Posts Tagged ‘science fiction’

Why I love depressing books

As a kid, I spent a fair amount of time in really small libraries. There wasn’t a lot of guidance. I never met the magical book lady with 20 cats and secret magic power who would show me the best books ever. Well, not until my piano teacher in middle school turned me loose on the science fiction paperbacks in her attic.
So I read pretty much anything, but kept an eye out for the special shelf in nearly any library that had the Caldedott and Newbery Honor books. I didn’t really differentiate between them. Those books that said AWARD and had the shiny metallic official-looking stamp on them!
A few years ago it struck me how depressing they all were. How many books about brave children struggling through the Great Depression and the Holocaust did I devour? A LOT. I think I got addicted to their atmosphere of serious angst and their heavy handed morals.
So I was a little bit amused to look at this year’s winners and see that they include:
- How I Learned Geography, where a young boy is mad AT FIRST when his father brings home a colorful map instead of some bread. I am sure it is good… yet I kind of feel like I’ve read it before, somehow.
- A book of poems about Cuba’s struggle for freedom. Do I even need to say more!?
Oh, ALA! I totally love you. Your respectable honor books sustained my revolutionary soul for so many years! I can’t wait to go to the library and spend an afternoon reading the entire “for young adult reluctant readers” award list. THey will be depressing yet uplifting, and won’t be about middle class suburban white children, I have complete faith in that, and are not meant for middle class suburban white children (though I was one) but are meant to be un-boring to everyone else. I wonder how far they succeed in that?

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Call for contributions: WisCon Chronicles

HEY Y’ALL. I am editing this book. Email me or IM me at badgerbag8 (AIM) if you have ideas and want to talk about it or have an idea you’d like to write about.
WisCon Chronicles 1 and 2
Call for Ideas and Contributions
WisCon Chronicles Volume 3 – WisCon 32

Were you at WisCon 32 in 2008? Aqueduct Press would love to hear from you with ideas and materials for Volume 3 of The WisCon Chronicles.

ANY panel, event, or paper you’d like to write about is fine.

Here are a few that we’ve noticed people talking about:

* Maureen McHugh and L. Timmel Duchamp’s Guest of Honor readings and speeches
* Women and Hard SF
* Elves and Dwarves: The Racism Inherent in Fantasy
* Fanfic and Slash 201
* The Battlestar Galactica panel
* The Eclipse One Cover Debate
* Not Just Japan: Asian Science Fiction and Fantasy
* Writing Working-Class Characters

We’d also like to see writeups of your hallway conversations: What fantastic discussions did you have in the interstices? In the hallway, in the lobby? At parties, at dinner, in your room, or online?

If you were at WisCon and would like to participate — to offer ideas or to submit an essay — please get in touch with us. Don’t be shy.

If you were blown away by a WisCon panel that we haven’t mentioned and would like to see its ideas expanded upon in The WisCon Chronicles, Volume 3, please let us know. Tell us the name of the panel, which participants (including audience members) most engaged you, and what was valuable to you about the discussion. What was thought-provoking, inspiring, enraging, hilarious, worthy of deeper discussion? If you’re interested in writing an essay on the topic or contributing to the book in some other way, let us know.

Please query before writing an article. If you want to submit an article or essay, please email a query or proposal by September 15, 2008. (The earlier the better.) The deadline for the submission of finished essays will be October 15, 2008. We’re looking for essays of 800-3000 words. If your submission is published, you will receive a small payment and a copy of the book.

Feel free to forward this call for submissions!

Thanks,
Liz
email ideas and submissions to: liz@bookmaniac.net

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Thoughts at the beginning of The Hostile Takeover trilogy

A hundred pages in to The Hostile Takeover trilogy I have the basic idea of what’s going on. Cast of characters:

* Dmitri who is super super old and lives on Mars and has lots of replacement organs.
* Ambrose is his cyberslave Jeeves. If you get robot body parts you are no longer human. Oh no!
* Klaus Dacham who is EEEEEVIL and whose mom Helen died. Head of TEC which stands for uhhhh The Evil CIA, or something. Sucks the blood of kittens.
* Captain Kathy Shane, interstellar marine in the Confederacy. She’s tuff and has a cool punk haircut.
* Dominic Magnus which is a pseudonym and who killed Helen and who is on Bakunin the anarchist planet. Used to be in TEC. Started GA&A megacorp. OMG has robot parts. Stares at self in mirror a lot. Gothy.
* Tetsami who is an industrial espionage superhacker and rides a flying motorbike on the anarchist planet. She has a cool sexy haircut.
* The mystery assassin on Mars. (There are hints in a couple of chapters to who it is and how/why.)
* The AI (s) who have their own mysterious motivations.
* We will not “spoil” things for you by pointing out that of these characters some of them might be BROTHERS OMG MAYBE EVEN TWINSIES!! Angstorama!

