badgerbag: messy, surly, full of books

Soldering, baking, and a pain report

spoke POV project
Originally uploaded by Liz.

We soldered and messed around with these light-up wheel kits all of yesterday! Imagine how sad we were when our LEDs didn't light up. Could it be our extremely amateurish, blobby soldering? Did we damage some components? We need expert advice!

I made soup again, and two loaves of bread in the bread machine. Housecleaners and pest control people came. So our house is sparkly and slightly less ant-y.

People from out of town don't understand that you can't do a damn thing about the ants. It doesn't matter if you have food out, or if there are cracks in the tiles, or if you battle the ants daily. They come in for water, warmth, or just to hang out because they think we're cool. In California, there are just rivers of ants. They're all related, and live in enormous underground colonies with millions and millions of ants that are impossible to destroy. It's not like pouring boiling water over the anthill is going to do it. The ants we live with probably are part of a colony that runs underneath an entire city block. Anyway, if you live here, now you know why our roses die.

On the other hand, our house probably won't be having termite problems, since Argentine ants eat termites.

I'll just stick to the occasional futile visit from pest control... and the more usual spraying with Dr. Bronner's Peppermint.

Hamster is here for a sleepover with Moomin! And soon Quilty & M. will be over to hang out - I can't wait to see them again.

It's been mostly eating fancy food, loafing in bed, mild cleaning and bustling, and as I said the marathon day of soldering, here.

I drove Zond-7 up to the city on an errand and back and while there we had a bizarrely nice moment eating tacos in the car on 24th. I can't explain. But it was the sort of thing I usually do on impulse, alone, so that it won't annoy anyone else. Instead of feeling like I was imposing my vile need for tacos on a person who'd rather be doing nearly anything else, it was a weirdly nice shared moment and made me have funny cozy flashbacks to times I spent drinking hot chocolate from a thermos in my dad's Toyota in between sledding and toboggan rides in 1975.

Chefily was (is) here! We hung out a bit and hot tubbed! She's going back to Moscow soon...

Pain report! The warmth today helped me a lot. I kept the house warm and it was a sunny day. It helped that I didn't go out. The last few days when it's been cold, I've been noticing things like, if I have my feet on the footrests of the wheelchair, even in two pairs of socks. the pressure and cold of the bars sets off painful spasms in the bottoms of my feet and up through my ankles and calves. It was very apparent. My hands hurt a lot. Last night I was walking around a bit in the evening but then after I got out of the hot tub could barely move and my calves and some sort of inner thigh muscle near my knee went crazy... i collapsed in a lot of pain. Yesterday (before the soldering) and the day before, my left arm had a lot of spasms (sometimes painful, sometimes just odd-feeling). Little ones in my hands and then big deep weird ones in the back of my upper arm. The hand pain I can mostly ignore but am not having very good grip strength in one hand... Early this morning I woke up with something that has never happened before. My entire quadriceps muscle was in a horrible spasm and i felt like i was going to barf. The feeling was oddly like how my legs felt during labor during the "transition" phase. I woke up Zond-7 and got him to gently straighten out my leg. Once I was rolled over I could control my leg again. But before that... not.

Zond-7 said I don't really whine much on this blog or on any blog. (He must have a high tolerance....) And that I should not talk about it as whining but that I'm open about what I'm going through. Though... often I'm really not that open. Or when I am, it's not like people hear it. It becomes background noise, or else people want to believe the best thing out of a range of things. They want me to be okay, or improving. I am adapting better to the situation and to rapidly changing abilities and pain levels. But I am not improving. I've bounced back from a few awful rock bottom days or weeks, but over the last 9 months I don't feel any improvement in what I can do functionally. Instead, my grip on capabilities and independence feels tenuous, and it seems like a new bit of me hurts every few days.

Scared and unsure

My left leg is increasingly messed up and it scares me a lot.

It twitches and spasms and isn't working right, and is incredibly painful. Like the other leg, the long muscles or tendons or whatever go off like crazy. And the sort of ants-in-pants ripply twitchy feelings as well. The ankle/foot drop part isn't as bad as the right side. The thing wrong with my knee on that side is wrong again, which seems to be spasticity and probably was, all along. It's like ropes or rubber bands attached to things, inside my leg, pulling all the wrong ways. Or like wearing torture boots made of squeezing snakes.

Am I getting worse so fast? Or is the baclofen doing something negative as well as positive? Could it be relaxing/unspazzing some things and setting off other cascades of neuromuscular activity and pain?

It does let up, I think, when I take it extremely easy and don't walk around too much, but that has its own frustrations and I also stiffen up if I don't move around enough. Everything seems like it's changing too fast for me to make any sense of what's going on in my body.

I wonder whether to increase the baclofen faster, or go off it completely to see if it's really making a difference - making things better or worse? I don't feel like I can tell any more.

Arms not feeling great - either - there are some things I just don't like to talk about at all -

That foot brace on the right side would be a relief. The clinic isn't scheduling new patients till next Wednesday when someone comes back from vacation.

I'm still thinking over my long talk with the neurologist and trying to process it. Very difficult.

Every time I think of my in-laws' attitude I cry some more in anger and frustration. I want to fight it out with them. It's hard to know they think of me as they do. On the other hand, I felt it -- and I'm glad I know it up front -- I'd rather know.

Other than dealing with pain, and being afraid now and then, life has been very sweet since Christmas. I'm really happy.

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.

A brief mention of The Orphan's Tales

The Orphan's Tales: In the Night Garden was one of the best books I've read in a while. Now that I've read book 2, Cities of Coin and Spice I feel comfortable elevating it to my golden bookshelf of great books of all time. It is a classic "Mirror for Princes" or book of moral instruction robed in the most entertaining sugary stories. Beasts and monsters, fantastic quests, myths, and the subtle moving of relationships over time, mix with global politics and the pleasure of creation of worlds, & with a healthy dose of messing gender politics and narrative. It makes everything else look clumsy. I've read the Pancatantra, different versions of Kalila and Dimna, the Mahabharata, various translations of 1001 Nights and the Ramayana, all the Icelandic and Norwegian sagas you can think of and more, and a wad of the longer Chinese novels as well. Long, complicated novels with vast arcs of interrelated stories! My obsession! It's like savoring the endless complexities of a drink of water when you're dying of thirst. This is a deeply satisfying book. Sugar and good medicine, as a mirror for princesses should be.

I am annoyed at the misunderstanding of it as a collection of fairy tales. You could read it that way... and it could be lovely and satisfying and entertaining that way too.

But damn, the beautiful writing! The sentences that make me swoon, one after the other! The complicated structure! The way so many characters have tendrils into other stories 5 layers deep and 500 pages away! The way that you see the same story from multiple tellings and points of view, not in a bludgeon-you-over-the-head way but sideways so you have to think and remember and look back to figure it out, because an echo has caught your ear or eye.

I'm rereading it for the third time and figuring things out while taking notes. I had to, to figure out whether it was always the Wizard Omir or not in some of the stories, and who everyone was, and when (I am not quite clear on the when of things as the Caliphates are confusing, and Ragnhild and the wars.)

The sources are pleasantly diverse to anyone who loves things to be non-eurocentric. Yes it has central european fairy tale roots, and arab and persian, and norse, and a bit of chineseness and lots of hindu mythological/philosophical/literary sources. WITHOUT BEING STUPID about it. So rare!

You will notice that barely anyone is white and if they are it is a matter of remark that they have sun-colored hair or milk-skin; it is good too to read something where the baseline isn't white white white.

