Posts Tagged ‘pain’

Day of grief -

With your pinks, dull or violent,
and your golds, vague or sparkling,
You’ll fall asleep – Oh day that has wounded me!
In just a few seconds.

All the slow and empurpled sunset
will serve as a pillow for your rest.
Bright summer day, how tormented
My sleep will be in comparison!

Twelve hours sharp as arrows
sank into my torn and bleeding side.
Mute, invisible rier that will flow
until I drown in its currents.

Oh day! You nod above the waters
with the grace of a drooping lily.
You don’t feel my grief, or give me a glance
as night falls on my howling lament.

The day just gets to go off and be a normal day going under the earth and will come back up refreshed. The day doesnt feel guilt or regret for the pain it brought to J. de I. (who wrote this in 1942)

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I wish I understood this plan for built in bookshe1ves. But I don’t.

This bookshe1f building video might give me a better idea.

More advice about shelves. No diagrams.

Oh my bookshe1ves! My glorious she1ves set into the wall!

Maybe I could try doing this in a closet first, as practice. If I figure out how to do it and make it look okay I could do it in one of the rooms.

I now have wild painting plans as well. I want to take off the grody plasticky white cabinet doors completely and paint the inside of each cabinet some rather dark color, maybe 3 different colors.

who knew that I could be excited about such a thing? But I am.

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old bills

Two paper grocery bags of old bills thrown away so far. However many cubic feet of paper that is.

The medical records make me sad.

Miscarriages are expensive. Over 6000 for the first one. I had heard the heartbeat whoom-whoom-whoomimg and felt like a happy goddess on top of the world. On April Fools (1999) I called Rook at work and told him they’d moved up my ultrasound appointment and it was actually two heartbeats and we were having twins. All my co-workers were gathered around giggling. Rook freaked out! I told him after about a minute of his stammering excitement. Maybe over the top?

It was a great April Fools joke except that a week later I had the real ultrasound and it was dead in there and in fact must have died some days back because it had all disintegrated in there in some disgusting fashion. I begged the technician to show me. “Could it be a mistake… please let it be a mistake…” She didn’t want to let me, but relented and even printed out the picture for me to brood and weep over. I dragged myself weeping around the hospital. I don’t remember much here but I do remember begging my doctor, “Get it out of me!” feeling suddenly diseased and horrible and unable to forget that I had death inside me, rotting.

They stuck me in a chair and gave me fentanyl which apparently means you can walk around and talk like a zombie, but you are at the same time sort of unconscious, and you forget everything that happens. Rook says he saw this happen and found it unbearably creepy. Of course, I have forgotten. They gave me other anesthesia but the fentanyl made it pretty merciful on me, all around. I hope that I didn’t experience pain and suffering and then just forget it. I hope I was really unconscious! It matters to me, but I will never know. At least I did not have the bad reaction to anesthesia that I had with the shoulder surgery.

Afterwards I was in horrible pain. We drove away and I looked out the window on maybe 55th street or something and saw a bunch of pigeons flying up and one of them was perfectly white. I sentimentally attached all my grief to it. When we got home I believe I took painkillers and drank some rum. A day or so later I was still in a lot of pain, doing that PID shuffle, and they checked me into the hospital. I forget what was going on. A fibroid tumor dying and shrivelling up I think. The other theory was “adhesions” which is a polite catch-all for “mystery uterus pain.”

This is when the horrid nurse came in, looked at my chart, and said, loudly and meanly, “Now that you’ve GOTTEN RID of your BABY, have you thought about what kind of BIRTH CONTROL you’ll use?” I just stared at her. I think I memorized her face with the laser like hatred that came out of me as I realized she thought I was a teenage crack whore and that the words “missed abortion” on my chart meant that I’d, like, done my own abortion and messed myself up somehow. “Missed abortion” means that the fetus or embryo or whatever died in there and didn’t come out as it should when it dies. Cleverly and thickly I squeaked, “Go AWAY” and rolled over, too stoned and sad to do what I should have done which was cause a giant fuss and get the bitch in huge trouble with my amazing suburban entitled-white-girl-fu. Sometimes I wake up in the middle of the night with this scene replaying just as it happened and then I try to imagine the different ways I would prefer to have handled it.

The 2nd miscarriage was more like 9,000 because it was surgery for ectopic pregnancy.

“I don’t WANT another baby. I wanted THIS baby.”

I love the baby I ended up with. But every april and september I think a little of the lost ones. Out of sentiment I will save the medical records.

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mars ho!

Oh, oh, oh!!!!!!

first images!

classic pose worthy of that “Mapping Mars” book and its great discussion of landscape paintings. Strangely I also think of a somewhat fictional moment of Severian looking at the painting of the man with the golden-faced helm that the old man is cleaning and when I realized it was a painting of the apollo moon landing.