So far my main thoughts are,

The anarchist planet horrible paladin church with TV game show killings and ransoms are AWESOME and funny. There is a good bit of Tetsami and Dom discussing how the socialist anarchist atheists who founded Bakunin’s colony would be rolling in their graves at the Techno Paladins. The paladins run around in shiny cyber armor rescuing people and slaying criminals. Or they stun everyone and take them hostage to be on their holo tv game show where the audience phones in money to kill, ransom, or perhaps maim the rescued or the criminals. This is great – you can totally picture it happening on the anarchist planet.

I want to write funny bits where Dom is staring at himself in the mirror thinking of suicide because he’s half robot and stuff (as has done already several times in 100 pages and will clearly do again) and then some horribly funny over-gothy sex happens. Or his thoughts as he broodily contemplates his robot dick in the mirror in all its throbbing cyber glory. Slash with the *cough*brother*cough*! Or a scene where he shows his partner in crime his “hardware specifications”! Maybe it’s just me. I’m waiting to see if the author will actually go there himself to write a tacky robot sex scene. Why waste ink if it’s already in the book?

About the scene where Dom is being attacked by a gang of thugs. The writer takes the time to set up all the thugs as separate people with different haircuts and outfits and little personalities like roleplaying game NPCs and then they all get SHOT DEAD in half a page. It has a timeless trashy-beautiful quality about it like the scene in a war movie where the guys in the submarine or the trenches all have cardboard personalities set up so that you can appreciate the pathos of their deaths. But here, more so that you can feel you are in Pit Fighter kicking the ass of Slightly Futuristic Stereotype #5 with an eyepatch, and remember him as a different death than Slightly Futuristic Stereotype #6 with the mohawk. In Hostile Takeover so far, this happens a lot, part of what makes it satisifyingly trashy.

One more thing. Like most science fiction books that think out a politically and culturally different far distant future there is not a very good gender analysis. On the anarchist planet in theory everyone has these giant fucking laser cannons and motorbikes, or whatever, and so why do we still have some kind of fundamental patriarchy such that Tetsami thinks instantly of her main value as sex work? What the hell? Gender essentialism I guess. If you have a society where an industrial espionage black ops hacking expert who has survived against all odds by being incredibly tough and having a giant motorbike and blaster bazooka things or whatever she has in her arsenal, why would your main selling point to ransom yourself be to fuck the guy who ransoms you? (Minor spoiler: She doesn’t – it is just her big plan. Don’t worry.) Why wouldn’t you be like OH HAI I HAZ MAD SKILLZ AND CAN FIX YOUR COMPUTERZ. Why assume it would be a man who ransoms her and that anyone (male or female) would care to pay that much to fuck her? If that’s what instantly springs to her mind it has all sorts of weird implications that don’t seem to really hold water – it would mean women are terrifically oppressed and disempowered in Bakunin’s anarchist system (for some strange reason) and that also somehow, there aren’t enough prostitutes (which there would be if women were that disempowered) so men are so desperate to fuck this one hacker chick with a hot haircut that they would pay a king’s ransom to do so. Also, it’s idiotic that she is made to say it sort of bravely like it would be difficult and the other dude was shocked and impressed that she might just square her jaw and go “Because I’d promise to fuck him” like she should squeal at the thought with maiden delicacy and horror and he admired her pragmatism. Dude…. just NOT. All you have to do is regender the scene in your mind, and the politics and culture don’t make any sense.

Zond-7 has reassured me that no one gets raped and the situation of women in the book is balanced and not what one might expect though there is some denial of agency which is then later rectified. We’ll see! I noticed in the Paladin game show the audience votes to fry a captive who was caught “raping a teenage girl” so I suspect rape culture will pervade this sf novel – so disappointing – you can imagine interstellar travel, yet you think that patriarchy is permanent?

I give a huge amount of credit for the entertaining setup. I love the horrible yet still attractive anarchist planet! The anarchists are sort of the good guys! That part’s great so far.

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Pastries and sidewalks in Belgium

New blog tagline, “History of Europe through sidewalk curb cuts and things available in cafes” since that is clearly what I’ll be writing about.

