“Books are published at such a rapid rate that they make us exponentially more ignorant. If a person read a book a day, he would be neglecting to read four thousand others, published the same day. In other words, the books he didn’t read would pile up four thousand times faster than the books he did read, and his ignorance would grow four thousand times faster than his knowledge.”
Playful bullshit, still better than what usually passes for an essay! I’m so pleased.
My reading list lately:
* Beverly Cleary’s early autobiography. (Good!)
* The Annihilation of Caste by B.R. Ambedkar, which had a “preface” which was really another entire (great) book, by Arundhati Roy. I loved her preface so much.
* Binti by Nnedi Okorafor, a tantalizingly fabulous science fiction novella
* The Essential Engineer: Why Science Alone Will Not Solve Our Global Problems by the entirely adorable Henry Petroski (Don’t start here with him, start with The Evolution of Useful Things if you don’t want to drill 900 pages into pencils or bookshelves; otherwise, if you are hard core, read the Pencil book or the book on Bookshelves) I really can’t gush enough about his books but you have to be that kind of person who will read a 900 age book about the design of pencils through history and make everyone around you listen to you talk about it.
* Fifth Season by N.K. Jemisin; geologist magicians and terrible catastrophe, well worth a read, violent and intense so be warned. Mindblowingly awesome.
* Court of Fives by Kate Elliott. Kind of Hunger Gamesy but not so pandering and silly. Fun. Fight against patriarchy by your forbidden engagement in weird, dangerous, ritual, extreme sport! Weird death magic!
* Sorceror to the Crown by Zen Cho; magic in alternate London, fluffy and fun (but not embarrassingly bad like Carriger)
* All 5 of the Gail Carriger Soulless series (Ridiculous fluff; book 4 was the best)
* The Dandelion Cottage books, a girls’ series from 1905 (So racist and classist, and so interesting of a package)
* Ancillary Mercy, which grows on me though it’s not what I thought it would be. I have analysis! It is not a repeat of books 1 or 2 in the series. It
* The Maker’s Mask books by Ankaret Wells (SF lost colony of manners, with giant raptors and replicators)
* Nigerians in Space, which was excellent and also not what I thought it would be (in much the same ways as it wasn’t what the characters thought it would be)
* The entire Steerswoman series because I thought there were bits where Ankaret Wells paid homage and then I just wanted it for comfort value. It holds up to re-reading beautifully. If you like adventuring scientist librarian archivists with swords (and satellites)…. read this.
* Burmese Days by George Orwell. You can just keep reading more George Orwell infinitely over your lifespan, and keep concluding about what an asshole he is, but kind of an interesting angsty asshole. But this book is not to be bothered with unless you have just read all of Amitav Ghosh’s books, which I just did a couple of months ago, in which case, go for it
* The Sand and Beacon books by Hugh Howey, which are like the rest of his books,
* Dragon’s Eye by Joel Champetier (translated to English) A good interstellar spy novel.
* The Blue Flower by Penelope Fitzgerald (I read her bio of her uncles and loved it, then was scared to read her fiction in case it didn’t live up; I like Novalis or did when I was like 14; I could imagine so many ways it could be a book I would want to throw across the room — and it is really a great book, don’t be scared!)
I think that reaches back into August. This list is from the list of things read recently that I recommend to people (depending on what they like).
Can’t remember if I already said this several months ago but, just go read all of Cixin Liu’s short fiction that’s translated to English. It doesn’t matter what you like to read — it’s that likeable and cool. Note to self: come up with suggested reading order for his short fiction. Oh, no, I guess I’ll have to read them all again and take notes. Noooooooooooo, help!
Cute photo, not of books, but of some friends at a party this weekend. I went to a party! In the night time! Rare event. pHoto description: some people on a couch making faces and sticking out their tongues. Some details: cute overalls, arm warmers, dyed hair, glasses of wine.
True story from my 5th grade life in Houston, Texas in 1980.
Here is a picture of me at around that time, in my big plastic glasses frame, slightly stringy brown hair, and a tshirt with an iron-on patch that says “Friends Are Forever”.
While the legal and cultural situation for GLBT people has changed somewhat for the better in the U.S. since my coming out experience 35 years ago, I think that we can’t underestimate the damage that hateful bigots still do even with those changes taking place. LGBTQ youth are still at greatly increased risk of being targeted for violence, and at more risk for suicide, than straight kids.
I was pleased recently to see this new of a dude escaping from a bad situation from his family, and that he had good legal support: https://www.pinknews.co.uk/2015/10/06/trans-man-trapped-in-india-by-parents-allowed-to-return-home/.
Anyway, keep speaking up and representing, because this battle isn’t over.
A couple of years ago I wrote a little zine called Heterodoxy to Marie. Not even sure how I got onto the subject, but in looking up Marie Jenney Howe I got pissed off that she didn’t even rate a Wikipedia article but had a paragraph in her husband’s article. She was part of a group of radical women in New York City who called themselves Heterodoxy. I want to touch on that but in order to lead to the Alpha Suffrage Club in Chicago, and another group, the Delta Sigma Theta sorority from Howard, along with Ida B. Wells.
You can download Heterodoxy to Marie here, it’s a fairly small PDF. Print it double sided, & cut and fold, for a tiny 8 page book.
In one sprawling tentacle of my reading I ended up with descriptions of the 1913 Suffrage Parade (or Procession, or March) in Washington, D.C. with Inez Mulholland at the head on a white horse and hundreds of women marching behind in fancy sashes and amazing hats. There were contingents of representatives from many U.S. states. The atmosphere in DC at their near daily protests was brutal. People would crowd around and assault the picketers and marchers. My impression is that there was an attempt to create a spectacle of dignity and legitimacy in this march.
Anyway, part of the story of the march is that Ida B. Wells was there from Chicago, and was told not to march with the delegates from Illinois, but to go to the back of the march. Wells then sprung out from the crowd and joined the Illinois delegation anyway, flanked by two of her (white) comrades. This is the photo that shows up to illustrate the story, showing Wells with a starry sash, turban-like starry hat, and flag and one that says “Illinois” in front of a banner that reads Women’s Party, Cook County.
That story varies from source to source, and even varies when told by the same people at different times. I found it a worthy subject of investigation. One telling is that Alice Paul (or “her organization”) found out about Wells’ participation at the last minute, and that some of the southern state delegates objected, saying they’d pull out from the march if Wells was allowed to appear with the Illinois women. Other stories spin it differently, naming various other women in NAWSA who put the black women at the back of the march flanked by white Quaker men for their protection. There are a lot of small variants, and it would take serious work to straighten them out. That’s why I haven’t written about this yet: I was making a small zine about Wells to follow up on the one about Marie Jenney.
