Posts Tagged ‘sciatica’

Diagnosis, sort of

I’d like to just give the short version for now and more diagnosing process will happen later.

I went to a neurologist. Dr. Capybara said I am obvious mid to high spinal cord injury, incomplete and high functioning. Whether it is the old car accident that did some bruising or compression, and it has been periodically aggravated, or whether it is some weird syndrome or degenerative thing, they will tell later, and also more precision about the level, but maybe c6 or upper thoracic, and it is also not necessarily pinpointable like that but is more complicated. So other doctors and ortho people were looking at my lumbar spine and sciatic nerve root and discs and not seeing anything and also noticing that my right leg has amazing muscle tone, and them figuring if i have a disc thing or muscle/ligament injury like a back sprain, I am not getting better fast enough which is somehow my fault. (And they’d do things like reflexes and poking me, and act like I was overreacting and faking pain.) But my leg has (legs have) amazing muscle tone and often so much pain, because they are spastic. As in spasticity. Like, not under my voluntary control. Also, the stuff with my arms that only acts up now and then, is not like RSI or some sort of separate neck thing that flares up, it is the same spinal cord injury. Or lesion. Or whatever it is. Maybe it is MS but maybe not. Whatever.

My assignment is to take these seizure meds at a low dose at night and then increase them slightly every week, and see if that helps the pain. Also I can have baclofen which (unlike regular muscle relaxants) might actually work.

How kind of the neurologist to gently take off my socks for me, completely understanding, and to then put them back on. And to believe in how bad my pain is.

Cold is so bad, mostly because of spasticity. But for years people kept just running blood tests on me and saying I don’t have arthritis so, the pain was… I dunno, just in my head? Or that I should exercise more.

This diagnosis, imprecise as it is, puts a different spin or frame on everything for me. Instead of being sort of a malingerer who doesn’t get better fast enough, I am something like a C6 incomplete para with very high functioning, who got better amazingly and slowly over time.

There is some backstory here:

2007: Day of things breaking This year’s flareup begins, stutteringly
2007: Sciatica pwned! more beginnings of this year, my hopeful feelings
2006: a little babbling while the drugs last In pain, I write a letter to my body, and photograph my uncooperative legs
2006: a little whining about my legs A bit of a flareup in 2006, pain and spasticity
2006: in which I pass the evils of capitalism across generations I describe a flareup in Feb. 2006 and remember the bad times
2006: Now with flames I muse upon my secret past as disabled person (expanded upon in comments)
2005: walkies One of those moments when I was feeling the pain and weakness and getting scared
2005: dyke march report – In which I march on legs, and reminisce about times past, and run into Joi who is also intermittently disabled
2004: giant pathetic rant from 1994 I transcribed a journal entry from a 1994 notebook, interesting
2004: Not at all meaning to be mysterious the story again including the car accident, concussion, original neck/shoulder/arm immobility (worst pain of my life, threw up and passed out), asthma, and degeneration sequence in 1989-1990.

(from 1989) I keep getting worse and worse shoulder and low back problems: same thing, I sneeze, or bend over to tie my shoe, and suddenly I’m sort of frozen in one position and can’t move and am gray and sweating with pain. The doctor gets more and more frowny. X-rays never say anything significant.

I remember these times, which haunt me,

I could no longer raise my arm above my head. Who knows… All sorts of badness then happened… My shoulder got better but my back and leg got worse and then the other leg started just collapsing under me. I would take a step and the leg would just buckle. No idea there. I lost my job.

After collapsing on the campus of DeAnza I ended up in Valley M3dical Center being kicked around from department to department having conversations like this: “I can’t walk, what am I supposed to do? My legs don’t work.” “They look normal on the MRI and the xray. Without a diagnosis, we can’t give you a wheelchair. You can’t get a diagnosis until you see neurology and they don’t have appointments and won’t talk with you until 9 months from now.” “But I CAN’T WALK.”