My mom held me up to the tv to watch the moon landing when I was just barely born, nyah nyah. She knew even then that I would be a geek from hell. Thanks mom.

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Not at all meaning to be mysterious

When someone catches me limping or I mention the wheelchair of times past, people ask what happened and I have no easy answer. I usually say something vague about a car accident, which is about 75% a lie, just to change the subject because it is a long, boring, messy story and it doesn’t reflect on me very well. “Car accident” makes people nod and feel that they understand: there was a catastrophe and my body broke and it took a long time but I am more or less better. I might as well say “soccer injury”, it would have the same result.

So, hang onto your hats, here is the story.

I did get hit by a car. I was riding my bicycle and took off from a stop sign. A car rammed into me from behind – they hadn’t stopped! not even a pause! and I went flying in the air. I did a somersault and came down on my head, shoulder, wrist, and hip. I passed out and woke up to see two people bending over me – a lawyer and a nun. All my needs taken care of! I think someone took me to the emergency room. I was about 2 blocks from my co-op, and I have no idea what happened to my bike but maybe someone else from the co-op happened on the scene and took the bike home.

I had no helmet on and did not even own one. In 1989 or whenever this was, I don’t think I knew anyone who wore a bike helmet.

I ended up with some medical bills for xrays, a concussion, a sprained wrist, a very large bruise on my hip and some difficulty using my arm for around a week. The guy who hit me paid the medical bills. Then I lost his phone number and completely forgot his name. Oops…. My mom drove up and took care of me for a few days, maybe a week, as I was so addled from the concussion that I was shuffling around like a thorazined mental patient. I remember being really dizzy for about a week. I had to sleep on the floor as I couldn’t make it up the ladder to my loft where the bed was. I really don’t remember much of that time. The guy underneath me, Jamie, kept playing his electric guitar far into the night and my head would throb horribly. He wouldn’t stop even for a concussion, or my mom! JerkOLA!

A few months later I woke up and was unable to move my arm or neck. I got out of bed and went downstairs for breakfast (down 3 flights of stairs…) realized that the pain was getting so bad I could not stand to breathe anymore, tried to get back up the stairs. I passed out from pain on the stairs, and threw up, maybe not in that order… Someone took me to the student hospital, one of the most agonizing experiences of my life being bumped in the car. Again, my memory is fuzzy probably from the painkillers they pumped into me. End result: My shoulder was fucked up and so was my neck. A lot of physical therapy. A bunch of codeine and muscle relaxants.

After a few weeks of this, I could move normally again though my shoulder still felt like hell. The doctor got me to come in his office -the office with books and a desk, not the examination room. He asked me a lot of questions about my interests, how I spent my time, insomnia, waking up in the night, and then said the weirdest thing. “If you don’t become a very, very physically active person, you are going to be in big trouble.” What do you mean? “You lead a very sedentary lifestyle and you don’t sleep enough. You are just the sort of person that will have a lot of problems if you don’t make big changes. Your shoulder will never get better if you don’t listen to me. Quit school. Go become a ditch digger. Run a marathon.” I dismissed this as complete insanity.

Now somewhere around now I stop getting my allergy shots, just out of laziness and leading a disorganized life. A year or so passes. 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. My sinuses start to freak. I get sinus infections that don’t go away for months. Then I get bronchitis and I get it again and again. I get asthma all of a sudden. At this point I wake up and go back to my allergist, who yells at me. Back on shots. 8 million different asthma inhalers – they keep trying all different ones. Theophylline and weekly blood tests. I can tell you that theophylline is the devil’s business. I was on so much theophylline and albuterol that I was trembling like a leaf in the wind. Meanwhile, I could not breathe. I spent more and more nights hacking up huge ropy wads of mucus while my girlfriend pounded on my back.

Keep in mind I am 20, 21 years old… forgive me, universe!

I believe this was also around when I was disowned by parents for the 2nd time (this time for being gay basically) and was trying to support myself in grad school. I worked 20 hours a week in the library and had benefits. I was in 2 classes. I started having trouble getting to class. My ex boyfriend forced me to move and I moved into a tiny shack where dogs had lived in the middle of a field of ragweed, maintained by the worst lesbian activist landlord in the world. I got a bad pap smear and had some really unnecessary surgery – a whole other story but I nearly bled to death over a week in my squalid, allergenic shack, calling the gynecologist’s office every few hours (“are you bleeding more than a teaspoon an hour? because that is normal” Jesus fucking christ lady, could you put me through to the doctor? Because it’s been 5 days and ever single towel and article of clothing in my house is crusted with blood…) I had to quit my job in the library, because I couldn’t make it to work most days. I started stripping – in 1 horrible, smoky night of albuterol abuse in the sleazy club next to I-35, I could make as much as my whole week in the library. The other strippers didn’t press me to do drugs with them because they figured I was already high from the way my hands shook. The low back problem got worse, but I could do the thing where I kill myself one day, and then limp for a week. I’m sure I didn’t sleep more than a few hours a night, most nights. Oh, I think I left out the bouts of mystery illness, which were diagnosed as Not Chlamydia and Not Gonorrhea, but I could not walk from pain, and during pelvic exams, screamed and passed out when they wiggled my cervix, so, got diagnosed with viral Pelvic Inflammatory Disease of some unknown kind, though I had no fever.