If I could just point out... what Valente has done is pretty fucking amazing. The Pancatantra for example does nested stories with dazzling splendor and with the beautiful layering of meaning & message that builds up so that by the end you are likely taught some part of the complicated lessons of how it might be wise to treat other people well and behave morally or whatever. But the characters from the Friends book don't resurface transformed by time and adventures and new relationships in later tales - as they do in The Orphan's Tales. In My Name is Red, another very lovely but also very maddening-because-so-sexist book of complex nested stories that pack a political punch, the stories are interrelated and from different points of view, unlike the 1001 Nights or older tales, but Valente's book is actually larger in scope and twice as complicated. She kicks Orhan Pamuk's ass around the block and back. May I live to see her Nobel Prize... surely she will give a better speech than Lessing's vague Luddite rant which I can't snarl about enough...

(What I mean about Pamuk and sexism is just utter awkward blindness, like you're reading some fabulous lovely book and then realize in midstream or right away if you're tuned in, that there's one female character out of a cast of hundreds and she's THE LAND or THE NATION or something, totally smurfette syndrome, with added annoying nationalism that is also romantic love. Pamuk suffers from it, badly. Valente is the antidote to it - I've been waiting all my life to read this.)

Valente deserves world level recognition of these books. I have a lot more to say about this and will be posting something more coherent on the feministsf blog and wiki. My notes while reading developed into a sort of glossary of the characters and some different outlines of events. They'll have massive spoilers, and are meant for the pleasure of re-reading with increased understanding - not for use while reading the first time unless you want to be a dirty rotten cheater.

And all written with the most beautiful exquisite sense of humor!

All this is mostly about book 1. But my god, in book 2, The book of the storm! The coins! Valente is not fucking around or pulling any punches here.

Could someone please do me a favor and get Peter Beagle to read it just to make him faint with envy and pleasure? Twist his arm, please. I only know him a little and not well enough to persuade him. But well enough to want to give him a present.

The view from the parking lot

Just now I had a feeling that I remember very well from years ago. Ii's the feeling of staying behind, of being left, a vivid memory of what it was like to cheerfully stay behind with my book or a pen and notebook in the parking lot while other people went hiking along a mountainy trail. There was an element of sincerity possible in the cheerfulness, but also being wistful, resentful. Mostly, acceptance. And developing some measure of grace about it so as not to spoil anyone else's good time (after many times, I know, of being the downer and the spoiler and the awkward burden.) I've written before about how I learned a little patience, something I unlearned as fast as possible once I didn't need it anymore, but that I'm certainly requiring again in order to get along well in life.

In those redwood forest and beachside parking lots, observing birds with binoculars and making little sketches of my own feet, I recognized then, this will happen again and if this is the worst of it, I'll be very lucky.

Or things go a little wrong, and I realize that I don't have any control. I read a good, funny email recently from one of my mailing lists about the feeling people have when they fall. A woman who has fairly advanced upper motor neuron disease was describing how her leg was sliding slowly off the bed, and she couldn't control it, and she knew it would pull her off completely, and she'd fall and be stuck. She had plenty of time to contemplate the fall as it happened, so she pictured how she'd be stuck in the little alley between the wall and the bed, and she laughed pretty hard about that. Then she laughed some more as she laid there luckily with a phone reachable, as she has a backchannel line to her local EMTs, who are used to coming and rescuing her in those situations and who tease her about her strategy to meet hot firemen and paramedics. I haven't been there in the alley of floor behind the bed, quite, but I've been close to that, and know what it's like to wait. You just wait. You think. You pass the time, and watch the light on things, and your mind can go just anywhere. It's not so bad. I have fairly boundless trust that someone is coming, or coming back.

The luckiest you can get is to have people who don't mind, with that same level of sincerity, being left behind with you, people who have experienced enough so that they don't mind letting go of a possible glorious moment and instead having just an okay moment. Making do, enjoying what's possible, with a sense of humor and of artistry. Not in an "oh-well" way, but more like an artist. You look at the materials you've got, and you create the most fantastic thing possible with them. I've had some transcendent experiences in parking lots looking at rocks and weeds. Maybe this is more possible if you're a poet. Poetry in fact is traditionally well suited to the extraction of goodness from any situation, to be written in blood in prisons on scraps of toilet paper, or composed and memorized when nothing else is possible.

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A stalker from a bad dream

Another nightmare last night. I was at a party, a sort office party, and this guy (RL guy) who always annoys me (by having totally wrong boundaries and acting like we're best chums with an edge of resentment that we're obviously not) crossed some sort of line by cornering me and pouting and saying that I wouldn't talk with him and that I obviously didn't care about our "relationship" and was a shallow bitch, and couldn't I be nice (while edging closer and putting a friendly hand on my arm) and I thought "Am I going to just take this so as not to be Rude and not to Cause a Scene?" So in the dream, I stood up and went ballistic. I explained to him that we didn't have a relationship, and that he was badgering and silencing me and trying to embarrass me in public and that not only was he personally annoying and repugnant, but he was politically fucked up because he knew how to yank women's chains to manipulate them, through guilt and fear, and to demand & suck out all their attention, and I wasn't having it. I explained at length... loudly... at this (dream) party... following him from room to room for the harangue.

But then the dream shifted and I was in some different institution, like a big company or a university. A guy delivered a thick envelope for my friend Leeanne, stuffed with papers, not sealed. I brought it to her in another room and she freaked and said "That's my stalker - OMG - We have to get out of here - It has to be very clear that I never opened this envelope. Can you take it to the authorities... " I took the envelope and went out, but the crazy guy was there and demanded to know if I'd read what was in it. He began telling me how great I was and then asking me questions, confusing me with Leeanne. He started to grab at me and I knew suddenly he was terribly dangerous. I ran out of the room, evaded the stalker, and to an elevator. But no one "official" on the first floor would help me. There wasn't time, I couldn't prove anything, I kept saying quietly to people, "You have to help me, this guy is crazy, he's coming right after me, I can't yell for help or accuse him openly or he'll kill me before anyone helps." As the guy approached he'd un-crazy himself a bit and smile. NO one would help. There were no guards or police. I finally tried the loud speech tactic when I got far enough away from him that I could do it. ("Collective action!" but no, didn't work.)

The guy kept catching up, attacking me. trying to hold my arms still. Finally the scene kept shifting to replay differently, long enough so that we were in the street, and I was in my wheelchair. He attacked and I fought back. I still had the envelope. When he tried to twist my hand, my leather wheelchair gloves stopped him from bending my fingers backward, and I broke some of his fingers, and elbowed him in the gut, to escape again. In the dream, I thought "I'm going to have to visualize how to fight from the chair, to be prepared for things like this."

When I woke up, I had an entirely new and amusing thought, which I'll blog over here, about strollers and wheelchairs.

Warm and cozy with my electric blanket

I've been under here for a while and it feels like I just can't get warm! Maybe a hot bath.

I went shopping for presents. While I was at it I got myself Book 2 of The Orphan's Tales. Now I have two... TWO very juicy books to read that will blow my mind and absorb me completely. This one, plus Blood in the Fruit. This year I did not do much for holiday prep. But I'm having people over and will cook. Friday/Saturday I'll make cookies and maybe pie.

Rook's parents are coming for a few days! Full of medical advice which I appreciate but which I am going to ask them to put a lid on it in front of Moomin and that I am super happy for their advice and recommendations and referrals to the friends of old medical school colleagues but that there is to be NO TALK OF NEUROLOGY in front of Moomin...