More detailed backstory, in a coherent narrative, with photos:

*Moody retrospective In which I start to tell the story of wheelchair, crutches, cane, walking and all those fluctuations. With photo of me rollerskating naked down Market Street in 92. I forget, often, that in 90-91 I often couldn’t walk, and doctors were telling me it was because of “referred pain” from pelvic inflammatory disease that mysteriously they could never find any evidence of, or because of internal adhesions and scarring. 1991 was the days of peeing in a bucket because I couldn’t get to the bathroom, and not knowing why, and welfare hospitals who treated me like I was a junkie seeking pain meds. 1990 was when I couldn’t ride my bike anymore, and couldn’t get to work, and many other disastrous things happened.
* Scrabble in the park How I saw mountains for the first time, and hobbled to Vernal Falls. Some horror stories of bad diagnosing from welfare hospital doctors. How bad the pain can get, trying to hold myself up with arms off the seat in the car, because of the vibrations. The feeling I have had for the years of non-disabilty, of effort and bravery and fear.
* Ms. Muscle How I stole a wheelchair.
* Between the post office and cafe Depths of the hard times, 1992 or 93, pain and disability level much worse than I am now. In which going to the cafe, or walking to the mailbox, was the highlight of my day. A lot of days on the porch wrapped in blankets, eating pot pies. I encounter people’s strange, rude, reactions to visible disability.
* All dressed up with someplace to go – babydyke badger with wheelchair, 93-94ish, going to parties and being a wild child no matter what
* Santa Cruz Mountains – 1994-ish. In which I treat my cane as a punk rock fashion accessory
* Growing out my hair – In which I could mostly walk, but sometimes wheelchair. Handrails and bathrooms explained.
* Cactus Club In which I get better slowly in 1996, onward, give away my wheelchair in 97, and limp for years. And then got pregnant 3 times and had Moomin. 2001 onwards, occasional winters on and off crutches.

I think of all the years that I had to explain things at work like why I needed to lie down under my desk, and just get horizontal; or why it was sometimes hard for me to walk across campus and sometimes not. I think of all the countless hours Rook massaged my legs, or that I had to lie down during our role playing games. All that time Rook always accepted me and without question helped me manage pain, ran me hot baths, sometimes would rub my feet for *hours* while gaming or while he watched TV. I worked hard on my own, but he got me through so much of it. All the times when for months I would manage a day, barely, but would come home from work and go to bed at 6pm, and he would deal with all the rest of our life and practical things. (Even when I was “not disabled” these last 7 or 8 years, this would happen.) All the times I was in university classes and would lie down on the floor to take notes and people acted like I was a freak. And I would just have to say, “Well, I have to.”

All the years when I couldn’t explain very well.

It is killing me a bit to think all that time, I was fighting a spinal cord injury, which if it were diagnosed, I would have had a lot of help, and real rehab.

As anyone knows who has not had a diagnosis and then gets one, it is a relief to have an explanation to give. No matter how scary the diagnosis.

I do (as always) feel proud of my years of struggle to get better, and I always respect the hard work that took. In job interviews where they ask what, outside of work, are you most proud of as an achievement, I always say “I was in a wheelchair and used a cane for most of the 90s, and got out of it.”

That sounds wrong in some ways because there is nothing wrong with using the wheelchair. But I am proud that I basically managed my own rehab, consistently, for years.

This post is longer than I meant it to be. I am having trouble processing all of this.

I trust that I will get back to where I was at the beginning of last week, and will be walking with almost normal gait for a block or two, and not constant pain. That is my goal. If I can get from Zond-7′s house to the cafe, and from my house to Hole Foods, then I will be very happy with that level of ability. And then from there I will set my goals further to walk more and more.

For now I would be happy to be able to *wheel* to the Hole Foods, but I can’t yet. I’m going to drive to work today, and ask for help, and lie down on the couch while working, to save my sitting-up time for the evening thing.

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Speaking of privilege, that massage was awesome

So Tom just gave me a 2-hour massage and did something bizarre to the front of my hipbones. The… ileacus… and the psoas, and the quadratus lumborum, and the ileotemporal band (which I agree is a great name for a rock group) and finally… stabbingly and with yelling agony but one could tell the productive kind… through all sorts of layers of ouch to the errant piriformis.

I had no idea the whole enormous muscle coating the insides of my hipbones were hellishly aflame with evil. He went for them right away, and I had a “no absolutely not, that just isn’t comfortable” reaction, it felt so awful. “Besides, that’s not where I hurt.” Huh. Yes, it was where I hurt. Weird! And now I can move my leg all the way forward, instead of lurching with my entire right side stiff to drag the leg. He also said that it seems like a piriformis or muscle thing and the whole thing could be muscle spasms or at least the truly awful part, and it isn’t necessarily a slipped disk.