It is in some ways lovely to picture Wells bursting into the Illinois delegates and in other ways so perturbing. She would have had to struggle through an extremely hostile crowd just to get to the edge of the march. At least a hundred women were hospitalized after the DC march. How did she fight her way through that crowd? How would it feel, I have some inklings of how it would feel, to proudly march with her sash on, in her elegant hat, amidst the banners, knowing the extra armor you would have to wear inside your soul. She is a compelling hero.
I think of how bad ass Wells-Barnett was in general. If you have not read her 1895 book The Red Record: Tabulated Statistics and Alleged Causes of Lynching in the United States, you should really give it a try. It’s very grim and horrifying. She also tears into Frances Willard’s racist poisonous remarks on lynching and “dark-faced mobs”… So you can see right in Wells’ work that it’s not like feminist activists in Britain weren’t aware of what was up. You can be all like “oh they were just ‘of their time’…” since we know there were awesome anti racist activists among the super gross white supremacist feminist ones like Willard.
One had better die fighting against injustice than die like a dog or a rat in a trap.” — Ida B. Wells-Barnett
Another dimension to the miniscule zine on Jenney is that I read some of her propaganda, including a play called Telling the Truth at the White House (1917) in which two white suffragists go to jail and then to court. Their adventure with the law is framed by two drunk black women providing comic relief, and then having the vote consdescendingly explained to them. They are presented as incapable of understanding anything about suffrage movement, but agreeing that surely they would trust these nice white ladies to go ahead and vote. This little play is truly, truly vile. And it isn’t alone, if you poke around in the propaganda fiction, plays, and speeches of white suffragists there are many examples where white women point out, mock, and revile the ignorance of black men and women, as a deliberate counterpoint to white women being denied the vote. It was part of many white suffragists’ strategy to appeal to racism. This filled me with cold fury as I thought of the many African American women who were their contemporaries who were fighting for their rights. It is such a blatant disrepect, that they rhetorically make the black women and men disappear from the public debate except as unworthy of participating in political life. If you think to Frederick Douglass’s deep involvement and the entire abolition movement’s years of being intertwined with suffrage movement across the U.S. and England (look it up… I can’t write a dissertation here… ) it is such a cruel and repeated slap in the face by the white women, I can’t even. It’s not even just stupid and ignorant like those tshirts; it looks very deliberate. They are trading on the currency of white supremacy to scrabble for a scrap of power. Like I said, vile.
Have a look at the books “Treasonous Texts” and “On to Victory: Propaganda Plays of the Women Suffrage Movement” for some interesting food for thought.
Back to Wells and the 1913 March and the complicated story. Some stories say Wells fundraised with her black women’s club in Chicago, the Alpha Suffrage Club. Some say that 35 or so members of the Alpha Suffrage Club went to DC and marched. (But where? At the back?) I’ve seen descriptions that say Wells was the only black woman at the march, a lone hero bursting in…. Refusing to stay (or go at all) to the back of the march, supported and protected by white women friends from her home town. Then, I read that the National Association of Colored Women sent several delegations to the march, joining the Delta Sigma Theta sorority. I’ve also seen claims that the Delta Sigma Thetans were the only black women at the march, or that Wells was part of their sorority group. IN short, history is confusing, and people write terrible little summaries of “what happened”. Another tantalizing detail: the staging area for the black women was separate from the main march’s staging area. I can find no description of them marching or their position, and no photos.
If you think of demonstrations or marches you have been part of, try to imagine reconstructing how it was planned, what actually happened, and so on! Very difficult! A big event happens in many dimensions. Alice Paul didn’t “plan” the 1913 march, it was organized by
There is very good stuff in the book “African American Women in the Struggle for the Vote, 1850–1920″. You can get it used online very cheap.
Both the ASC and Delta Sigma Theta are said to be formed just before the march, in order to support sending its members as a group.
I feel sure that there is more info out there about the Alpha Suffrage Club and its members, and their participation in the 1913 march. The ASC held regular meetings in Bridewell Prison and I believe it included some white women, or at least had some local white suffrage activists as allies.
There is more readily available information on the sorority from Howard though. They formed in January 1913, with 22 founding members; going to the march together was their first public act. I enjoyed looking at the photos of the founders. Their names are listed here and there is an awesome photo of them at http://www.sopalmbeachdst.com/spbcac/national-history/
Here are their names: (First Row): Winona Cargile Alexander, Madree Penn White, Wertie Blackwell Weaver, Vashti Turley Murphy, Ethel Cuff Black, Frederica Chase Dodd; (Second Row): Osceola Macarthy Adams, Pauline Oberdorfer Minor, Edna Brown Coleman, Edith Mott Young, Marguerite Young Alexander, Naomi Sewell Richardson, Eliza P. Shippen; (Third Row): Zephyr Chisom Carter, Myra Davis Hemmings, Mamie Reddy Rose, Bertha Pitts Campbell, Florence Letcher Toms, Olive Jones, Jessie McGuire Dent, Jimmie Bugg Middleton, Ethel Carr Watson.
Anyway, I have a point besides throwing a little perspective on some small specific ways the U.S. white women’s suffrage movement expressed white supremacy and racism. That point is that white women suffragists’ oppression by the police and state didn’t stop quite a few of them from being horrible racists. So let’s not forget that.
But my other point is that in the story telling and history making about Wells as hero we should not lose sight of the 22 young women from Howard who also marched, and Mary Church Terrell along with all the women from the National Association of Colored Women and their different delegations, who also marched.
People came from many countries to march in DC for women’s suffrage, and I don’t know the details there but it would be neat to find out more. I don’t like when a complicated story, even of one incident in one day a hundred years ago, is simplified beyond all possibility.
Lots of people coming over lately, which makes me happy! Tea and pastries on the back patio!
I went to an intense and strange poetry reading, or performance thing, at the East Bay Media Center in Berkeley. It was weird enough to have its own name: Iapetus. My friend Steve Arntson organized it, and true to his long-form genius it was set up to give us all a lot of time to explore words and sound. I had the feeling that everyone who came to it was ready for that and willing to hear anyone with the mic do something unusual, take us all on a trip.
