Posts Tagged ‘underwear’

London rocks for wheelchair access at least for me

So far things are totally rocking. I have taken three cabs and they’ve all been nearly instant to stop for us, and all been accessible for me as they’re roomy, i can get in with the hand rail inside the back seat, then pull my (very light) wheelchair in after me, fitting it into the back seat without even taking the wheels off or folding the back down. There’s been a few curbs and stairs but even with jet lag I can manage. So if you are in a powerchair you’d have to scout or plan but if you can pop a small wheelie or go up a curb backwards you will be just fine in London in a manual chair.

Down sides are cabs cost buckets of money. I was on one train so far – the Heathrow Express – and had to get someone to let me through a hidden gate – and then holy crap when they say Mind the Gap they sure mean it. I see you are supposed to get someone to stick a ramp across the gap for your chair. I made one “gap” ie ABYSS FROM HELL but the other at Paddington was ridiculous – I got up and walked out which fortunately I am able to do and dragged the chair after me.

Visited C and A to pick up keys. Held their soothing and sweet baby who is in the kicky using-muscles stage and also cutting first teeth. Bonded telepathically with Washlet. There are stairs. I will Deal. Most of the time we will be in Foxy Hotel (for the days it was cheap) but the 3 days at c’s will save us like 1000 bucks (covering perfectly the days Foxy Hotel was insane like $350 a night rather than 80-ish).

Ate at Cantaloupe which seems like a vaguely latin american hipstery bar/burger/steak place. It was nice to lie back on soothing leather couches and contemplate the terracotta-red walls and green ceiling, and the hanging plants coming down. I had a mojito. There was free wireless.

Shoreditch/Hoxton seems the exactly right and fun neighborhood for me… We have space to work in next week out of c’s office

Our hotel near Waterloo sort of blows. it’s swanky and interesting but has only just begun to live. The supposed-to-be-fancy bathrobes actually suck, and mine has a funny tag on the lapel, a sticker that says “Rental…” with a price tag and bar code. The bathrobes are rented! Hahahah! And no one took off the price tag! I immediately broke an espresso cup, used all the bath towels (purpling one) and bled all over the sheets by accident when I fell asleep on first arrival. We have packed in a miracle of compact light carry-on-bag packing yet that means we have to unpack everything to find anything, so underwear and electronic gadgets are strewn all over the room. Later I will list our gadgets and cords for your amusement.

Passing out now. Wish me luck tomorrow on the Eurostar… I look forward to all this but very much to coming back to hang out in Shoreditch.

Weather is not too hot at ALL – it is springlike and mild – jackety in evening – I erred in unpacking my pajama pants and adding a skirt to sleep in – hotel has a/c

I am overlooking all the huge trains at Waterloo and can see st. pauls from bed

Taxi drove us past the Albert Memorial. I screamed uncontrollably with laughter for about half an hour – it was the Best Thing Ever.

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.

Diagnosis takes forEVER

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

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

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

furry mukluks

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Oh well.

Emotional incontinence! Really… it’s funny…

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

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

This part is also quite true for me:

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

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

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

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

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

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

That’s a comfort.

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

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

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

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Not minding so much being pushed

Most of the day I worked from the couch, not quite getting as much done as I thought I would, as usual. Rook and I went out to lunch, and had more of the perfect sunny fall day. I have been a bit afraid to go into town in my chair, because there is a hill, or a dip where the road goes under the train tracks and then a hill back up. It turned out to be not as steep of a hill as it was in my imagination or memory. I must be a lot stronger. Still, I let Rook push me almost all the way to downtown. It was easier, and I was tired, and it felt good to sit back and even close my eyes a little in the sun. The hard bit about going that far is not the distance itself, it’s the shifts of weight and the strain on my back because of all the uneven curbs. I have to adjust to deal with all the different slopes of driveways — the sidewalk isn’t even for most of the way.

Lunch was so nice… the platanos were perfectly fried and soft and caramelized, there were lots of black beans, the chips were fresh, and i had delicious horchata. We sat on the sidewalk and talked… Rook told me more details of his own trip to Beijing last year – he was there for maybe 2 days on the way to Manchuria. Our plan was then to wander around downtown, but we bought Moomin some vintage transformers in the tiny action-figure store across from Amelia’s, and then had to go. Oh but on the way back i persuaded him to idly drift into the store of evil cheap clothing; I got a boys’ long sleeve shirt with lightning bolts on it which is sort of silly and harry potterish; he bought ridiculous boxers with bats on them, and green polka dot ones. So maybe Squid will be regaled with extra glorious underwear next time she comes over and Rook answers the door.

testing a nifty thing

Let’s see how this does in the body of a post.