I expected the tunnel under the British Channel to be different somehow and momentous rather than just a tunnel you barely notice even if you’re looking. It should have some flashing orange lights and enormous stripey caution signs that go “WARNING! WARNING! YOU ARE UNDER THE MOTHERFUCKING OCEAN”. Instead I thought vague thoughts about roadsides, railway right of way and land ownership, property rights, the San Mateo flock of fire prevention goats, eminent domain, ideas of waste and use and exploitation, geology, glaciers, farming, compost, and forestry. I expected somehow that Britain even by the railway would look more cultivated than the U.S. in the sense that the land has been intensively in use for farming and permanent buildings for so long. In other words that there would be not so many vacant lots and fields that don’t seem to be growing anything or providing pasture or otherwise being used by humans to produce stuff. Once we got through the tunnel, France from the train looked a bit more like that and Belgium even more so.

I liked the train station at King’s Cross/ St. Pancras. Giant Quentin Blake cartoon on building as you pull out of the station… (or really as you pull in as it is a “welcome” message). Odd moment when train station guy came up and accosted me and began to order me around. “No… really… we’re just wandering around this mall for a couple of hours and getting lunch… if I need help I’ll find someone and ask” “NO BUT OMG YOU HAVE TO… AND… ” No actually I don’t THANKS. The hostility that comes through is amazing.

We were in first class in the train because you’re automatically put there if you are traveling in your own wheelchair. The expectation though seemed to be for me to be fairly completely unable to do anything. (Stories later.) The train was lovely and comfortable and the food was fabulous. I did feel strongly that the model of disability and being disabled is utterly broken as there were many frail older people or people traveling with small children who could have benefitted from being in first class and having help with bags, etc. when I just would like a bit more ramps and can walk up the train steps myself and even haul my wheelchair after me if need be. So again as with the broken model of AIDS education that most people got (if you are in a “high risk” category of person etc. etc rather than “if you do X then Y”) it is about identification, instead of behavior, action, immediate situational needs. So the identity politics model works for some things and situations, but for this situation, it doesn’t. The Eurostar staff was clearly trained to see “disabled person: this is what you do” but without any thought of “ask the person what they need” or “be flexible for anyone who needs it”. It is wrong and vile to be treated as a sort of pitiable sub-elite. I notice it everywhere but more here than in the U.S.

Hotel – steps, ugh – amusing punch-card plastic door key that I swear I saw described in some ancient back issue of 2600 magazine – room nice – so happy to nap – no wireless in room, extreme hardship – dinner with Zond-7′s Work People, at The Staff restobar (food fabulous, atmosphere perfect) talked of science fiction with G. who recommended the book “Godfather of the Kremlin”.

Morning, Zond-7 went off to the meeting and I tried to work from the lobby (no wireless in room) but the wireless was far too slow for me to even download my 500 emails much less do web page testing or fixing and to deal with Drupal on any level at all. I set off down Avenue (?) Louise recalling various cafes. Everywhere had a lot of stairs and I can of course do stairs but it seemed daunting to do with all my paraphrenalia and then be trapped in the gravity well and I realized that while I can get into a cafe and its stairs I cannot hang out in it all day long when bathroom is even more inaccessible and just the navigation around the cafes I looked into was multi-level as well. I went a few blocks past Zond-7′s meeting building and then realized everything was uphill; tried the cafe right next to it, which was nice but impossible to deal with; gave up and went to the office and just camped out trying to be oblivious that I was weirdly crashing this meeting that had nothing to do with me. (I did not go into the actual giant meeting but I did sit on the floor in the offices outside, ate their food and used their wireless and bathroom.) Oh well! Embarrassing! But I had to! I worked all day. Went back to hotel around 4 when I was starting to fall asleep sitting up. Oh,,, uphill up the horrible curbs and sidewalks of boring diplomaticky financial districty overpriced fashion-y clothes Brussels, it was really hell! I’m sure it’s a nice city… somewhere that I wasn’t! Napped. Read and got dressed again & Zond-7 came back & we went out to dinner at Brasserie Poelaert which was a lovely spot but not really great food. Worth it for the nice spot on the patio.

Our taxi got lost on the way there & we ended up in streets and streets of endless Antiquities and Tribal Arts and Anthropological Antiquities until I felt kind of sick to my stomach. Not like I come from anywhere that can hold its head up but, man, could you put some of Africa back where it came from maybe? OMG. Everything so reeking of wealth. The buildings I had been admiring with their amazing stone work seemed less beautiful and more signposts to colonial and capitalist horrors.