Steve opened by reciting a 15 or 20 minute holographic poem on the theme of bones, full of natural history like no other poem about bones you’ve ever heard. He was fantastic. I had to just laugh with pleasure many times throughout. I got up next reading a couple of short things, my translation of Mariblanca Sabás Alomá’s Poema de la mujer aviadora que quiere atravesar el Atlántico, explaining first that I would shout whenever the poet busted into capital letters. It was well received. You can’t read out this poem without giggling and shaking your fist at the sky (if you are me). Then I read a couple of other short-ish things including my poem about Pat Nixon in China, a thing about time and memory and children, and a segment of my poem about Henry Ford (which I can’t seem to finish).
Highlights of the strange hours to follow: the guy on guitar doing quiet tone poems behind us, Dr. Hal in an australian bush hat endlessly reciting Dylan Thomas W.S. Merwin, and one I liked very much called Under the Vulture Tree by David Bottoms. (Even if it does suffer from the “hummmmm” problem at the end.) And a crapload of William Blake. Managing to infuse it with a hint of creepyness. Then Clara Hsu creating a meditative atmosphere with one of those tibetan bronze bowl thingies, singing the Langston Hughes poem about rain, more things about rain, a poem about Cuba, and a Bach prelude of words about being in a city which I wasn’t sure if I would like but in the end, felt like cheering at how she carried it off. A guy named Tom Stolmar rapid fire ranting with a lot of pop culture and a bitter aftertaste. Fragments of my notes: “Welcome to the endless high school reunion” Something something Morocco, almost went to Paul Bowles’ house, nose surgery, imploding tootsie roll Marky Mark toastmaster creamsicle”. I’m sure that was not all in the same poem. It’s a good sign when I laugh during your poem since if I were laughing in the way of hating it I would be more polite. I also now describe this guy as “the guy who says ‘horripilating'”. Mary Marcia who I remember from Waverly Writers at the Quaker Meeting house in Palo Alto got up and read a slow poem about a million kinds of birds then played on a thumb piano and a Harpo Mark horn. There was another point where someone got up and kind of beatboxed their way through Jimi Hendrix’s entire performance of the Star Spangled Banner complete with explosion sound effects which was slightly hard to tolerate but also amazing. Deborah Fruchey read some poems but my note-taking hand fell off by that point. Someone whose name I didn’t catch performed a long and very disturbing piece that was like a conversational fugue about dating and sex and abuse and rape and relationships. I liked it. And finally ToReadah performed a long piece angrily demanding answers from a “churchman” which she said she normally would not feel comfortable reading. I did not know most people at this reading, as I have not been going out in the past few years to any sort of literary events, just not enough time or energy. Maybe it’s time to put my toe back in the water.
It was not your average poetry reading! There will be a video of this event (I heard that when Steve gets back from Burning Man in October we will get a DVD). Why in October? Is he walking back from Nevada? I wouldn’t be surprised.
Meanwhile, in books, I read a great book by Danez Smith, Black Movie.
. . . . . This movie is about a neighborhood of royal folks —
children of slaves & immigrants & addicts & exiles — saving their town
from real-ass dinosaurs. I don’t want some cheesy yet progressive
Hmong sexy hot dude hero with a funny yet strong commanding
black girl buddy-cop film. This is not a vehicle for Will Smith
& Sofia Vergara. I want grandmas on the front porch taking out raptors
with guns they hid in walls & under mattresses. I want those little spitty,
screamy dinosaurs. I want Cicely Tyson to make a speech, maybe two.
I want Viola Davis to save the city in the last scene with a black fist afro pick
through the last dinosaur’s long, cold-blood neck. . . .
Good stuff!!! And an excellent book!
I also read Ho Chi Minh’s Prison Diary translated by Dang The Binh and with a forward by Phan Nhuan. Came across this because it was quoted in Huey P. Newton’s book Revolutionary Suicide. I was most struck by “Reading the ‘Anthology of a Thousand Poets'”, the one Newton quoted, and the poem about a milestone (which made me cry a little). While this is not my favorite translation style (rhyming, formalist), I read a few other translations online and got the flavor of what’s happening enough to enjoy the book very much. But possibly the best thing is that my cheap used copy ordered off Amazon was printed in Hanoi in 1972, with truly beautiful layout and typography and everything about the book design, including the art. (Drawings by Tran Van Can and Nguyen Do Cung. Jacket Design by Nguyen Tho. Printed at Tien Bo Press, Democratic Republic of Vietnam.) It is also inscribed in the front in Vietnamese to Robert Miller, dated 1975, and I can’t read the signature but would guess it may be signed by the translator. Now while Bob Miller is a common name I can’t think who would be in Hanoi in 1975 other than Robert L. Miller, illustrious author of “Encyclopedia of Cold War Espionage” and “Indochina and Vietnam: The Thirty-Five Year War”. Bob, I have your Ho Chi Minh book! Why’d you let it go?! And can you tell us the story of how you got it?
This week I read Elaine Brown’s autobiography, A Taste of Power: A Black Woman’s Story. What an excellent read! It is very dramatic and full of situations that had me screaming with surprise or outrage or sadness, and sometimes with celebration of Brown’s fierceness or laughing with affection for her when she would start describing some guy’s cheekbones and you know she was about to fall into bed with him. A book that led me to look up many events and many different people and to line up more reading. I have so many questions! I’m not going to summarize the events though. I am in the middle of Revolutionary Suicide by Huey P. Newton now, enjoying it more than I thought I would based on how mad I got at him from Elaine Brown’s book. Also I have lined up Liberation, Imagination, and the Black Panther Party: A New Look at the Panthers and Their Legacy edited by Kathleen Cleaver and George Katsiaficas as well as Soledad Brother: The Prison Letters of George Jackson.
One thing that struck me was the moment when Brown describes her anger at Gwen Fontaine (who has just gotten married to Newton while they were in Cuba) and then how she sees Gwen suddenly as a sister, resolving to respect her mind and work. I noticed this alongside how she describes Kathleen Cleaver — never getting to that point of respecting anything about her but seeing her in that same way she saw Gwen, as a patsy or a sucker following her man and taking abuse unquestioningly. I had to roll my eyes since Brown also is in love with various men in the Party and takes abuse from them too. It just shouldn’t delegitimize any of the women’s work or their politics that they are in a relationship with … anyone. But I also got very curious about Kathleen Cleaver (because Brown disses her so badly – mostly by passing over her). Naturally as soon as I looked it was clear that Cleaver was super legit, was intensely politically active and known as an effective writer and great speaker. As Brown describes her she was just hanging out looking pretty, getting pregnant and smacked around by Eldridge. More than anything else this undermined my desire to trust Brown even halfway.
