- I was going to skip dancing this morning, but my body wanted to do it, so I jumped on my trike and went downtown. I liked shaking, liked the drummers, liked rolling around on the floor and kicking my legs in the air, walking my feet up the heated pipes along the wall. Okay, maybe I really am a hippie. I was singing "The Age of Aquarious" as I pedaled away.
- I rode to State Street Fruit to get a ticket for a poetry performance, then read about Dickens and mesmerism at the bagel place.
- The big poetry show was at the Academy of Music. There were slam poets I enjoyed, but the deep heart of it, for me, was Richard Wilbur. I got to hear him read poems I love, including this one.
In which he says to his daughter, who is working on a story, about writing:
It is always a matter, my darling,
Of life or death, as I had forgotten.
I'm needing nerve, focus, and flexibility. There are so many ways to keep getting there: movement, poetry and community among them.
That's surprising to me, but it's true. A lot of that's about Deb Malkin, the store's owner, who was resplendent on Wednesday in a corset and a plaid bustle skirt from Bertha at Size Queen. The store has a narrow, open space above the huge floor, and looking up at Deb with her decollatage and bustle while she leaned over the rail to talk to somebody below was the kind of vision of determined joy in action that can go a long way to get a person through a cold, tight February. I know Deb through fat activist circles, and, as so many of you do, here on livejournal, and I feel graced by that. And, for me, that was a huge part of the experience, getting there with Leah and Tony and Becca, abundance already, and then seeing so many folks who I respect or admire or feel slow affection for, and so many others who were in the midst of their community, having a party, and so many others blissed out by treasure hunting, dazzled by what they could find and wear and afford. I think I got the last glass of champagne, but I was long since high on the sheer, crackling plenty of it all.
As I'm writing here about clothes shopping, about plenty, I keep getting little scratching thoughts about my own money worries and about how it's a moment of economic change and fear for many (and nothing new in that for many more), but, for me, this strange, sudden abundance in the form of a vintage clothes store beyond a fat woman's dreams didn't feel out of balance. It felt like a palpably generous human endeavor, a beautiful risk in inviting the fat girls (self defined! a big range of folks! many genders, and plenty not girls, but this was my feeling, my experience of the moment) in to play.
The truth is, I didn't even begin, literally did not even begin, to scratch the surface of looking at the clothes. I don't know if I could have taken a fraction of it in if I were there on a quiet afternoon, and as it was, I was too excited by it all to have a chance. But I decided to look for work clothes, and Becca helped me try on jackets and gathered a whole bunch of possible pants for me, and gave advice and got feedback. I came home with a short black linen/polyester jacket, size16 (I'm telling you -- the whole world tilted), and I'm wearing it as I'm typing. It cost me $12. I'm kind of in love with it. It's a simple thing, but it's clearly a power object, and smells, ever so faintly, of a good, gone perfume. Becca made me swear that I'd iron it, but I haven't, just yet.
A tall woman at the back near the row of spectacular, glittery dresses held up a long brown item that swept low in the back and high in the front, and asked us, "What is this?" We decided that it had to be a dress, because it was so long, but eventually we talked someone else into to putting it on, and it was a ballgown skirt. It swept the floor and made a magnificent funnel tornado twirl when she spun. It zipped together in a v at the back. I was in line to check out before the dancing started behind a woman who was bought two elegant purple bags full of things, one of them with black boots sticking out of the top. Her voice shook with emotion when she said thanks. I think the neighborhood word is going to spread fast.
I didn't see into the dressing rooms with the zebra striped curtains because they were all occupied, but I saw the eponymous picture on the one named for Mama Cass. I just took off my leggings and tried on pants in my pink tights in the wide, wide spaces between racks. Deb showed me my own picture among all the others in the cozy lounge, with its gold couch (the woman sitting next to me explained that she was a graduate student in journalism liveblogging the event). Someone from the Mayor's office read a proclamation making it Re/Dress day in Brooklyn, so much better than trying again to put the whole borough on a diet. The dancers could do amazing things, and I was struck by their athleticism, the strength they used to move, along with everything else. Bertha literally made me cry by talking to me in an enormously present way about my novel, and the hard moment I'm in with its fate in the world. We didn't get a chance to talk much, but she went in so deep so fast and looked in my eyes. It almost makes me cry again, just thinking about it. I talked a little with Geleni (so many people there! so many faces shining among the clothes), who said that having online lives together was like being in touch through the collective unconscious. This trip to Re/Dress really did feel like a wade into that kind of common pool.