The not true part was that he would massage me till I was done with it. I could have gone 4 hours easy.

I’m in way less pain, and I can move my leg!

Hmmm… piriformis syndrome and other sciatica information here…nervemed.com. I know, not the best of sources! Here, there’s some talk of toes and feet and pain and low back pain. My back hurts, AND my butt hurts, and all my toes hurt. Huh. Whatever.

I’m working on rotating my leg outwards while doing the different physical therapy exercises. That seems like it’s stretching the right spot. Pre-massage I couldn’t tell that was true – everything was too tight and painful to move.

So even if it is a herniated disk, there’s clearly a whole other level of evil that the massage helped.

Okay, here’s a better source: the merck manual on piriformis syndrome.

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How to put on your underwear during a sciatica flareup

Things are feeling a bit better. I can hobble around slowly, though it makes the pain worse. I can lift my leg up a lot further, without using my hands to pull it.

For your amusement and edification, a lesson on underwear! It’s hard to put on pants and socks and undies when one leg doesn’t work very well, and I can’t bend over. But I have a million old lady bad-back tricks.

It helps to start with stretchy underwear.

Sit on the edge of the bed.

Drop underwear on the floor, carefully positioned.

Insert non-working leg into place.

With toes of working leg, scooch the underwear up your bad leg to where you can reach it with hands.

Insert good leg. Here’s where you need the underwear to be stretchy. This can be a hard trick. Don’t fall over!

Voila!

Jeans are harder because they’re not stretchy. Skirts are easy, but they kind of suck because they can catch on crutches and hike up. (Oh well.) Socks, well, I struggle there, it’s not completely impossible, but it’s better to ask for help with the bad-leg sock.

Yesterday was a dark time, and it felt very hard to reach out and ask for help and emotional support, I felt very ashamed and foolish, so thank you to everyone who has been so nice and called or sent sweet emails or is coming over. I need it. It helps me feel more normal and jolts me out of my shame-spiral. People get sick or injured, they go to bed and rest, they get better, it’s normal. It’s not some kind of massive moral failing. (Yeah, that’s where my head goes, weird huh?) It was the hardest thing in the world to ask Rook to come home even though he called me spontaneously to check up and to offer to come back. He took care of Moomin, got us a silly movie (the first Casino Royale – omg the *outfits* and the absolutely ridiculous “plot”!) and brought me things in bed, petted my head, (I think I needed a bit of that all week, and didn’t ask) and held my leg up in traction for a bit, which brought me a complete absence of pain and made me cry with relief. Traction! I wish I had a pulley thing in the ceiling and a counterweight.

Also, I took the muscle relaxants again after refusing to take them for a couple of days. I’m doing the physical therapy exercises – over and over. At least once an hour.

We don’t have any special easter thing – or spring thing – I had gotten some chocolate eggs weeks ago – When Minnie comes over I think we’ll make devilled eggs and hide the chocolate around – or something – I feel sad that it’s not more festive for Moomin – but another year. I hobbled outside and cut a small bouquet of garden flowers. Moomin asked Rook “Am I a Christian?” and I answered he could learn about it and make up his mind later. Really, oursin’s commenters’ holiday suggestions are so much nicer. Discovery Day, with fire and silly cave-person outfits! Big Bang Day! Genocide remembrance day. Antiwar Day. DinoDodo Day (to honor/mourn extinctions).

Other than getting up to cut flowers I will stay in bed. Or maybe I could go outside another time and lie in the sun on my foam cushion – sun would be so cheering – if Rook sets it up for me.

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Sciatica pwned!

Let me just boast here for a minute that I’m a total stud. Pain and crutches can’t keep me the hell down. Of course, it helps to have insurance, money, and someone to drive me around. I lucked out to get my *real* doctor stat, and not the ham-handed Bulgarian who thinks Ibuprofen will give me Reyes Syndrome (??!!) or the crusty-eyed crazy guy who always rants for 10 minutes about the Great Importance of Taking Your Temperature. Neither of them would have done what I wanted without a lot of runaround and weeks of wasted time. No!! Instead, I got my awesome doctor who is a sports medicine person, and so who knows what it means to be injured and yet not want to let it keep you down.