Thus goes the slippery slope to hell.

I moved with my girlfriend from Texas to Oakland. This is the period when I got the mystery Pelvic thing again an d also some sort of low back problem that I still don’t know what it is, but it recurs and I just call it sciatica. When it happens, I have difficulty moving my right leg forward, so I limp with the right leg. (The left leg limp is from the left knee.) I also still couldn’t breathe, but had a nebulizer which was beginning to help.

Are you bored yet? I was. If at all possible, I thought about anything else other than this crap.

If you go to the doctor with this kind of history, as some of you may know, and especially if you are poor:

a) they figure you are a drug user and lying
b) they write you off immediately in many other ways
c) you are presenting with too many symptoms at once, and doctors can only deal with one set at a time. I learned it was best to go one time, and complain about asthma, another time to a different doctor, and talk about my back, and a gynecologist for the pelvic thing. Nothing got resolved, but it helped me look less like a hypochondriac lunatic which meant they treated me more nicely.
d) Any of these things, the doctor will just tell you “avoid stress” or at worst, tell you that you are suffering from hysteria. Yes, I was told that I had hysteria. Can you believe it?
e) did mention it helps not to be poor?
f) Also, don’t cry when you talk to the doctor, even if you are desper
ate, have been waiting for the appointment in terrible pain and dysfunction for 3 weeks.

It is only in the past few years that I managed to talk to a doctor in a doctor’s office without randomly bursting into tears just from the trauma of the whole horrible history of bad doctors.
I know there are crazy, bad patients, but there are also crazy, bad, lying, ignorant, cruel doctors, because I have met them.

I got better especially with the asthma but my shoulder got worse. I got temp jobs and then regular secretary jobs. It’s not like I stopped doing anything with the shoulder (such as playing excessive video games, mousing, or whipping D. with a heavy flogger) or began exercising. Well. *wrenches mind away from dungeon and memory of ex-girlfriend in leather sling and chains* Anyway, right before my COBRA ran out I got rotator cuff surgery on my shoulder which might have been a big mistake. But 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. That was when they started talking MS….

I just deteriorated… exhaustion, complete exhaustion so bad that sometimes I could barely turn over in bed. I could do it but everything was a struggle. Some days I was walking around, some days I was in the wheelchair. 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.” (why couldn’t I just rent a wheelchair? I didn’t know you could rent one for like 25 bucks a week, and no one told me. They made it sound like you had to have a special prescription.) At some point a social worker or nurse suggested in a roundabout, kafka sort of way, that it would be illegal and bad if I just wheeled myself out of the hospital in the one I was in. Bing! The lightbulb went off and I stole the chair, as instructed.

Later at D3Anza a guy who was paralyzed from L3 down or something, gave me his old basketball chair. I cried, it was so much better. If you ever know an old person who starts to use a chair, please, please, get them a light framed GOOD chair, it makes a huge difference. They have things you can attach to the wheel rims that are like big padded knobs if you have arthritic hands. Also, get them leather motorcycle fingerless gloves.

The new, good chair and my parents buying me a pickup truck meant I was now mobile and independent, even if I could not walk much. I could drive, and haul my ass out of the seat and, holding onto the truck’s side, sit on the tailgate and remove the wheelchair. Now you know why the bed of my truck is all scratched up. My arms got buff. It is actually a very good thing my shoulder was getting better by that point. Maybe the surgery was necessary, maybe the 6 weeks of not using the arm and being strapped into the continuous passive motion cyber-girl torture machine fixed it?

On the advice of D’s friend Alexis I went to her rheumat0logist, who did not think I was crazy and listened to my whole story. I think I typed up the details for him. From poking me in tender points and hearing of insomnia and the whole history of rotten health he told me I had fibr0myalgia (FM). He went down the hall and xeroxed a giant binder full of articles for me on what it was and what to do. It used to be called “psychogenic rheumatism” which basically meant you feel like shit and no one knows why and maybe it’s all in your head. In the 80s at some point the Amer. Assoc. of Rheumat0logists decided it wasn’t all in your head, but instead it had something to do with – as far as I understand it – If you don’t sleep for at least 4 hours uninterrupted, you don’t get to a certain stage of sleep in which your muscles repair themselves when minorly damaged. So minor damage turns into major damage over time. Apparently, if you sleep deprive a person, and they’ve done this in military experiments, anyone will develop the symptoms of FM). But it is reversible and if they can fix your sleep and you exercise enough, you will get better.