And the store is there, open, ready for other, quieter other days, ready for other explorations of what kinds of cuts and fabrics people have the means and the impulse to inhabit. I ran across a phrase recently in Netherland, a novel I loved: entrepreneurial wistfulness. It's been haunting me for various reasons: because I have that for my novel, I think, in that, separate from what it has in it as a book, as what I want (I always want this) to be art, I also want very much to have it make its way in the world. I can taste it, I can feel it, as a character in Netherland dreams of a cricket stadium. Re/Dress (that tiny poem of a name) is past wistfulness into the very tactile present, and it's a fabulous place to walk into. I'm going again, when I can.
The place was packed, standing room only, so I found a spot to lean on the wall behind some people at the bar. They were joined, eventually, as more people crowded in behind me, by a family with a three year old and a baby who had a dazed, open-mouthed look on his face. He seemed pretty overwhelmed by the shouting and clapping (his sister put her hands over her ears), but when things quieted down for President Obama's speech, he was sitting on his dad's shoulders, and started making talking sounds himself. He was watching the screen and clapping, then pounding on his father's head. All around him, we laughed noiselessly, not to interupt the speech.
Also, from the speech: choose our better history.
Our better history, not falsified, not erasing other ways to tell and live and know the stories, but chosen and studied and understood and expanded and built from. I'm for that.
As I left, the running guy from the sidewalk held open the door and asked if I'd had the buffet. I hadn't spent any money at all, and don't think I could have if I'd wanted to. A man sitting on the cold sidewalk under the train overpass asked me for money (which will be illegal if the panhandling law passes). I said no, and then, as a police officer was coming towards us, walked a little ways further, then stopped to watch. The officer stopped to say something to the man on the ground, then fumbled in his pocket, and gave him a cigarette. I left them having a smoke. It seemed to be a civil moment, hard-won and far from certain, I know, but I was grateful.
As I was getting on my trike, I saw two women (maybe mother and adult daughter) who had been behind me at the bar, and as I waved at them, the younger one yelled, "Obama," and the older one yelled, "Don't forget to pound your head!" It was a joke about the baby. I pounded my head and waved from the trike.
Open poetry reading, Yellow Sofa, starts at 6:30 tonight.
(Edited because I decided not to give sneak previews of what Rebecca was saying.)
I syndicated Rebecca's blog, Urban Ecology, on livejournal, and if you're interested in reading it regularly, you can add it here. She's been doing work around the floods on the Gulf Coast, among a lot of other things.
- I found out about it on usaservice.org. I'm going to go fold clothes for the hospice shop and collect canned food for the survival shelter tomorrow from an event I found there, too. There's a lot to be seen about the Obama administration, but I appreciate that they found me a place to dance.
- It was snowing this morning. Not too much, but it made for hard triking! They had barely plowed, so I had to ride right in the middle of Route 9, in the only place that wasn't thick with snow. The cars had to go my speed until I pulled over to the deeper stuff and let them by. I almost didn't go because of the snow. (And, you know, fear.)
- When I got to the drive for the Fitzwilly's building (site of an encounter last summer with a rude man and his motorcycle) I had to get off and push the trike through the slush. A woman walking asked if I needed help, but I was waiting for her to go by. She was nice, then she went into the door I was headed for. Two other people, looking happy, went in, too. Okay!
- It was on the fourth floor. (Another reason I almost didn't go.) I could hear the drumming. There were placards along the stairs with quotations from Dr. Martin Luther King, Jr. They were saying beautiful, profound things. I went slowly up the stairs and read the placards. This made me both less winded and less scared.
- I took off my boots in the anteroom. I like an anteroom -- it's good to have another moment of transition. I peered into the room -- everyone was the floor while someone danced in the middle. Yikes! But they looked like old hippies, and other generations of hippies. Hippies and artists taught me how to dance in the first place. I like them, in general. I'm not exactly one of them, but I dance like them and I understand a lot of their ways. I liked the sound of the music.