Dinner, I mostly listened and made occasional polite conversation because it was a very Worky Dinner involving what I think of as Global Foods (which I will explain again or link back to my explanation of but it is from Doris Lessing and I use it as my marker of U.N. cosmopolitan elite) and for me not being part of that world (though in my own technocrat one in parallel, in intersection, and perhaps in competition ultimately) to be there was a perturbation. So if you think of the job of that Global Foods job as being, absorption of tremendous amounts of detailed information and synthesis of it correctly and then telling people how to act, or trying to act collectively or in coalition — it is a hard job and very thinky and talky and yet it is difficult for other people to see what the hell you are actually doing. And moments like this dinner are the moments which I see as people being like conduits for information, they are points or nodes which need to intersect and people have to talk with each other. It would be lovely to quantify and analyze and people of course do. But, I feel in those situations that it is best for me to shut up as much as possible so people can get on with talking with each other. I am also vastly entertained by cosmopolitan informational tidbit exchange ie chatter about one’s favorite restaurants in various cities and tips on jet lag and how wearying Travel is but acceptable if the hotels are of the best. (All true. But nevertheless hilarious from outside of the upper class perspective.) I did explain myself and my presence a few times and had some nice conversational moments with GH and S. and the guy from Italy who explained to me about Article somethingorother which means the govt. has to consider open source software before it buys anything and how he is helping linux groups to band together formally in a way that the government can talk with. Interesting! I told R. from Germany about the way campaign contributions are public and were mashed up so you can see who on your street gave what, with google map info. (Shock and dismay!)

Tried to pack. Must get up and go to Budapest at 4am.

I forgot to say about the pastries. They were astonishingly great. Those little fruit sponge cake things soaked in liqueur, wrapped around custard, with a glazed egg yolk thing on top – was it actually a whole egg yolk? It stunned me. Well, Belgium does not know how to build a ramp, or a sidewalk, or have free wireless anyfreakingwhere, but its inner city roadways are very sensible and its food utterly rocks. (Also apparently it still knows how to loot the hell out of Africa and get rich off it, as i think of not just Antiquities but of Chocolate.)

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Book reviews from the past, old computer hardware

Funny but I just got mail from someone who remembered one of my first web sites from 1996 and was looking for it. I went back to check it out and it’s pretty amusing. I stuck to a list of all the books I read with short descriptions. 12 years ago, and I still sound like myself. Bookmaniac does show me that I read quite a bit more in the past and how far my habits have changed.

I started reading Starfish by Peter Watts last night, realized it was brilliant but insanely disturbing, and put it down in favor of the blah-blah exposition of CJ Cherryh’s Downbelow Station. That got me to sleep!

Yesterday in the middle of the day my leg completely conked out. I have no explanation for this, as usual. It was achey in the small of my back, but it wasn’t till I stood up that the intense hot stabby shooting pains and buzzing down the leg fired up. After I’d been walking really well all week! No fair! Then I tried to crutch into the fabric store to get “solar system project” supplies for Moomin. Aaaa! Oh well.

Then, I voted, this time not being too brave with the crutches. On Measure O, increase sales tax for supporting parks and open space, I was torn but finally voted for it because the people arguing against it included our local utter lunatic libertarian, Jerk Hickey. Every time that man opens his mouth I marvel that he ever got onto the hospital board or anything else.

Obama’s speech, y’all! How fantastic was that! The shots of the crowd & him walking through, touching everyone’s hands. Just for laughs I read freerepublic for a bit and then watched McCain’s really horrible speech where he was just phoning it in. I was reminded of the terrible moments of the roboticness of Bob Dole and I have to say, Al Gore’s total incompetence in his presidential race, slathered with makeup, smirking, and irksomely smartypantsy even to me. (Voted for him anyway.) How nice it is to have a competent demogogue on our side for once. More to the point I actually believe Obama will push like hell to shake things up in DC, and make things better for people. Please, a populist leftist…. for real…

Mostly I could not get around last night without both crutches, even across the room or to the bathroom. That really sucked! I think today is the same.