I also prepared myself with things to say, like "I'd like to change the subject" and "I'm not going to talk about that now, thanks." It is usually easy to deflect things away from me by asking about their work or interests so I'm keeping that in mind.

And if they want to do lots of things, they can... but I can't and won't. I can go out, obviously, but I am pretty hard assed about going out to places *on my own terms* and with a lot of control over how and when and being-able-to-leave if I need to. Could I go to Monterey? Yes I could... especially with lots of Vicodin or something... and I love to go there... but 2 hours in a small car with 5 people would be unpleasant and would hurt my legs, and then the crowds, being bumped and tripped over, and having to cope with what everyone else wants to do, eating and shopping and all that. So if I went there, I'd plan to go on a weekday when it might be less crowded... Not on the Saturday before Christmas... and probably with an overnight stay.

Oh, my amazing inlaws! I've never been able to keep up with them and their giant ambitious energy and plans. They're 70-something and they don't slow down!

Last night Zond-7 and I spent the night at his new place. I like his roommates a lot. Resolution, to bring them some good stuff like fancy coffee and cheese and maybe bake some bread to contribute something back into their warm householdiness. They were so super awesome and share their food (and their nice coffee!) I held their baby, Beowulf, this morning for a bit. He's sort of bouncy and squirmy and jolly like my nephew Mr. Pants! They should totally have a playdate.

It is a little rough to feel like I have a million errands, but I have to do like one errand per day. Maybe 2. I keep cancelling and moving appointments, as I realize I have to keep my pace of life a bit slower than usual, for now.

Stuff I need to do:

- neurologist for prescrip, forms, orthotist referral
- Moomin's class party (Rook could, but I want to make a rare appearance)
- wheelchair store at least twice; once tomorrow, once next week
- shop for turkey, xmas dinner stuff
- make giant tin of cookies
- would like to make pies but maybe will buy them to save energy
- faxing things
- more phone calls (bah)
- set up orthotist appt?
- make sure COBRA is in place for early January (Rook is doing this part)
- make CDs for people for more presents

Yesterday, did Moomin's class holiday party, set out food and helped with "activities" etc and stuffed folders for the teacher. I got my wheelchair handles chopped off at the Chair Store which took forever but was awesome and so worth it and also nice of them to just do on the spot right away. Then off to SF where I lounged on the EFF office couch and then went to see Golden Compass which I liked very much without a ton of criticism (unusual for me with movies especially movies based on books) and to the wine tasting party where I actually had fun (also rare for an office party that's not even my office) and met some awesome nerds, R. and S. Everyone was a bit tipsy. including me.

I blame general holiday good cheer for my untactful behaviors. Also did not quite mean to be so heinous when I greeted that dude with the purple hair by saying "Hey! I remember you! We made out once, at that street fair or parade or whatever it was! With some really hot chick!" unfortunately right in front of his girlfriend. I might as well get that "I fucked your boyfriend" tshirt I've always wanted.

Sorry to be a bit dull on-blog but this is one of those entries just so that I know what the hell I'm up to, without a lot of zing or inspiration to it. That last bit above spiced it up a little, at least.

Zond-7 and I had such a nice time... Bliss... We got up reasonably early and had coffee with computers in bed. His new place is in that stage where you only have a suitcase full of stuff and so feel curiously free. All the junk and bills and clothes and things that need maintaining are left behind in the old apartment. A bunch of it will stay behind, like molting.

Also, the visit with in-laws is going fine. Everyone naps (they are old!) and putters around. We had fun in the toy store, had lunch without my feeling grilled about medical issues or anything, so I'm wildly optimistic that things will continue to be lovely. Rook is puttering with his dad outside. I've wrapped presents for everyone! I got Rook a g____b___ and some h_____ f______ ____z____ and Zond-7 a _uz__ __th____ and Minnie some you-know-whats (as usual).

Our city is not friendly

A few days ago on a whim while I was thinking of the things I have not done and would like to do, I wrote off to some Spanish immersion schools. Most of them are a bit too "studenty" sounding, ie. meant for 18 year olds. But what the hell. It wouldn't really matter; I just thought some structure and a week or two of immersion would be good for my Spanish.

I got this reply from one school, after I wrote to ask them if there was an elevator in their building. The photos on the web site made it look like a building on a flat street without stairs and it was multi-story. So, I asked, and got this answer:

The Institute and the some host families are wheelchair friendly... the only problem is the City of Puebla. The city of Puebla is not friendly at all so that is the reason that we do not accept students that are in the need of a wheelchair.

Don't you love the part about how they're wheelchair-friendly? So friendly that they don't accept wheelchair-using students!

Now that's friendly!

The whole Ciudad de Puebla -- friendly!

*snort*

I wrote back to say that they should not make a policy not to accept disabled students. Instead, they should provide specific information about the buildings and town, and let people make their own decisions.

The more prosaic diary of what's up

So I decided I'll go to UCSF to their ALS clinic, and get a 2nd opinion or workup or whatever from them. They can use all the same tests and MRIs and stuff. I might just have to have an EMG - sounds like a somatosensory evoked potential is no picnic, but something like that will get done.

I walked a bit again today with crutches, and sat up a good part of the day. Went out to lunch with and Jo (I'm completely obsessed with this pho place in Deadwood and its totally delicious noodle soup) and then came back here to talk poetry with D. (lying on couch with an electric blanket) and THEN Rook and Moomin and I went to Jo's house to do a little minor clearing up and moral support which I hope helped. It is a dreary thing to do alone, moving, even when you're not having that feeling of salvaging from the wreck.

Rook took kids to our house, and then when Ep's husband came over around 5 to drive Jo around town, they dropped her son and Eliz. off at my house too. Everyone played super peacefully with rocket launchers and "guns" that were actually my crutches, & then in elaborate gladatorial games with the tiny remote controlled cars from China, MC-ed by Eliz and fenced off by a coliseum of couch pillows. I watched from bed.

I thought I would miss the concert but then just in time all the kids got picked up. WHEW.

And what a fabulous feeling with my lap blanket tucked in around me, whooshing down the street in my new ultralight wheelchair, down the BRAND NEW RAMPS.

I'm very lucky...

It was all a bit exhausting, but I mostly stayed very warm. I'm hurting now despite baclofen. My left leg is spasming a lot tonight, mostly the calf and foot.

I have to say, that the feeling of trouble swallowing is more intense the last few days, and I never know if it is just in my mind... or if it is really worse. I guess if it gets really-really worse, I'll know it. I have had increasing trouble in the past years with swallowing when I 'm lying down or on my back. For example if getting a massage I have to turn on my side to swallow. I guess that is not quite normal? And much of the time I have to sort of think about swallowing food. I do it by leaning forward just a bit and stretching out my neck. Is that .... well, I know it must be odd, because I don't remember ever thinking about it or noticing it before a couple of years ago. Can I just confess... I didn't mention that to the neurologist even when he asked about swallowing difficulties.

I do think about it, and figure I will do a quick project to record myself reading more of my poems.

I haven't really wanted to talk about that to anyone because it feels like it would make it more real and it makes me much too afraid.

They have programs where you record yourself saying like 1500 common words and phrases and then a speech synthesizer thingie digitizes it and can construct what you want to say from that. The software to do this has different moods so you can inflect things to be angry or happy or whatever.