- Then, there was a little dressing area, where I took off my coat and my jeans, and saw the nice woman who had offered to help me with my trike. She said that she hadn't been there in a long time, and I said that I never had before. "Oh, you'll love it," she said. I go too many days when I don't have nice, simple, small conversations in person with someone else. This was very good, and I was also glad that there was no talking once a person went in to dance.
- I put my can of baked beans into the basket. I put my five dollars in another basket. People were up and dancing now, and, why not?, I started to dance. There were handsome women drumming and singing in the front. There were grey-haired men in tie dye. Some people rolled over each other or lay down on mats and did acrobatic dancerly moves, alone or together. They were fun to watch. Lots of women my age or older, including a couple of fat women. A few kids running and laughing. Mostly white, but not everybody. I started dancing at the back near the nice lady from the driveway. People looked at each other lightly, not demanding, but with some sense of welcome. There was a window with a ledge that always had someone sitting in it.
- The drumming was good for shaking, arriving that way. It felt so good to move. I was quickly too hot. I had on leggings and a body suit and a little brown dress that came in the amarama's magic box for my birthday, with straps on the sleeves that dangle and fly. I liked having a skirt I could swirl by the hem.
- After a while, a grey-haired man who was tie-dyeish came up to dance with me. He did a shaking all over thing, like me, and hand motions, like me. It was funny and fun for a minute or two, and then the song was over, and I sat down on the floor, and that was enough of that.
- I liked the live drumming and singing. After they left, I liked the highly altered version of We Will Rock You. I stomped and even jumped up and down, which might not be wise. There was a tall, blonde woman who struck me as an lgbt person, who was smiling very sweetly at me and pressed her hands together and bowed a little when I smiled back, stomping.
- I didn't dance in the big line and circle with most people at the end. Wasn't quite ready for that, but did stand up and dance on the outside, and that song ended with a piece of a speech by Martin Luther King, not "I Have A Dream," but he was talking about a call to love.
- Then we watched a video on the wall. The Dells doing the Star-Spangled Banner, with a background of intense images from African American history, including slave imagery and a lynching. I watched, and felt it, and followed the lines from the writing I've been doing over the past few years to these images and back.
- Then, there were circles. We said our names, and drew a quality from a basket. I got "education. " Then we went around with announcements. Afterwards, most people left, but I stayed for a small circle in which people talked about their experience at the dance and anything else that was coming up for them. Nothing was perfect, but the whole thing had this quality I love of a bunch of people trying to keep something happening because they care about it and because they think it might be a good thing in the community. I folded up a couple of scarves and put away a few placards.
- Right before I left, the tall blonde woman came up to me and whispered in my ear, "I loved to watch you dance. You're a dancer. " That was lovely. And it felt true -- I felt like a sweaty, hippie dancer, in my body, ready to trike home (the roads were plowed! an old hippie guy that I'd seen at the dance actually threw me a peace sign with his fingers from his car window as I pulled out on my trike!), and being the other things that I am, hot to tell the story to you.
- Now it's 3 pm and I better eat lunch and do the next thing. But the dancing felt so good!
And, this morning, Mark posted a link to a fine post about the situation in the New Yorker blog, which included links to both the poem itself and to a gorgeous, illuminating essay by Mark about the writing of it.
All this has brought me back to his work (which wasn't hard, his amazing Fire to Fire: new and selected poems is one of those books that I keep sitting on the top of my filing cabinet behind me, so that I can easily reach it if I need to read poetry that will help wake up my language and clear my mind). I think that spending time with Mark's poetry is something that creates change in this chaotic world, or at least in the reader, in me. It's a good moment for that, for sure.
A while ago, I syndicated Mark's blog on lj, so if you'd like to read his posts on your friendslist, you can add it here.
You could sign up for the newsletter on my website. (Don't forget to reply to the automatic confirmation email -- a lot of people do, and then I can't send you a newsletter.) I haven't used the newsletter for a while, but if we lost livejournal, I'd definitely use it to tell you where I'm blogging.
My website (which is hosted by the Authors Guild) also has a new blog function. I haven't explored it, but I might set up shop right there.
I've also just created Susan Stinson at blogspot. I haven't posted there yet, but if you use or are considering blogspot, you could "follow" my address there, and we'd be connected already if anything should happen here.
And, sooner or later, I'm expecting to give in and set up on Facebook.
