Posts Tagged ‘wheelchair’

Ruth Fielding of the Red Mill, 1913

I remember Ruth Fielding as being bold, thoughtful, creative, brave, and somewhat of a no-nonsense personality, who works hard on achieving financial independence. She was an orphaned teenager who comes to a small town to live with her mean, crusty old uncle Jabez Potter who runs the local mill on the banks of the Lumano River. His arthritic, hunchbacked, ancient, warm-hearted housekeeper “Aunt Alviry” is not actually Ruth’s aunt but is a servant and for a long time is the only person who loves Ruth. Uncle Jabez doesn’t believe in educating girls. But Ruth manages to win him over somehow. Anyway, Ruth goes off to boarding school at Briarwood Hall with her rich, beautiful motor-car-driving friend Helen Cameron, makes friends with everyone, and ends a terrible schoolgirl rivalry by creating just one big sorority, the Sweetbriars. I seem to recall their moonlight and candlelight ceremony where they’re hanging out in togas by a graceful statue, with a harp. Ruth goes on to have a lot of adventures that center around her solving mysteries, helping poor girls get an education. Her companions include the jolly and popular plump girl, Jennie; and the slightly bitter lame girl, Mercy, as well as a rich friend with a cute brother and a motorcar. Nothing new there, right? But…

Ruth Fielding book cover

The cool thing about Ruth Fielding is that she’s a scriptwriter for moving pictures! She saves her school when a building burns down by writing a moving picture scenario for Mr. Hamilton from the Aelectron Corporation! And goes on to become a successful writer, even transitioning from silent film to the talkies.

Note the fashion in the cover picture. It reminds me of the book from the Betsy-Tacy series where Betsy and the other girls try to look like Gibson Girls, with their dresses gracefully draped instead of being tightly fitted, and a “droop” to their figure, slouching rather than standing up straight.

I believe this might be the series where all the girls make graduation dresses from simple white cheesecloth so that the poor girls won’t feel outshone by rich girl satin and lace. Or is that Rebecca of Sunnybrook Farm? There was an amazingly cunning plan for their class valedictorian, Mercy the lame girl, to be able to graduate on stage by the clever and unprecedented use of a podium or a sort of Grecian drapery on a dais. Because it would be impossible for her to graduate on crutches despite her being the damn valedictorian on crutches! Mercy had a sharp temper because of her pain and illness and difference, and all the other girls take that into stride. She wasn’t cured magically like Katy and Pollyanna and she didn’t develop perfect patience; she stays crippled and a little bit bitchy. She’s my hero!

Alice B. Emerson was a pseudonym used by the Stratemeyer Syndicate. Known authors who wrote Ruth Fielding books include Mildred Wirt Benson, W. Bert Foster, and Elizabeth M. Duffield Ward. Thanks to Jennifer at Series Books for Girls blog, which I’ve only just now found while searching for anyone… anyone… on the net who is also obsessed with this stuff!

Click through for my re-read and chapter by chapter summary of Ruth Fielding of the Red Mill in all its glorious faily goodness. Or, you can read the full text here from Project Gutenberg. Summary: The miser has a heart of gold; the crippled girl walks again; Ruth wins the spelling bee and gets a new dress; there is a lone page where a Mammy and a young black girl make cameo appearances. The young black girl does not get to go to school or make any friends or get any dresses…

(more…)

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Against a law to “protect” disabled people

I sent a letter tonight to a Democratic Congresswoman from Massachusetts who just proposed a law to “protect” disabled people from being represented in pornography, with the same law that forbids child pornography. Wheelchair Dancer says it very well:

Absolutely, anyone, disabled or non, should be protected from abuse. But laws that prevent people from being able to give consent are also no good. People over the age of 60 have sex, act in and consume porn. People with disabilities have sex, act in and consume porn. Not to allow people this kind of autonomy is to deny them their humanity.

And here’s my letter, short and sweet.

