got to hang out a little bit with SuperT! I gave her a cd with mashups and I showed her how to make music playlists in iTunes and how to organize bookmark toolbar in Safari! A little computer help is a birthday present too! We sat and sweated and talked about our lives! I miss hanging out with her.

And of course I am still completely fascinated by the Obama with roses and unicorns. I would totally get this airbrushed on my truck if I still had a truck. Hello! He’s ejaculating roses! He has sparkles! What is he holding in his hand, I can’t tell?

Earth Day festival

useful ramp into deep gravel
Originally uploaded by Liz.

The festival was just perfect in the ways that Deadwood town festivals always are – small, well organized, lovely, full of children, with music & food & crafts & art displays & oozing with good intentions & civic pride, sponsored by C4rgill and such companies with mild creepiness. (Their “we lurve nature” brochures remind me of the PR spinmater in “The Fountain at the Center of the World”.)

A band called the Banana Slugs played funk, rock, zydeco, catchy tunes with funny lyrics about the Bay and marine life. You have not lived till you have eaten some PTA chick’s homemade turkey sandwich in your new pink tshirt that has a whale wrestling a giant squid, while the crowd around you roars the refrain “Estuary! Salty and fresh” and small children shake their butts on the lawn. Then everyone lined up to go in canoes, and pet some sharks and eels, and sieve mud to find the tiny worms and shells, and there was a slide show somehow connected to Al Gore’s global warming thing which I did not see the slide show but apparently there was stuff about melting glaciers.

My heart sank when we drove into the blocked-off parking lot next to the cluster of low buildings. For the parking lot was gravel and all around the buildings was gravel. There were some concrete paths half buried in gravel and some wooden walkways. But, I was in for hours of trying to move around. I had not called to check about access. Still, I’m glad I went and didn’t miss it.

I had some moments that were nice where I was like “yay family having fun” but, I could not get to most of the places where Rook and Moomin were, at the times they were there, because of access and crowds (for example there was no way i was going to get to pet a shark with all those people shoving me… bags in the face…people leaning on my chair… I ran over a lot of toes in that aquarium building and then just went to its sidelines in complete disgust) And, so I had a lot of those “parked” moments where you get to sort of watch other people having a nice time and you experience a sort of disabled-person compersion as you enjoy their enjoyment (which is halfway just parental enjoyment of kids doing their thing). I had a nice moment when I wheeled up onto the pier and managed it competently and wheelied over the rough patches and the wind wuthered through my hair and jacket. (Estuary! Salty and fresh!) I felt very alone-in-a-crowd.

Three separate people were especially offensive. I guess I have not been going out to unfamilar places/crowds that often, because it felt like it’s been a while. One woman blessed my heart. Another one said kindly that she “just wanted me to know that she thought I was very brave”. A totally scary tanning-booth possibly-drunk lady with her grown up son with her (looking like he was gonna die of embarrassment) caught my arm as I wheeled past and said “You know, it’s good that you come out. You’re making SUCH A DIFFERENCE” and something else I have mercifully forgotten, but it was so dripping with grossness that I sat there and stared at her with my mouth open and had no witty retort.

A lady tried to push me at one point and I could see her recognition that things were rough for me though she could not figure out why, so I went back after a while and asked the volunteers if someone might sweep the concrete walks free of gravel. That helped. And I went over the giant pit of gravel in the photo here (so tantalizingly leading to a ramp) a few times (in fact, too many times) popping wheelies with every step (step??) so that my front wheels would not sink down.

The bathroom was far, far across a sort of narrow corridor of gravel and logs and there was just no way. If I had brought both my crutches and not just one, maybe.

