thinkingofmikey

[thinkingofmikey]

That rotten feeling thing is shame and you can get rid of it.

There is nothing rotten about you, but people made you feel that way.

you ever feel like you were born with something rotten inside you and if people get close enough they’re gonna find out

[thinkingofmikey]

the unholy trinity of piss-poor caretakers, tag yourself:

tomboy, meaning "this child is clearly queer but let's hope it goes away"

sensitive, meaning "clearly neurodivergent and often distressed but let's keep going until they grow numb"

mature, meaning "traumatized but let's ignore that"

[thinkingofmikey]

Unless you've lived through losing someone close to you, then it's something you've said with your own broken heart over and over and over.

I've never heard that line before, but I've definitely said it.

“Sometimes somebody dies, and you suddenly realize they were the only person on earth you wanted to talk to about it” is such a devastating line and I cannot believe it’s from an internet improv comedy sketch about local theater troupes.

[thinkingofmikey]

"Rage is a violence that replaces intimacy with fear"

Fuuuuuuuuck

"I’ll learn to hold your fears, but you need to learn to tolerate my anger. No, Real says. Anger blocks everything else and has to leave the stage first."

https://www.nytimes.com/2025/02/04/magazine/therapy-marriage-couples-counseling.html

[thinkingofmikey]

This comports exactly with my experiences of fisting someone, particularly at a party.

[“Times may change, but the mechanics of a great fisting party stay the same. There’s something about the extreme sports element of fisting, the physical technique combined with athletic spectacle, that makes it perfect for showing off.

I can remember house parties in Oakland where I would walk past a bedroom only to be beckoned in by a casual acquaintance: Hey, she’s really open, do you wanna hold hands with me inside of her? And I would, of course, wrapping my fingers around a stranger’s fingers inside another stranger on a mattress on the floor, electroclash blaring tinnily from a burned CD, churning like the splattered cream in the 1977 Robert Mapplethorpe piece appropriately titled Double Fist Fuck.

Come with me as we venture into another room at this house party. I crouch over you, on my knees, my left hand holding me up. My right hand is a queer icon, a position on a hundred screenprinted T-shirts. The pads of my fingers pressed together, my nails short and filed. My elbow is hydraulic, my wrist dexterous, my knuckles flexing. You love being just a hole. You love for me to stake my claim in you.

I’m searching for something specific, something a breath orgasm teacher of mine named Barbara Carrellas calls the “Resilient Edge of Resistance,” a term she got from her teaching partner, Chester Mainard. She defines it as the sensation of being “awake and aware, but completely peaceful and relaxed. You want it to go on forever.”

I press you, searching for the place where you press back onto me, and I tenderize you like meat as I go. You are impaled on me, and every movement I make feels a thousand times larger than reality. I twist my knuckles. I pulse. I tug. I undulate. I open my hand and press my fingers together. I play you like music. You yank on me, and I let you take me with you. Bear down on me and melt away.

I’ve been fucked in my holes ever since I started having sex with other people. And realizing my potential to fist others is the thing I now know was missing where that kind of default sex was concerned. I love to top, to be in the driver’s seat, to be the emcee of the show. I crave giving people what I love to get. You don’t have to be at a fisting party to fist, but somehow, the act feels inherently exhibitionist even at its most intimate. It’s not just about me and you, or about the people voyeuring around us. In moments like these, I feel connected to the players at the Catacombs, their party technology and what my activist friend Blunt calls the technology of community. Queer pleasure makes space for everyone to fuck underground and outside the box.”]

tina horn, from why are people into that? a cultural investigation of kink, 2024

[thinkingofmikey]

"There's no hope for the future." And that's how they felt during the Atomic Age, during the World Wars, during the Enlightenment Revolutions, during thr plagues, during the Viking raids, during the fall of Rome.

Yet, we persisted.