Hello Representative Reinstein,
I am not a huge fan of porn, or of the porn industry, or of weird fetishists. I am a 40 year old woman and a mother and a feminist, who has used a wheelchair on and off for the last 20 years. I’ll do as I please with my body and images of it. I don’t need a law to “protect” me, by forbidding me to enter into consensual agreements.
Please talk to a wider range of people with disabilities, before trying to make laws to “protect” them.
I see your good intention here, but the effect is condescending and paternalistic. And that is destructive. I fight as an activist for disability rights — including our right to be seen as fully sexual beings.
The edges of sexual freedom include many problematic situations that are exploitative.
But the solution is not to make laws that treat us as children.
I know I will likely get a form letter back. But I hope you really read this letter.

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Vacation with Saturn and proplyds

I'm in the parking lot of a motel staring at spectacular red and buff cliffs! It's the Kaibab Limestone and the Coconino sandstone and that other red rock formation I forget the name of. Spiky little lizards are playing on the fence next to me.

After a great but exhausting week at ETech and SXSWi, I'm on vacation in Arizona with a rental car and no particular plan. Last night in Sedona we picked up a flyer in the Super8 lobby, for Evening Sky Tours which I pictured as a couple of old retired guys out in a parking lot picking up some spare cash for new lenses by showing off their amateur astronomy knowledge. While this was close to the truth the Adventure was run in a scarily businesslike and professional manner and rather than being a once a week or sporadic deal it was clearly a real job. Three guys pulled up with a trailer or two full of telescopes with a D**'s mount sort of a huge wooden box like a box kite with mirrors stuck in and lenses and spotting scopes stuck on! They had a row of folding chairs with wooly blankets laid out. Reclining lawn chairs would have been more the thing.
The main dude went around in a bossy way reminding his employees the telescope flunkies to "tell 'em what they're lookin' at". It was excellent. They did an especially good job of saying "In Africa" or "In the MIddle East" when talking about the names of stars and the history of astronomical discoveries.

As the Milky Way began to slide into our consciousness we saw a few satellites and every time I wanted to scream "Satellite!!!" Might have done just that. We had out our G1 Skymaps at first but put them away so as not to be assholes. I knew Orion, Taurus, Cassiopeia, the Pleiades, the Big Dipper and North Star, and that is about it. With luck I can spot Cygnus and the Corona Borealis. Zond-7 knew where Sirius was, which impressed me. I guessed where Gemini was, but got it wrong. Then I did what one of the astronomy dudes suggested and learned "Arc to Arcturus" and "Spike to Spica". Now I know a new thing!

The Night Sky Adventure dudes explained what we were looking at very well and were patient and sweet about all the questions. It was a little hard to get them to go into any depth. But it was light years better than going to a planetarium!
Stuff we saw: M51 which is sort of colliding or interacting galaxies, M3 (a globular cluster), M81 and M82 together (they affect each other with tides!), the Beehive Cluster, the Pleiades, a red dwarf star among the Double Cluster,  Mizar A and B and Alcor, (The horse and rider!), Saturn and 5 moons, and a bit of the Orion Nebula where the Trapezium is. We looked at Sirius through a polarized filter to see its spectral lines.

Later, the Wikipedia entry on the Orion Nebula turned out to be incredibly great; hello, iron tipped glowing blue "bullets" of supersonic incandescent gas. It just got more and more extreme and crazy in the descriptions. Keep reading. It gets better and better. Like this:

The green hue was a puzzle for astronomers in the early part of the 20th century because none of the known spectral lines
at that time could explain it. There was some speculation that the
lines were caused by a new element, and the name "nebulium" was coined
for this mysterious material. With better understanding of atomic
physics, however, it was later determined that the green spectra was
caused by a low-probability electron transition in doubly ionized oxygen, a so-called "forbidden transition".

In between lurching up from my wheelchair to peer through telescopes, I kept saying over the things we'd seen, so that I could look them up later. "You must have studied this!" one woman said in amazement. "No…. I'm just repeating to myself what the guy just told us…"