Remind me to record some key phrases like "Shut the fuck up" and "OH GOD! HARDER!"

Hahaha!

On the other hand I am not convinced it's not all in my head and I don't mean in the "upper motor neurons in brainstem" way of being all in my head.

You know the feeling of when your throat gets tight because you are super emotional? Like that.

Pilot and I had a nice talk yesterday and she filled me in on the acromegaly stuff which went along with the tumor. I didn't realize that bit of it. She's having a rough time over there, which I knew but didn't really grasp. It's funny to think of us in our next door houses, struggling. And I want to offer more solidarity in some way.

Meanwhile, I continue being absurdly happy. I get frustrated and scared and especially tired of being in bed. Not that I don't love to be in bed. It's just that when I have impulses to do something else, but can't muster up the stamina, and bed is warm, and cold hurts like helll.

Rook's parents are coming on Thursday!

I need to make a bunch more appointments and deal with medical things and faxing and insurance! And get food for xmas dinner, order a turkey or whatever! I feel like baking bread and cleaning the house! Instead I laid in bed all evening and watched "Hail the Conquering Hero" with Rook.

Nightmares of my dead clone bodies, and my friends

I had such nightmares!

In one, I was trying to save Moomin from drowning. We were in the ocean. Moomin had some kind of floating pillow, and Rook was encouraging him to kick, but he was going under and breathing water and couldn't. I was screaming at Rook to help push Moomin up onto a sort of raft. But he kept saying "He can do it!" and I had to do it myself and couldn't lift him high enough, over and over I kept trying through the huge choppy waves. My legs weren't kicking very well. I couldn't get up on to the raft to pull him up after me, so I was trying to use the waves and then push him up and over the edge. Moomin was still struggling a little to help get onto the raft, but then he'd choke again and go limp. I was terrified. Usually in dreams I have a lot of "lucid dreaming" power and can rewind and "fix" things and make it come out how I please. But here I couldn't. I don't know if anything finally happened. I think I woke up.

In another nightmare I kept dying over and over, and coming back in clone bodies. I was an assassin with a bunch of fellow assassins and there was some confusion so I'd come into a room with my message for them, but they'd kill me before I could explain. I kept coming into the room in new creative superhero-assassin ways, and as a result, just died all different ways. Sometimes it took a few minutes, and I'd be lying there thinking "Oh hell, not again, get it over with" but the actual experience of dying was never very comfortable. Waking up in the new body was disorienting. It all felt so futile. I felt sorry for the poor clone bodies.

In another, just now, I was in a sort of conference that had a dealer room that was so huge it was like Walmart. A guy was explaining a sort of computer phone device to some other dude who had problems understanding and I was chirping up to help and out of curiosity. Then the customer-guy was somewhere else in the store and asked me where the original aisle was. I took him back and he was saying it was amazing that I remembered and was nice of me to help him, then suddenly we ran into like everyone I know, and the guy whipped out some sort of amazing high tech wheelchair out of nowhere, and was buzzing around in it, and converted it into a sort of bike.

My friends and co-workers were all standing around (we were magically in a giant lobby or living room space) talking about me scornfully. "She doesn't try... she would never be able to go in races like YOU can" one of my friends said offhandedly to the bike-wheelchair guy. "If she would just work harder at it, well, but no she won't. She's like, a 1400-yard sort of girl." I was trying to get people to listen to me. But no one would. They just sighed impatiently and listed off all the things I do wrong. I eat the wrong things, I don't exercise like I could. I was crying finally and screaming at people to listen to me. "For one thing, 1400 yards is a LONG WAY! What are you talking about!" and saying that if I went for miles in a wheelchair I would just mess up my shoulders and wrists anyway, and my hands would hurt too, especially in the cold. But they turned away and said "You're just making excuses... like you ALWAYS do."

One guy was bitching about how I eat and I was like "Dude what are you talking about, you barely know me, and besides, think about yourself, why don't you go worry about maintaining your OWN body?" And then other people up came up to yell at me for saying that to him because he was so emotionally fragile... "do you know what you just DID to him?" Others explained I was being a huge downer and it was not what they wanted at their conferences and I would not be welcome again and also I had emotionally damaged all the children around me by crying and yelling.

Finally I got one guy from my work to listen to me explain that it would not matter how much I exercised or what I did; it doesn't change my motor neurons from decaying, it isn't under my control. And he went "Oh. I didn't know that." But he was only one person, and the rest of the world just swirled around me not caring at all.

What a horrible night! And after such a nice day, too. Was it Pretty Lady who suggested that nightmares come sometimes when you feel safe enough to deal with your unconscious fears?

Ode to Verticality

Not viagra, get your minds out of the spam-gutter, I'm talking about walking. I think that taking the baclofen super late at night and also being very warm all night, and the day being nice, meant that i woke up walking relatively well today. It was exciting to crutch across the street from the car to the restaurant, and back again. Then into the wheelchair to the playground because by that time my legs were hosed. Still, it wasn't too bad, I went up the stairs to Zond-7's new place and managed, and am on more drugs now back at my house and still crutching about on 4 legs (forearm crutches still undecorated and the nasty salmon-disco-puke-pink, reminiscent of ironon patches that might say "smile" or "flower power" from tshirts in 1979; fetch me a sharpie, forsooth, to destroy its robotic kidney gleam). Los Jarritos on Van Ness was not so good. Coffee okay, chilaquiles greasy, refried beans not right, where is your epazote funkiness? Did you ever get soaked? That is so useful as well as making everything tastier? I might fart myself all the way to the troposphere.... jeeez. Spice it right or don't call it mexican food. Anyway!!

That little girl in the parking lot of the laundromat was so awfully cute. She came out of the parking lot... in her fringed poncho & pigtails - eating skittles twisted into a bus transfer - big eyes at the strange mecha-gabacha-payasa - ven aca mija! ven! hell, little girl, just don't stand in the street, I won't steal your bus ticket skittles.

So the success of that late-night baclofen makes me resolve to take a 1/4 pill in the morning. I'll stick with 1/4, none, and 1/2 at night for now, and go up very slowly week by week as they advise. When I'm 5 / 5/ 10 I'll stop for a bit as long as it's working.

It makes life way better. When my legs aren't spazzing I'm not hurting, and I'm not afraid, and my whole right leg works better, including my foot.

I don't think my foot is going back to normal. The ankle - foot brace might work well, I sure hope so.

We talked - the unpredictability- the out of control feeling - the superstitions and attempts to connect meanings - the desire for linear progress, for immediate comfort but also to understand the shape of the long arc of time - am I getting better or worse? What does that mean?

I can get in and out of the bathtub really well, better than a couple of months ago! But that does not mean my foot drop will ever be better - ever.

Zond-7's new roommates pretty much rock. It wil be interesting to swirl our geek- art tribes together, complete with animals and ankle-biters.