Therefore! I now have awesome physical therapy, Celebrex, some kind of scary muscle relaxant to take at night if I need it. “I don’t really like that stuff…” “Girl, you know what happens at night, you’re not going to rest until you’re crying with pain, that’s what I do, so have this at your back.” “Okay well give me one I can cut in half because I’m a super lightweight and don’t like to be drooling and passing out.” I also have a disabled parking placard thanks to her having the form all there and ready, and thanks to Rook hauling ass to pick me up and bring me to the DMV, and thanks to the DMV people letting us slip in 2 minutes before 5pm and not giving us any hassle.

However, the trip to dr. office plus the DMV has me pretty exhausted and I’m already kinda thinking “Huh, a muscle relaxant might not be so bad, even if it’s called ‘Soma’.” But first some ice and heat and Celebrex. It’s true that I really really hate that passing-out feeling of my brain not being my own.

She offered to MRI me right away but then we talked a bit, I gave her the history, and she said well then maybe wait a week, if it gets better no need, if it doesn’t, then whatever we’d see, we’d still see.

Now, they MRIed it in the past when it was like this and saw nothing, but on the other hand I was at Valley Med and on welfare, so who knows, my whole disk could have been bulging out like a nasty water balloon and they could have missed it in favor of their favorite diagnosis, “crazy lady meds-seeking malingering crack whore.” (Nothing against whores; if anyone in pain needs some meds, it would be crazy malingering crack whores; I don’t know why it’s such a hard thing to help them out with some medical care and pain relief.)

It’s so heartening to go to a doctor and get actual help! And with a nice positive attitude too.

Lying in bed is actually the worst thing for me. It’s depressing, boring, not really that good for your low back, and it hurts me physically — I need to keep as active as possible. SO tomorrow into the fray once more.

If I’m not significantly better by next Monday, the hard bit will be getting to southeast San Jose. I think I can do it, especially with the parking thing, but driving that far might be tough.

The doctor properly admired my awesome duct tape crutch pockets, gratifying my need to see myself as a brave resourceful clever person who is not slayed by a stupid leg that acts like a piece of dead meat.

When I can walk fast again and go bounding up stairs and curbs I’m going to be so appreciative!

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Day of things breaking including the most inconvenient bits

My intermittent computer crashes became worse this weekend. This morning my computer hung and even the clock froze – at 9:27. By 11:30 I was at the Apple Store showing off my frozen computer. (I left it frozen and worked from another computer this morning.) They did some sort of disk first aid program on it – nothing. They had me back up my recently changed files onto a dvd. They ran a hardware check on it and everything passed. Soooo then they declared my computer would have to stay there for indeterminate time and maybe an archive and install or logic board replacement or another HD replacement or lord knows whatall else. “I really don’t want to do that. Waaaait a minute… shouldn’t we check the log file of crashes?” I didn’t remember where that was. (Applications — Utilities — Console). They did not really look at it, so I sat there and read through it and then remembered my clock frozen at 9:27. Yes! Bingo! Something nasty happened at 9:27 and it had something to do with /var/vm. “Well, we don’t really know what that is, maybe some sort of software problem…” “Okay well it’s either your virtual memory OR it could be something to do with my vmware installl, but I doubt it.” Blank looks. “Well it must be virtual memory.” “Well if it’s not from an Official Apple Source….” Oh whatever!

I sat there at their “genius bar”, googled and found many pages of people bitching about a sleepimage, and a memory swap, and the swapfile taking a snapshot of your computer pretty much constantly *just in case you lose power and need to reember the state of your system*. Or something. Yeah right, assholes, like I’m worrying about my battery falling out of my computer? OMG! Sounds nice in theory but in practice, this zillion-mb file was being swapped in and out of virtual memory and now that I’ve DELETED THAT ANNOYING FILE, my computer is nimble, no more weird hangs, delays, spinny thing, etc. I bet you anything that fixes the crashes, because for the last hour my computer has been nice and fast.