Now let’s not even go into the level of what the fuck, as Bobby Seale orders her to get actually whipped on her back in a basement of the party headquarters for not putting more of his articles into the newspaper. Seriously what the fuck, all around.
Another thing that left me with a million questions was the book’s ending. What about those other women from the Central Committee? What happened next? After they broke Regina Davis’ jaw in the name of party discipline. It is very ominous. When I look them up (only casually so far) they’re mostly mentioned in paraphrases from this very book. I want to know more about their work together.
And then even more questions about Elaine Brown’s amazing strategic politics in Oakland and plans with the mayor, governor (Jerry Brown) and others and her thoughts on what could happen if she and the Party controlled 10,000 jobs in downtown Oakland. And then the Port of Oakland itself and then having some momentum to get Jerry Brown the Democratic presidental nomination. Super fascinating! What if that had happened? An excellent alternate history to write. I can’t help but admire her grab for political power. Maybe her socialist approach to distributing those jobs would have worked a little better than whatever else was going on.
It took me a bit of background reading to wrap my mind around the split in the Black Panther Party(s) Between Huey P. Newton and Elaine Brown and their faction vs. Eldridge and Kathleen Cleaver. OK so in a nutshell, Newton and Brown don’t like the “revolution right now” style talk of the Cleaver faction or at least of Eldridge himself. The Cleaver bunch were super pissed off that the Oakland BPP had turned reformist. Well, meanwhile Brown along with the women (and men) she appointed to powerful postions were gathering people and power, then Newton rolled back into town and fucked everything up with his macho trip and drug addiction. (& his support for patriarchal power in general despite what he writes… which I want to believe as I read it even now…) Brown accuses Newton of destroying the organization and trust that she built.
And, according to at least the beginning of Kathleen Cleaver’s book, the BPP basically ended in 71 before Brown even was leading. Now that’s a dismissal right back…. how harsh!
Everybody is complicated!
Anyway, Elaine Brown wrote a great book very useful for getting into the mind set of people forming and coming into the BPP but is somewhat unreliable as a narrator and since so many others involved wrote about it all, it’s good to read them too.
The bits of Cleaver’s work that I’ve read so far, she speaks to me pretty strongly,
In fact, according to a survey Bobby Seale did in 1969, two-thirds of the members of the Black Panther Party were women. I am sure you are wondering, why isn’t this the image that you have of the Black Panther Party? Well, ask yourself, where did the image of the Black Panthers that you have in your head come from? Did you read those articles planted by the FBI in the newspaper? Did you listen to the newscasters who announced what they decided was significant, usually, how many Panthers got arrested or killed? How many photographs of women Panthers have you seen? Think about this: how many newspaper photographers were women? How many newspaper editors were women? How many newscasters were women? How many television producers were women? How many magazine, book, newspaper publishers? Who was making the decisions about what information gets circulated, and when that decision gets made, who do you think they decide to present? Is it possible, and this is just a question, is it possible that the reality of what was actually going on day to day in the Black Panther Party was far less newsworthy, and provided no justification for the campaign of destruction that the intelligence agencies and the police were waging against us? Could it be that the images and stories of the Black Panthers that you’ve seen and heard were geared to something other than conveying what was actually going on?
Yes!!! That’s true of just about everything. You look beyond the surface and there are women doing the work (too) and the processes of history formation start to leave them out until there’s just a couple left and then maybe just one —
Meanwhile, thinking of this from an epigraph in Newton’s book —
Ho Chi Minh’s “Wordplay”:
A man, once freed from jail, will build his country.
Misfortune is the test of loyalty.
He earns great merit who feels great concern.
Unlock the cage – the true dragon will fly.
or translated another way,
People who come out of prison can build up a country.
Misfortune is a test of people’s fidelity.
Those who protest at injustice are people of true merit.
When the prison doors are opened, the real dragon will fly out.
Good to have a little grounding as #BlackLivesMatter protests continue and deepen. People try to watch the cops with cameras and report on them more closely, rejecting the bullet for the …. camera and I guess, the ballot. I don’t have any faith in either bullet or ballot. Our images and words will move people or at least speak to the future. This isn’t anyone’s first go-round and it won’t be the last and when it heats up the backlash is horrible. Though the horror is already unspeakable with our daily acceptance of our lives within the prison industrial complex — vile complicity.
I’m in Akumal (again) and it’s amazing! Last night the kids and I were lying in shallow water looking up at the Milky Way! I saw Cygnus and a shooting star (Thanks Perseids! Perfect timing!). I can scooter down a short walkway and then walk onto the narrow beach. Perfect for me and very easy for me to get to the water.
There are sea kayaks here! I took one out experimentally. Maybe I can go further as I get stronger and rest more. The kids went snorkelling a little with another family who have younger children.
I have seen some yellow finch-like birds, a ton of grackles, constant Magnificent Frigatebirds overhead, and a woodpecker of some sort. Spending a lot of time in lounge chairs with my binoculars.
The first week of July I got shingles. It was pretty intense the first two weeks. I barely remember it. My mom came to visit and cooked us amazing food. I had a house call doctor from ERDirect.com. I recommend this if you suddenly fall ill on a holiday weekend. This guy came out within an hour, prescribed me antivirals and steroids, and saved me hours of pain that I would otherwise have had to spend in the ER. The shingles covered most of the left side of my torso (in multiple dermatomes). It was difficult to have any clothing or anything touch that part of my body for the first couple of weeks. Lots of vicodin. I was off work for 3 weeks.
I had that bus hearing in the middle (in week 3). That was kind of wild. I was barely coherent (for me). Did it, somehow! My sister and my son came with me and there were a lot of TV people from local channels.
The things that ended up helping the most were high doses of gabapentin, and ice packs. I feel like the prednisone was also kind of good. At least, it helped me walk better (my knees and ankles were in less pain than usual.) The gabapentin was scary though, in that it made me dizzy and unsteady feeling. It also made my vision blur. I had to increase the font on the computer about 3 or 4 times to see words clearly. But, it still worked better for the shingles pain. It didn’t get me to “pain free” by any means but to a tolerable situation. I also recommend listening to music if you ever end up in severe pain. Albums that kind of hang together, old school style hip hop where you have to carefully listen to get all the words and there is plenty to think about, jazz, opera, and some classical music (baroque – Bach!!) were best. I must have listened to the Mingus “Ah-Um” album at least 3 times a day for a while.
One thing that was unexpectedly difficult was going in a car. I went in taxis or got rides and I could hardly bear to lean back into the seat of the car. I had to hold the seat belt off myself. No way could it touch my body. Horrors.