Zond-7 and I laid around and in fact worked fairly intensely. I helped out with some work stuff, php stuff, learned some vim tricks, and then we ended up talking about sf and about computers and went on a long riff of computer hardware we have known and loved and “how i got a particular computer or shell account 15 years ago and how I felt about it”. I particularly liked his description of his first hackery conference (Dutch one) where you had ethernet cables to your tent, his description of setting up the tent for practice in soho square, then the flickering tents all around, the sounds of the river nearby mixed with rumble and explosions of people playing Quake. I described the premises of Cyteen; we talked about Blindsight and Starfish some more; we commiserated over our physical ailments.

(more…)

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My new job at you-know-freaking-where

We last left our blog at Maker Faire and just afterwards. The weekend was so lovely I wish I had written about it in the moment. Time is slipping by me like gliding through water.

I thought over my trip to Seattle some more and the travel coming up and I’ll write more about that soon!

My new job is lovely but more intense than I thought it would be. CAN I STILL WRITE ABOUT THIS? Well, I will anyway! I like all the people (obviously) and it is nice to work for someone who communicates a lot and doesn’t blow me off. Time will tell…. It is also scarily like, well, this is hard to describe in a way that is tactful toward everyone including myself, but I was going for this job because I thought it would be not super intense, I could keep my head down and chug away in the corner at something not too hard, but I’d do it super well, and not be too stressed. i.e. a good job for a smart person in uncertain health. And if I happened to do anything marvellous it would be just cake and appreciated extra, but i would not have to make a Cake every day. Well instead it was like, POUNCE! We are now going to extricate every last drop of your leadership-like smarty-pants glow-in-the-dark BLOOD! Holy crap! Okay then! I shall certainly try to do that for the next few weeks. But, in working, I find I am a bit more like a horse than a mule. i.e. a mule will stop and balk. A horse will sort of keep going till it breaks and collapses! A horse doesn’t want to disappoint anyone! So I will adopt a sort of mule’s warning, and do a ton now, but will need to do something less demanding for a bit, and will be clear on my limits. What I mean is maybe the stress of power as well as mental synthesis. I have to switch back and forth between hard thinky-things and doing something more menial, or I just burn out! And can’t balance my life! This, partly because I approach with intensity, but partly, it is all much more so because of how intensely I have been processing and dealing with disability stuff.

So, on the up side, I am pleased and flattered to be seen through, and I really enjoy getting to slurp in as much information as possible very quickly and re-evaluate several times daily as info intake continues, and keep changing plans and making stuff. What I am doing is being a systems analyst for the entire organization, but not just for systems, but for people. I’m not sure what you call that. (A “consultant” who pisses everyone off, but who doesn’t get to LEAVE.) That has always been my secret superpower! When I realized that was what I was gonna do for the next few weeks I kind of laughed with glee, because it’s fun, but also felt rueful, like “Oh shit… BUSTED” because it’s also really hard.

Wednesday I did the walkthrough/rollthrough for the upcoming conference, and a writeup, and stil did other worky things, then finally realized I ahd not eaten, drove to Atlas Cafe for a sandwich and worked on the writeup, then to Zond-7′s where i collapsed into bed, then at maybe 8 or 9 we went to R.’s party where I got to talk with her about icelandic sagas and lots of other people about science fiction and politics.

I thought more about hte hack ability blog, but did not work on it too much. Maybe a couple of hours.

I wrote up a long reading-guide to Timmi’s work, for Wiscon, which you should Digg and then read, here: http://digg.com/general_sciences/Plugged_In_Dystopian_Feminist_Futures_Prep_for_WisCon

Whirlwind guide to the mindblowing work of L. Timmel Duchamp, Guest of Honor for upcoming feminist science fiction convention WisCon 32. Cyborgs, women’s relationships, surveillance, torture, interrogation, dystopia, weird aliens, critical thought, time travel, art, alternate histories; but above all, revolutionaries, resistance, and hope.

I have another blog/web site to set up, just volunteering… first before Hack Ability.

And, I put some finishing touches on the blog that Minnie and I are doing, Whores of Bath. It is a humorous blog about bath products and we are doing it to make money. It will soon have even more ads plastered all over it. I am particularly proud of our obnoxious, link-whoring, search-engine-honeypot, yet still freaking funny, posts on imaginary baths with nude celebrities:

* Oh, honey! My fantasy bath with Lindsey Lohan!
* My fantasy celebrity bath with Robert Downey Jr

Well, gotta go, I had a half hour nap, a bloggy interlude (this one) which soothes my soul, a role playing game for the next several hours, Zond-7 is coming over, tomorrow is Recent Changes Camp (wiki unconference! come to it! in Palo Alto!) and then will drive about like a mad thing, and end up at a BBQ, so it will be another too-long day. Sunday I will need to decompress, but also, I probably need to work! ack!

