Archive for November, 2007

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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Collaboration and upgrade day

Yop! I have spent all day lying in bed messing with computers. I backed up my drive with Carbon Copy Cloner and installed Leopard and then made a new clean account and fiddled infinitely moving preferences and things and am still not done with that.

Then I started moving files, and cleaned up probably 70% of my miscelleneous layers which aren’t even honorable enough to be stratigraphic but are more like the Franciscan melange, otherwise known as the cruftiness of years and years of accumulated poems, essays, translations, stories, blog post drafts, half baked ideas, liveblogging sessions, notes on notes on notes, deleted bits of angry or sad emails or things unsent and unposted, private journals, and so on. I found many hilarious and embarrassing things including List of annoying people, which was people who were notable on various mailing lists over the years and I wanted to be sure not to accidentally befriend them or sleep with them later. Anyway, all of that was re-organized file by file into a vaguely logical structure which will make it easier to know where to file future things. In theory. Zond-7 basically held my hand and spoke stern words to sustain me during the process, words like “NO… you must not just move that entire folder over into a new “stuff and junk” folder!” You can imagine the emotional strain of dredging through all those old text files. For every project I have finished there are 10 more at least which were not finished. I mourn for them.

Then on a mad rampage of computeriness we messed about some more with mercurial. We understand like 2% of how to use it and we want to use it all wrong. Or, that’s what I thought until about 10 minutes ago and now I think that one of the ways I want to use it is like the “forest” idea. So what I would like is to be able to be able to suck in all the stuff that I use, wherever I am. That can mean several different things. It could mean just the minimal amount of stuff I need in a computer in order to work smoothly. Sort of my working environment. It could mean all my actual files or my working projects as well. All that could be under hg. Ideally I could push it out to my servers but it’s also on my laptop accounts and if I make a new account I can bring all that across with hg. And also I want to easily collaborate with Zond-7 in twiddling all this stuff so there are bits of our environment we can easily share. There could be a sort of local directory which can tell who you are logged in as and where you are, I mean what computer you’re on, and in those directories you keep information that’s specific to that environment and won’t work elsewhere. I don’t want to have a canonical place for my stuff and then a backup of it that I sync up. I would like to be more portable and fuzzy than that, with my information more accessible, and my informational boundaries more permeable to other people.

Oh meanwhile we got ipv6 working on my laptop with teredo/miredo & Zond-7 wrote a script to keep it dynamically updated so I can ssh into my laptop from anywhere else that has ipv6 using a stable domain name, no matter where I’m connecting to the net. Damn that’s so hot.

It was all fun but I’m super exhausted and can’t think anymore… I was ambitious to write things up coherently but it’ll wait and instead, here’s my usual brain dump.

We paired really well but definitely reached the point where he was over bossing a little bit and I was oversensitively snapping “I *know*” or “You don’t know either and I can just look it up”. I think he will go crazy if I don’t replace my keyboard as soon as possible – my up arrow doesn’t work and so I have to retype things instead of up-arrowing thru the history which is like torture especially if you are forced to watch it mistakes and all.

At bedtime, I tried to read to Moomin but he just went “No, let ME… *I* read with EXPRESSION.” Aieeeee! What an insult. It’s true I am so tired I sound like a whiny zombie robot.

Rook took Moomin to lunch and a movie and then shopping and then collapsed and fell asleep, I think still on East Coast time. I want to lure him into messing around with mercurial with us.

I love Moomin’s stories about the trip and that he got to do a gazillion exciting things (natural history museum, cirque du soleil, beach, playing Talisman and D&D with his cousins, a birthday party, thanksgiving, putting on a thankgiving play, umm and I think there was more.)

Physically I’m improving a bit, slowly, with a lot of resting. I did some stretching, and walked without a cane for about the distance to the bathroom and back to bed, but then was back on crutches and in the chair and am in massive pain again. I find I can sit up a couple of hours but then it gets to me and I’m toast for the rest of the day. Thanksgiving was awesome but I sat up *way* too long and absolutely melted down. I am tending to end up every night spacey, tired, liable to cry, banging on my own leg with my fists, complaining that I can’t take it, and anxious. I think this means i need more actual sleep, or should go to bed earlier, or change gears somehow.