I don't mean this meanly, but I have forgotten how dumb most people are. Or maybe not dumb but just, without the most basic snippets of information about things like what a moon or a constellation or a galaxy is. Compared to our amateur astronomer hosts Zond-7 and I were just a couple of people who grew up liking science magazines and who might read the Planetary Society blog once in a while. But the people around us, holy crap. One lady was asking what it meant for something to be a moon. As we explained (super nicely) she *got it* that moons go around a planet, and planets go around the Sun, and so the moons are also going around the Sun at the same time, but with extra wiggling. I could see her getting it, even in the dark! Zond-7 explained very clearly to someone else what it meant for Saturn to be in Leo (which it was). Earlier, someone else went "Is there a thing called a .. a 'quark'?" and boy howdy did I feel like Mr. Peabody just able to say "It's a tiny elementary particle" Zond-7 asked if she meant quasar, but she meant quarks which were mentioned in a movie she saw. When I hung out with large feral packs of theoretical physicists I noticed how they would speak with disdain of washed-up media whores meaning anyone who ever talked to the press or wrote a popular science article. Meanwhile I wish popular science was more popular and more people would learn how to explain (with strangeness and charm) what a quark is to a regular person.

Anyway, I was struck by how much people don't know. We don't need to know it, people go around and function and are smart as anything, but I forget that most people don't care for some of the things I like to know. And I was struck by the thought that I am used to being around people who do know and who have a fairly huge internal database of random knowledge not applicable to their daily life. The people who came to the astronomy event were self selected to be people who were interested and curious and willing to learn stuff, unlike the general population. I am not trying to be judgmental on people by saying this, it is just that I felt a gulf suddenly between my assumptions about what's in people's heads all around me, and what actually is. Heather Gold at SXSWi in her talk show at Plutopia touched on this rather sweetly when she mentioned the movie Powers of Ten and said "You know, like that thing you do in bed when you're a little kid, where you imagine you're in your address, St. Louis, Missouri, United States, North America, Northern Hemisphere, Earth, The Solar System, Milky Way, like that? … and the crowd just kind of stared at her…. As Heather did, I assumed everyone did that! Did you? But no – not everyone spends hours poring over photographs of galaxies and nebulae and reading encyclopedia articles. I have not felt like a freak for having a lot of book learning for a long time, not for years. As a kid that was a hard lesson – I thought all reasonable people would automatically know what mitochondria were, and so on.
This crowd, the idea of spectral lines was going to be so completely over their heads that it was impossible for the guys to explain anything. I was glad they showed it anyway.

Meanwhile, I don't know the parts of an engine or how to fix a toilet or knit a sweater or take someone's blood pressure as probably the people on our Star Tour do know.

Saturn's moons freaked me out the most. They just hang there. The light reflected from Saturn shades them like our Moon is shaped and shaded by Earthlight. They were more surreal to me than Saturn itself, because they looked so three dimensional.

There is a flythrough of a 3-D model of the Orion Nebula! Can't wait to try it!

When we get home I have a book called Agnotology waiting for me which promises to be about theories of Not Knowing. What don't we know? And why don't we? And how does that affect us?

One last note, Zond-7 asked one of the astronomy dudes how many stars
were in a galaxy and was told a trillion.  He gently drew out the guy a
little more and then shut up. Later in the car he told me that the
trillion stars theory was in the process of being debunked, as it is
based on "a trillion solar masses" but like 99.999 % of that is dark
matter so there are likely not a trillion stars in the galaxy at ALL.
Speaking of Agnotology!

If you are wondering about a proplyd you may go read the article on the Orion Nebula! Happy pointless knowledge voyage!

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Pins and needles in my head, too

I can do anything. That’s why I try to do everything, no matter what. Pushing myself physically backfired this last week. When I got home from my trip I didn’t try to walk around the house – I came out of the taxi and just wheeled myself into bed with a side order of Vicodin because my leg wasn’t working and the pain was nasty. All week I struggled trying to keep out of the chair. I did it, by cutting and cutting things I wanted to do, errands to run, stuff to do around the house, going-out-at-night plans. Order stuff off the net, rather than go to a store. Then on Friday ended up walking 2 blocks down Haight street (allowing myself 1 of the 3 errands I had meant to do) and was stuck. I didn’t feel like I could make it back to my car. I sat in the shoe place and felt extremely upset at the situation, at my body, and with myself for having poor judgment.

I am back in the place I was some months ago of doing something brief like laundry or getting myself food, then lying down to rest for a good while before attempting anything else. I have to scale back and be careful.