So, in retrospect, I realized the student health center doctor from my original shoulder problem had been right. He knew that I was on the road to FM, thus his advice about giving up books and turning to ditch-digging.

I did a rotten job of rehabbing myself and it took a long time. I suck at exercising. I credit the sleeping pills with fixing me. I would swim a little in the YMCA warm pool and do leg lifts and be walking for a little, and then I would do some dumb ass thing that would mean I was crippled again.

It is very boring to stay in bed and in fact for FM it is the wrong thing to do. The welfare hysteria-diagnosing doctors told me to stay in bed flat on my back for weeks. But about it being boring. Even if going out might cripple me more, and might be exhausting, and I am in pain as I hobble around in the cafe and post office or am wheeled about the museum, it is SO much better than being trapped at home.

The hospital warm pool was like heaven. I did a lot of walking in there. It is hard to walk again after not walking right for a long time. Even a week or two, I think, means you have to remember to make your gait right. Balance is just off — off in a weird way unlike being dizzy. Little muscles have to be moved with conscious effort – you have to THINK about it and do it on purpose, like breathing while doing yoga.

Meanwhile I was super annoying to everyone around me. (Minnie can attest to this. I should mention that somewhere in this history she moved to CA partly to take care of me. However I felt that I was also taking care of her on some level, despite our unwise involvement with F@k1r and C@rl@, because in TX she was strangely fucked up and calling me all the time in a semi-suicidal manner. (Can you believe I’m talking L33t to avoid googlebusting?!) Anyway she was helpful.)

Also in this time of wheelchairing was my involvment with the kids next door who I wrote about last March or so.

more in a sec, mars lander is landing!


okay that was just too exciting. I love the sound of nerds on walkie talkies. Oh mission control, let me be your geeky lapdancer…. *sigh*

whump is all red with delirium. “I’m just giddy!” he says like a prom queen thanking her committee. NASA signs off.

I think fondly of the wonderful lovely pathfinder panorama, and expect great things.

whump is ranting on in great excitement about “The Martian Internet”.


Back to our regularly scheduled broadcast.

I got some work tutoring, I kept taking classes, I kept making zines, but meanwhile me and SK, our relationship had really just gone away. D. and I were more or less serious but from a distance as she lived 2 hours north and was semi crippled herself from asthma. She did not want to have babies with me either, she had already done that once in life and couldn’t face it again! SK and I finally fought… he started dating some windsurfing girl… he moved out… well… I felt that I was on my way to getting better. It devastated me that he would not wait for me… but then we fought over the future too. I guess I should not go into it but he wanted to wait many years before any sort of baby-making and I did not want to wait. I wished he would marry me and commit to helping me get better and would support me whil
e I did it. He could not deal with the thought of me as a burden (as I had been for the last year of our living together). I didn’t want to wait till 35 to have babies because of my mystery pelvic inflammatory disease and the possiblity of ectopic pregnancy or infertility. And indeed several years ago I did have a horrible ectopic pregnancy, which if you don’t know what that means, it is that the embryo implants accidentally in your lumpy, scarred fallopian tube and basically explodes and kills you from peritonitis unless someone removes it.

I ran off, or wheeled off, and almost immediately married my old friend m. who was happy to gallantly open doors for me. Next to my cane and wheelchair, he with his leg-dragging limp, I think he felt like superman to the rescue. As I got better, he got worse, and I felt like he preferred it when I was sick so he could be the healthy one in comparison… I got better and better… it helped to have INSURANCE … holy fuck how that helped. I worked every chance I got… I am not really a flake despite what everyone thinks. Do you know how many awful temp jobs I have worked… and how many humiliating jobs I have had… the sheer number of jobs I’ve GOTTEN is amazing. I am an expert on getting jobs. When I started missing too many days from sick time it often turned sour but I never got fired. Last year’s flaky unemployment getting and 8 hours a day of babysitting was the first time I have been jobless and healthy.

Chronology is hard but let’s see. In early 1997 I gave away my wheelchair after not using it for many months, over 6 months. It was a very scary thing to do. I walked with a cane still. Sometimes I needed it, sometimes I didn’t but I always had it. The metaphor “like a crutch” is an accurate one. It is scary not to have crutches or cane when you are not sure if you need them or not. A hard transition to make. I’d carry a folding one in my backpack. I left my ex husband. Rook moved in with me almost immediately. We got married a year later. When I had to stop taking sleeping pills while trying to get pregnant or while I was pregnant, Rook would sing me songs and gently pet my hair and massage my head to help me go to sleep. He was very soothing. I got better and better jobs. He taught me stuff and always was there to help me stay out of the secretarial ghetto.