I read Empress of Mijak yesterday and it totally rocked my world. The first.. oh about half… I was so jazzed and rooting for what’s her name. When she’s a teenage girl wreaking vengeance on the world it’s all good, she can slay great warriors and bathe in blood. But oh man then I became very uncomfortable with my liking of her as a character. Hello… they’re all nuts and hear voices in their heads and are horrible religious fanatics. I wish she’d stayed a little more complicated. On the other hand I got very thinky about the nature of good and evil and human character & ambition. While in purely dorky and goofy mind candy fantasyland conan-ish tarzan-ish barbarian warrior chick mode. That transition was interesting to go through (from my liking of the character to my discomfort, and thinking about why.) I can’t wait to read the sequel. Perhaps it’ll be like chapter 2 of a Mirror for Empresses. We also watched the last 2 episodes of the first season of Rome. Caesar and Hekat went well together…

Oh! And our house! The contractors have chopped a hole in our house. They’re making the french doors fit. It’s a bit complicated but they’re also super competent. Half the house doesn’t have electricity, though, till Monday, and I have a crazy-bad pragmatic topology of extension cords and power strips plugged into each other. I figure as long as we don’t fall asleep with the space heater on it’ll be okay. Yes, it would have been nicer of them to figure out we needed electricity tonight and Sunday. Well, they’re still going to do a kick ass job faster than I think anyone else would have, so I’m happy.

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Getting better, with emotional whiplash

So, for a couple of weeks I was at about an 8.0 to 8.5 on this scale of disability and I wasn’t sure how much better I was going to get. Now I’m improving somewhat, which is a huge relief. But I find that I’m in a weird space of emotional whiplash. Last week’s main emotions were grief, anxiety, and fear. I was not able to walk at all, and my arms and hands were not strong enough for me to be very independent.

Now that I’m improving it’s like I’m still steeling myself, but for something that isn’t coming yet. It’s like I got a reprieve from the firing squad.

This week I’ve been walking a little more each day. Saturday I was driving (It was easy once the Lyrica really wore off.) On Sunday I could go a few steps with a cane and holding onto Zond-7, but just barely. Monday I was going a bit with just the cane, but was super shaky and had to steady myself on the wall. Tuesday I was pretty competent around the house with the cane. Today I can go a few steps without the cane as long as I’m slow and careful, but I’m not confident. I’m now more in the state where I can walk to the bathroom, get myself food from the kitchen, stand and wash a dish or two, and things like that. But after doing any of those things, I collapse and have to rest and stretch and deal with the pain for quite a while.

I’m mostly in bed, and am stretching carefully. My right leg is very contracted (for me). Sitting up at right angles with my leg straight out hurts and stretches my back, the back of my leg and side, and my calf. I’m doing that and just slowly rotating my foot and then my whole leg, especially rotating it outwards. It’s amazingly hard work and also painful.

My work is not being very reassuring, I keep telling them i need to go on short term disability, and I’m estimating for a month (though it’s not like I *know*.) Sitting on my immediate boss in semi-public got a hand wave and no real response. It’s stressful. I hope they aren’t going to screw me over. Not feeling very confident of that at the moment.

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Parts of the brain

Here’s my brains! Hungry zombies take note. Also, dead Meret Oppenheim.

I like the MRI sounds. The sort of knocking one is the best, complicated enough to make a good backbeat. I go nuts with wanting to fidget but at the same time get dazed and hypnotized into drowsing. I’ve got a CD with hundreds of images. These seemed the most entertaining. I used OsiriX to read the DICOM files!

Here’s a still photo of a side view cross section, with snarky comments:

my brains - let me show you them

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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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Walking is handy

What a relief as I find that going off the Lyrica means I can walk across the room a few steps with the cane. It’s hard and I need crutches really. Or a walker would be very handy. But last week there is no way I could have made it up Zond-7′s stairs or driven up here at all.