None of this would replace the community that exists here, but I'm hoping that most of us would find each other somewhere else. I've been thinking of setting up a public blog and using livejournal as a friends-only private journal. I'll let you know if I do get that done.
I haven't been able to access ljbook, so if lj really does vanish, I'd lose years of the journal, which would be a sad thing. But, barring such changes, I'm carrying on here.
Here's a quote from the MedPage Today summary:
All patients received chemotherapy administered according to their actual body weight. Often, chemotherapy is administered based on ideal weight, which may lead to insufficient doses for obese patients, according to the researchers. Emphasis mine.
I'm sitting here, breathing into my hands for a minute. Women, I don't know how many, have died because their treatment was based on the body that the culture insists they are supposed to have, rather than the bodies that they actually have. Fat women in our millions have been told that we bring a higher risk of death from ovarian cancer upon ourselves by being fat when that higher risk of death has been and is being caused by a failure to adjust treatment to the size that our bodies actually are.
And note that the action points in this article, addressed to doctors, involve two suggestions about explaining the study, but not the obvious suggestion that chemotherapy be administered based on actual body weight rather than on ideal weight.
Yes, of course, I absolutely would get on the scale at a doctor's office if it actually resulted in treatment that would benefit me rather than another follow-the-pointing-finger-dance-through the flamier regions of the BMI chart. The last time I was scheduled for minor surgery, the anesthesiologist called me the night before because he hadn't been given my file, and wanted to know if there was anything about me that he might need to know. That he thought to call me up made me respect him a lot. I gave him an accurate estimate of my weight. He was noticeably surprised, but made appropriate adjustments, and the surgery went well.
This seems so obvious and matter of course, but now it also seems that it doesn't routinely happen for patients receiving chemotherapy, and so more fat patients are dying.
And so more fat patients are dying.
I am so angry.
bearsir posted the first link I saw about this. ETA: There is also now a response from foamcore to bear's post that gives some useful medical context, and suggests a way to advocate for more research about the specific effects of drugs on fat people.
We have to advocate for ourselves and our loved ones. What else? What would change this practice? What would help?
ETA: nerd_dog pointed out that Kate Harding wrote a post about this today at salon.com. Although there is plenty of vituperation, some of the responses raise the point that fat sometimes responds to drugs differently than other tissue, and so sometimes it might be appropriate to dose based on "ideal" weight (although, to me, the use of this term is a pretty clear marker for bias), or on other things, such as skin surface, rather than weight. The news in this article seems to be that this is not the case with ovarian cancer. I don't have the skill or time to try to tease out bias from science here (although past experience would suggest that often there may be some of both in operation), but one point is clear: in terms of ovarian cancer, this study suggests that dosing should be based on actual weight. And, to this point, it often has not been.
And me, I feel reminded to ask careful, insistent questions about body size and dosing in relationship to healthcare.
I cried so much as I watched Milk that it surprised me. When Harvey Milk was shot, I was still in high school in Littleton, Colorado, well known as bastion of enlightment. (I wouldn't want to dismiss or underappreciate the many kind, good, generous people who surrounded me there, but it was not a time or place in which coming out could be taken for granted, taken lightly.) I don't remember hearing of the shootings, but I remember, later, the Twinkie defense, and the very light sentence for Dan White. I was the age of the boy calling Harvey from Minnesota, and part of the story of that time in my own life involved treating myself less than tenderly. I've said it before, but it really was the gifts of activism, of trying to make changes in the way the world worked, of trying, at least, to let myself honestly see it, that opened me up to more sustainable levels of joy. That, and the relationships that came with it. And study. And reading. And starting to make art.
I just finished reading Toni Morrison's new novel, A Mercy, which is unbelievably beautiful. I'm going to write more about it in another post. Reading it reminded me of how I sat in the basement of the library at the University of Colorado at Bouder, in terrible fluorescent light, consuming Toni Morrison's novels voraciously -- Sula, Song of Solomon -- drunk on language and wrestling with meaning. Those books busted something open in me.