[thinkingofmikey]

I don’t know how you left I don’t know if you ran If you walked if you crawled I don’t know if you were pushed If you were stripped and thrown away But I know that you were bruised. I know that you were bleeding. You might have danced, Leaving rusty footprints in your wake; You might have wept, turning back, A trail of salt you can never follow home. I know that you are gone And I know that your ghost Is the only good thing in this house. I know that the only note of hope here is the fact that you are gone. This is our blessing for you, Whether you are our brother Our sister Our sibling All of these or none: You are family. Blessed are the faggots Blessed are the dykes Blessed are the trannys And the limp wristed queers Blessed are those who leave. Blessed be your mind- Blessed be your questions and your doubts. Blessed be your soul- Blessed be your fears and flaws. Blessed be your body- Blessed be the eyes that saw clearly, The feet that carried you away, The mouth that eats and drinks The tongue that speaks with love The lips that kiss and the hands that wander. A blessing for you, For everything that you are: Burn everything that tells you you’re not worthy Burn everything that tells you you must change. A blessing for you, For everything you are: Leave nothing on the altar for God- Because you belong to yourself A blessing for you, For everything you are: You are whole And you are holy And you are free. Amen

We had a server meetup this weekend and the airbnb was filled with bone-chilling evangelical propaganda - the wall with pictures of all the children had an empty spot, where a 13th photo should have been.

And who knows why that photo was taken down, but for the weekend, that house was filled with people who are that blank space on a wall in a home they'll never return to; so we wrote a blessing.

[thinkingofmikey]

I just lost one of my best friends to ovarian cancer this summer. You never know when it'll be your turn to live through or support someone through this hell. Better to have a plan than go in blind.

How to have cancer

THIS WEEKEND (November 8-10), I'll be in TUCSON, AZ: I'm the GUEST OF HONOR at the TUSCON SCIENCE FICTION CONVENTION.

I've got cancer but it's probably (almost certainly, really) okay. Within a very short period I will no longer have cancer (at least for now). This is the best kind of cancer to have – the kind that is caught early and treated easily – but I've learned a few things on the way that I want to share with you.

Last spring, my wife put her arm around my waist and said, "Hey, what's this on your rib?" She's a lot more observant than I am, and honestly, when was the last time you palpated your back over your left floating rib? Sure enough, there was a lump there, a kind of squishy, fatty raised thing, half a centimeter wide and about four centimeters long.

I'm a 53 year old man with a family history of cancer. My father was diagnosed with lymphatic cancer at 55. So I called my doctor and asked for an appointment to have the lump checked over.

I'm signed up with Southern California Kaiser Permanente, which is as close as you come to the Canadian medicare system I grew up under and the NHS system I lived under for more than a decade. Broadly speaking, I really like KP. Its app – while terrible – isn't as terrible as the other apps, and they've taken very good care of me for both routine things like vaccinations and checkups, and serious stuff, like a double hip replacement.

Around the time of The Lump, I'd been assigned a new primary care physician – my old one retired – and so this was my first appointment with her. I used the KP app to book it, and I was offered appointments six weeks in the future. My new doc was busy! I booked the first slot.

This was my first mistake. I didn't need to wait to see my PCP to get my lump checked over. There was really only two things that my doc was gonna do, either prod it and say, "This is an extremely common whatchamacallit and you don't need to worry" or "You should go get this scanned by a radiologist." I didn't need a specific doctor to do this. I could have ridden my bike down to the KP-affiliated Urgent Care at our local Target store and gotten an immediate referral to radiology.

Six weeks go by, and my doc kind of rolls the weird lump between her fingers and says, "You'd better go see a radiologist." I called the Kaiser appointment line and booked it that day, and a couple weeks later I had a scan.

The next day, the app notified me that radiology report was available in my electronic heath record. It's mostly technical jargon ("Echogenic areas within mass suggest fatty component but atypical for a lipoma") but certain phrases leapt out at me: "malignant masses cannot be excluded. Follow up advised."

That I understood. I immediately left my doctor a note saying that I needed a biopsy referral and set back to wait. Two days went by. I left her a voice message. Another two days went by. I sent another email. Nothing, then a weekend, then more nothing.

I called Kaiser and asked to be switched to another Primary Care Physician. It was a totally painless and quick procedure and within an hour my new doc's intake staff had reviewed my chart, called me up, and referred me for a biopsy.

This was my second mistake. When my doctor didn't get back to me within a day, I should have called up KP and raised hell, demanding an immediate surgical referral.

What I did do was call Kaiser Member Services and file a grievance. I made it very clear that when I visited my doctor, I had been very happy with the care I received, but that she and her staff were clearly totally overloaded and needed some kind of administrative intervention so that their patients didn't end up in limbo.

This is a privilege. I'm a native English speaker, and although I was worried about a serious illness, I didn't have any serious symptoms. I had the ability and the stamina to force action in the system, and my doing so meant that other patients, not so well situated as I was, would not be stuck where I had been, with fewer resources to get un-stuck.