The nicest bit, besides Moomin petting a shark, was that we ran into my ex girlfriend Nada and her partner & their two kids! It was so, so, good to see Nada and I clutched onto her and felt like crying somehow as I had been feeling very alone in the crowd split off from everyone. Then, it turns out, I had completely forgotten that Nada’s partner is a neurologist at Staffnord, a resident. I mean I knew she was something medical but have not seen her for a long time… since maybe Hurricane Katrina or so… as she was always working so I only really hung out with Nada. Well, she pretty much started banging my kneecaps right there and drool was coming out of her as she looked me up and down like she was a dog and I was a giant hunk of meat and said things like “Goddamn it I’ll do your lumbar puncture myself, it’s easy as pie.” “Uhhh can I have a valium for that, because, terror and pain.” She said the Movement D1sorders clinic had just or was just hiring a ton of awesome people and was all overhauled and I should send her all my documents and history and MRIs and junk. As she asked me questions and I tried to explain the whole crappy story it was a bit intense for me. I admitted, I ahve been avoiding going back to my neuromancer because I feel like he fucked up and misdiagnosed me, though it happens to everyone really – but mostly I dont’ want to go because I just couldn’t cope, emotionally, with more doctoring and tests and running around. Besides, I am getting better or at least not worse. I also confessed (at her questions) that indeed lumbar punctures have been mentioned more than once and when they do I have just not gone back because I am scared of it. She talked of the plexus and de- and re-myelination. And that, in some ways, it is not going to matter what the diagnosis is as long as it is not an immediatly terrifying one like a tumor or ALS which it isn’t, and the real thing to pay attention to is, what feels better, and if I am doing better slowly, then, I am doing things right. (That is how I also feel, and I think it is true.) I felt very guilty over not going to phys therapy regularly or swimming. (So much like trying to explain to the dentist why you don’t floss enough, but worse.) At one point I was really overcome with her kindness and almost cried, but I caught it. “I’ve tried to manage things as best I can, and mostly do, but, it’s hard to manage it right, when you’re in it.” It was kind of her to say she understood.

I made everyone leave because of my exhaustion and having to pee. My legs were so stiff, I think from the effort of the wheelies, low back hurting a lot. I wish I could sleep, or cry and be comforted, or both. I guess I need to go back to the doctor and then go to Staffnord and start all this mess up again.

Rook fell asleep immediately when we returned. I read E. Nesbit and lay in bed doing slow leg-therapy things. We have a role playing game in half an hour, can i pull myself together to sit up and be social?

A day of doing everything superwoman style

Today I blogged a bit over at 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!”

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.

Long slow weekend incoherent books resolutions

I stayed in bed rather a lot the last few days, since the storms hit, venturing out for noodle soup with whump and ska-rat yesterday, and to SF to Zond-7’s house today & back. I’ve been hurting a lot and a little depressed maybe, or emotionally shaky, or something. Often i’m in such heinous pain I whimper by accident. I’m in that state now, embarrassing. I dont’ lie around sighing or acting hangdog with just any pain. instead i am here typing and acting normal as possible but then whine out like a dog with its tail stuck under the rocking chair. I swear if that thing had just happened in YOUR ankle you’d sing out too. damn.

Anyway over the weekend I took out a giant wad of poems and worked on them, and arranged them, and started messing with layout, and got a little bit further into an artistic funk as I looked at the little book of poems (“short”) that I made in 2002 and fiddled with its layout and thought about reprinting it and sort of loved and hated the old poems in the way you might too if you write something very overthinkily until it’s burned into your brain. There they are, they’re done, I’m not going to burn them or shoot them or anything — but I’ve passed them by. I fiddled with the arrangement of the poems in another book of poems, and then the enormous manuscript-thing that might should be broken up into two. This, sort of in the background of cleaning things up to have the house full of people and then cleaning up afterwards, so if I seemed abstracted I probably was… Then had a splendid time on the couch (forsaking the baclofen and taking a spacey-outy muscle relaxant) with z-amber and cyn, ranting about the hugos and then making a femsfaward LJ community as we looked over the list of eligible books by women and realized how many of them we hadn’t read, and resolved to read them and review them and to ask other people to write up the ones they’ve read. We got very punchy & giggly and had kind of worked up to it by cyn coming into the bedroom and telling me ominous ominous vague thigns about Blood in the Fruit and then we struggled to outdo each other in praising the 1st three Marq’ssan books & which parts of them perturbed us and led us into self-criticism (I think I cried randomly for several days as I thought about the ways I was like Zeldin with her shreds of privilege, and then later again as I thought about the bits of me that are like Weatherall. Oh, house of horrors!) And back to my own poems sometimes as I feel sort of small and down, needy and cranky and insignificant, I gawk at some sprawly grand scrawl of poemyness and wonder how I wrote so big, or so biggity. I like it, but it’s odd for that voice to be me. But when it is… it’s the best thing ever but it’s being up high and unsustainable, somewhere that I have abstracted myself to, to where I think Maureen Owen would approve and be leaping around from building to building in the Gotham night with me like superheroes cloaks billowing out – but Alta would roll her eyes… earthy hippie goddess on the other shoulder… and tortured ginserouac clashing with cid corman somewhere around my neck, like lice scurrying around … glass bead games as I position carefully in tone and branch out and attempt to grow an architecture suddenly in the middle of someone else’s poetic driveway…