So, I can’t sit up and walk around and be active right now for a whole day. Yesterday and today I was super conservative, and I’m still getting worse. I’m not stressed, or upset, other than my basic fear of what is happening and my frustration at being in pain. The constant pins and needles in my legs, feet, and hands is maddening and my right leg’s pain and collapsing hit me worse today. My calf – the horrible nerve going down the outside! I sat on the floor this evening for a second to open my sewing box, and went OMG what was I thinking… I’m fucked.. that was the worst idea ever. But I was able to do it last week!!!! Over the course of the day I lost the ability to bend over and pick stuff up off the floor. When I whimpered with pain by accident while trying to get up from a chair that was the last straw, I said to hell with it and brought the wheelchair in the house again.

Suddenly the geography of my house is different. I need help keeping all the floors clear.

I don’t know or care if “It” is a mechanical/orthopedic issue which I aggravated by too much activity and sitting up 12 hours in a row and the long plane rides, or if it’s MS or what the fuck ever aggravated by too much activity and stress and no rest. Whatever it is, it’s flaring up big time.

Everything non essential will be put off.

Since I am now making dr. appointments again I will take time off to do that instead of just doing it and making the work up at night. That is part of my regime of less stress and more rest.

I wish to god i had some prednisone right now – I would take it in a flash. I know it’s bad shit but I would get it for a week for bronchitis or sinuses and then would end up feeling fan-fucking-tastic top of the world healthy and able for the next 3 months.

My plan is good – I just need to stick to it – I had such nice plans to go to the beach or the science museum with Moomin this weekend – and I scrapped them completely knowing it would be insane when I can barely contemplate going out to buy cat litter.

Nice things today – Moomin getting completely better after a sudden morning of barfing – helping Moomin with his homework – having pictures drawn for me – lying in bed reading umpteen Antonia Forest “Trennels” books since they’re very comforting and complicated (Oh the perfidy of Lois Sanger! She’s worse, and better drawn, than Widmerpool, don’t you think? ) and making spiders out of black yarn (body and legs), red glitter paint (eyes), and safety pins (to attach them on things). Rook’s LOTR alternate history game and finding dwarven words for it – Colin Powell’s declaration of support for Obama, which was lovely – Shaving Zond-7′s head – and having bits read to me last night out of the history book about Santa Anna’s leg and its burial – and how it was dug up and burned (which I am not seeing anywhere on the net – instead a lot about its burial with full military honors, and how his prosthetic leg, captured & stolen, is still in a museum in Illinois).

That’s where I’m at – I don’t need a lot of sympathy, it’s only been 20 years or so this has been happening – just want to talk about it, complain a little, figure out what I’m going to do about it, and declare it, hoping other people will hold me to my resolutions of intelligent behavior.

I’m sorry I fucked up. It’s hard to know where the line is. Sometimes I don’t do anything wrong, and things still go wrong and I end up getting worse. This time I feel like it is kind of my fault. Fingers crossed a few days or a week of resting and I’ll rocket right back up onto my feet.

I think the social worker’s call came at a time when I really am ready to hear it and am panicking anyway so willing to jump back into the Wheel of Diagnosis.

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Secret diaries of the BlogHer Reach out tour