The surgeon who did the biopsy was great. He removed my mass. It was a gross lump of yellowy-red gunk in formaldehyde. He even let me photograph it before it went to pathology (warning, gross):

https://www.flickr.com/photos/doctorow/54038418981/

They told me that the pathology would take 2-5 days. I reloaded the "test results" tab in the KP website religiously after 48 hours. Nothing was updated. After five days, I called the surgical department (I had been given a direct number to reach them in case of postsurgical infections, and made a careful note of it).

It turned out that the pathology report had been in hand for three days at that point, but it was "preliminary" pending some DNA testing. Still, it was enough that the surgeon referred me to an oncologist.

This was my third mistake: I should have called after 48 hours and asked whether the pathology report was in hand, and if not, whether they could check with pathology. However, I did something very right this time: I got a phone number to reach the specialist directly, rather than going through the Kaiser main number.

My oncologist appointment was very reassuring. The oncologist explained the kind of cancer I had ("follicular lymphoma"), the initial prognosis (very positive, though it was weird that it manifested on my rib, so far from a lymph node) and what needed to happen next (a CT/PET scan). He also walked me through the best, worst and medium-cases for treatment, based on different scan outcomes. This was really good, as it helped me think through how I would manage upcoming events – book tours, a book deadline, work travel, our family Christmas vacation plans – based on these possibilities.

The oncologist gave me a number for Kaiser Nuclear Medicine. I called them from the parking lot before leaving the Kaiser hospital and left a message for the scheduler to call me back. Then I drove home.

This was my fourth mistake. The Kaiser hospital in LA is the main hub for Kaiser Southern California, and the Nuclear Medicine department was right there. I could have walked over and made an appointment in person.

Instead, I left messages daily for the next five days, waited a weekend, then called up my oncologist's staff and asked them to intervene. I also called Kaiser Member Services and filed an "urgent grievance" (just what it sounds like) and followed up by filing a complaint with the California Patient Advocate:

https://www.dmhc.ca.gov/

In both the complaint and the grievance, I made sure to note that the outgoing message at Nuclear Medicine scheduling was giving out false information (it said, "Sorry, all lines are busy," even at 2am!). Again, I was really careful to say that the action I was hoping for was both a prompt appointment for me (my oncologist had been very insistent upon this) but also that this was a very broken system that would be letting down every patient, not me, and it should be fixed.

Within a couple hours, I had a call back from KP grievances department, and an hour after that, I had an appointment for my scan. Unfortunately, that was three weeks away (so much for my oncologist's "immediate" order).

I had the scan last week, on Hallowe'en. It was really cool. The gadget was awesome, and the rad-techs were really experienced and glad to geek out with me about the way the scanner and the radioactive glucose they infused in me interacted. They even let me take pictures of the scan visualizations:

https://www.flickr.com/photos/doctorow/54108481109/

The radiology report was incredibly efficient. Within a matter of hours, I was poring over it. I had an appointment to see the doc on November 5, but I had been reading up on the scans and I was pretty sure the news was good ("No enlarged or FDG avid lymph nodes are noted within the neck, chest, abdomen, or pelvis. No findings of FDG avid splenic or bone marrow involvement").

There was just one area of concern: "Moderate FDG uptake associated with a round 1.3 cm left inguinal lymph node." The radiologist advised the oncologist to "consider correlation with tissue sampling."

Today was my oncology appointment. For entirely separate reasons, I was unable to travel to the hospital today: I wrenched my back over the weekend and yesterday morning, it was so bad that I couldn't even scratch my nose without triggering unbearable spams. After spending all day yesterday in the ER (after being lifted out of my house on a stretcher), getting MRIs and pain meds, I'm much better off, though still unable to get out of bed for more than a few minutes at a time.

So this morning at 8:30 sharp, I started calling the oncology department and appointment services to get that appointment changed over to a virtual visit. While I spent an hour trying various non-working phone numbers and unsuccessfully trying to get Kaiser appointment services to reach my oncologist, I tried to message him through the KP app. It turns out that because he is a visiting fellow and not staff, this wasn't possible.

I eventually got through to the oncology department and had the appointment switched over. The oncology nurse told me that they've been trying for months to get KP to fix the bug where fellows can't be messaged by patients. So as soon as I got off the phone with her, I called member services and filed another grievance. Why bother, if I'd gotten what I needed? Same logic as before: if you have the stamina and skills to demand a fix to a broken system, you have a duty to use them.