The light today! Light on the buildings coming in over the hills and under low rolling clouds. there's gonna be fog, but not yet. Clear, a little wood smoke in the air, but clear ex-ocean air fizzing right up into the sinuses. In the grass which urban daisies and dandelions spice up mythologically doing the thing fields of flowers should do (up on the Alm, with the goats) in a moment of backgrounding while you looked at me as if you'd suddenly turned to an important statue or a monument to someone in love and I thought perhaps the light might also be shining all around me, transporter-fizzy imprecision making me a statistical likelihood of a cloud of person, of lover, perhaps the regular me had phased out and a transcendent poet phased in, just for that 30 seconds. Oh! everything is Important! Two young guys a little bit drawn and ravaged by the plague or junk or both, showing each other aikido moves after a lover-like talk on a bench. The old man walking circuits of the park for his health raised an eyebrow at my contraption and I wondered what he thought. An even older man with grizzled beard overwhelming his face and shopping carts and blankets, pausing in the sun to watch and listen. A young guy in a thin white t-shirt come out on the balcony to stand there, among the grills and hopeful plantpots, looking and listening. The other old but younger man with very slicked back hair and church going jacket played so sweetly. "Victoria, Aleluia, Victoria, and then another song hermana mia hermana mia, esposa mia, repeated, a long ballad, sung with some damn fine duende for a playground at 3:45 in the afternoon on a Sunday. With the light coming in like that under the clouds, like the wind blows through us.

Last night I was afraid and hurting and crying and thinking what if and what if and what if not. all that what if it is somehow my fault and i have to try harder. what if it doesn't work? Or slowly? and when it did before, over years, i thought oh what if had just done it better before and improved quicker? I am scared to go to a new clinic now for that 2nd opinion. What if it's worse than even now? What if I have fasciculations? Can I stand another electric needle-sticking, or any more dehumanizing scrutiny or hospital shuffling? The clinic person assured me it was human as anything, that a multidisciplinary team was the best, that I need a clinic with super-experience to be up in my reflexes and my motor neurons (bless their long lateral-tract tails and their branchy synaptic bits, and may they avoid their apoptosis and sclerosis as long as may be)

I bet the end of winter will find me walking better, me in my 3 pairs of long underwear and 2 of socks in the fuzzy boots and still fucking cold with my legs stiff, ankles popping, toes dragging.

Rolling is lovely. I embrace it. We rolled down the hill very fast, giddyup, the reins of our invisible horses. I was a horse for that moment with pauses and curvetting, hestitations & leapings, tenative clop of wheels into the laundromat (until the invisible horses were declared too big for inside.) The taste of walking today was a relief - I'd be lying not to enjoy it.

Walkies 1, Wheelchairs 1

Two conversations from the last two days, one in which I stayed quiet because I was too mad and cold and distracted to go into it, and one in which I had the snappy comeback right away.

Last night, as Zond-7 was putting my wheelchair into the trunk, our cab driver told me, "Good thing you have him with you. I wouldn't have pulled over if you didn't have someone to help you." I limited my response to saying, "That's interesting, and why is that?" I didn't have the oomph to explain, and on the way to the BlogHer party downtown, Zond-7 and I listened to the awful cab driver's awful AM radio station talk show with the frothing-at-the-mouth host who mocked Warren Buffet and "people who believe in global warming". The cab driver kept firing off senile random comments about it being good that I had someone to help me. I was boiling mad! At my most charitable, I could imagine that maybe he knew someone who didn't have someone to help them, or that he had a difficult experience with a disabled passenger who needed more help than he was able to give. I don't know why I couldn't muster up the smackdown and the explanation he deserved.

Today I was getting the elevator at UCSF coming down from the ALS Clinic and a guy with MD embroidered on his lab coat said all jollyfingly, "Wow! You sure do manage well in that thing!" to which I grinned super deadly and said without a pause, "Thanks! You sure do get around well on those legs! I don't know how you do it! I just want you to know that I really admire your courage!"

He went "uh, heh heh" and looked like he wanted to escape as fast as possible from the elevator. Everyone else smirked.

I swear! A doctor! They should know better.

It cheered me to be so snarky and to get to say back one of the things that most annoy me. The snark doesn't always hit the person who needs it most but I envision a beautiful ripple effect as crippled people everywhere whip out their bitch-ass sarcasm, so the other people in the elevator listen and learn.

Conversations late at night

The other night on being asked rather late in bed while about to pass out from sleeping pills, "What do you think will be the most amazing thing you'll see in your lifetime?" I considered a bit, probably going cross-eyed with effort. "Don't say anything soppy, like... 'you'." I would never! Only sometimes! But not to that question. I cast about for nanobots or cyborgian implants or space colonies, believing at least in orbital space station hotels which will be sooner than we think. But no. What it will be is just that things will pass us up. We won't understand them anymore, or the way people are. It will be people and how they act, and how they are. They'll be so "continuous partial attention" that we won't get their art, or what it is that they're doing that has meaning or how it's productive. They'll be like... Have you read Gormglaith?

(Long mad explanation of Gormglaith, each detail more improbable and giggly than the next. They... go around in tights... eating sandwiches... they pee just anywhere... all girls... and there's sort of houses or shelters and you can just get root beer... and so they're talking about sandwiches or knitting gauges or land-spirits while shampooing their hair or masturbating and it's because nothing like that matters, just do whatever... no big deal. (Disbelief but growing, perhaps grudging fascination). The are always talking about spinning and textile sounding things but it turns out they are hacking the DNA, they're nanobot-hacking land goddess teenagers in wooden clogs and longstockings. And they're just all bopping around and they seem so free, like people younger than us seem, because we can't read them, like my friends Kiriko Moth and Jambery who I just sort of run into around town, doing anything, and they seem like they could be those girls eating sandwiches sort of wholesomely, in stockings, while behind their eyes they're modifying the DNA of praying mantises and juggling ecosystems. You would not quite understand it as a novel but danah boyd would.) That's right! We won't understand anything - we won't understand their narratives - Like the Russian cosmonaut the journalists brought to the dance party at NASA as a set up for oh the noble adventure now dishonored, but the Russian was just like "Is good! Young people! Dancing! A party is good!" and he was refusing to go the road of bemoaning ignorance, no, people don't have to use things the way that we used them. We won't be all crusty like Lessing in her crusty speech about those bad Internet people, about it. We'll try to understand and learn it all, new ways of being, and we'll fail, but it'll be so interesting. Exactly!

Oh, and tonight I went to the BlogHer holiday party and saw Deb Roby and Minnie and Squid and Jennyalice and Britt, Sarah Dopp, Karianna, Kaliya, Lisa, Elisa, Jory, Maria Niles, George Kelly, Jeremy Pepper, and a gajilion other people. Minnie had a pirate tiara perched on her blond and blue dreadfalls and a dress with cherries. Deb Roby's spaghetti strap red velvet top with beads made me think of that Katie Webster song Red Negligee, "You know the ones with the little strings, that kinda, tremble when you walk" She was hot stuff! Jen as usual ended up in my lap. I showed off my new chair and its sparkly front wheels! The lemon drop might not have mixed in an entirely unreactive way with the baclofen, so I felt a bit giggly and euphoric and prone to show my red velvet hot pants...

George Kelly and Jeremy both told me interesting aspects of their personal lives that I hadn't known before!

My sister was so cool and splendid and funny!

Squid showed some of the Can I Sit With You? books, which are so so so excellent. The stories are addictively good, often in that trainwreck way of gossip - but they're about us, our real stories, told by us as gossip or as teaching stories to our kids so they know they're not alone in their social angst in elementary and middle school. The books are great. I bought a bunch to give as presents. Good for middle school or younger kids if you don't mind it being uncensored. What makes it fun for adults to read is that it functions as years-later healing and perspective.

I didn't go drinking with my homies, it seemed unwise in general since I was hurting and should lie down, and was only going on the extra kick of baclofen + booze + social adrenalin, plus Zond-7 was feeling ill and really needed to lie down himself. So back instead here to get warm and talk about computery arty history writerly things and watch bits of youtube clips, curled up with plans and memories.