I missed the party because I was staying with M. who I supposed is now to be called MamaMich and LQ alias MamaLala, their baby, and their FIVE cats. We had Cuban food that was just so-so but I love cuban food like crazy. Mmmm platanos. We gossiped more about Ping’s perfidy and how he jacked them up (so pointlessly! how could he!) for thousands of dollars. I felt all admiring of MamaMich’s Dr. Mich Harvard id card. We argued about what it meant. I said it meant something even if she didn’t think it did in her context, it did in mine. I know half the folks in ivy league are morons, well aware. It is not that! It’s still a mythical institution! Where one might, might, might climb up a tree to a place no one’s ever been before. M. climbs up the back ends of drosophilas to give them colorectal cancer! Then she gives them tiny enemas! Or maybe a grad student does the fruit fly enemas. Dunno. Counts for something mythical, surely. I always like being in the midddle of MamaLala’s stuff. It is just my style of comfort and hominess. Books are everywhere. I feel like things are in logical places, which for us means in stacks of papers and books with cats sleeping on top of them. On the ride up we talked about WisCon and the book for it and then inevitably about internet drama, politics, anarchy, and the ethics of organizations and personal interactions. Our conference hotel is in a sort of office park behind a mall out in the burbs somewhere. I will be pretending it’s a magic castle and we’re the dancing princesses, well, the blogging princesses who mysteriously disappear every night through the forest of silver leaves and the forest of mall decorations and the ogres in sports uniforms in the lobby to our fabulous witchy coven thingie at the stroke of midnight. But no… the silver leaves have faded. I don’t get to see Starkeymonster who is sick as hell with the flu, for which I was teased mightily by my ex and my sly eyed companion-in-evil as they were all like “Of course Badger has SOME GIRL she has to go see” which I protested only feebly that ack, of course, they are my priorities, I am only here one day, I halfway only intend to introduce them all as fangirls extreme, nor did I go to Honk! downtown. Instead I worked on work. I am in a king-size bed in a slightly too swanky large hotel room (next to the elevator, thank you, desk gnome with the pineapple insignia!) asphyxiating a bit in its air freshner, perhaps the carpet freshener stuff sprinkled down there… at least the bed is nice. I could fit 3 people in this bed! HEY NOW LADIES! I like inspecting all the odd accoutrements of a hotel room. there is no minibar – coffee, ice bucket, giant TV, notepaper, little shampoo and soaps, a bible and a book of mormon and a phone book. Sarah Dopp came over to give me a hug but now I can’t remember if I got the hug. Instead we laid in bed and talked about the conference, my talk & slide show, my points I want to get across, how to feel out who is listening and what they want and what they have to say. She told me more ideas for geek lab and I’ll go participate for most of it. What will it be? We’ll make it good. In the bar downstairs I sat with Kristy and Karin and one other person. A very large man in a baseball cap joined us tenatively at the end of our table. “Obama!” he said, all lit up. “Obama! Yeah!!!” Was he drunk or in some altered states? I felt us all look around the table trying to figure out which one of us was about to get hit on. Probably not me, I code as too gay for the burbs and the wheelchair tends to rule me out of the general course of lechery. “That’s right! *clappping* Obama!!!” the possibly Special man in the bar said, grinning like a maniac. “Obama, Yeah!” We smiled for a bitchosecond (the exact unit of time to be polite yet blow someone off in a bar) and went back to our political conversation. Karin said she has a special calendar and it is now down to 103 days before Bush is out of office.

Sarah and I continued our non-hug and instead had a guerilla work meeting between our two companies which we realized would save asstons of work and confusion for everyone so hurrah us. Palaces have sewer rats which scurry around with their own ways to save the secret passages in the dark of the castle. We talked over our moms and boyfriends and politics while we were at it.

I have set up the coffee machine for the morning! Bloggity morning!

I used the intertubes to telepathically bond with my young sprog, who explained that he was cleverly putting 11111 in the middle of his exclamation points, to make them cooler. U R KEWL, typed his distant mom, full of love and l33t. Rook has written up a guide to local issue voting in our district. Zond-7 pointed me to Golly the Game of Life (I missed this week’s python lesson at the EFF.)

I’ll fall asleep reading “Playing for Keeps” by Mur Lafferty! It’s about superheroes! You can get it in a podcast! You can read Mur’s mysterious twitters!

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Geek out at BlogHer Boston and DC

This weekend I’m flying out to Boston and DC for two BlogHer conferences. I can’t wait to meet new people and the women I already know! Every feminist conference I go to is super inspiring and this is one where it is totally normal to have your laptop going at all times, so at dinner there you are with 10 other chicks typing like maniacs in between the laughing our asses off, insane gossip, politics politics politics, book recommendations, and WordPress plugin tips.

erin feeling the computer love


Here’s my talk, which i will just keep on thinking of as “Quick Blog Overhaul” though it is really called “Blogging Basics: 6 Steps to Personalize, Polish & Promote Your Blog“. It will be a brief talk and then we’ll split into small groups to do the hands-on workshop stuff.