Rook just caught me crying and offered to move my leg around but it was too painful. I’m having trouble with the weight of blankets which sucks becasue I’m cold. the vellux blanket is good for the foot part because it’s so light, and then the electric one can go across my legs. The bad parts right now are my big calf muscles, and the smaller ropy ones next to them on the inside, especially near knees and ankles and then there are othe rmuscles doing stuff in places I didn’t know I *had* muscles. The bottoms of my feet ! Clearly one has muscles there but they aren’t supposed to DO ANYTHING while you’re lying in bed. The thing that just made me yelp was some kind of thing with my big toe leaping up, but….leaping up somehow against something very hellaciously tight up higher. So in trying to pull back against it I burned some other muscle. I wish Tom had not been such a drunken creep pawing at me, because he was the best at un-spazzing my legs when not out of his mind. The feeling is awful; it’s the same awfulness i had during transition in labor, where it felt like my leg muscles were ropy snakes at war with each other.

the ska-rat showed me pictures, in 2nd life and without, kids, family, old friends, fascinating, and paintings. he sweetly left a painting of the view out my study window and i taped it next to the window so that I can have the refreshing mediation of reality always there before me. i like the movement in his drawings and also the utopian glow of the way he paints strip malls, backyards, traffic lights, and suburban swimming pools, infused with grace and mystery. I worried that the slow pace of my life appalled him. Yes, it’s relaxing and I believe it, but, bascially, if you want to hang out with me at the moment it’s at the cusp of sublime and boring. I’m not hopping onto my motorcycle to tour the big city… not till the sun comes out.

So instead of a game we had a little sparky cabal meeting. (Since I took a pain pill I was chirky enough to sit up and be social instead of brooding over my legs in bed.) now part of the problem for me and reading patterns is that I read whatever free piles of books come to me. I’ll change that and start reading new sf by women that comes out as best I can, especially if it comes already recommended!

I miss Zond-7 and wanted to stay over, but Moomin has school tomorrow and rook starts his new job, and plus it’s his birthday! hey! I thought I’d make a cake from scratch if I can manage it. Tues. I’ll go up to the city and then be there Wednesday for my scary but longed for appointment at the ALS clinic.

The kids were lovely today with only minor moments of squabbling. Really it’s amazing how they will just play for hours in elaborate pretending games. Even Peanut was in on most of it though she’s younger. I talked with Moomin a bit today about it being rough being the oldest in a bunch, and asked him to go easy and not to scorn them for a) not knowing somehting b) not being always able to handle their emotions. We talked about who we know with virtues and flaws.

In the pho place ska-rat asked us what we would go back and tell ourselves 20 years in the past (when we all first knew each other.) I think whump’s were somewhat practical financial advice. (Buy *** stock!) and mine was to tell myself that I was doing it all just fine and to go right ahead. Perhaps with a side note to see a neurologist in the next couple of years. But what would that 18 year old self have wanted to ask me! I suspect some things about love and happiness to which I would have plenty of answers, all along the lines of “stay foolish, you’ll enjoy it.” But probably she would have had some warnings and tellings for *me* not asking for mine to her. “Don’t forget this! Don’t forget being like this! Don’t forget me, and this feeling and this other moment, this complexity, and this very beautiful thing! They were real! Don’t get old in that way that makes you lose your fucking heart and soul!” (I won’t… she wrote it all down very thoughtful of my well being.) Ska-rat did not report but clearly had some things in mind for his callow-youth-former-self.