The Spangleplex, brimming with potential

I went with Jo Spanglemonkey to see the new Spangleplex, lease just signed and payment paid! I see why she decided on the spot to rent it. Both of us are mega familiar with the rental and house-buying options in Deadwood through many years of renting and then chumming around in the easy-rider luxury-car Ford Crown Victorias of pantsuited realtors. It is a high density neighborhood over by Sidewood, a couple of blocks from the 7-11 and Wegman's, therefore also it must be walkable to the slightly manky Starf*cks. The neighborhood read as perfectly fine, like mine, with likelihood high of many kids on bikes and moms with strollers.

There's a garage! and very huge living room and kitchen. You could fit like 3 kitchen tables into there. It'll make a perfect place to set up every kind of art and craft thing. I picture Eliz with a sewing desk in there, and Jo's painting stuff. The driveway has this sort of nook in front with rosebushes that would make an awesome porch and there is a nasty old plastic table with umbrella that I'd put out there for porchtastic lounging and people-watching.

In the garage taped to the inside of the cupboard on a yellowing bit of notebook paper there was a chart showing the location and variety name of all the rosebushes. It is totally the house of some dead old lady who went with the 70s wood panelling and the yellow trippy-pattern linoleum and as we stared at the chart in her years-old handwriting I extrapolated the estate sale that probably happened in that house about 10 years ago when she died, the porcelain figures and lace doilies, the wooden wall plaques with jesus-sayings and sunsets, the 70s cookbooks and handfuls of plastic costume jewelry beaded necklaces that come with old lady estate sales in these parts. And perhaps a big bible-sized cassette tape recorder that broke in 1985 and was never thrown away. Because of the Imaginary Rose Lady, I could totally love the Spangleplex.

There is a duplex neighbor lady with dogs, good for potential Eliz. and Sophie dogsitting jobs.

And because it is all so huge I picture some way for Eliz's outrage and ire to be cooled by having some importantly private space of her own demarcated somehow.

I proposed that Jo hold monthly Art/Craft salon nights at her house. Also we should have either croquet or bocce on the tiny front lawn. You see how I am very willing to poke my friends up to be hosts, while I never invite them over for dinner myself. Sheer evil on wheels!

The hard part if it were me would be the weeknights without kids, alone in the house with insomnia and internet. But, as Jo goes to bed at 9pm without fail, she's seeing it more as an opportunity to watch the Netflix she wants to before crashing out undisturbed.

Mean people suck, so I'll rant at them

I spent the morning being angry, which was no fun. Then I went to the rehab pool, which is hard work. I got dressed. Rook loaded me up into the care, and then I drove by myself trying to feel happy about being independent.

There are people who take pleasure in petty power. You find them behind desks, smug & obtuse. This guy was trying to make me mad by making me wait. And he was doing it to everyone else there too. To old ladies balancing on quad canes so bent over they could hardly lift their heads to see ahead of them. What is the point? Looking everywhere but at the people waiting. Ignoring all the people who were politely trying to just check in and go use the pool or who had a simple question. Finally it was my turn. And believe me I show no impatience in those situations and am extremely polite; but the guy who was there after me had made subtle eye contact with me and there was an obvious body language thing where I backed up to let him go first because he was in more difficulty. It was clear it was a huge effort for him to lift up his arm with the pool check-in card, and the guy behind the desk just ignored his request and dithered around and then deliberately cold shouldered him to turn to me. I told him to help the other guy first. The guy behind the desk acted angry. OMG! Horrible. I realized he was doing that thing that people do when they know very well that you need what they have, and you'll have to ask them for help. That sort of person takes pleasure in being frustrating and cruel, and making you mad, then watching you be humiliated at having to ask for things, unable to express your anger.

I don't understand it.

Anyway this random dude was hating on me and I was hating on him and trying to keep my temper. Then I came out of the locker room and realized he was now on shift as the lifeguard. And he was nasty to me again pointlessly. Then when I had to get out he was there smirking to help me. Smirking!

It was so petty, and so meaningless. But those things happen all the time. People sometimes help you out of meanness, to make you feel small. They add an extra kick as they throw you a penny.

It was a bit like Widmerpool suddenly being head of the War Office, and Jenkins realizing he had the power of life and death over everyone they knew to assign them to deadly war zones vs. desk jobs, and Widmerpool's obvious pleasure in that, very much in miniature.

Normally I'm good about pointing out something like that bluntly and with some humor attached. Today I just clung to the side of the pool and bicycled my legs quietly and painfully as I looked around at the pool full of old people I was in there with and thought about all the shit they take.

All my fury, all my fierce entitlement, the good kind of it that believes all of us get to be treated like human beings, am I going to lose that? And learn to swallow it? Like they do?

Because I'll have to?

I don't think so. Instead I resolve to not take any bullshit.

There in the pool I thought of the way Medicare doesn't pay for wheelchairs that are "intended for use outside of the home" thus dooming thousands and thousands of people who believed in "independent living" to a life of house arrest. Filled with rage... I bicycled my legs and looked out the window at the kids playing soccer in the fields outside and the gorgeous blue sky and the maple leaves blazed against everything, and thought of how things were in the Astrodome and realized I have to call on that sort of strength in myself to deal with people in my daily life.

There are kind people everywhere, people who work in hospitals and bring you warm blankets and seem conscious that such a simple act could alleviate real suffering. And then there are people who leave you lying naked in cold rooms on metal tables, with your wheelchair pushed out of the way and out of reach across the room, and the door shut, while they order tests or check with medical records or look for a file, and who act angry with you in advance to quash any expectation you might have of being treated decently, people who are having a shitty time and who take it out on others.

I like to think that no matter what kind of bad day I'm having I would choose to be the first kind of person. Also, that as in the Astrodome, behaving decently towards people and insisting on being treated decently yourself, spreads like ripples of sanity and helps everyone.

Silently enduring bad treatment only sets a bad example to everyone else around you, not just the people who should be told off, but the other people being treated badly. I think of how I went off on this woman at a bus stop once when she was pinching her little kid's inside of the arm black and blue and I realized how futile yelling at her would be but did it anyway because the kid would get that voice of outside validation that abuse wasn't okay.

I wrote all the letters of the alphabet in the water with my right leg, and thought of people get old and disabled and sick and don't know how to speak up for themselves, in little situations or big ones, and how silence and shame conspire to kill people body & soul.

Oh also I'm so totally pms-ing that it's not even funny.

Bring me the megaphone, and some chocolate, and I'll conquer the world from bed, okay?

PLS research project at Northwestern; gadget gossip

I've been immersing myself in mailing lists and bulletin boards and papers off Medline on HSP and PLS and ALS and spasticity, and neurological problems in general.

The Neuromuscular Disorders Program at Northwestern is doing a familial study for Primary Lateral Sclerosis or PLS. So me, my sister, my parents, and Rook will send them blood. They send a kit to us all and we take it to a phlebotomist and then presumably fed ex it back super quick.

Meanwhile, with all the reading I am realizing that just like things are with my legs, it's like that for a bunch of people with PLS and their swallowing/speech. If it is PLS and not spastic paraparesis, it's not like I'll suddenly be unable to eat or talk but probably more intermittent or partial. So people talk about having difficulties for years, but more like having to do some occupational therapy and think carefully about swallowing, with some episodes of choking on food or drink, not like an on/off switch. That sounds grim still, but it's comforting to hear from other people talking about their daily experiences.