Join BlogHer’s {{Badger Hemulen}} and a team of subject-matter experts for a quick and effective blog makeover. Let’s look at your blog, whether you’ve got one post up or 100, and give it some love. Liz will explain 6 simple steps you can take to give your blog a tune-up, and then we’ll break into small groups to try out some of what you’ve learned. These 6 steps can help clarify to your readers who you are and what you write. Whether you use WordPress, Blogger, TypePad, or any other platform – you and your platform are welcome.

  • Personalize: Danielle Henderson will work with you make sure your readers know how to identify and reach you…and that you feature your community, so they can also see themselves. In addition she’ll work with you to learn how to add images, or even audio and video, to show who you are.
  • Polish: Megan Garnhum will cover the basic geeky ingredients that add up to a truly functional, findable, fabulous blog. Learn about appropriate, search-friendly hyperlinking, tagging…why and how, and even about headlines and why they matter.
  • Promote: Alissa Kriteman will help you learn how (and why) to put your post on BlogHer, Twitter, Kirtsy, Digg, Del.icio.us, Reddit, Stumbleupon, other social sites.

  • Then there are the parties!

    I can’t help it. Women get in my lap. What can I say?

    In DC I’ll be doing the same workshop with a different set of local bloggers:

  • Personalize: Veronica “Roni” Noone will make sure your readers know how to identify and reach you…and that you feature your community, so they can also see themselves. In addition she’ll work with you to learn how to add images, or even audio and video, to show who you are.
  • Polish: Andrea Meyers (well known for Andrea’s recipes) will cover the basic geeky ingredients that add up to a truly functional, findable, fabulous blog. Learn about appropriate, search-friendly hyperlinking, tagging…why and how, and even about headlines and why they matter.
  • Promote: Kristen King will help you learn how (and why) to put your post on BlogHer, Twitter, Kirtsy, Digg, Del.icio.us, Reddit, Stumbleupon, other social sites.

  • There will be too many awesome people there for me to name them all but I’m going to be super happy to get to hang out with Beth Kanter, Candelaria Silva, Erin Kotecki Vest, Laurie White, superfantabulous feminist geek Shireen Mitchell, and of course my friend Sarah Dopp, the BlogHer founders, and my co-workers like Kristy who are fantastic bloggers and who I see practically every day but don’t get to hang out or really talk blogging because we are WORKING WORKING WORKING.

    So, along with all that, I get to see my main partner in crime, editorial and geeky soul sister forever, Laura Quilter and my awesome brilliant ex and good friend M.M. and their new baby! You have no idea how excited I am. Actually it’s worse than that. Last time I got to be with Quilter and then had to leave I sobbed for an hour in the car. I will have to drown my sorrows after I leave their house, on Friday night in bloggity sisterhood in the Boston Burlington Marriott hotel bar.

    On Sunday I’m flying to Baltimore, renting a car, and sloping off to see my grandma on the Eastern Shore. I haven’t seen her in years or my uncle either. I got to hang out with her for about a day when Moomin was 2 or 3. Other than that it is all little cards twice a year and I usually lose her $25 check and am a very awful person and never write back. I regret not being very close with my extended family but that’s the truth of it. I think of them very fondly, but in actual practice, there is not much of a relationship.

    Then glorious Blogheristas on Monday again in DC! Or, really, Bethesda!

    On Tuesday before my plane leaves I want to go find my friend lavendertook and hang out at her funky local internet cafe and co-op – then it’s back home where I’ll collapse into a little travel-weary puddle.

    I know it is sort of boasty but I would like to say not for the first time that I am proud of myself for going on giant trips in my wheelchair and just kind of facing it down. I get unnerved sometimes. That feeling to me is a red flag that means I MUST DO WHATEVER THE THING IS. In general I’m walking pretty well, but after hours on an airplane, I won’t be and my ability to walk isn’t predictable especially with travel. Walking, who needs it? It’s more the exhaustion and being demoralized by pain that gets me. Still, consider the allure of jetting into town, renting a car, and the open road! Could go anywhere! (But probably won’t.) Now is the time!

    If you live in those areas and haven’t registered for the conferences, think about it, there’s still time, it’s only $100 for an all day conference with food and a cocktail party. & well worth it for learning stuff, meeting great people, the massive, massive hit of inspiration from hanging with other women writers and bloggers and geeks and people putting their ideals into practice, “networking”, and last but not least huge fun.