Every winter I would end up needing the cane or being on crutches for a while. 2000: after being more or less healthy for a long while and successful preganancy, I went hiking on hills with a sore knee and ended up on crutches nearly all winter, to my great despair and Rook’s great inconvenience. Moomin liked to play with “mama crutch” (horrifying words to hear from my child’s lips, as I had often imagined hearing them, and hoped to hell I would never hear him say “mama’s wheelchair” until he is 65 or so and I am 95.)

Last winter, no crutches (except that one week from twisting my ankle, an actual legitimate injury and I got better just like a normal person). This winter, no crutches!

My knee ached all today and I had to put my leg up and stop walking around for trivial things when I got home, and my sciatica acts up now and then, but it is NOTHING to the past. I am fine now. I am not disabled, I never feel the asthma unless someone smokes or I get bronchitis and then it only lasts for a month or so. I get my allergy shots like a good little girl. I don’t exercise worth a damn, but I should. I do sleep.

I hope that explains how I got crippled, how I got better, and why I mutter “car accident” and look away pensively.

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written earlier today offline

Thinking more of S.K. because of my dream last night. The way our relationship deteriorated. My bad health and worse way of dealing with it.


“Hmm, my knees and hip hurt a little. But it’s just a little and it’s such a nice day out. I bet I could walk pretty far with just my cane. Let’s go hiking and then there’s that party in the dungeon with D. and J. I want to go to but you can’t go because it’s a girl thing, and I’ll dress up in my highest high heels and miniskirt and fishnets even though it’s 40 degrees out and i’ll come home at 4am barely able to walk”

(End result: I am a helpless wreck for the next 5 days. I can barely get out of bed. I pee in a jar by the bed most of the time and run out of food in the house, eating all the toast and frozen pizzas and then there’s nothing else. I hurt so bad that I can’t sleep. I am incapable of having any fun or having sex or talking about anything other than bursting into tears about how I’m hurting and how dumb I am, god, life is unfair, my body has betrayed me, what is wrong with me, etc.)

Good (how I am now):

“Hmm, my knees hurt a little so I will be careful not to cross my legs or sit on the floor or squat, and I will immediately take some sort of NSAID and tylenol. I had better pay more attention to riding my exercise bike. And it would be a bad idea for the next few days to do anything that requires lots of walking. What needs to be done most? What can I skip doing, so that I can get in bed and rest my knees?”

(End Result: I continue functioning normally and don’t fall apart. I can take care of myself. I can work. I can go to the grocery store. I might get grouchy in the late afternoon from pain as the day goes on, but I am mostly still able to be nice to people around me that I love.)

So I read those letters from sk and meditate on how badly I screwed things up between us. It was not the polyamory, it was my selfishness and cluelessness. Near the end of the relationship he got mad and said, “You go out when you feel good, and then overdo things, and then come back to me and fall apart and I have to take care of you.” As obvious as this sounds now, it surprised the hell out of me and knocked me on my ass. It had never occurred to me that that’s what I was doing. Keep in mind I was all of 23 years old. It was clearly mutual cluelessness, as, if he had realized this and pointed it out earlier, I would have shaped up, but it happened to be one of his quirks that he just could not deal with illness or pain on any level so he withdrew more and more and I went further and further afield in my quest for god knows what – slut utopia. I was not an ethical slut, as I was not taking care of myself or my primary relationship.

After this epiphany, it took me YEARS to learn how to behave. It took me years of behaving, and taking sleeping pills, for my body to heal to the point it’s at now, where I can be a litttle foolish or injure myself a little and it’s a trivial thing not a life-shattering thing.

So a little sadly I have the old mix tapes from s.k. running through my mind like the “Beyond Love” song by The The or “Lay Lady Lay” or that dead milkmen song about looking for a girl. He would make these tapes and then write up a description of why he put each song on the tape, playful, funny, self-expressive or romantic.

Obviously I am not sad that things happened as they did, as I am now happy as a clam, and everyone else involved is too. However there are things to be learned here.

I resolve to try to be more consistently appreciative of the love I have and not ruin it through my carelessness and selfishness. It does not help to be a basically decent person at heart, as I know I am. That can only go so far.

It was karma payback time for me with my post-sk relationship – my ex husband. He had worse health problems, I mean really, really problems, and did not take care of himself (or pay one iota of attention to me) past, oh, month 4 of our relationship. As I was leaving him he insisted that a) he wasn’t sick b) he didn’t have time to go to the doctor or exercise since he was working hard to get his nobel prize and prove he could support his family i.e. me c) since he married me, that should prove he loves me forever and that should be enough. It wasn’t. As he continued not going to the doctor and not doing anything even remotely healthy and his bones started to crumble and break from overmedication and his kidneys started to fail, I left him like a rat leaving a sinking ship. I was a rat.