*Breathes*

Meanwhile, I felt pretty normal and good last night and even this morning, but as the day progressed I stopped being able to move my leg forwards very well. By a couple of hours ago it was impossible to hide my limp. And getting up out of my car just now, I had that thing (so horribly familiar from past years) of *not being able to get my leg out of the car* so I had to pick up my leg with my hands and haul it up and yank it over, then drop it. My hip is all weird, my leg is painful, not reliable, sort of wobbly — not mechanically but whatever the nerve is doing, is not reliable at *all*. At Moomin’s school (And I was late to pick him up as I completely forgot it was Monday and pickup was mine despite having reminded myself in the morning about it, god, the shame of going into the office there to get him!) At Moomin’s school I realized I was going to have to park illegally and hobble in. I considered the cane, which luckily with great wisdom and paranoia I keep in the trunk. Rejected the cane but that might have been pointless and dumb because limping is bad enough. “OMG WHAT HAPPENED TO YOUR LEG!!!” “Er. Nothing really, it’s an old injury that flares up sometimes.” (For this situation, need giant sign to hold up that says “It’s probably not MS so would you mind stopping thinking that?”) Now I’m on the cane. It hurts a bit less and makes me worry less about FALLING OVER. My leg is dragging like it’s attachd to someone else’s body.

Luckily I’m a philosopher. This helps with the giant wave of weeping freakout that I could be having at this moment but am managing to remain detached from. A cane is not so bad. It’s just embarrassing.

Also I was really proud of not having needed it for years though maybe there were a couple of short intervals… but I didn’t count them and so I say no devices since 2001.

Fucking leg… Or back… or sciatic nerve or disk or whatever it is…

It’s probably swapping out its virtual memory. Or maybe it’s on spring break.

Cane or not? Balance and reliability are important. It does help a bit with pain. It doens’t help me move my leg forward, really, which is the hurtiest and hardest part. It is also hard, lying in bed right now, to bend my leg upward so that my knee is bent. *testing* It’s hard if I’m lying on my side too.

I can totally handle it, but I’m just a little bit scared and don’t want to be (seen as) disabled again.

This morning I walked 2 blocks to the school and didn’t think anything of it and it was a lovely sunny day to have a pleasant 2 block stroll. But then I started hurting in the car, and parked near work, and had to go up this huge ramp that was the worst thing ever, and then had to walk more and then walk *more* to the store. You see why the whole thing freaks me out – aside from plain old pain, which is tedious but I can deal — sudden readjusting of actual mobility really blows.

Better my legs than anything else, really, legs are pointless compared to, say, hands! Legs, fuck off! No, wait, I didn’t mean it, I take it back, legs I’ll be your best friend if you’ll just behave!

*Not freaking out* *saving freakout for later* *working now*

*****
Okay, Rook just persuaded me to call the dr. in the morning. It seems pointless, and I don’t want the millionth pointless inconclusive MRI of my life, but on the other hand I could get some good NSAIDS and physical therapy. I vaguely remember some exercises I used to do and the gist of them was to just keep moving around even though it hurts, but not in any weight-bearing, vertebrae-twisting ways. Rook also points out while I have had a million pointless MRIs, only a couple of them were on my low back. Huh. I am unwilling to deal with medical crap unless there is a clear goal or unless I’m desperate with pain.

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bad sciatica

The pain from (sciatica or peripheral neuropathy or whatever) is already nasty and it’s not even 10am. I’m going to work hard now while I still have the mental energy. At noon I’ll shop for Moomin’s party at 2 stores down the street from work. Then I’ll work some more but I’m afraid I won’t be at peak mental capacity because of the pain in my leg, foot, and back. Maybe it’ll get better, not worse, over the course of the day? I’m limping, and being careful how I move, and have good back support in my chair and my feet on the floor (with the option to lie on a couch if I need it.) $deity (as whump would say) please let the pain not be nasty or help me have patience and not be cranky tonight for Moomin’s birthday. I used to live with this pain and worse every day and I learned how to deal with it… and promptly forgot when I didn’t need to deal with it anymore.

It is also scary because if my right leg is like this and my left knee also goes out, as it’s prone to do, then I’m limping on both legs, which doesn’t work very well, as you can imagine. Also, when my right leg gets like this, it also has been known to buckle without warning and I fall over. I like to think of it as “gracefully sinking to the pavement”. My fold up cane is in my trunk… 3 blocks away… and right now it should maybe be in my backpack. But maybe that is the paranoia about disability talking and is not realistic. I can’t tell, honestly! Probably just a couple of days of “ow, my back is twingey” and it will blow over completely (as it has ever since 2001-ish). But you see how I can’t help worrying.