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Visit from a friend

My friend the SkaRat is coming to visit! Tonight, if the flight gets in okay. Friends for over 20 years!

Here he is in 1986, when we were dating; he’s probably high as a kite but not necessarily, hanging out with my Very Serious poster of Octavio Paz!

1986

Here we are cooking dinner at our old co-op! A bit later, probably around 1988?

1989 - dinner cook at 21st St. Co-op

I had hoped to go up to the city with him tomorrow and hang out and go to bookstores, but with the rain and cold so nasty, we might just end up staying here. Then, a Dragons game in the evening. I met whump originally because he and skarat were best buddies. My god, that one time we were all tripping and they would *not shut up*! I’ll never forget it! I fled and went to wander the city and enjoy its jewel-ish night and the flickering blue of other people’s tv sets through their windows, sharing Tiger Balm and Carmex with Rachel… I remember other weird times with ska-rat wandering around Barton Creek (maybe tripping or not, it was all the same) and making up sort of ritual places where things Should Happen. Also he would try hard to describe sort of delicate evanescent visions that were so complicated and referential that I would have to watch several movies, read a science fiction book series, and listen to a lot of loud punk rock to understand his 3 hour caffeine fueled rants. I have to say, he introduced me to a lot of very awesome culture and sparked my lifelong investigation of ska. His rambly novel about cartoon characters intersecting with reality, never finished, long worked on… and with very beautiful moments, is on my bookshelf in a blue binder, in the fiction section, under “L”. Also I do still have that notorious box of Letters.

Anyway, I think we’ll loaf around and I hope he’ll sketch or paint and I’ll write and probably we’ll have lots of gossip. Or he will end up geeking out about movies with Rook in which case I’ll disappear into my computer!

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Diagnosis takes forEVER

My mood is fluctuating a lot as I deal with pain and weirdly variable ability levels. Sometimes I get up from bed and go “Ooo, I can walk to the other room and can do the laundry and stuff!” and then I wonder if other times I have just mis-read everything, or made it all up, or am completely bonkers. But no, pretty rapidly my leg starts to hurt like fuck again and I have to lie down. I’m still at about a 6.0 – 7.0 on the Kurtzke Scale.

Both legs are giving me trouble but the right leg is so much worse that I mostly focus on that.

Realizing that a large part of the pain is spasticity continues to be very helpful. Warmth helps a lot. If I keep my feet and legs very warm – under electric blanket, or in 2 pairs of long underwear and in my furry mukluks, then a giant chain of painful spasms is less likely to happen.

furry mukluks

This also explains some things from Physical Therapies Past. When the therapist would do passive stretching and traction and it felt great, we both interpreted it as taking pressure off the spine. But the machine to do spine traction alone didn’t help and in fact drove me nuts because i had to lie still and sort of strapped down and my legs hurt. I have been getting people to do more passive stretching along with a little massage. That helps. I find that after a bit of stretching if I just lie there without moving my leg at all, it stays quiet. If I stay in bed especially on my left side, then I can get up and walk around and the spasms aren’t so bad. (Until they just are again, and I don’t know why.)

So my PT was mostly about trying to make my muscles stronger, but they are already hellishly strong and also they aren’t paralyzed. Instead they spasm so hard that they hurt, and then I have trouble moving because they’re stiff and spasming and they resist. And moving in one direction to stretch one set hurts the other side that’s contracting. Something like that, I guess. And the PT I need to be having would be about trying to reduce muscle tone – not to improve it.

In short my usual feeling that I could do ANYTHING is probably true. I could run from a bear… or kick your ass… but then I’d fall over afterwards and pay some hideous consequences.

I had another MRI today, this time of my thoracic spine. I think the point of this one is to double triple check that I don’t have some kind of giant spine problem or tumor in there. My neck had some problems at C4-5, C5-6, and C6-7 (herniated discs and other stuff, but relatively minor). Especially at C4-5 where there is a bulge and some degeneration and moderate foraminal stenosis. That is the sort of stuff they expected to see in my lumbar spine, but didn’t. So, that stuff could explain the problems in my arms and hands and neck, I guess. But again those problems are like nothing compared to my leg, obviously…

It is the difference between “ow, my neck is bothering me a little” and “holy fuck I can’t walk and want to cry and am sort of thrashing around constantly from pain”.