A funny thing I learned while writing an essay a few months ago is that I’m nearly always doing a sort of Maoist self-criticism (but without the barbed wire around the neck, house arrest, or beatings).

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giant pathetic rant from 1994

I’m starting to be seduced by those old boxes. I found my box of childhood stuff – my hexagonal wire rimmed granny glasses from when I was 7, and a tiny deck of cards with snails on it that I won in a spelling bee, I think, and another that says Black Horse Ale, and my grandfather’s cufflinks, and my great-grandma’s useless china trinket that says 1815, and a basket full of metal cars (not even matchbox quality) and plastic dinosaurs. My mom’s red suede wallet. My D & D dice with the 20 sider dotted with red nail polish to indicate the higher numbers. The wire rimmed glasses are in their original case, decorated with tacky sprawling 70s blue daisies.

Here is a rant from a notebook from about 1994. Things were not good for the badger.

so most of the time I’m pretty cheerful or neutral and I function OK and stuff but it just keeps hurting. I just start to hate everything and everybody and myself for feeling hateful and for not being able to ignore that it’s hurting. I hate everybody looking at me I feel like they judge me or else pity me well how do they think they know how hard it is for me to do something just because they can walk a block and not notice it doesn’t mean anything for me because I can walk it maybe but I NOTICE it how it hurts plus I don’t really know how far I can go before it starts to hurt more than I can deal with or before my legs feel like lumps that refuse to go where I tell them to. Well damn it when I walk a block or go upstairs I want to feel proud of myself and I want people to fucking notice that I just set out to do something hard and I did achieve it and all that. and not to be pitied for fucks sake it makes me so sick! That [??] in the cafe today, I had just walked in from the car, it was hard, I felt self-conscious being slow going across the street in front of cars – the feeling you get like they are fuming cause you’re slow and they have to wait but then they have to quickly slam a thin layer of acceptance on their anger because they see your cane and then they feel guilty

I can feel this like a CLOUD coming from people and it makes me hate them. Then I felt like I was lagging way behind K. and L. and what if they thought secretly that I was acting like I hurt more than I was, so I tried to catch up. I do that sort of thing a lot and I hate that people might think I am faking being crippled for some weird reason. Then not able to find a seat in the cafe very alone feeling eyes on me then they see the cane and look away but then stare at me some more until I look at them again. I just wanted to sit for a minute and look over the diffferent tables and I saw this seat with a purse on it I was thinking I could ask the woman to share the table with us if she was alone but she came up all bitching and my cane knocked her purse over and stuff spilled out I just said sorry I wanted to sit for a minute then she sat there and me and L were still looking and then she must have just saw the cane because she got up and all apologizing all over herself that she didnt’ see that I… well…. oh of COURSE I should sit down and her DISGUSTING hands all on me like dragging down my arm like how am I supposed to BALANCE _and_ remove her offensive hands off me? I tried to push her away but got off balance then was just trying to say no big deal nevermind but she kept on! Why do people think they can TOUCH me as soon as they see me with the chair or w/the cane they grab you like rude people grabbing a cat or patting a kid on the head. It is bad enough when you are a kid and people invade your dignity but n ow I am fairly used to being treated like a human being and it’s a shock to be pawed at. Now another thing people that say What’s WRONG with you? (answer Nothing!) Or kids saying loud Hey Mommy why’s that lady in that? Why? And the mom freaks out Shhhhh! QUIET! COME HERE RIGHT NOW and dont bother the nice lady! I like the kids, I hate the shhhing parents! I am not obscene and I am not invisible either!

Actually I was obscene with my mohawk and multiple middle-of-the-nose rings and motorcycle gloves. Lord knows it was likely I was also wearing a men’s tank top several sizes too large, and no bra. Perhaps the parents were yanking little Emily away from my wheelchair for the nose rings and the hangy outy perky boobies, not the chair.

I have a small sketch for a cartoon about how granola lesbians always wanted to hang out with me for PC points.

I remember understanding that it was all very difficult and that I wanted acknowledgement without pity, and that it’s almost impossible for anyone to really communicate that and they have to be given a chance. And in fact I think I mostly gave people that chance but that didn’t mean I wasn’t simultaneously bitter and angry.

Other crippled people, and old arthritic people trying not to act crippled, would somehow manage it. They would give you The Look, which, if you have been a new parent carrying an infant in a grocery store and other people with new infants pass by you, you probably know The Look – partly of mutual suffering and respect for the other person’s suffering. It is also the same look as two reasonably feminist women would covertly give each other in a roomful of blathering sexists.