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The crazy artist hippie neurotic anarchist insomniac gene

All weekend and yesterday prepped for class and graded and made handouts. Halfway to San Jose I realized I had forgotten the big folder with all that stuff! So had to improv an hour and a half of teaching. I think that turned out fine, but it was stressful and made me feel bad about myself for doing such a dumbass thing.

Lunch with my uncle. Got stuff for Moomin’s party on Friday. I thought I would be late to pick him up from the bad traffic (and bad judgement) but I made it on time! Only just! After calling 3 people and the school!

Spent about 1.5 hours at school talking with teachers and just hanging out. Somewhat annoyed at opacity of school process. Very annoyed at mysterious crap around “The Test” and about general comments and atmosphere of “he should ‘really’ be in 1st grade by his age… developmentally… social… maturity.. etc.” Oh whatever! What the fuck ever! Plus the attitude that education is painful and they must be saved and protected from it, lest they be traumatized by having their spelling corrected or being taught multiplication concept before Piaget, dead French guy that he is, says it’s okay for their inchoate mathiness to possibly handle. Again, what the fuck ever! Annoyed. Anti intellectual hippies! Moomin’s essays cute as hell, but stilted from dumb teaching of 5 point essay structure (too undeveloped to learn times tables, yet writing a 5 point structured paragraph over, and over, and over, and over…). Bah. His report card was lovely and I was especially happy to know that he participates more and checks out less. His teachers *are* fabulously nice, and sweet, and love him, and give lots of the kids individual attention and thought, which they can do because it’s K-2 and they have the same kids for several years. So I appreciate all that part and their work. I think there is a basic philosophical disconnect… like the “let children just be *children*” attitude… well if they’re GEEKY CHILDREN then they need lots of intellectual stimulation! Or, rather than thinking a person is reading “over” their grade level and they don’t know all the words so it’s not developmentally appropriate, realize that they’re learning the words that way, from context and repeated exposure!

At home, I had a million emails to read and answer. I melted down a bit and cried in bed and bled all over and had cramps, the bad first day kind. Entire uterus fell out of me. Blood at the point where it was difficult to handle, and in fact i had been in the tiny miniature elementary school bathroom trying to deal with it… omfg. Out of control. Anyway. I had sciatica on top of that. In fact right now the cramps are much better and volume of insane flow is down to normal, but my whole leg is fucked up and my foot is alternately burning, hurting, and tingling…. peripheral neuropathy or sciatica or whatever you want to call it… I don’t even care what to call it. It’s so random! Sciatica hasn’t happened for months and months. Please let it be gone tomorrow. Oh well! Must endure! Blog, you’re where I whine about it so as not to whine to actual people in realtime!

Despite that I whined to Minnie over chat and called xyzzy and whined and got his counterwhine, which made me feel better since god, at least I’m not THAT whiny (as he pointed out with excellent doublethink that persuaded me that listening to him whine was super entertaining and useful… you see his twisted mind and powers of persuasion?) and then I laid in bed with a heating pad feeling doomed some more. I can’t see xyzzy for days and then maybe on the weekend for some unspecified amt of time and then not for several weeks b/c of travel, which was a depressing thought and then the meta thought that it was depressing or affected me made me feel anxious. At some point I got up and played with Moomin and fed him a snack, and went out to dig in the garden figuring that mild physical activity would improve my mood and help be a distraction from pain. Also to get me the fuck off my computer for a bit. This worked. I dug up the loathsome stinkhorn red net things that were all over the front yard, and de-spiderwebbed and weeded the secret clubhouse. Then I started hurting again, but Nukie had come over and he and Moomin need some supervision when together, and lots of feeding because Nukie is always super hungry even if he has just had dinner. Got to see Peanut a bit too and fed her tortellini. The Acrobat and Pilot got me tacos from the great taco stand down the street and I’m forever grateful! I sat with Moomin to do homework and went over a bunch of his school papers with him and praised him lots. He sang “Red River Valley” with all the verses and choruses, from the back of a Magic Treehouse book & a made-up tune.

Right when I was coming out of total nastiness and despair, Caraja called me just to see how I was doing as we hadn’t talked in a few days, which was really sweet and made me feel way better. We gossiped and she told me a story that was perturbing and yet also impressive. (Detail impossible to blog.) Literary gossip.