Yesterday I spent mostly in bed, getting up a little around the house, in the wheelchair, then driving to SF. I went briefly into Djim's place to drop off Moomin and so that the kids could see his very amazing rabbits with their whole set-up that's like a rabbit castle. They liked it, and I was appreciative of being able to go in and see people even for a few minutes. Today was lovely. I woke up late-ish, could walk pretty well, drove everyone to work and school (only a few blocks so no biggie) then was able to get myself out of the car and met G. for tacos and then coffee. I just kind of wheeled up and down 24th Street taking photos in the sun, because I could. I liked the amazing hardware store there, the Workingman's Hardware with the two super old guys surrounded by a very beautiful jumble of tools and pipes and stuff. G. gave me the update on her work and love life and I explained the confusing diagnosis stuff, mostly.

I met a guy at Ritual Roasters who had amazing interesting wheels called e-motion. They're motorized and give a mechanical assist in whatever direction you're pushing. They go on a regular manual wheelchair and make it every easy to maneuver. I could imagine being happy with these wheels, if I get to the point where I lose a lot of arm strength. The wheels are quite heavy, 30 pounds each, and battery life means they go for 8 miles. But as they're quick release, you can still put the wheelchair into your car or even fold it with the wheels still on if you have an x-frame chair. It seems so much more intuitive to control a chair this way than with a joystick or steering wheel. Anyway, if I need something like this, I also think it might be far off in the future, and the technology will keep improving.

Really, it made my day to see these! The dude was so super nice to answer all my questions and to geek out with me. I seriously long for some other wheely people to hang with.

I got my super-cheap forearm crutches today, and they're okay, easier than using 2 canes. They aren't red like I wanted, but are a sort of gross pinky-red. Oh well. I was thinking I'll write all over them with black sharpie and that'll have a nice effect!

The new glittery folding crutches *might* come by Thursday but more likely, Friday or Saturday. I soooo need them for the BlogHer holiday party! ohhhh!

And my new Quickie Ti will come Dec. 18, they're promising. I still have some regrets about not getting to try a Ti-Lite.

I stayed in the city because it was so sunny and beautiful... though I had meant to go home and go back to bed. My legs were painful but not impossible -- I think the baclofen is helping. I upped it to 5mg, still below the dose they said to start on. It's tempting to take it in the morning too. Either it wears off by the end of the day, or I just get tired (whether I stay in bed or not) and my legs are more spastic. The cramps in my calves, shins, and feet seem stronger than I've been used to. I think back and try to remember if it was this bad. Sometimes, yes it was, and I took a lot of very hot baths. My right leg being like this is I think what used to make my knee hurt and collapse - the muscles or tendons right next to my knee were spasming and very tight, and my knee wouldn't work right. On the right side it is all about the ankle right now. When I think of wearing an ankle brace it sound soothing and nice, like it might keep my foot from hurting and dragging.

I still hope it's HSP but I don't see how anyone's going to tell. Half the people on the mailing lists and BBSes seem to think their diagnosis is PLS when their doctor thinks it's SP, and vice versa. It's interesting how on all these medical net sites people identify themselves with their diagnosis - dx and date of dx. My date of dx is this year, though I've been living with whatever this is since at least 1993. So, people ID themselves with that date, which has the effect of giving them a certain authority of long experience and the assumption they must know a fair bit about all the research and symptom treatment & adaptations in life. The further back dates are hopeful as well, for me, so it's nice to see someone posting "DX-ed with PLS in 1988" since 20 years later they're still having a nice life and posting long thoughtful emails to listservs.

Help out with Washington flood - directly

If you want to donate directly to help out with the flood in Washington, you can't do better than to send a few bucks to Daring Young Mom, who is driving around her family, working her butt off to help people with supplies and hard labor. Here she is with her friends helping a single mom with 3 kids:

4 days later while my 4 girlfriends and I were tearing the sheetrock and insulation from the walls of her home with hammers and shovels, she was still hauling her filthy belongings to temporary housing in garbage bags. A few of her children’s homemade Christmas decorations still clung to the higher walls.

When you see some messed up sexist stereotype in the media about soccer moms in minivans, then think of Kathryn and how she just pitched right in to help people out! Minivan and all.

Meanwhile, click that donate button and send her some cash. You know it'll go right where it should.

Kathryn's photos are amazing. Those houses were hip deep in mud and I don't know how they're ever going to clean them out. Think what a difference it must make to have total strangers, not even part of any organization, just show up with a car full of supplies and start helping you clean the mud out of your ruined home. I got to know Kathryn this year when we were on a panel at BlogHer. Yay for amazing bloggers and all the good stuff they do!

On distant friendship

It's funny how it's possible to love people you barely know. Your lives intersect a little, but there is no time to live the several lifetimes of intimacy you could wish for. There's only so much room. But I think in many cases appreciation and respect runs deep. I think over the virtues of my friends and how lovable they are.

Thoughts inspired by getting a sweet note from Em ("Chefily"). Wrote her back sappily about how much I admire her strong shiny creative self as she bops around the world. She's a planet with an ecosystem, a sunny planet radiating aprons and art, environments & dinner & physical exuberance. Also, she's really hot in a ball gown.

I think of all the people I know and love, but am not really all that close to. I appreciate them all and, even when I don't hear from them, figure that they feel the same way about me.

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.

Reading for the week: alternate histories and real history

I wanted to at least mention Farthing and Ha'penny, because I read them this week. Rook read Ha'penny and was up late feeling very perturbed and upset and was still ranting about it days later. When I read it, my own readerly expectations were set up by the dozens and dozens of British detective novels I've read over the years. Walton's Scotland Yard dectective is just that same sort of decent man with ideals about justice, clomping around in his inspectorly boots feeling a bit out of place among the nobility in their country houses. The real point of the books for me was political resistance and then, for Ha'penny, political violence. At what point do people - especially privileged people - decide to go against the government or the status quo? To engage in civil disobedience, to flee from the justice system, to go into hiding? When do you know they're about to "come for you"? And with Ha'penny the question pushed further into - When do you, or should you, become involved in violent revolution? When do you become that bomb-throwing terrorist, if ever? Is there a time when you should?

The same two questions also leaped out at me from the Harry Potter books, obviously.

Rook was disturbed in part because he felt Walton was implying strongly - was buying into - the idea that assassination was or is a solution. I disagree with him and think Walton was playing with it but not buying into it at all. The characters do -- or actually... one character who intends to assassinate doubts the "Great Man" theory of history or the idea that you can change history by going back in time and killing one person. But the person who intends to stop the assassination believes it (more). It's deliberately complicated and made ambiguous and I think the story's setup undermines violent response. The bomb making assassin is romanticized heavily but I think we are meant to see that for what it is (rather than identifying with it) as the romanticizing character (ugh trying not to do any real spoilers!) goes deeper into confusion. I think Rook would say that their decisions are framed as unequivocally good and bad. But I'm not so sure about that. In any case, the book made me think about myself and my response to injustice. I've always wondered if there'd be a point where I would be pushed over the edge and join the montoneros or whatever... I think I might have as a teenager. But now I'd like to think that I'd be non-violent even in the most extreme political situation. I might not be personally non-violent if attacked though on some levels I also like to think I would be. But as political action I think that inspiring people to mass non-violent resistance is right. Also you could argue that it's more effective in the long run.

I have spent more time thinking about just or unjust causes for war, but not really much time thinking out the ethics of non-state-sponsored violence. They are much the same in some ways; I don't see that being a state gives any more legitimacy to killing people. So if you accept war then you have to accept "terrorism" as equally ethical. Just my two cents.