Anyway, just now I took 2.5 mg of baclofen. I am very happy the 10mg tablets come in bitable form, so I can try a very low dose.

I found a usefully metaphor-laden description of spasticity though it is mostly for CP patients, it seems quite useful and helps me understand a bit. I figure I’ll research nerves, muscles, and this GABA stuff and write up whatever I figure out in a little report so I can be sure that I understand it clearly.

What these dudes say about low dose oral baclofen sounds sensible and non-scary to me. So that’s what I’m going to try. I’ll start with 2.5mg of baclofen once a day in the evening. Well, today at 5:30 because I was a bit desperate. I’ll try it for as long as I can deal with it, and see if that has any effect.

Right now I just feel a tiny bit more cheery and relaxed. My leg does feel less tight. As I try to move around it feels odd. That’s all I can say. Maybe a bath will help…

Here’s another random link to a description of PLS.

The disorder usually begins in the legs but can begin in the upper body or bulbar (speech and swallowing) muscles. The age of onset is generally between 35 and 66 years of age, with a median age of 50.

The incidence rate for PLS is difficult to determine. One study puts it at 500 individuals in the United States. However, many researchers feel this is an underestimate and the actual incident rate is closer to 2,000. The issue is further complicated by the fact that a good portion of people initially diagnosed with PLS actually have HSP or ALS. Most researchers indicate waiting about five years to observe symptom development before being confident of the diagnosis.

Note that bit about the five years to really know what you’re talking about with the diagnosis. Grrrrrreat. I know I have to get used to being vaguely diagnosed. I ride with it okay sometimes, and then have moments where it’s very hard. I just want to know… WHAT IS IT!

This part kind of made me laugh. Emotional lability, much?

Other symptoms that commonly occur include hyperactive reflexes, muscle spasms, presence of Babinkski’s signs, muscles spasms and pain. Some individuals report having emotional lability.

Dammit, don’t tell me I’m a neurotic poet because of this weird neurological condition! I’m just a neurotic poet! And I just laugh all the time when I’m mad or frustrated because, uh…

Oh well.

Emotional incontinence! Really… it’s funny…

How handy for explaining why I’m cracking up at bad poetry readings or meetings at work. No, really, officer! It’s my rare neurological disorder!

It could just be spastic paraplegia of some kind, maybe the wonderfully-named “Apparently Sporadic Spastic Paraplegia”. I could be a mutant!

This part is also quite true for me:

Many people find the tightness in their muscles worsens when they are angry, stressed, or upset. This may make it more difficult to walk and speak. It is unknown exactly how emotions affect muscle tone, but it may involve adrenalin levels. Most people also report increased stiffness in cold weather.

And about the uncertainty of diagnosis, this bit sums it all up very well:

Muscle spasticity and weakness can also be caused by other conditions including (but not limited to) Primary Lateral Sclerosis, spinal cord injury or tumors, cerebral palsy, multiple sclerosis, amyotrophic lateral sclerosis, vitamin absorption, and thoracic spine herniated disks.

Thus the MRI of my thoracic spine, where you’d think that any of my doctors would have started. My neuromancer thinks MS is unlikely & same with ALS because I would probably have more muscle atrophy or wasting. But neither of those are for sure ruled out.

Since it’s the same thing (from the feel of it) as it was from approx. 92-99, it seems doubtful that it’s ALS… since I’m not dead of pneumonia:

Upper motor neuron degeneration causes muscle spasticity and weakness in the voluntary muscles. It is disabling, but not terminal. Lower motor neuron degeneration causes muscle wasting, which eventually affects the respiratory system and leads to death.

That’s a comfort.

Meanwhile, life is pretty sweet. I get frustrated, especially with pain and times when mobility is hard, as well as with my usual state of fury with myself that I’m not productive enough. I’m driving (we’ll see, on the baclofen) and am spending most of my time in Deadwood City, but about 1-2 nights a week in SF with Zond-7. I spend most of the day in bed, getting up for small forays about the house. On a good day I do some light housework. (I can assess how mobile I am based on laundry: am I doing laundry at all? from the wheelchair? can I stand up to get stuff out of the dryer or do I have to ask for help for that part?) Other people are often in bed with me with computers or books, which is cosy. (Rook just brought me potstickers with sauce and some cranberry-grape juice laced with pomegranate! thanks Rook!) Periodically I beg for stretching or massages or I burst into tears and begin whining, but I am just as likely to be giggling, flirting, all on fire with ideas or cussing at some feminist controversy on the net or writing like a maniac or devouring a fabulous science fiction novel. This last week I’ve been able to drive, and if i can park *right* outside of a place then I can crutch in, say, to a restaurant, though I have to be sure I don’t have to stand up waiting or ordering and also that I won’t be wandering around looking for the bathroom. So mostly I stick to the wheelchair. Wheeling in the house is easier, but I’m doing some walking on crutches, cane, or just plain legs on the theory that it might help and if I can, I should, even if it hurts.