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    Save Lori’s House

    Last fall I was diagnosed with a rare form of slow-developing ALS, as the explanation for my “bad leg” that lands me in a wheelchair or on crutches at times. A few months later I was “undiagnosed”. Freelance writer Lori Steele was diagnosed right around the same time. Her ALS has progressed rapidly. She and her 7 year old son may lose their house, which has just gone into foreclosure. Her blogging friends are trying to save Lori and her family from an enormous pile of medical bills:

    http://diaryofamother.blogs.com/mamas_musings/2008/09/save-loris-hous.html

    Could have been me… could have been you… Let’s try to spread the word and help Lori out with some donations and bigger media coverage.

    It’s not right – and I don’t mean just that she is battling with ALS – It’s not right that this is what happens to a hardworking and successful single mom, because she doesn’t have insurance and our medical system sucks. Medical crisis? THERE IS NO SAFETY NET. Instead, it is right when you’re the most down and in need of help that rich people; doctors, bankers, etc. will kick you when you’re down and pull your hard-won middle class life to pieces, kick your family out into the street, and leave them crushed by debt.

    Interesting that Lori copy-edited Michael Moore’s book. Where is he to help her in this crisis? Hey Michael Moore could you at least throw a little publicity Lori’s way ?

    Lori wrote this about the aftermath of watching “Bambi” with her son, just this summer:

    He had tried to shield me from the sadness of knowing that Bambi’s mother was dead. And now it was my turn.

    “Will you look after me when I’m a grown-up?”

    On the morning after his fourth birthday, Jack waits for an answer. There’s so much that can happen in this beautiful, crazy, too-mortal planet, and I know truth and its consequences are too much for a child. For my child. For this moment. He will learn the whole truth in time; he will learn that life is as capricious as it is constant. For now I want him to return safely to Neverland.

    I tell him I’ll always be here for him, one way or another. Always always always. Just like my mother is here for me. Just like I was there when he was 3. It is an impossible promise, a gamble with his trust. I secretly pray I don’t let him down, not on this.

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    Hurricane, vote caging, leg failure

    Here’s what’s on my mind today:

    *Projected path of Hurricane Ike
    * another map from the City of Houston
    * http://blogs.chron.com/sciguy/archives/2008/09/ike_now_likely.html

    Michigan Republicans being super damned sleazy, underhanded, Lose your house, lose your vote working to delay voters, disenfranchise people under threat of losing their homes

    My family in general, my mom’s dad is in the hospital, she is flying out there (out of Houston, tomorrow morning, right in middle of the evacuation) to go to him, and I wish she wouldn’t on about a million levels

    Slipped today, from weeks of mostly walking on crutches about a 4.0 – 6.0, back down to a 6.5 which is a major difference for me. It means I need a bathtub rail, I have a hard time picking stuff up off the floor, I can’t really walk around even the bedroom without both crutches. Compared to walking around the house and the office pretty freely without even a cane. Fingers crossed it is just a little blip and I will be frisky again tomorrow morning. I just walked all through the grocery store and felt super happy, though achey from it, and then… bang, half an hour later got up from bed and fell forward to grab the door and hold myself up in a giant panic till Rook brought me the crutches. If it lasts then I will have a harder time. I’m so grateful for my good, lightweight, awesome wheelchair.

    It was back to school night, all pretty interesting; I took notes and will blog it later on badgermama.

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    Dead dirt

    Besides reading and housework I need some excuse to look away from the computer. Now that I’m up and out of bed more, maybe a little garden tending?

    I am eyeing spots for compost that is very near my door, and one or two areas also close and easy to water where I can rehabilitate the soil. The long dry season here and the tough rocky soil made from decayed serpentinite combine to make it easy for the dirt to die, in other words, for the worms to leave, the fungi to quit threading their little riots of mycelia, & microbes all dormant so that you could set an apple out in that dirt and nothing would happen to it for weeks.

    dead dirt

    I used to really like the process of composting, balancing out a compost pile and watching it cook. I produce a steady stream of coffee grounds and eggshells. For leaves we could shred paper. It would be good to have a little pile of dirt and leaves to start with or a trench for burying stuff.