Rook came home and took all the right kinds of care of Moomin. They sang songs. They ate ice cream. A bath happened. I did some worky thinking and other stuff, which was interesting and I felt a combination of concern for the issues and excitement that the ideas are exciting and there is so much to learn and think about. Talked with cd and felt slightly dumb and then realized (again) that I’m talking not just to smart people but people who have been thinking about this same thing for several years, and I’m just coming into it from a related but oblique direction, and the fact that I can have a sensible and interesting conversation at all with someone like that means I’m respectably intelligent and my usefulness or future usefulness is apparent.

As Rook washed the dishes I felt a huge surge of gratitude that he was taking up my slack. It has been really rough on me in every way to go from 0 jobs (with school up till recently, and lots of blogging, but still, different) to 2 totally new jobs. It would be so much rougher if he were the sort of person who did not step up to do things. Or if I were fighting with him over housework or bossing him and reminding and nagging. Instead, not at all. He washes dishes, I do laundry. We’ve both been shopping. I think of him romantically in the same breath as the Marge Piercy To Be of Use poem and also think happily to myself that he is a good co-oper (both high compliments…) as well as a feminist man who does not just talk the talk. It is a bigger deal than you might think unless you’ve been in a housewife/stay at home mom role.

Hot tubbed. Aaaaaaah. Life sweet again.

My uncle came home and we had a fun talk that I found strangely heartening. He told a funny story about how when I was 3 and he was 5, he was reading a book and I was reading it next to him and he realized that on every page I was watching him and waiting for when he’d be done. I bet this is true, but probably we were a bit older. I remember reading things like Uncle Wiggly with him, and then all his Alistair McLean books. Anyway, we both have the crazy artist hippie neurotic anarchist insomniac gene, which skipped my dad and grandfather. He showed me his system of musical transcription of chord progressions which helps him be such an efficient teacher and composer and which got him in weird .. not trouble but, people kind of messing with him from big music companies and some “chilling effects” action going on. He listens to a song, transcribes it, and can teach it instantly and he has thousands of songs carefully written into paper notebooks with numbered pages and indexing. So with his fabulous system, even beginning students come for a lesson, want to something new which they bring in on a CD or tape, and walk out half an hour later able to play 2 new songs. If anyone knows of a studio apartment in the Inner Sunset he’s looking for one, and if you want an awesome guitar teacher then let me know and I’ll refer you! He just took over another guy’s teaching business and so has 30 students, but room for more. Anyway, our conversation was fun and we have some basic attitudes in common. I’m glad he’s out of the land of R*msfeld’s vacation home and the various depressing things about living there. He also said the insomnia was killing him and was the root of his alcohol problems (also killing him). Sounds familiar.

It is amazingly soothing to blog all this and get it out of my head.

& so to bed!

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assortment of thoughts

Links from J.: compares book prices!
poems in a bunch of languages

Afternoon at Debbie’s. I was in traffic 2 hours and something… that? lingering exhaustion? fog and cold? general emotional turbulence? Yesterday’s intense house and yard work and brick hauling etc. ? In any case my back is out, a bit, and my knee, and the toe and finger aching that makes me feel so crazy-tired-impatient-snappy. Moomin was a bit carsick and took hours to perk up out of it – he gets sort of clammy and sweaty and droopy and clingy, which I find hard to take. Alan nicely played connect 4 with him for a bit. I forget always how much pain saps me completely.

I am in a sort of toxic whiny-space. Fretting. What to do with myself? I will spend several days this week working hard on these poem translations. Will meet with Yehudit about her work and my work and our co-translations too (Tuesday?) I need to work towards getting some kind of real work, or job… I had to cancel the after-school care since that has not happened yet. This week I will have as my goal, though, to sleep a lot and do a lot of walking if I can. It’s scary to have the sciatica come back so hard and so fast. Good quality sleep…

I am uncomfortable being so needy right now. Thanks to everyone for all your kindness and tolerance and listening and help…. I’ll snap out of it.

Quilty and Grace and nakedjen all talked me down today. And Debbie. and I could take even more. I could suck up all your collective talking-to and still be in a sort of horrid spiritual wasteland. But it all helped immensely. I hope it all sticks.

The fabulous people at Debbie’s. I said something obnoxious that hierarchy depends on torture. Compulsion and force require the existence of torture and torturer mentalities. Bullying. Ganging up. Power taken and given. To have a powerful group you need a disempowered (and the potentially dehumanizable, or the definitely dehumanized.) The guy with the ponytail who is a teacher whose name I forget had sympathy towards anarchy, which was nice. Steven added the qualification that inescapable hierarchy requires/depends on torture. I think he is right to add that bit. when pressed I could not explain what I meant very well but it was interesting to hear other people talk about it in all seriousness.