I need support from somewhere other than all you fuckin’ walkies, nice as you are. So I’m going to go lurk on PLS-Friends and the PLS corner on ALS Forums.

Mostly I’m clinging to the thought that I’m a mutant and have mere spastic paraplegia (SP) or Apparent Sporadic Spasticity (ASS) (no, not really; they made it ASSP, but I’m not fooled by that lame acronym-fu). That would explain where I’m at now, while warding off the scary future-swallowing-speaking-and-arm involvement. Maybe I’ll just make up my mind to believe that I’ve got ASS.

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Layers on layers of lost files, the nature of writing

Man, I’ve written some odd things. Sometimes little bits of science fictiony prose poems or what might be paragraphs of stories unwritten. Late night visions written so as not to be forgotten; forgotten. Odd & charming to me, like letters from an old friend.

I recall why I started writing. Not my first impulse when I was tiny which was towards parody & matching velocities so as to learn a style — it was being ridden by a hard mood, an overwhelming holistic feeling of something inexpressible & complicated, and wanting to be able to access it and recapture it, knowing I’d never remember the way that a particular combination of thoughts was like breathing the air of a new planet. In that I have succeeded. Beyond that, a strong recognizable voice, or voices, a lazy one and one more springy & compact, both of them recognizably me throughout.

Then there are the unblogged, unbloggable, unsent, deleted, unspeakable thoughts, file after file of the worst bits of my mind, pettiness, whining, vitriol, accusations, frightening pain raw on the page. It’s the pile of files to be burned when I die! I want to keep them for my own continuity of identity, but everyone else should be spared. My god! The things we come up with. We all do, and we get that shuddering sense the world couldn’t possibly bear the truth of those moments spoken out loud. They might take on too much reality, magic spells & demons named. As always, that’s a dare I want to take, a challenge & warning that makes my heart flare up strongly and resolve to summon every demon and make them my own.

Because of my recent flash flood of thinking about progressive disability and death, I have a strong impulse to organize my mental and physical geographies. To shed the things I don’t want. Get rid of stuff. Put my house in order. Molting. Pull forward everything of value, reground importances, questioning assumptions. What ends up in the foreground?

All very well, but what I should do right now is go to the hospital to walk around in the warm hydrotherapy pool, giving precedence to the splendid geography of my body; the organization of files and books and shoes and papers to be continued another day; all things in moderation.

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Steady progress in walking

I can hobble around now a little bit without it being a big huge fucking deal. I have to go really slow, it’s unsteady going, and my foot and calf are spasming like crazy. I’m still most comfortable in the wheelchair in the house, but I’m going to make myself walk more and more.

I get to see things in my house from up high again — I know it’s only been a couple of weeks in the chair, but it all seems very strange.

About every 15 minutes I’m stretching my legs carefully but firmly. My right leg feels like a contradictory set of rubber bands. I can’t stretch one set without almost breaking other sets. Here is where I think I need either OT or PT or both. Instead of just flailing around every few seconds trying to hurt slightly less, which is what I normally do and what makes me fidget like hell, I could approach this periodically with a set of deliberate stretches.

This morning I finished Glasshouse. I really loved it though I went in with a fair amount of suspicion and hype-detectors on full. No – it was fabulous. Difficult in all the ways I like books to be difficult – it was painful to read because of the horrible way it’s about us and our culture and time, about gender & hegemony. Also, unreliable narrators rock! Now I’m reading Smart House (1989) by Kate Wilhelm. It’s doing a good job so far with the young computer geniuses & a murder mystery. It is funny to see what books Zond-7 and I have made each other read. He has thrown Stross and Banks at me, Kevin Kelly and that Gaiome book (that one partly to see me bristle up with outrage at its science fictional ending bits) and I gave him Illicit Passage, Book of the New Sun, an Icelandic saga, and I can’t think what else.

My mom-in-law sent a small lumpy mysterious package which turned out to be 8 different kinds of extremely fancy chocolate suitable for a jaded bitch stuck in bed.

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