(Mystery thing moved down below the cut.)

Wow. It’s unnerving! You can see up my nose!

You know the way that video games and stuff like nethack gives a sense of identity and geography, and makes a map in your head? And how blogs do the same thing? When I look at my different blogs I feel like I’m in different places. But it’s a very private act to look at my own blog. I’m usually tinkering with the wording of posts, or musing about something that happened last week, or wanting to read comments there rather than in email notifications, so it’s like reading a letter on my front porch. With video on it’s a little bit creepy, and like a conversation while also looking at myself in a mirror. I had the feeling like I had just answered my front door in my underwear. But not in my house — on my blog.

When it’s ready for it sometime (tomorrow? this week?) I’ll stick it in my sidebar and make everyone try it.


Rivers of blood in the worst places

Today was nice… and yesterday… we hung out all Friday, had lunch in the cafe, did some setting up of computery stuff which I’ll blog up thoroughly later, but which was basically insane yakshaving necessary to even make me have the stuff I needed to set up to do some programming. Oh and he read me from the bees and siggraph pong game chapter of Out of Control which I really loved… and he looked at my Composite #2 but I still need to get him to read the preface.

We drove up 280 in the gorgeous afternoon sunlight and watched the hang gl1ding people zipped into bags flying around at Fort Fun$ston and were very silly about them being in bags. If I were about to crash and die I would not like for my legs to be zipped into a bag though I suppose it might make collection of the parts easier for the people who clean up smashed hang gliders off of beaches. But we also were thinking how they looked like ovipositors and then invented the strange rituals of hang glider mating and fertility rites. Possibly you had to be there. We talked about preteen obsessions with big grand overarching systems and pulp books like M. Moorcock and how at that time it was hard not to write like that… At least it was hard for me not to. Also about our families and childhoods a bunch more… all that sort of thing… I hung out in a cafe trying to go through two different python tutorials. The Learning Python book blew chunks, much as I remembered it doing. My god! Awful! Dull! Pompous to boot! Condescends one minute, then assumes you have C and Java and Fortran, the other! Bah. Diving Into Python was much better. Though I did not love the comment on the guy’s wife. Why must they do it? What kind of relationship is that? And anyway it was like i was supposed to chuckle in sympathy and yeah, I know how that is. Instead I was just massively annoyed. Fog rolled in. Off to Zond-7’s house to provide laps for cats and eat some dim sum. Then we realized he thought we were staying there and I wanted to go home — so as not to ahve to drive huge distances in one day. So, my house – tired yet amiable – talking about all sorts of things – This morning we woke up quite late and went to deal with the hot tub – and I started to bleed through all my clothes and was going through super size tampax like once every half an hour to an hour. I tried to like vacuum the junk out of there and wished for one of those extraction kits like we got in illegal abortion feminist training camp, which most of the point is they can suck your whole period out in 1/2 hour. Soooo I managed to make it through the geek party with only minor difficulty! Plus, was walking! Oh and we ran into Liz Ditz’s daughter at Buck’s, and looked at me and Minnie’s geocache, having breakfast with Skud. SOOO the party was fun, I did not go around meeting a ton of people, but talked with Adina, Zond-7, Skud, Kragen, and some others. We did get to teh point I wanted to get to, of poking at the rest api for my work thing and making it spit data back at us. Now maybe tomorrow to do something with it. I think Zond-7 and I will pair very well on projects once we get going.

I also need to:

* fax forms to blogher!
* maybe cook something big like chicken soup
* write blogher posts
* set up feeds properly for them
* write up stuff I learned about python including all the links and tools

We picked up Rook and Moomin at the airport and headed home. Moomin got the 1st chapter of Dr. Doolittle on the Moon and then read a bit…. he was happy to be with his animals & books & to cuddle with me. Rook is miserable with lingering airsickness which he always gets – dizzy, vertigo, sick-feeling, and I think sinuses messed up like altitude sickness. He fell asleep over a book and Zond-7 and I hot tubbed. Talking a bit about kids and parenting again.

OHHH meanwhile all the blood in the world is crawling out of me as if wanting to evolve amphibiously from the primordial soup. All at once, out of my poor cramping suffering cervix. Enormous glistening things…. with eyes… okay not with eyes but they might as well…. schlooping out of there. So I’m staggering around doubled over in pain with blood pouring out of me. I feel very studly and keep holding up these baby-fist-sized clots to the light. Shimmery and amazing! Let’s make blood sausage! Well, days 2-4 of my period will be like “something vaguely pink happening in one’s underwear” time if this is any indicator…. entire period happening in one goddamned day. Apparently my uterus is an efficiency nut and read that GTD book when I wasn’t looking.