Zond-7 and I were talking about it this morning and he was saying that setting yourself on fire is probably much more effective than assassination. And also mentioned the fascinating idea from eco-extremist movement that the most ecologically useful thing we could do is to kill ourselves... i.e. nothing I do in my life as we in the U.S. are living, even if I were a super duper eco-activist, would be as effective in reducing my ecological footprint as if I just offed myself.

Anyway, I loved Farthing and Ha'penny and would recommend them to anyone -- especially if you'd like to see the detective novel turned on its head a little bit & made super awesome and political. Or if you've ever imagined actually going back in time and killing Hitler... Then you will enjoy this.

I think Iris might be super annoyed by it as she might be with Rook on hating the romanticized bomb-maker and it will spark her off into writing me a 20 page email about how much she hates the IRA... But I told her to read it anyway.

Meanwhile, Zond-7 read me a bit out of Kevin Kelly Out of Control and I fell asleep to more about ants and bees and hive minds and the internet. Last night I read to him from Durant's Rome book, Caesar and Christ, a bit about Tiberius Gracchus and Caius Gracchus and the Agrarian Revolts. I was falling asleep as I was reading, but kept going anyway. I hear that I fell asleep grinning. I wonder why?

A little light medical reference reading

On spasticity, let me present

MDVU information resources on assessment, treatment, and especially on PT.
Exploring Spasticity's information pages, which are okay but a bit commercially motivated and not detailed enough.
We Move spasticity pages. Very awesome, though I wish someone would un-spazz enough to redesign the cutting-edge-of-1998-y web design.
And while I'm snarking I'll add that however much we might love the late Frank R. and his noble efforts, I'm not sure that we're doing his memory a favor by preserving his design sense or moribund database.

On PLS, this brochure from the NORD:

Primary Lateral Sclerosis.

I'm still putting my money on Spastic Parapareisis. I think my neuromancer leans toward PLS because my hands suck sometimes, but everyone I know who's a hard core computer nerd has hand problems, plus I have some disc problems in my neck. I lean toward SP because it sounds less scary but also because I pee about every half hour and always feel like I have to pee even right after I use the bathroom.

Oh! And my reading campaign also led me to this totally sexy description of a dude in an exoskeleton and to look up Melora again to see if there's any good screen shots of her in her cool-ass exoskeleton.

Meanwhile if anyone knows a good disability irc channel where people have a freaking sense of humor please let me know. It's all very well, the PLS and HSP bbs-s and mailing lists, but the glurge drives me up the wall. I'm too bad attitude for that scene. But all the chat rooms I can find are fetishist men who want to find crippled women and... fuck that noise. Or they're all corporate: medical equipment companies trying to create a "community" and totally failing.

I've got blogs, which is great, and tons of web sites, but I really want a chat hangout with some other crippled chicks. Clearly they're all too busy getting laid with all the pervs and fetishists. DAMMIT.

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New wheels finally ordered

After calling my insurance company and 3 different people at the wheelchair store, almost daily, I finally got to the point where the insurance company insists they have no record of the faxed claim (from Nov. 14th) because it takes them up to 6 weeks to "process" it. And finally the store people said that that's just how long it takes, but if I am all desperate, I could pay a little bit of the down payment and they will trust the insurance to come through and order the thing now.

Arrrgh! I thought they ordered it 3 weeks ago!

I am paying a lot for this chair - it is $1900 from cheap online places, but $2800 list price and ... wait for it... $4400 from the wheelchair store but that is including the specially light wheels which are $700 extra.

The store guarantees to fix it for all time, for free, and to replace things that need replacing if they wear out. Plus I don't really know all the details of how to measure... I wonder if I should have done this through the hospital?

But I'm doing it. I need a chair that fits. It is too painful for my legs to have the wrong seat depth, and it'll help my fatigue and my arms when my chair weighs 15 pounds less. They're promising the chair in under 2 weeks! Let it be so!

I cried a bunch this afternoon kind of randomly, maybe from frustration over all the insurance calls and the hassle and how all the doctors and insurance people always say they'll call me back in a few minutes and then a couple of days go by. I call back and it's like back to square one... no one even remembers what I'm talking about.

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!

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.

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.

Technorati Tags: disability, medical, pain, spasticity

Unstoppable anxiety dreams all night

I had a night full of anxiety dreams and leg spasms, finally going to sleep again for real around 8:30. I think at 7 I got up for some hot milk and found Moomin in bed cosily reading comic books so I went to cuddle with him for a while. He explained the beginning of "Power Pack" to me but recommended I go back to read it all. I was touched when he checked with me before turning the page to make sure I was caught up! And he was so warm and cuddly. I'm resolving to read him The Hobbit in bed as soon as he and Rook are done with the comic book version of it.

Power Pack looked good; its illustrations were pure cheezy 70s comic book, but the story was good. The bit I read was 2 young kids named Katie and Julie stealing some sort of world-destroying device which an evil business tycoon had in his office (along with some candy bars which Moomin found charmingly naughty of them) and I think a 3rd kid maybe a brother -- cut with scenes of the Snarks, matriarchal lizard aliens in a spaceship plotting to blow up the universe of the other, good, aliens. Moomin explained their interesting powers - gravity, power over density and mass, energizer, and lightspeed who is really good at acceleration. I think the comic must make a stab at explaining the actual concepts of things like mass, inertia, gravity, and acceleration! Nicely educational!

I would recommend Power Pack to other parents as a good superhero comic -- and at least in the one issue that I read (randomly in the middle of the series) it wasn't annoyingly sexist! I see from its description that it "deals with mature themes" like coming across people dead of drug use. I don't mind this. Moomin's old enough to read a newspaper, he can read a comic book that has homeless people and pre-teen superheroes who accidentally kill people with their powers and are wracked with remorse. It might be harder to explain to a 4 year old though.

The second batch of anxiety dreams were also around cars and wheelchairs and stairs and getting around. My house this time was a modern steel and glass and chrome version of my old co-op. I kept falling asleep in different places in a sort of haze -- in a sort of jacuzzi bathtub, waking to realize I had gotten in with all the top part of my clothes still on, a tank top and tshirt and sweatshirt over them, and they were getting wet, and the water had all drained out and I had to pee and yet was disheartened at the thought of getting out of the tub to pee and then getting back in to wash afterwards so as to be nice and clean for a while. (Clearly I need a Washlet in this dream! Click that link, you'll laugh your ass off.)

My friends from work also lived in my strange chrome and steel house. I dreamed typing things into a term window, and work friends IM-ing me and sending me files, and downloading and ftp-ing things all over the place but getting stuck in none of it working right. For a while it was like my mom also lived in my house. Plus my friend Ian H. with an enormous suitcase full of tiny electronic devices with LEDs blinking on and off and a vaguely internetty company name. I kept vaguely waking up from masturbating (in the dream) and then realizing people were all around me and the door was open... or had been right in the next room able to overhear my giant vibrator. (Oops.) It went on like that for a while; it had scenes where I was stuck in gravel, or in my wheelchair behind cars that were backing up and shouting for them to stop and knowing they weren't stopping, or waking up over and over, or thinking I'd just gone to the bathroom in the dream but then still having to go, or realizing I had no pants on; all of that.

It was a perfectly good day yesterday! Why the dreams! Maybe because I had a few nights of taking muscle relaxants, and last night I didn't?