Hahaha a few pages later I have my beavis and butthead cartoon parody: Beaver and Arsehole, two punk dyke junkies who sleep late, sit arround all day watching tv and drinking beer. It didn’t have a plot, but was a funny idea. Then some pages of me practicing writing in elvish script. Letters written and unsent out of carelessness. A funny drawing of me having sex with a giant sea turtle. A sketch of G.S. that actually looks kind of cool. My ex husband’s family tree and history that I wrote from interviewing his dad (but not the story of how all his friends got shot by the nazis and thrown down a well near, uh, whatever the modern analogue of Sparta is).

I remember being at this Bikini Kill concert and having a great time amongst the shirtless grrlies, but then just being so exhausted and in pain I wanted to die. It was like when you are sick and lie on the bathroom floor after throwing up and feel very grateful for the bathroom floor. I was so tired and hurty I looked at the parking lot asphalt under the stars and wanted to just slide out of my wheelchair and lay there on the ground. And this cute guy in a wheelchair came up and started talking to me and he told me how he was hit by a car or something while biking across the golden gate bridge. He had long blond hair and glasses. He had the same kind of chair as I did, a Quickie with cambered wheels, but his was fancier and newer. I burst into tears in this wild exhausted self pity and just despairing. I didn’t know what was happening to me at the time and worried a lot that I had MS. It was taking a long time to get a neurologist appointment (9 months! 9 months to get just the first appointment!) I felt really stupid for crying in front of this guy who was so nice. He didn’t say anything but he did a stationary wheelie and then held it, with one arm. I cried for a long time and the whole time I was sobbing stupidly about not knowing what was wrong with me, he held that wheelie with the same arm, barely moving, balancing perfectly and just looking at me nicely. I loved him madly for doing this, though it shamed me, but I never knew his name. I think Minnie collected me and we left.

Back to the garage to move boxes around.

Was that only 10 years ago? Does that mean I am now middle aged (that I can say “ONLY 10 years” and mean it?)

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set in my ways

I’m very bloggy and thoughtful today. I could happily go on for hours.

I was thinking a bit yesterday about how old people get set in their ways. I feel it happening though I am not old. I’m on my way.

Little routines become pleasantly ritualized. I like to have coffee in my favorite mug with the Juan Gris painting. Just looking at this mug soothes me. If I go to the kitchen in the morning and it’s washed and available it is an instant small jolt of happiness. You’d think this would teach me to wash it and put it away every day, but no. Clearly I’m not old and wise enough, as I leave it to chance, and Rook. Lo! It is as if good fairies have washed my coffee cup. What a silly thing to bring happiness!

I also enjoy eating a certain way. I like to prepare my food and put it on a round tray with high sides. It might be canned chicken soup, very hot, with the bits of chicken picked out and left for the cats, a lot of freshly ground pepper and a large handful of tortilla chips to crumble in it. It might be toasted bread and blue cheese. It might be a turkey and cheese sandwich with a lot of hot mustard and red peppers and some olives on the side. I take this food on a tray, and Minnie, I know you know the way to do this: I settle in bed with a lot of pillows up against the wall, I pile up blankets just so in my lap so that they perfectly support the tray and then behind the tray the blankets are puffed up higher than the tray to support my book. I read my book and eat my food in bed, filled with contentment. No one disturbs me.

I have more or less trained everyone to respect these holy rituals, so that Moomin realizes that it is pointless to beg me to play with him if I say “I can’t, I’m having my coffee!”

My mom is this way too. Her nerves are soothed each morning by a crossword puzzle, a sharp pencil, about 6 cups of coffee and about an hour of peace. Some of it can be put down to the mood improvement from drinking the coffee, but it also had something to do with fulfilling the ritual. I recall her careful preparation of lunches to be eaten on the floor in front of a soap opera. She is kind of obsessive compulsive so I think her need to have things always the same is way, way deeper than I can understand.

I feel rather like a lab rat pressing its pellet lever. See coffee cup, get happiness.

My mom used to yell at me sometimes for reading while eating, despite the fact that many nights were declared “read night” so that we all ate dinner at the table with books propped up. She contended that if I got used to reading while eating, I would then want to eat something whenever I was reading, and since I was always reading, I would get fat. I remember laughing at her, book in one hand, other hand shoving an entire ritz cracker with cream cheese into my 11 year old mouth, spraying crumbs everywhere as I thickly said, “That’s the stupidest thing I’ve ever heard! God, mom!”

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It’s pouring rain and wind is whipping the trees around. A rare event for my bit of California.

Of course it’s not really pouring like it would in Houston – where you can drown in one raindrop if you look up with your mouth open.