I’m so heartened that I can walk a bit more and now I really believe I’ll get back to doing better. Independence!!!!!

On the way to the party (walking/rolling) we stopped to invite hazelbroom to come out with us. Oh also I ate a very delicious chicken taco and tamale from Taqueria San Francisco on 24th, near Bryant.

Elly’s party was great. I lounged on a sort of daybed sofa thing almost the whole time, and had champagne wearing a silly hat. The movie “Hackers” was being projected on the wall. I couldn’t really go around the party talking with people because they are all so high up and it’s hard to make a whole group of people squat down so you can be in on their conversation. But for a long time Leeann and Chulita and Mr. Anonymous hung out with us and we were extremely obnoxious and giggly and maybe a bit tipsy together. Leeann showed us their new super secret amazing as fuck blog! I love it!! And we invented the Lumbar Boob. People need new places to put boob implants, and why not put them in your low back where they’ll provide excellent support? Also, if you’re having sex with someone with short arms and they can’t grab your butt, the lumbar boobs will provide convenient handles. We get to invent weird new lingerie too!

Elly sat on a throne on a loft platform, surveying the party. I read the spines of her books and am intrigued by Woody Guthrie’s autobiography, which I intend to buy and read. I still barely know her but now as I have studied her bookshelves I grok a bit more. I could certainly see that watching Hackers from a throne would be the perfect party.

I enjoyed watching the DJ guy (Matt? Chameleon?) from in back of the deck to see his mysterious computer software … random access… how planned is it and how improvisational? But the music was noticably joyous and perfectly meshing with the crowd’s mood.

Zond-7 told me about the library at his college and described the atmosphere & in return I explained to him about the jungly, loud, swoopy grackles and how the most exciting places at my college were like freeway underpasses in their aesthetic with concrete and subtly changing light.

We ate many cupcakes and continued to drink champagne.

Back at Zond-7′s I conquered the horrible stairs and then was vaguely wishing I had a book that was juicy and new. Lo… he had bought me Player of Games so I fell asleep reading it under the electric blanket.

My plan for this week is to swim at Big Old Trees hospital’s hydrotherapy pool every day!

And to lie in bed reading more and opening packages from Amazon because I’ve been ordering junk off the net a little crazily.

I’m getting a massage today, maybe!

Eduardo and his buddy built a deck in 1 day and just bolted my metal ramp to the deck. It’s so awesome and imagine my happiness at finding super competent, nice, smart contractors.

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Fiery vengeance, and shirtless men on zepplins

Everyone is over for pizza and gaming. We had another enormous dragon battle with fire and sword and Catholics with rifles, secret passageways, and phrases like “vengeance shall be mine!” or “I burst out of the door, covered in my mother’s blood” or “Well, who wouldn’t be frightened, when the secret mastermind running all this has been… Hark! What’s that!” … ghosts, revolution, scary shamans, all on the island of Jeju around 1864. The councillor of our small town has been slain! People are proposing various leaders for our movement — zdashamber’s character Gunpowder, or Bob’s character Mi-Sook, maybe the Admiral, or China Lee as a military leader. zdashamber cracked me up afterwards by peering at my book and going “Aw right! zepplins! No, wait, shirtless men on zepplins!”

I found the hydrotherapy pool in the hospital close by (in real life, not in our game). $120 for 4 months and it’s open for free messing around all day on weekdays. It’s not swimmable but I don’t need that – just a bit of kicking and doing range of motion and stretching in the water, maybe some walking if I can manage it. Score!