Squeaky wheels

IN the last few days I had a very peaceful relaxing time, read, took notes on The Orphan’s Tales, played a lot with Squeak and eToys images (the Smalltalk based stuff that runs the OLPC), eaten leftovers, blogged rantily in private and wrote stormy emails I’ll never send (to and about my in-laws) and puttered about with kids and presents. Squeak dazzled me for a while and I still feel its pull and yes, it sucked me instantly because I love flailing around to investigate programming environments like that. I tried for like 6 hours to put moving eyes on a BlobMorph. Then looked up and realized that not only did I still not know how to do it, but if I did, it would be awfully useless, no matter how much fun I have along the way. Anyway, probably better to go back to Python and the fun of pair programming with that…

Zond-7 got me SpokePOV kit, better than hokeyspokes but will be a couple of days of electronics project for us to really do; we talked about ideas with wireless or bluetooth so that you could text your wheels… and ways to bling out my exoskeleton/chassis with gumstix (tiny tiny linux boxes) and things like that. I am walking limpily around the house sometimes without crutches but then my leg seizes up again.

I went to the neurologist today again and we had some more open talk about things, which was very good and interesting but also very difficult. Each time i feel like I am swimming more and more bravely into it. He talked frankly about going to the clinic and about how he thinks als/pls was a spectrum really and basically i should not freak or be surprised if I “flunk” my emg and get reclassified as ALS since clearly everything is long developing. He was strongly encouraging me to up the oral baclofen a bit faster and thinks that it will control my spasticity and thus I’ll be walking much better again. We talked about the years of recovery and then of walking much better, and he said the clinic will be interested and will also know more about that, but he thinks that it is that there is scarring (the “sclerosis” but that mine is still fairly minimal, and that is why it is so much better when the spasticity calms down. and the long gradual recovery kind of a long rehab path or gaining strength without triggering off nasty spasms. We talked more frankly as well about swallowing problems. I showed off by going in on my forearm crutches. Now I’m hurting. It is harder to do everything in the cold.

I am doing the bicycle thing for PT (a small set of pedals with no resistance on a low frame that fits under a regular chair). it hurts. I am a bit eager for the spring assist ankle-foot orthosis which sounds like it will hold me foot in position. The neurologist also talked about how spasticity works and for example that my gait is sucking because of spastic hip muscles (i forget what he said about extensor and flexor… doh!) and that the muscles in my tibia/shin are contracting but so are the back ones in my calf and guess which one is stronger and about 4 times as big – the calf – so that side wins and my foot gets pulled downward, and my tibial muscles are fighting with it every time I need to flex my foot upwards.

Pedalling spazzily

The physical therapist was super nice. She said she’d read any papers on PLS/HSP that I wanted to bring in, and listened to my whole diagnosis story, and thought that spasticity made a lot of sense with what she’d seen of how my legs work. She did some stretches and tests. I sat on this balance cushion and pedaled haltingly on this bike thing which I could do sitting back in a regular chair. She recommended I buy both of them and do PT on them daily. Sounds a lot easier than swimming daily.

She explained that being tired could set off spasticity. & that with neurological problems, pushing myself hard might not be the best thing to do. We talked about the fine line between pushing yourself (which is necessary) and pushing too far. & a bit about the importance of rhythmic motion and central pattern generator activity.

When I talked about how I think of things on the pain scale and disabilty scale, she didn’t think it was strange… but told me to add in “RPE” or rating of perceived exertion: not whether I *can* do something or not, but how hard it feels to do it. OMG! That makes so much sense and I think it will help me to stop beating myself up for wheeling instead of walking sometimes when I think that I *could* be walking but it would be hard, tiring, and would destroy me for anything else that day.