I also got pain down my left arm (which didn’t have the rash) and in the area on my front and back below the rash but above my hip. It was scary to have my arm affected. It is getting much better. Now down to a low “buzz” feeling.
It was a relief that people seemed to understand the severe pain level, and that life was more difficult for me because I already have pain and some impairments. My son got a sudden crash course that I am calling “Chore Camp” in weeks 2 and 3 of this ordeal.
I recommend you not get shingles, ever.
Luckily I felt pretty decent by last week. I dealt with a sudden intense 2 days of work working 14 hours last Thursday and doing a pretty good job. Not perfect but decent. I did normal things like go out to get groceries. This is so comforting after being ill. The plane ride was OK. Danny got a seat upgrade (he travels a lot and so gets all sorts of perks) and gave me his seat in first class while he sat with the kids in the back of the plane. I didn’t need any painkillers until we were off the plane. Then I kind of gave in and had half a vicodin.
Painkiller free today, still tapering down gabapentin. I am down to 900 mg total per day. Things are so much better. Soon I’ll be completely off of this drug.
My arm is better enough that I kayaked for maybe 10 minutes. Halfway to the reef. I have also walked around a fair bit and have gone “out” to the little mini mart.
Beach paradise, nice breeze, birds flying around, lizards and hermit crabs crawling over everything, hibiscuses and coconut trees, and the sound of the gentle waves in this protected bay!
I’m hoping to swim short distances several times a day, and also kayak!
And I am hoping to find someone willing to be my tutor in (Yucatec) Mayan. I have made a list of words and phrases, and some flash cards. I have also read a fair amount of local history at this point. Very interesting.
Last visit, we were only in Akumal for two and a half days. I explored around the point where the cannons are, and looked longingly at the tide pools (not walking well enough to go to them), found the Lol-Ha restaurant (fabulous) and visited the minimart (Super Chomak) about twice a day. This visit I’d like to explore further — but may instead focus on swimming and resting while the kids explore independently.
There is more seaweed on the beach this visit and the “visibility” under water near the shore is bad, which many people on the beach complain about! I have a scheme to practice getting into the kayak from the water. Not sure that is possible for me. But if it is then I will kayak out to near the reef and then jump in to snorkel! I can kayak a hundred times better than I can walk. Like a sturdy voyageur! But I will need to work up to it.
A bad incident on the bus in June led me to file a formal complaint. I described the incident as it unfolded on Twitter, and then gathered the tweets about it here on Storify: Screaming wheelchair-hating SF MUNI bus driver. I routinely go through moments where bus drivers resist the idea of letting me on the bus, or just pass me up, or act a little rude or horrible. In those cases, I have sometimes filed a complaint, and sometimes not, and let it go at that. Life isn’t perfect, neither are people, and I don’t expect my encounters with everyone to be ideal. But this was over the top. Here is an example of how to file a complaint about San Francisco bus service. My goal in explaining this at length, and in filing a bus complaint in the first place, is to improve bus and public transit service for disabled people in the SF Bay Area.
First of all, I twittered the incident as it happened. This gave me a written, public record of my memory of the incident, while it was fresh in my mind. It gives me the date and time stamps of when I got on and off the bus, as well. Afterwards I collected the tweets on Storify because I wanted to be able to refer to them later. For a person without a smart phone this could be done with pen and paper.
Second, I noted the time, bus number, and driver’s badge number. Noted on paper, as I carry a small notebook and a pen in my vest pocket from long habit.
Third, I quickly filed a complaint through the SFMTA feedback form on the web. You can also do this by calling 311. You have to choose a complaint category. The categories are a bit confusing. I believe I filed this as “Discourteous Driver”. I asked for an in-person hearing, and checked the box that said it is an ADA complaint. I got an email response within a few days from SFMTA, saying that they got my complaint and assigning it a reference number. (There may have also been a snail mail letter.) I then got a email asking me to call a local number to schedule the in-person hearing.
Fourth, I emailed the local Independent Living Center, the ILRCSF and asked to talk with their lawyer, thinking maybe they could explain what happens at, and after, these hearings. The center staff were very helpful and nice, and met with me to chat about the incident. It is possible to ask their lawyer to go with you to this kind of hearing.
Fifth, I called to schedule the hearing with SFMTA. As the hearing date approached, I had to reschedule it because of illness. You are only allowed to reschedule once. I have to mention the person I talked to on the phone was super nice and helpful. I got letters from her almost immediately, confirming the hearing time and date, with clear instructions how to get to the hearing location. That email’s contents were in a Word document so likely the staff has a template for responding.
Sixth, I looked at the Americans with Disabilities Act, wondering if I should file a complaint through ada.gov. My conclusion was: No. That is more for a group complaint about systemic and sustained discrimination, that a local government doesn’t respond to. What I’m describing here is one specific incident. If there were such a complaint it would be under Title II of the ADA. Anyway, I am a busy person and this is already taken up far too much of my time and energy.
Seventh, I filed a Freedom of Information Act (FOIA) request for the video and audio from the bus’s built in surveillance system, since the bus videos are public record. On the web, I found clear instructions on how to file a FOIA request to the SFMTA. I used this template example of a FOIA request in California for my letter. I was able to file this request by email, and regular mail was an option too. I got a response very quickly, I think the same day, by email. Just yesterday, I got two DVDs with video and audio clips. They played on a Windows machine, with the viewing software built into the DVD, showing 8 or 9 different camera angles in different parts of the bus, with one audio track.
Here’s the video. It’s a little over 4 minutes long, and includes 3 segments edited together. When I switched to footage from a different bus camera, I backed up the video a little bit, so some segments repeat for a few seconds from the different angle, for continuity. (edited to add, I realized last night that the 3rd segment was missing, so I added it as a separate video below)
First the driver refuses to let me on. He then pulls the bus up to me, and we argue further. His arguments included, that he isn’t allowed to let people on except exactly at the stop; that he has inspectors watching him; then, that there isn’t room. He then lets the ramp down. I get on, he yells some more, then he gets up again to tell me I can’t sit in the bus seat but must sit in my scooter. I refuse. The bus then moves on and the video jumps to when I get off the bus, the last person to get off near the end of the line downtown. I ask the driver for his badge number, he gives it, then he yells at me some more.
The complaint hearing is this Tuesday.
Interesting information from the hearing confirmation:
Hearings last approximately 30 minutes and include a professional neutral hearing officer, the transit operator, and customer. After the hearing officer reads the complaint, the customer and the operator (or his/her union representative) are offered opportunities to comment and ask follow-up questions. Afterward, the hearing officer evaluates the evidence, and a written decision is forwarded to the customer within seven days.