Thank you god for not making me bust through those tampaxes right onto the suede couches at the geek party mansion.

I’m falling asleep so this is just sort of a graceless brain dump of what was a couple of awesome great days with many happy shiny moments. What are we? What will we get to be? Those sort of thoughts, incredulous ones.

Blogher notes, Friday, rambly ongoing

prepping more for my panel, still in pajamas, having encountered funny woman in elevator with shrill voice going “i was voted SECOND WORST PERSON to run into in the morning in college” I hereby promote her. lady i’m trapped in the elevator with you with no coffee, shut up! everyone shuddddup!!!! coffee fairy!!! oohhhhhh am too stingy to pay 16 bucks for delivery up to room serves me right! am in bed eating the cookies i stole outta the Wave wrapped in a napkin last night.

oh also i just realized why deb knew the deal with me when i started to go all dreamy and babbly and she busted out her “OH YOU MEAN ABOUT D.” uh yeah but how did you know, lady? I just realized how she might very well. well um damn! speed of light internet gossip small world.

shauna cracked me up this morning by saying scottishly it was sweatier than a hoor’s fanny and SJ’s look of total noncomprehension until we footnoted it that that was WHORE’S (fanny= “front butt”). “Oh! I thought you said horse fanny!” No! But why do I understand the scottishness? its not like reading Kidnapped 800milliontimes as a child should prepare me for “hooor”.

okay back to panel prep and my outline of questions etc.

soon, clothing. and I will continue to just update this one entry through the day till it gets too huge to live.

hanging with denise t, beth kanter, dave coustan, hi to marshall k,

identity/naked/journaling panel.

going through things, horrible things, can be comforting to think “oh well this will be funny to write about.”

self-constructed narrative. getting to tell your own story . horrible parenting books that give very controlling stories. i’m writing my own damn story.

Sarcastic Journalist got fired in 2004 from her job for her anonymous no-photo no-location blog. she was 8 months pregnant. her family has been reading it and they disowned her as a result. that’s not public (it is now.) it’s not fun. it can happen. it will happen. you are not really anonymous. i found my cousin’s sex blog. i said my sister’s child deserved to wear a muzzle, now i don’t get to go to christmas. it’s the real world. once you talk on your blog you’re still going to have to deal wiht people.

audience member: times when i am thinking “i wish i could stab this person with a damn pencil” but i just blog “today was a hard day” and i’m glossing over it. which is sad.

laurie toby edison makes the point that we’re making ART which is why we’re selecting. if you think of it that way it’s interesting. stories and bodies. the true story of what happened now gets told. that’s amazing. i don’t think that’s ever happened before.

susan mernit is about to talk

I’m thinking: our personal honesty about our lives as women is politically important, and it is unstoppable as a mass movement. no matter what the individual consequences are for some of us in our personal lives or careers. (said, twittered.)

People are saying they are so sad we can’t be honest about this kind of thing.

Yes we CAN be honest about it… and many of us are… and every time you (bloggers) are, give yourself a little pat on the back because you are fucking part of this historical moment of public, visible honesty.

Heather is cracking me up as she says how people always assume she’s white because she’s named HEATHER. heh! and then how people expect young black women to be, and it’s not her, and how odd that is.

more about stereotypes.

ppl in audience need to STFU and listen to the panelists instead of whispering all the time. USE CHAT, people!

mochamomma talks about journals as art. the racial conversations always have a stopping point. poeple go hmmm now talk about something else. YOU KNOW WHAT IF YOU’RE going to KEEP CALLING ME EXOTIC, i’m going to keep talking about RACE.

OHhhh i have a new crush on mochamomma.

rachel. truth. for those of you who are courageous enough to write your truth. i appreciate it. thanks. the more brave you are the more empowered all of us will be.

“Maybe if you are making someone uncomfrotable you NEED to be writing it. maybe that means it’s important to be honest and get it out there.”
(I’m not sure who was just talking, but it was interesting.)

Matt miller maybebaby, blog with his wife about trying to get pregnant. i get myself in a lot of trouble b/c people don’t think ihave a right to be talking about parenthood or trying to conceive. stereotypes. to me that’s the most important hting that i do. i dont keep anyhting personal in my blog, my whole office knows i have to ice my testicles. i’m closer now to people than iv’ve ever been. (The entire audience applauds. Let’s think about that. we did not applaud any of the women who spoke. is it so necessary for us to specially praise our male allies in this way? why is it? a nice comment but, is this guy somehow more brave to speak in women’s space than women are to speak in mens or for us to even HAVE women’s space? would guys go out of theier way to make women so appreciated feeling in male dominated space? (NO… instead they harass the shit out of you and expect you to smile and thank them.) )

someone says “if my parents act like idiots and jerks I get to write about it. I get to say it. if they don’t like it they can stop acting like idiots and jerks.”