The neuromancer today was fairly kind and answered all my million questions. I came in with a printout marked up and took notes. He explained how he got to PLS but that MS is also likely and while it does not fit as neatly as PLS does at the moment it might fit better after we look at more MRIs and other tests. I have to say I think MS is way more likely. There’s like 500 people in the US who have primary lateral sclerosis and more like 400,000 with MS. So we will see what we see on Tuesday. He said I should be feeling a bit stressed and anxious right around now and that pressure of uncertain diagnosis will likely be around for a few weeks. That I should be active, and yet rest; educate myself about possibilities, but not worry or fret; and then he signed all my forms for physical therapy and pools and parking thingies. He said I should go on short term disability for maybe 4-6 weeks. It will take that long to figure out diagnosis and get things going and if I have MS I will need some treatment, drugs, etc. Also he said it was okay to go off the Lyrica. I would rather try going back to the pain than feel my mind all fuzzy and my arms too weak for me to do much. So, no Lyrica tonight.

MS fits better in that I had a long period of remission and more of a remission and relapse pattern where I might have remyelinated.

I was very interested to see the Kurtze Expanded Disability Scale on this set of pages on MS. Those scales are really useful in trying to think about what’s going on over time.

Here’s that table, hope it’s fair use

Kurtze Expanded
Disability Status Scale


 

EDSS Level Description
0.0 Normal neurological
examination
1.0 No disability, minimal
signs in one FS
1.5 No disability, minimal
signs in more than one FS
2.0 Minimal disability
in one FS
2.5 Mild disability
in one FS or minimal disability in two FS
3.0 Moderate disability
in one FS, or mild disability in three or four FS. Fully ambulatory
3.5 Fully ambulatory
but with moderate disability in one FS and more than minimal disability
in several others
4.0 Fully ambulatory
without aid, self-sufficient, up and about some 12 hours a day despite
relatively severe disability; able to walk without aid or rest some 500
meters
4.5 Fully ambulatory
without aid, up and about much of the day, able to work a full day, may
otherwise have some limitation of full activity or require minimal assistance;
characterized by relatively severe disability; able to walk without aid
or rest some 300 meters.
5.0 Ambulatory without
aid or rest for about 200 meters; disability severe enough to impair full
daily activities (work a full day without special provisions)
5.5 Ambulatory without
aid or rest for about 100 meters; disability severe enough to preclude
full daily activities
6.0 Intermittent or
unilateral constant assistance (cane, crutch, brace) required to walk about
100 meters with or without resting
6.5 Constant bilateral
assistance (canes, crutches, braces) required to walk about 20 meters without
resting
7.0 Unable to walk beyond
approximately five meters even with aid, essentially restricted to wheelchair;
wheels self in standard wheelchair and transfers alone; up and about in
wheelchair some 12 hours a day
7.5 Unable to take more
than a few steps; restricted to wheelchair; may need aid in transfer; wheels
self but cannot carry on in standard wheelchair a full day; May require
motorized wheelchair
8.0 Essentially restricted
to bed or chair or perambulated in wheelchair, but may be out of bed itself
much of the day; retains many self-care functions; generally has effective
use of arms
8.5 Essentially restricted
to bed much of day; has some effective use of arms retains some self care
functions
9.0 Confined to bed;
can still communicate and eat.
9.5 Totally helpless
bed patient; unable to communicate effectively or eat/swallow
10.0 Death

I would say that this December and January I was a 1.0 on that scale. By February I was maybe a 2, limping, hurting, tired, but mostly hiding it. Since then I’ve been back and forth between a 6.0 and a 7.0. Maybe I was getting even to the 5.5 level, which was very cheering! Up to 7.0, it’s a level of disability I know very well how to cope with. I am for the last couple of weeks at a 7.5, an abrupt and scary change.

I could chart out the last few years with ups and downs on that scale; it might be interesting. Charted with pain added it would be even more useful.

***
update Sat. morning – I’m walking a few steps, feeling way less weak, more clear-headed. Going off the Lyrica was a good idea!