    Though the goal is to get myself off the computer and into the physical world, god knows if I don’t blog it I might not stick with it and even then… it’s chancy.

    My other project is to get rid of books. I thought that I could start by blogging brief notes on a bunch of heavy literary theory books, so that I remember what I had and read and knew and could find it again if I wanted. Then it won’t be so painful to give away the books.

    Fixing broken things, making bare dirt turn fertile with weeds or fruit, nursing half-dead houseplants thrown away in the trash, all those things give me particular pleasure. Then later the triumph over deadness of running my fingers through the soil, easy home for worms, made from waste and trash. It’s like shaking my fist at the world. It brings out all my stubbornness.

    I stayed home from Naomi Novik’s reading at Borderlands – last few readings there were so crowded and I couldn’t take it in the wheelchair in a crowd after this weekend! I am sure she was lovely – I will write a review of Victory of Eagles to make up for not going.

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    Uneasy need for rest

    I spent yesterday in bed writing drafts and abandoning them, watching feeds, absorbing too much information. After the long intense weekend, complete rest might have been a better idea. Last night in sleep and waking I scrabbled an endless round of anxiety dreams about airports, schedules, missed trains, my wheelchair being taken away from me, being lost in cars, and stressful arguments. I don’t want to get out of my pajamas. My mom and dad are here, planning to take Moomin to the giant complicated indoor playground-inside-a-swimming pool in the East Bay, meeting Minnie and her baby, going back to her house, so I also feel torn and sad and want to be with them and that I am letting my family down, my child barely missed me, I am not needed, I did not organize, I didn’t invite, I didn’t cook or shop or prepare, I’m not participating, I’m not paying attention, I’m letting the moments slip away.

    I made hundreds of shallow connections, but not enough deep ones. Nothing felt like it bore fruit in the moment. But, it will, and I trust that. Instead I was a conduit and a connection point. I didn’t do anything, make anything, fix anything, build, create, even in my imagination it all remained inchoate — but I took the quick evaluations & shallow connections and said here, you talk with her, you need to know this, read this, are you aware of exactlywhatyouneed.net, and people lit up as they connected, as if I were a telephone switchboard. If I am invisible in that, I have to still be satisfied with my role and abandon my ego. It is hard to be visible, but invisible. A sort of conspicuous mascot, seen but not known. I could cry on the shoulder of everyone I met but did not get to know. Is it possible to love everyone? Maybe, but not to love them right. There is too much, there are so many of us, I am starving to know everything and everyone.

    Oh poor me, a weekend of hundreds of people telling me I’m super awesome!

    Ugh! But am I… I’m so not… they don’t know… Is it enough? Am I enough? Can I ever do enough to be satisfied with myself? Can I at least finish a few projects, follow through on anything? How do I know that people like me for the right reasons? What if it’s all flash and show and surface, and false?

    Where is my discipline?

    What if I am making all the wrong choices?

    But back in real life and out of my theoretical identity tailspin:

    Aside from catching up with some regular work, I want to continue trying to synthesize this weekend and some general thoughts about blogging, gender, class, and digital divides. And I’d like to look forward as well into planning some things to do or suggesting directions.

    I have an awful lot of blogging cards to look at. Blogs to consider and link to. Notes from conversations to write up. Thoughts to gather and express.

    Meanwhile the book project is on the back burner, a constant torment and source of guilt.

    I am comforted yet perturbed as the hypothetical of “at some point in next few years Rook might switch career tracks and have a break” becomes “Now I support the family for a while and switch roles myself.” Can I do it? I’m a little scared. It might be a very good thing in many dimensions.

    I might need in a big way to migrate all my blogs back into a single one, clean up this one big time with proper tags and categories even if most of the categories are nebulous like “Long Philosophical Rant Mixed with Daily Life and the Juicy Bits Buried Baroquely”. Badgermama and Composite feel so cramped and sterile and thank god I still ramble on at length without trying to narrow the focus here, where I say whatever the hell I want (barring a couple of limitations which i will keep trying hard to think of as Tact).

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