Mary Tsao points out sometimes she confesses personal detials in public, to everyone. but then she gets personal confessions one on one from people, which is different. and more intimate than she really wants.

Mur talking sf
Powers – comic book – very astro cityish – read it!
her daughter dressed as pink tornado! dcute!
issue of swamp thing “The curse” v interesting

lunch digital ethnorati
talked with laina talked with kathryn in prep for panel at 2:45

talking about shwag and how funny it is. the towels… good size for fuck towels! electrolicious was like “they should be all red and brown and mottled!” hahahaha!

“safe space” panel. lynne d johnson susie bright and others

susie: concept of safe space from feminist movements, used as weapon to shut people down

sj asks from the audience what does bullying mean to you how do you define that
susie – being erased, by misogynist comments that are not relevant

annalee: what susie’s saying is so important and cool*
me: as usual!

Tara Hunt : “insidious danger of danger” post. getting emails from people … kathy sierra situation. Tara wrote a post about finding your higher purpose. group of bloggers that hates anything that smacks of self help. nazis… godwins law… i deleted comments and called them meankids. they started a blog called that with phtoshopped pics of me and i went to them and said you’re giving me more attention than i deserve, i’m flattered, you spent a lot fo time photoshoping me. Kathy went on there to defend me and said dont pick on tara. they turned to her and it escalated. photo of her with a noose beside her head. the only thing she’s fit for is a noose in her neck size. then about maryam scoble, said terrible things about her. somone (well, frank p actually i think) took that blog down and came to their senses. then bobsyouruncle started. it was truly awful sexist gross things. women, snails slugs etc. kathy with underwear over her head suffocating her. kathy then said that’s it, i cant go to these conferences any more, i can’t take it. meanwhile anonymous commmenters on her blog were saying i want to cut off your head and … (Tara continues to tell this story… Kathy posted… shredded other characters meantime which was not helpful but, that started the whole thing)

audicene: her name and social security number and home address, were then posted online. hostpiatl visits, personal finances, everyting he could find, and posted it.

(I Want to know who that was that posted that stuff.)

People are talking stories of their actual online/person stalkers. It worked well to ask planned parenthood, as they know how to deal, you hire a security consultant. and they take care of it, they go talk to the guy. and that works well…When the police won’t help.

Whether you believe there’s a danger or not… varying levels… what is your personal threshhold…

Susie – talking about strict but gracious comment policy on blog… feminine tendency was “maybe that person doesn’t MEAN to be obscene and gross and insulting… should i treat them like a troll? maybe not?” Now it’s more like “NO. not at all.” they thrive on attention. cut off the attention and they wither. my first stalking and assassintation threats were offline. u of minnesota to give a talk about women and sexual self expression, people pased out flyers, first t here was slavery in the roman empire, then the holocause, then susie bright. there was a girl in the bathroom with a knife, we just shamed her. i was 8 months pregnant. i was a real woman, it was absurd, she was like a child, she had a cause, she believed i was the enemy. that was wild. there’s always that little chance. but there’s always that little chance about life. i dont regret anythign about my activism. if you know me you know i get upset about things, i cry, etc. BUT I WON’T STOP.

Tara: molly holzschlag, …

Lynne: I put it out there and i’m a senior editor at fastcompany. it’s a strength.

Tara: i think it’s a sign of strength to say fuck you that’s who i am, deal with it.

susie: we hear about powerful men who go away for rehab. etc. and it doesn’t hurt THEM. and we certainly hear they sleep around. and it doesn’t hurt them either. but if we admit anything personal …

audience member: all this personal criticism, it taught me a lot. now in professional life it’s like NOTHING. people are like “did the negative reviews of your book bother you? and i’m like NO… no one called my mom a dyke! it was a walk in the park! this is a silver lining amongst the hate. i have toughened up.

post partum dpresssion blogger saying i dont give a crap… you would nt want to be with those people anyway… it’s notgoing to work. you have to have a sense of humor. article in newsweek quoting me on post partum depression, just felt like put a copy on all my neighbors’ doorstesp with a note like PS, I love to babysit! (laughter applause from audience.)

simply hired guy goes on and on for a long time a fine point, just very long and rambly

susie – motivation of people who want to shut you down sometimes is intense jealousy. i dont know how to deal at times.