Please note that your attendance at the hearing is required in order for the hearing officer to make a decision regarding your complaint. Please bring photo identification (such as a Driver’s License, State ID, or Passport) so we may confirm your identity.
I wonder how many policies or public transit operator the driver broke in this incident. From watching the video, here are some possibilities:
1. The driver does not pull up to let me board. I was clearly indicating I wanted to get on the bus. In the best practices I’m familiar with, bus drivers pull up just beyond a bus shelter, to let a wheelchair or walker user board, asking other people to board at the back of the bus. This is efficient and fast.
You can see in this photo still from the video, from 8:28:11am, that there was room for a person in a wheelchair to board and ride the bus. There are empty seats. No one is standing in the front section of the bus. It is very clear.
2. The driver refuses to pull up to let me on.
3. I ask him again to let me on the bus. He refuses and tells me to catch the next bus, several times.
4. The bus driver then moves the bus up about 10 feet, stops, and gets out of the bus, to stand over me and yell at me. Surely this is not supposed to happen at all.
5. He tells me that there inspectors watching. It’s unclear whether that’s his excuse not to let me on, or whether he’s using them as a kind of threat. He tells me he’s going to get them to deal with me.
6. The driver then tells me the bus is too crowded. It isn’t. Also, as time went by during our argument, more people boarded.
7. The driver then tells me that I should not be demanding to get on the bus.
He continues yelling as I board.
8. After I was seated, the driver got up to stand over me and yell some more. He claims that I have to sit on my scooter and can’t sit in a bus seat. This is not true.
9. The driver then complains to another passenger that my wheelchair is blocking other people. It was not.
Here is a photo of my scooter on a bus in exactly the configuration I had it on the #14 on June 2.
10. As I exit the bus, the driver insults me by saying that disabled people complain all the time and “that’s how y’all live”. and calls my wheelchair a stroller.
11. The driver tells me “be there tomorrow” meaning, I think, be at the stop on his line and see what he will do. I assumed that meant he will not let me on the bus next time or will be hostile in some other way.
So much to unpack.
It is a little sad that no one else on the bus said or did anything to help me. I can understand that they may not have been paying attention until things went badly. By that time, who knew what was going on, and who was at fault. And getting involved might make things worse or mean more delay. Everyone wanted to just move on! However, I would have spoken up as a passenger to say that the driver should have let me on the bus and that it wasn’t right to yell in my face the way he did. I encourage anyone reading to think it over and do what is right.
Sometimes, it is other passengers who start to yell at me out of their perception that I am a parasite on society, that I shouldn’t be allowed on the bus, or out in public, and so on. This happens once in a while, and I will explain to any such person at length about the law, the 504 sit ins, how people blocked the buses in Denver, and any other piece of defense of myself and all of us that I can think of. It is certainly upsetting and enraging. I try to keep my cool.
During this incident, I did not outright lose my temper, swear, or anything like that. I stated my rights and told the driver there was room on the bus and room to put the lift down. Repeatedly. Frankly I was mad as a hornet that this driver was probably going to pass me up for no reason. And likely as not, so would the next one. My power is not in my body. It is in my mind and voice. You can see that from how I never shut up and kept telling the driver to let me on.
The time I found the most upsetting was when I was on the lift, and the driver got up to stand over me, yelling that I should stop talking. I stopped talking. I finally felt intimidated. I wanted to get to work. I wanted the confrontation to end. Fine. I was on the bus. I did not feel good about shutting up when told to. However, it seemed practical. So it was shocking that the driver then came again to yell at me and stand over me. It seemed best not to argue, but to passively resist. I decided I would not get off that bus till I was at my stop and if he called the police to throw me off, he would be very much in the wrong. Luckily, that did not happen. The driver finally realized he should leave me be, and move on and do his job.
My memory and the tweets mostly match up with the video. I don’t hear the part I remember where I said, it is the law you have to let me on. I think it’s in an inaudible part, but I know I said it. That’s what the driver responded to when he says “That’s a rule, too”. I did not remember that he got out of the bus to stand over me on the sidewalk and yell. Wild. I still don’t. But there it is in the video. Also, I described the driver as “screaming”. After seeing the video I would not say that. I’d call it “yelling” instead. We both had to yell to be heard. As I exited I thought that he had said something like, “Be here tomorrow and see what happens.” But in the video it’s clear he said “Be here tomorrow… ” twice, and then closed the bus door. So I was extrapolating the end of the sentence, but that’s not actually what he said. Otherwise my memory is pretty accurate.
So, I did eventually get on the bus, got off the bus at my stop, and got to work on time for my meeting with my boss. Great. But….
I believe that the driver was discriminating against me because of my disability.
I don’t look forward to confronting this man in a hearing at his workplace. I also don’t like the idea I will be riding a bus with him any time in the future, but that seems likely to happen. Hopefully if it does, we will not need to interact beyond the minimum of politeness.
Bus drivers work hard and have to put up with a lot of bad behavior from the public. Clearly the 14 (and 49!) are no picnic to drive. I can see that I was annoying to the driver with my persistence and my insisting that he let me on the bus. However, he should have let me on in the first place. I would have paid my fare and thanked him, asked for my stop, and we both would have had a fine day. For the middle of the ride, I observed the driver be friendly and polite, chatting with all the other riders as if trying to prove to himself that he was a nice person. Or, perhaps to show to the other riders that he was “the good one” and that my behavior was bad, in other words, to try and show me up. Maybe both at once. The point is, I could see he knows how to do his job well.
My expectations from this complaint are that SFMTA will take the complaint seriously. I hope they will appropriately train the driver to interact with wheelchair users and how to let them onto the bus in a normal and efficient way. I believe they should also look at their training process since it is not uncommon for me that drivers refuse to let me on the bus, or simply pass me up without stopping. Passing me and other wheelchair users up is particularly a problem on the MUNI train level boarding stops above ground. Drivers are also often hostile and rude.
The drivers who are nice, or simply businesslike, I very much appreciate.
I like to get around town, by myself or with my friends or my kids, without being yelled at and humiliated in public.
Feel free to tell stories about accessibility and bus drivers in the comments, if you like.
Yesterday I found out that UberAssist was available in San Francisco. Since both my manual wheelchair (a Quickie Ti rigid frame) and my mobility scooter (a TravelScoot Jr.) can fold and fit easily into the trunk of any car, I have used Uber and other taxi-esque programes since they were first available to me. I understand UberAssist as follows:
* Drivers can opt in to take a training class (online) and a test in how to assist disabled and elderly passengers in a polite and helpful way.