I thought Sean Penn was brilliant in Milk. I loved that there was an unmistakable sense of movement, that there was a sense of intimate, messy love within all the strategizing, stupid mistakes and playing with fire. In my experience, people with single-minded genius (it's a word I'll use, but it always involves an alchemy of the work and influences of many people, sometimes many communities) are often pretty difficult friends. (ETA: I just watched a video interview with Cleve Jones on his website, and he pointedly says that Harvey Milk was not a genius, not a saint, but "an ordinary faggot," so I'm adding this correction to go with that. The point being, of course, that ordinary people acting out of a larger sense of purpose can and do accomplish stunning things.) I'd guess that Harvey Milk was no different. Oh, but the willingness to fight, and the waves of people in the street -- it's a strong story, and the movie catches the opera in it.
"How do you like my new theater?" Harvey asks the young organizer Cleve Jones as they're climbing the showy steps under the dome of the state house, and Cleve, who I swear found his glasses on my nightstand in 1977, says something like, "A little over the top." Life can be like that; politics, too. I loved this movie, which finds meaning in loss without faking it (which is not to say that there 's not someone on the back of a motorbike speeding to calm the violent action he helped to start).
Today, I got on the stepstool to get down the good teacups, and had rills of talk with a friend over hummus on toast. Then, I went with her to a community farm to pick up the weekly "winter share" that had been given to her by someone who is out of town, and so missed the pick up time. It was an adventure. We got lost twice. We didn't know what to do, but, when we finally found it, there were different categories of food listed on a blackboard and directions about how much to take of each: 1.5 pounds of green beans. Greens: lettuce, kale, chard. Choose four. Like that. She been told to bring bags, and shared copiuously with me, so I had two turnips, two yams, a bunch of kale, a bunch of lettuce, a huge hard round avocado (did that grow around here?), two tangerines and an orange (some kind of fruit swap?) in a big white paper shopping bag from Talbot's (est. 1947), which was meant to carry new clothes home from the store. I put her green beans in an xmas gift bag covered with little decorated trees.
When I got out of her car, the bag ripped, and the turnips and the citrus went rolling away down the street. I had to chase them. It's a slope, and the orange and one turnip looked to be heading towards the entrance to the fairground, but when I got in front of them, they rolled right to me.
So, I put the turnips and yams in the dutch oven, and just ate the white, juicy, sweet meat of a very round turnip, mashed with a little butter and pepper in a bowl. The taste was new to me. It was a good way to come home.
Also, I couldn't find one of my gloves today, and there was no waiting to see if it might turn up. Riding a trike when it's below freezing without gloves is reckless. It's getting dark so early, and I wish I had the better light that I had last year, the one with 5 leds. It stopped working this fall, probably from water damage. I replaced it with one that was much cheaper, but nowhere near as bright.
Those are my plaints, so early in the winter. But, I like feeling rugged. I like being able to get where I need to go. I like pushing the left grip back up the handle bar as it threatens to slip off. I like the motion, and the phyiscal work of it. I like its squat elegance, its red modesty. I love my aging trike, even in winter. As long as the snow isn't too thick to ride on, and the air isn't too cold to breathe.
Honestly compels me to add that I also quite enjoy sprightly rides in warm cars, too.
from "People, Land, and Community" in Standing by Words, Wendell Berry
Ms. Bechdel began her strips all those years ago, she writes here, partly to provide “an antidote” to the culture’s image of gay women as “warped, sick, humorless and undesirable.” Boy, has she succeeded. Her crazy lesbians seem saner than the rest of us, and beyond beautiful.
As I just wrote in a comment in her blog, this kind of attentive, accurate praise for her work, hard earned for decades, so long in coming, makes my head explode.
Only the action that is moved by love for the good at hand has the hope of being responsible and generous. Desire for the future produces words that cannot be stood by. But love makes language exact, because one loves only what one knows. One cannot love the future or anything in it, for nothing is known there. And one cannot unselfishly make a future for someone else. Love for the future is self-love--love for the present self, projected and magnified into the future, and it is an irremediable loneliness.
Wendell Berry, from Standing By Words
He's just put up a new post I love about people asking him about what it's like for him that Mark's just won a big award. I think that this is the heart of something really important:
Here’s a passage from Tillie Olsen’s Silences that Mark put on his blog just a few days back. I ended up reading it to my class this past Monday, asking them to consider Olsen’s words as a possible politics for how we might approach our work.
Literature is a place for generosity and affection and hunger for equals - not a prize-fight ring. We are increased, confirmed in our medium, roused to do our best, by every good writer, every fine achievement. Would we want one good writer or one good book less?