audience member – i think not jealousy it’s boredom. on maya’s mom it is boredom. ignore and they will go away.

lynne – agrees ignore them sometimes works

audience – story about life as a writer and activist. tried not to offend traditional catholic family. then invented a character who had my name. looooooonnnnnng story of when it happened to me catholics hate mail etc. wishing my mother had aborted me. i posted all the hate mail on my blog with comments and theological critique and annotation. adn then i got all these hits and it was like the best thing that happened to my career. so they realized it was really good for me. and now i dont fear anything and i take comments on my blog.

annalee – i blog for wired and pop sci and other geeky places like that. a cautionary note. hunting for a job at same time as opinionated story. a quick anonymized story. incredibly over qualified person for the job. everyone loved her resume. etc. then they looked at her personal blogs and one person in particular objected and felt she was too opnionated. and we went on to hire someone who SUCKED. and the first person went on to get a better job anyway. but it can bite you in the ass to be opinionated. and it came out okay for her. but for 90 other women it might not have come out okay. There is risk.


panelist: for anyone who does blog they SHOULDd know they are not really anonymous. they should keep that risk in mind.

SJ: i’m I asshole. these bitches in the PTA… i have moveable type, i can edit my comments. i can make them say “i’m going home right now to fuck puppies.” wtf. *applause laughter*

comment from audience: virginia woolf kill angel on your shoulder.

susie: being brave, etc. not always brave

tara: inner gollum. make peace with my inner gollum! job issue. didn’t mean to be flippant about it… my dream is that everyone is able to act really human and open and stop putting up these facads…we all have broken wing days… we live in this world that says we’re not allowed to talk about these things. but everyone feels that way at some point.

susie – if you’re 19 and your’ blogging! how many people can i be…. etc. you get to try that out! (you are not always the same person)


intolerance intervention panel

Went well, was fun, laina and kathryn and tish were awesome, coherent, fascinating!!! audience talked interestingly too!


A story about the universe

I will tell a slightly embarrassing because too revealing story. I like to think I have my shit together but from some angles… I never have.

A while back I was looking at this amazing cool thing which was representations of the whole universe in a lucite cube with fancy laser etching, and i have always wanted a swirly galaxies colliding tattoo and considered a whole-universe tattoo design also. Anyway I saw this fancy object which comes in a velvet lined box and thought ohhh I should buy this for X. And then thought depressingly, oh no I should not. I don’t know if that would be good. And then I thought Ohh if only… I woudl have bought it for Y. But they would not have appreciated it really and would have sort of faked liking it while being unnerved at the sentiment and i would have found it under their couch mixed in depressingly with old magazines and underwear months later. And then I thought what about Z. Or my sister. There was a period where everything I liked, I wanted to give to her first. But no actually …. So I had a Very Small Epiphany that I should get the thing for myself and it would be one of those slightly cheesy symbolic acts like marrying yourself. (Usually I just shave my head freshly and that works great for renewal of the soul.) So, I would decide to give myself the whole universe — and make a commitment to live up to that. This seemed like something that might make me feel guilty or sad or selfish in a fundamental way beyond spending 80 bucks on a mildly arty paperweight that I don’t need. Actually, I’ve felt different ever since and I think it’s a good difference. It was not buying a thing. It was the point of decision on some level I can’t explain which might possibly be, not taking any crap from anyone and wanting to be treated nicely. You would think looking at me that that was already true, but it wasn’t.

Pool of blood sheets

Oft have I invented the menstrual-stain-printed sheets and underwear, because if they’re going to get that way why not just start them that way on purpose? But it only just occurred to me how great it would be to have pool of blood printed sheets and pillowcases. With a matching quilt or comforter! So you ‘d go to lie down on your bed and it would look like you were lying in a pool of your own blood! Weltering in your gore!

You could silkscreen the sheets and pillowcases – it would be super easy!

Still high from valium/codeine cocktail from the injection. Which went okay but was scary and they did not wait till i was high enough before starting. I think the surgery schedule was way behind. Also i thought they were going to do a pain block but instead it was just the steroids, in 4 places. 3 facet joints and one other joint. The main swelling is L4/L5 but it is also in other joints i guess.

Also the dr. at first visit was like “oh you’ll be hopping around in 2-3 days! ” but now he is more like “uh no big activity please and yes take wheelchair on your trip next week.” I am to baby the synovial linings as the steroids kick in and unswell them. I am to engage in mild amounts of walking but even if I feel way better by weekend I am instructed not to push it. For example, no phys therapy till next week. Otherwise it won’t work well and we have to do it again.

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!


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.