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Done with wallowing for now, up with sleaze and poetry

The MRI didn’t work out this morning, problems with authorization and instead of just doing it, they wrangled on the phone with my insurance and a tracking number and many different people and faxes and automated phone systems. The radiology people were super nice about it all. I laid on a gurney reading my book and Being Calm and Brave. It is all rescheduled for Tuesday. On the way out, I asked for a push up to the main entrance where Rook was going to pick me up. It was okay to ask and I felt okay about having been all INDEPENDENT CRIPPLE coming in and slightly exhausted cripple going out…

The radiologist also very nicely put on my right shoe for me. I should probably be wearing my other shoes that are a notch less difficult. Or get new super natty mary janeish fluevogs. When I feel fancy or a bit more able to move and walk and bend, I wear my fluevog boots. Right now I’m on the lightweight black shoes, very slick looking, but with a tongue and laces so I have to work too hard to get that right shoe on.

I sat in a patch of sun at the hospital entrance, letting it soak into me, birds chirping, the bustle of people coming and going, the valet parking guys’ cheerfulness bubbling up, reading my book (Crystal Rain by Tobias Buckell; it’s good) and feeling at peace with everything.

A handyman is coming today to talk about ramp building. I want a small wooden deck at my door, so I can wheel out, turn, and then go down a ramp. The metal ramp going right up to the door doesn’t work for myriad reasons.

Speaking of new shoes, I’m feeling the itch to get Rook to take me to the local Whore Store to get some of those ludicrous lucite high heels way too high for a non-stripper to walk in, the kind that light up inside with little LEDs and that have marabou feathers on the toe straps. I’ve always wanted them, and what better place to wear them than a wheelchair. Iris wrote me a hilarious note recommending I wear romantic flowing clothing and cultivate a “slight, grateful smile welded to my face” for the moments when other people are scrubbing the floor or bringing me chocolates and soup. Excellent advice but I will tweak it just a bit to make it more slutty, adding a hint of invitation and suggestion to the graceful smile (I can’t pull off “graceful” or gracious anyway) to turn it naughty… then, the stripper shoes.

I started working again on a medium length poem (“Unease”) and it feels good to get into that head space — it’s what I need.

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What if

Because I’m brave. Because I know how. Because I figure it out or because I pull through. Because it’s really okay. Because I can fix it. Because I can manage.

What if I can’t?

I’m sad and upset today, depressed, low, anxious, scared, dire, not supportive, hateful, not nice, helpless-feeling, needy, scared of feeling needy, feeling not in control of what happens to me and my body, disgusted, disheartened, wanting to push everyone away so they won’t see, but also not wanting to be alone, terrified of driving everyone away by my downitude. What if those things I think are me and that people like me for, aren’t there?

Just for the record.

Pollyanna’s not home today.

Uh, I’m really okay though… really…

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Info on PLS

Here’s a good article on PLS from a reputable source, not dumbed down. It explains a bit about upper motor neuron diseases vs. lower motor neuron.

I’m still waiting for my doctor and neurologist to call me back and I left them both messages with their staff. My doctor is out today and I said I was not happy with her laying this diagnosis on me and assuring me I could call for help and that we would expedite MRIs and any other tests to be this week and then not getting back to me for 2 days and not setting anything up! FFS.

I am not really convinced yet that we are not looking at MS or something else. Also I note that PLS is not only incredibly rare but it can unpredictably turn into ALS and might just be the slow form or on the same continuum. From all this reading I realize it is complicated and will be a while till they are certain of diagnosis. But I’d like to get other tests rolling to confirm or rule out.

One thing that does not quite seem to go with PLS is that I didn’t just plateau — I was extremely disabled and then got *better* to a large extent. That patterns seems a bit more like MS.

I realized today that I had not really told the neurologist about the 3+ weeks of visual problems and migraine-like symptoms that I had a few years ago, December 03. It was funny cause I thought at first it was flu though it was like nothing ever before. The thing making me barf was very extreme vertigo.

And again here the next year in Feb. 04 with the weird “optical aura” and pain and here in March 03 and in january 04 with a doctor saying “Maybe you should see a neurologist” but not actually referring me… more and I forgot that they cat scanned my head in 04 and ugh the ER doctor.

Well, my dr. is still out and so is the neuro and in theory they will call me back tomorrow.

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