* The training was developed by some outside consultant.
* The training is free for drivers.
* UberAssist rides cost the same for passengers as UberX rides, and the drivers get the same payment rate.
While I may use this service, I am dismayed and worried. This is simply the behavior which all Uber, Lyft, and taxi drivers should follow: being polite and helpful to their customers, and not discriminating or behaving in a rude or bigoted way.
Are “regular” Uber drivers going to now refuse to pick me and my wheelchair up, and tell me to instead call UberAssist? That seems a likely outcome. When that happens, I will complain to the fullest possible extent not just against the individual driver but against the company, which should, and obviously can, require all its drivers to pass anti-discrimination training.
To top this BS off, Uber is offering the inspiration porn-like option for riders to be charged a higher fee for their ride, out of which a dollar will be donated to the Special Olympics, a button labelled “INSPIRE”. Yes… Inspire. Soooo, which disabled taxi users did they ask what they thought of that name and that option? This is Uber’s response to facing a $7.3 Million fine in California? Or the ADA lawsuits gearing up?
So, meanwhile, I needed to get downtown to the Independent Living Resource Center and I was feeling too exhausted and in pain to take the bus for 40 minutes plus. I tried the UberAssist option. Enough drivers must have taken the training and signed up for the program in San Francisco to give a reasonable density of drivers. Response time to get to my house was 3 minutes for UberX, and 17 minutes for UberAssist. Not great but not unworkable for me. The driver who responded explained to me that I was his 2nd Assist rider, and he signed up for the program because he loves helping people. I told him that I also love helping people. (It did not seem to be part of his thinking that a disabled person might help people.) We conversed pleasantly. I think he was a bit disappointed he did not get to Help me a bit more. He also complimented me on my “positive approach towards life”. Fellow crips will know how “happy” that made me. However, I can fake it to be polite.
On my way back, I had a super helpful and nice driver who said we were her first Assist customers. I appreciated her helping me and my son load my folding scooter into her car trunk. It felt like a normal human interaction. It was not really any different from most other times I have taken cabs. Most drivers get out and offer help. If they don’t, I can usually lift the 30 lb scooter into a trunk on my own. If I can’t do it on my own I most likely have planned to have someone with me….
Also feel I should mention, I don’t always take extra time to get into a cab. Sometimes I’m a bit clumsy or unprepared or I ask for help. It is a matter of an extra minute or maybe two. Not any more than someone with a suitcase would need.
For an example of how some drivers think about disabled and elderly people (bigotedly), have a look at this discussion forum for drivers. It was so horrible that I could not get completely through the multi-page thread. These drivers seem convinced they can and should refuse wheelchair using and elderly passengers, and, that if they don’t, Uber should pay them more for driving them. This is just heinous.
And yet, over the years I have only had one driver behave badly (very badly) to me and one driver cancel after I mentioned my folding wheelchair in a text.
Will I really wait 10 or 15 extra minutes for a cab routinely, for the sake of possibly increasing my chance of being treated with normal consideration?
We’ll see if UberAssist backfires or not. Maybe it will become routine for more drivers to take the training.
And maybe, able bodied and non-elderly people will use it. That might have an interesting effect on the outcome and politics of this social experiment.
“As you may know, Uber now has 18,000 vehicles in New York City — but not one wheelchair-accessible vehicle. We’re throwing up a protest line — we call it a roll-in — at the Uber offices on 26th Street next week on THURSDAY, JULY 30 at NOON. If you’re around, it’d be great if you could be there. Can you come by? Can you bring anyone? Thanks.”
None of this takes away from the important fact that we should be fighting to make buses better for everyone, and for taxi drivers of all stripes to have better employment rights and protection.
I miss “real blogging” and was thinking that one reason I have been having blog-like posts and conversations on Facebook rather than here is that this blog feels more “formal”. I intended that from the beginning, but what if I were to be a bit more quick and casual in how I post here? It won’t feel like a conversation since comments are rare and our methods to find and consume people’s unmediated or unedited public writing have shifted to happen via tumblr/facebook/twitter/medium. I also use Dreamwidth for informal posting.
Here is a commitment to continue the pleasant ramble of my long posts on a platform which I sort of control (though not with the ideological purity of running my own server under my desk or whatever, since I use a hosting service).
Is this now an actual move of resistance?
I have a feeling the conversations will happen on FB and Twitter. The FB conversations especially will be lost in the mists of time and proprietary control and unsearchability and crap API. Alas. The Twitter stuff is at least reachable and searchable and I believe it has more chance to be archived for the future.
This, also, because I am increasingly annoyed at which people and posts Facebook shows me and doesn’t show me, even on the “See all” setting.
I came down with shingles a week and a half ago. It’s in a stripe around the left side of my torso. It’s been a weird adventure. The skin where the rash is burns and has allodynia (sensitivity to touching anything, and even to air). The muscles ache and spasm and are weak. It is physically intense. I am dizzy and groggy from the nerve pain medication, and feel strange from the burst of prednisone. It is quite odd to have pain and dysfunction in a new spot on my body. I got antivirals very very quickly using a local doctor housecall service.
I am already disabled and deal with chronic pain; there are good and bad sides to that. The good side is that I have many coping strategies to deal with pain and impairment, practical skills and emotional skills. The bad side is I am often right on the edge of overloaded, and this pushed me over it. The other thing is that I have to remember firmly this is 95% likely to be temporary. It isn’t something I have to adapt to forever and learn how to live with. I just have to rest and get better! This book, The Pain Survival Guide, is very helpful and pragmatic.
I will lie here like a sort of cosily beached flannel coated manatee, gently hallucinating in and out of dreams. Clothes and blankets hurt. I have a large silk scarf toga, a light gauze sundress, and a flannel tank top that work ok as clothing. Any motion hurts, and any weight or something touching my left side hurts extra. It is hard to use the computer, or to sit upright for long. I can balance the laptop on blankets and pillows across my hips while lying down. But the phone is easier. I have laid here swiping through twitter and now Facebook (which I’ve never had on my phone before this), and idly reading news and the few blogs still active in my RSS feeds. I very much miss the feeling of blogging being outside of particular platforms! It is so good to see friends and chat with them and be distracted by the Internet and by books.
Books: the Bloody Jacky series (trashy fun, with Napoleonic era naval adventures and girls’ boarding school, combined!), and lined up for when I feel a bit better, Shadowshaper by Daniel José Older, and Marguerite Reed’s Archangel.