She also talked about how I’m moving my legs slowly not because it’s impossible for me to move quickly, but because I’ve figured out that moving slowly hurts less, while moving quickly or at a normal pace sets off spasticity right away. She demonstrated. and I could feel it was true while pedaling on the bike. I thought also while pedalling about how, even when I was riding my bike in recent years, I would fake it with my right leg and my left leg was doing most of the work.

As I think of everything in terms of spasticity, I consider how even at 16 or 17 I was sitting down on the floor any time there was a time I’d have to stand in line. Even at the bank for 10 minutes, I’d be sitting on the floor with my book, because it hurt my legs to stand. Museums also kill me not from the walking around so much as the standing and looking. And in classes or other things like that, even in high school I would make deals with teachers that I’d behave perfectly well and do my work but that I needed to sit on the floor in the back of the class, so that I could stretch my painful legs. I think of all that and consider how un-normal it is. It’s not like I had any way to tell what other people feel or how they perceive pain. I just figured “My legs get sore and it helps them to sit on the floor and stretch, so I will.” It’s not like I cared if people thought it was odd.

For example, here at this Tiptree reading last year, I’m sitting on the floor not to be odd or anything, but because my legs hurt.

I will add that it is the reason I tend to sit in the back of the room in readings and classes and any sort of audience. It is because I know that I fidget my legs constantly, and I don’t want to be stared at or be distracting for people, and in the back of a room I can stand up or sit or get on the floor if I need to. I’ve always done it, and not cared what people thought (other than not wanting to annoy them) and now I have an explanation that other people can understand rather than “PUNK RAWK dude don’t make me conform to your silly SIT IN A CHAIR philosophy.” Instead I can be all like “My rare neurological disorder trumps your desire for me to behave in a orderly manner, muahahaah!”

Anyway, back to physical therapy!

My plan is to do those exercises daily, go to the pool at least once or twice a week, and go to PT once a week at a regular time, early Thursday afternoons.

The PT also recommended a spring-assist AFO on my right leg to help my gait. I guess the spring pushes off for just the bit of walking that’s hard for me to do. A thing I have explained to like 5 doctors who never listen *and* to this same PT multiple times with demonstrating, but now she’s looking and not just going “so, your back is hurting a little?” NOt that I have any resentment stored up… no… that wouldn’t do me any good. This one in black looks like what I need. I hope the AFO is customizable in some cheerful amazing way like my awesome folding forearm crutches that are rainbow metallic glitter colored that will come next week. Note that Spring-Assist Ankle Foot Orthosis spells “SAAFO” which must be a good omen.

Optimistic mood fueled by new prescrip

Now that I’m a tiny bit high on baclofen it occurs to me that I’ve done a lot this month. It’s only been a month since the horrible nerve conduction study that left me in so much pain. (It seems like years.) I spent a bunch of that time seriously freaked out and kind of weak and wobbly and not always very able to take care of myself. But, in that time I have been for a ton of doctors and tests, difficult though that is emotionally. I managed the whole ramp and door building thing. I’ve been on the horn with insurance and wheelchair store and many doctors and physical therapists and my work. I’ve read a ton of information about neurological disorders. I told work and BlogHer that I had to back out of my commitments for at least a month, which I think was unusually responsible of me rather than flakey as I sometimes fear it is.

Meanwhile, I wrote and blogged. I’ve done a bunch of housework, and have learned to do laundry and very-easy-cooking and dishwashing from my wheelchair. There was an awesome high point last week where I threw things away.

All not too bad for just a month.

What I register most strongly are the moments of pain, fear, panic, exhaustion, and emotional neediness. I feel awful for not swimming every day, and for not being a more active parent, and not working, and for other things that have been sliding like publishing bits of writing and stuff I promise people to do and then procrastinate.

But seriously as I look back at it, it seems like I’ve done very well. I’m writing this so I can keep it in mind next time I feel like crap, which knowing me will be about 2 hours from now when I have a micro-ephiphany that I haven’t written the Great American Novel yet and my dishes are dirty.

Amusing note: I just realized that my mom asked me what I wanted for christmas and I said that I wanted these without a trace of self consciousness or thinking of this or this but now the connection occurs to me and I’m laughing hysterically. How vile!