Still, I love hearing the trees whooshing restlessly. And the peculiar green light under their leaves as seen through a rainy windowpane.

I was thinking last night about Rook and how nice he is. When we first were going out I was freakingly neurotic all the time with frequent crying in the middle of the night and wild mood swings. I was also in physical pain a lot more of the time. He would pet my head and sing me songs to get me to stop thinking and go to sleep. I was happy in the way that I am capable of – in a jaded, damaged whore reborn as poet sort of way. Over the years he does not seem so lighthearted as he was, and there is less singing of cheesy show tunes in the shower in his mornings. He is in the baby trap, working a job that makes a bunch of money but is sort of beneath him intellectually. I am more emotionally stable now. My knees and back don’t hurt all the time. It is true that my lows are higher and my highs are lower – I’m a bit detached and withdrawn. I’m bitchier and more neurotic. I am more confident about my abilities as a poet and writer and I’m in touch with circles of writers and translators – a direct result of his encouragement. He also seems more confident as a writer, and more skilled. When he used to get depressed or withdrawn he would hop on his newsgroups and butt heads with people. Now he is very skilled at rhetoric and has developed lots of cool ideas about RPGs. We have a great kid and a nice life. I can only hope that the net result is that I am good for him but sometimes I have my doubts. I resolve to be nicer and think more about helping him with his goals and dreams.

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2nd time around

The second time seeing Return of the King: the good parts got gooder and the bad parts got badder.


* The Phial of Galadriel is not an oversized, poncy perfume bottle. Frodo wears it around his neck, for fuck’s sake.
* Hobbits with mouths open, especially Merry and Pippin. As if they were about to cross over into the world of the horrible child actors in the Harry Potter movies. How is it through shooting three movies that no one ever told them to close their mouths once in a while?
* Hobbits gazing at each other.
* Hobbits gazing at each other like that and then not kissing. Just get on with it okay?
* Frodo being all wrong. Three modes: 1) about to hurl. 2) psychotic. 3) about to hurl AND psychotic. Where is the ethereal wise elfiness that pervades him as he gets thinner and wraithier? He’s a fucking elf-friend. He should be yelping A Elbereth Gilthoniel a bit more.
* Denethor chewing.
* Denethor dying the totally wrong way. I have re-edited the movie in my own mind to put in the proper death scene with hands withering horribly around the Palantir.
* Denethor doing anything. He is supposed to be proud and kingly and austere and wise and noble and despairing from having been looking in the Palantir at Sauron too much. Grrr.
* Gandalf losing hope just to give Aragorn a big speech using the word “Hope” in it to bludgeon us yet again with the whole “Estel=Hope” thing.
* Flaming blobs of lava flying through the air very, very slowly, as if they were high up like jet planes, or meteors with parachutes.
* Merry and Pippin having no dignity. Pippin instead of nobly swearing allegiance just being bad comic relief.
* It not being clear that Faramir has some connection with Mithrandir.
* When Gandalf rides out of Minas Tirith to shine his really strong flashlight on the Nazgul, why did he bring Pippin with him? Why, why, why?
* Merry’s arm being fucked up by the Witch King of Angmar, but then suddenly just okay again and he is riding off to battle to the gates of Mordor with everyone else. Unlike in the book no time has elapsed, which is fine, but then how did his arm get better?
* They fucked with Theoden’s death speech and there was no reason to.
* Aragorn being all stupidly surprised at seeing Arwen.
* The cheesy, new-agey, “Let go!” or “Hold on!” speeches.


* The Riders of Rohan massing up on the hillside with the dawn behind them, and the fairly accurate exhoration and the spear clashing and most of all the marvelous charge that makes you suddenly realize everything about cavalry battles. I thought of Winston Churchill writing about the charge at the Battle of Omdurman and was rather excited. That the guy actually yelled “Forth Eorlingas!” Oh yeah! Swept away by the fervor of battle, I burst into tears, squared my shoulders, and mentally urged my horse to thunder dramatically over some orcs while I grimly stare out from my helmet, a little cross eyed from the nosepiece of my helm, sweeping around with my sword and screaming “DEAAAAAAATH!”
* Gondor looking just exactly as I had always imagined it.
* Any of the battle scenes or the scenes with a zillion guys and/or horses massed up for battle. Oh yeah.
* The way they painted the Mumakil’s sides with cool war designs, and the chains between their tusks.
* The weird Celticness of the entryway to the Path of the Dead.
* Any time that an important speech was put in correctly. If Frodo had not said “Here at the end of all things” to Sam, I was going to have to go and assassinate someone. Thank god they made him say it – I don’t want to go to jail.
* Arwen’s damn cool green dress and green shiny beaded tiara/veil.
* The flags and banners and Minas Tirith armor being RIGHT.

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