One thing that comforts me a lot in this state is to have a nicely arranged bedside table. It gives me a feeling of control over my environment. It is pretty to look at, satisfying somehow, and I can get many things I need without asking for help or getting up. I have flowers on it, my touch lamp torchiere (pointing up) which i really love being able to adjust to 3 levels of light, shea butter, coffee/tea mug, a giant chunk of green glass, my crystal cube holographic print of the entire universe, and my wooden letter rack that holdes all my devices sideways for recharging. It holds my 11 inch Macbook Air, a kindle, an external hard drive, my phone, and an external battery and sometimes also Danny’s mini iPad. That’s a lot of devices in a very neat, compact space!
Two big power strips are hung on the side of the nightstand. Over the power strips in the space between the bed and the nightstand, I now have a thing I bought off Amazon, called an “Urban Shelf”, an idea for a thing covering this space which I have tried to construct from junk several times and failed to implement. the Urban Shelf works very decently. Its slots for power cords have been helpful and now my million tangly cords are less in the way. Right now the urban shelf holds a kleenex box but it has also been good for my entire laptop, plates, etc.
I like being able to look over at the nicely arranged nightstand at the flowers and polished wooden surface. I polish it with lotion or oil. I like to turn on the lamp which glows gently through its own glass, the red glass of my bud vase and the green and universe glass. Past the flowers on the side of the narrow bookshelf I can see my little trading card that has Oracle on it at her computer. Secretly corny shrine to Oracle….. Maybe I will get an Instapainting oil on canvas version of Oracle surrounded by screens in her wheelchair. I find it so heartening – I can’t experess how it chirks me up to connect anything about my situation with a badass superhero mastermind.
Here is my amazing instapainting of a scene from Journey to Babel that Danny got me for my birthday last month! I like to think it stands for my love of translation (and science fiction). Maybe I’ll move it from the living room to the bedroom, so I can gaze upon it from bed and laugh.
Inside the nightstand drawer I have many conveniences like earplugs, nail clippers, lidocaine cream and other lotions, usb sticks, clips, headphones, lip balm, bookmarks, hair ties, toothpicks, some medicine, pens, scissors, asthma inhaler. I would be so lost without this magic drawer full of junk! The cubby below the drawer in theory should have a selection of good books but right now it needs to be cleaned out since it’s so stuffed full of books you can’t really get use out of it.
Maybe if I have a limber and non dizzy moment I’ll clean out that cubby and stock it with only a few books good for bedside comfort, a drawing pad, crossword puzzle book, and maybe a couple of “to read” books lined up (instead of an enormous jumble).
Of other things to appreciate about my situation, once again the steroid burst means that I have almost ZERO allergies. This never happens except while traveling to new places or when I’m on steroids and for a few weeks after the steroid burst. It’s a small luxury to have my sinuses feel so light and not swollen and to not have to blow my nose all the time. Yesterday I sat on the front porch and pinched leaves off several potted plants (could only use my right hand, ugh) and did not get a giant sneeze attack or have to take actifed or benadryl.
It it comforting that I can get anything or help with nearly anything at whim from Instacart, Amazon, or Taskrabbit. (And I have been doing that.) Money and these sorts of services replace what otherwise would be me asking for a lot of help from family and friends and community and really, public services. (Which I am also getting at least the family/friends, but it’s lovely to have the money to just hire people, somehow). If I want flowers, or chocolate, or food, or someone to fix the dripping sink or whatever, I have only to fill out some forms and stick in my credit card. It is a great luxury. (That most disabled people do not have.)
It’s sketchy to react by always playing the “glad game” like Pollyanna or being a patient cheerful invalid like Katy in What Katy Did, but it also helps. Like, every time I get up to get myself some tea, I think how much I appreciate being able to do that and I take pleasure (and pride to some extent) in all of it, in the entire process of simply getting myself some tea. Walking across the house, maybe I can look outside on the front porch for a moment and have a look at the world. Whatever level of ability or function I’m at there is something to appreciate. This sounds a bit nauseating I know. But it is sincere.
I miss work a lot. For a few days earlier in the week I was reading and responding to urgent work email. Right now I feel too drugged, stunned and distracted by pain, and messed up in general. I am exhausted. If I can adapt to the drugs over the next few days maybe I can start working. But it seems more likely (depressingly) that I need more time out.
Some other coping strategies: Doing very short sets of easy physical therapy exercises, then setting a 5 minute alarm on my phone for a “power nap” where I close my eyes and breathe deeply. If that leads to a real nap, great. If not, I have rested and put down my books and phone or computer.
I have not found a good video game for distraction. I need something turn based or not-twitchy, and not stupid or full of ads. May play through Monument Valley for the 3rd time. I was going to try the new Master of Orion (since I remember loving the original one), and it looks nifty, but it was so much like actual work and has so much “executive function” that I lack right now, that I am not doing it. I still play Threes. (top score in the low 30K range) Nethack is nice but it’s too hard to hold up the computer. I play clash of clans (with my family in a clan) and dominations but am a little bored with both. I can recharge things for Ingress from bed, but am running out of power cubes. Not so fun when I can’t get out.
One bad thing which I will complain about, besides the skin pain and “shocks” and burning and allodynia, is that my left side feels wrong and strange. The muscles don’t work right along with the deep ache, and they spasm. I think that is maybe straining my other back muscles on that side. Sitting upright and walking and bending over feels hard and wrong. What if it stays that way…. If it does I will adapt. My ribs hurt and my guts in that stripe on the left around front and back, feel all wrong. It feels hard to use my left arm to reach or do anything since it uses some of those side muscles, I guess. Especially reaching upward or outward. The muscles in my low back just underneath the “stripe” are very sore and messed up. It is probably temporary as part of the shingles inflammation or infection of the nerve.
From looking at charts I think it may be T8 or T9. Hard to tell… Just below or at the edge of my ribs. To me, it seems wider than just one stripe, because it goes from my lower rib to my navel. Maybe it’s T9. Interesting to look at the nerve/dermatome charts, anyway!
I hope to be able to leave the house and go to my sister’s house this Sunday. If I can make it into a cab and up her stairs, I can lie on a splendid couch and Danny and I can see my son, my sister and my mom and nephew and brother in law and 3 cats and 9 chickens and Laura’s beautiful chaotic experimental garden. It’s Danny’s birthday today and my sister’s birthday tomorrow so I expect someone will be making cake and probably knowing my sister and brother in law, some sort of special fancy amazing hipster cake.