Lizzie L. mentioned a book called The Looming Tower that explains the background of Osama bin Laden – it sounded pretty interesting. We all talked a bit about the Tiptree book.

Re-reading my posts from a year ago. Also depressing. What have I done with it? How have I helped? I stopped… and did not reach my goal of integrating some kind of good useful work with my life. I think I should be blogging for nonprofits or doing some kind of reporting like that. What am I good at? Where can I be happy, and useful, and bring my skills/talents to bear, and have it sort of be a job or a career or both? I am good at writing to get people interested in things, events…. at least it seems that way… I also like to teach other people to blog and start communities and see what happens when people start hooking up. What will they do with the tools? I love that. What will they create? Where does that go for them? Yes, I think everyone should have a blog and a zine and write their autobiography and have their own encyclopedia entry. Why the hell not? I mean of course. Think how interesting it would be!!! Anyway, I like that kind of empowerment trip, passing it along a little, for whatever it’s worth. I am enthusiastic. I like things. I like people. I am pretty decent at transmitting those enthusiasms, love, general interest in life. I have vision, and am good at … whatever a nicer word is for ingratiating myself into new situations and doing stuff. I come up with infinite ideas. Adapting to complex situations very quickly. Surely there is something between activist, journalist, and marketing person?

My problem, always, is that given an organization I will generally want to tell its head what they are doing wrong, and there are clearly productive ways to do this and not so productive, but sometimes it’s not clear. So will always speak truth to power. A strong enough power would value this properly – I am serious. The problems of generals and kings extend to the corporate and media worlds, where powerful people, or those percieved as powerful, will never hear unpalatable truths because people close enough to speak to them will have a vested interest in not being the messenger who gets shot… I am sorry if that sounds grandiose. I know most of my problem is sheer cluelessness, and also, being used to being a sort of loud gnat or minnow with teeth. And I have grown up into a small nervous shark, a neurotic barracuda, more powerful that I really am used to, as I am not used to anyone listening or hearing and so therefore saying whatever I damn please has not been so bad. Can’t my flaw also be my virtue? I think so, but I have to look around for some kind of path to follow to make that true…

Anyway.

In the car driving home (yay ibuprofen!) Moomin and I traded math problems. He has forgotten a lot of 7+ 6 sort of things, basically, over the summer he forgot anything that’s not on 2 six sided dice! A few days of practice will get him back in the groove. Then he said something so awesome, “Mom, I’ve been thinking. It keeps coming into my mind, over and over, and I keep thinking it, so that I have this one question I want to ask. Where does Dav Pilkey go to be a writer? What is the place where he does his writing? Because when I grow up, I want to go there, and write books, and be his partner.”

Damn that was awesome. Then he began to describe… stammeringly excited… his book “Ricky Ricotta and his Mighty Robot vs. the Stupendous Sonic Snakes from the Sun”. The snakes (Starring Sergeant Slither) wwant to leave the Sun because they have to go around in hovercraft all the time: “Because, of course, the Sun is always very fiery.”

This conversation continued. It really puts things into perspective!

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back in the saddle

Totally bizarre, I feel great today. Just a sort of regular touch of “ow, sciatica is there, foot tingling, back hurty” but no difficulty functioning.

Thanks, leg! I’m glad you work again! I won’t ask too many questions. And if it happens again I’ll try not to spaz out so hard about being crippled, as 2 days ago I was resigning myself to possible persistent disability and trying to readjust my concept of life That Way.

Again… to my leg… thanks for your good behavior.

Happy birthday to me! I’m even more almost-40 than ever!

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status, and plea for a swimming pool

I’m following the basic sciatica advice of resting, ice, advil, and walking for a few minutes every half hour.

Can anyone take me swimming at the Y, or anywhere with a relatively warm pool? I would really like to walk around in some water that isn’t super cold, I think it would be very helpful to stretch out all the muscles.

Possibly I can call the Y and ask for a sort of sample… though it’s not really my first time there. Can I just add that they suck for not lettting people just come in and swim like a public pool… but instead you have to pay like 800 bucks to join for a year, which i’m not going to do.

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