I got off the phone with my oncologist about an hour ago. It went fine. I'm going to get a needle biopsy on that one suss node. If it comes back positive, I'll get a few very local, very low-powered radiation therapy interventions, whose worst side effect will be "a mild sunburn over a very small area." If it's negative, we're done, but I'll get quarterly CT/PET scans to be on the safe side.

Before I got off the phone, I made sure to get the name of the department where the needle biopsy would be performed and a phone number. The order for the biopsy just posted to my health record, and now I'm redialing the department to book in that appointment (I'm not waiting around for them to call me).

While I redial, a few more lessons from my experience. First, who do you tell? I told my wife and my parents, because I didn't want to go through a multi-week period of serious anxiety all on my own. Here, too, I made a mistake: I neglected to ask them not to tell anyone else. The word spread a little before I put a lid on things. I wanted to keep the circle of people who knew this was going on small, until I knew what was what. There's no point in worrying other people, of course, and my own worry wasn't going to be helped by having to repeat, "Well, it looks pretty good, but we won't know until I've had a scan/my appointment/etc."

Next, how to manage the process: this is a complex, multi-stage process. It began with a physician appointment, then a radiologist, then a pathology report, then surgery, then another pathology report, then an oncologist, then a scan, then another radiologist, and finally, the oncologist again.

That's a lot of path-dependent, interdepartmental stuff, with a lot of ways that things can fall off the rails (when my dad had cancer at my age, there was a big gap in care when one hospital lost a fax from another hospital department and my folks assumed that if they hadn't heard back, everything was fine).

So I have been making extensive use of a suspense file, where I record what I'm waiting for, who is supposed to provide it, and when it is due. Though I had several places where my care continuity crumbled some, there would have been far more if I hadn't done this:

https://pluralistic.net/2024/10/26/one-weird-trick/#todo

The title of this piece is "how to have cancer," but what it really boils down to is, "things I learned from my own cancer." As I've noted, I'm playing this one on the easiest setting: I have no symptoms, I speak and write English fluently, I am computer literate and reasonably capable of parsing medical/technical jargon. I have excellent insurance.

If any of these advantages hadn't been there, things would have been a lot harder. I'd have needed these lessons even more.

To recap them:

See a frontline care worker as soon as possible: don't wait for an appointment with a specific MD. Practically any health worker can prod a lump and refer you for further testing;

Get a direct phone number for every specialist you are referred to (add this to your phone book); call them immediately after the referral to get scheduled (better yet, walk over to their offices and schedule the appointment in person);

Get a timeframe as to when your results are due and when you can expect to get a follow-up; call the direct number as soon as the due-date comes (use calendar reminders for this);

If you can't get a call back, an appointment, or a test result in a reasonable amount of time (use a suspense file to track this), lodge a formal complaint with your insurer/facility, and consider filing with the state regulator;

Think hard about who you're going to tell, and when, and talk over your own wishes about who they can tell, and when.

As you might imagine, I've spent some time talking to my parents today as these welcome results have come in. My mother is (mostly) retired now, and she's doing a lot of volunteer work on end-of-life care. She recommends a book called Hope for the Best, Plan for the Rest: 7 Keys for Navigating a Life-Changing Diagnosis:

https://pagetwo.com/book/hope-for-the-best-plan-for-the-rest/

I haven't read it, but it looks like it's got excellent advice, especially for people who lack the self-advocacy capabilities and circumstances I'm privileged with. According to my mom, who uses it in workshops, there's a lot of emphasis on the role that families and friends can play in helping someone whose physical, mental and/or emotional health are compromised.

So, that's it. I've got cancer. No cancer is good. This cancer is better than most. I am almost certainly fine. Every medical professional I've dealt with, and all the administrative support staff at Kaiser, have been excellent. Even the doc who dropped the ball on my biopsy was really good to deal with – she was just clearly drowning in work. The problems I had are with the system, not the people. I'm profoundly grateful to all of them for the help they gave me, the interest and compassion they showed, and the clarity and respect they demonstrated in my dealings with them.

I'm also very grateful to my wife, my parents, and my boss at EFF, all of whom got the news early and demonstrated patience, love, and support that helped in my own dark hours over the past couple of months.

I hope you're well. But you know, everyone gets something, eventually. When you find yourself mired in a broken system full of good people, work the system – for yourself and for the people who come behind you. Take records. Make calls.

Look after yourself.

If you'd like an essay-formatted version of this post to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:

https://pluralistic.net/2024/11/05/carcinoma-angels/#squeaky-nail

[thinkingofmikey]

The absence of safety is the presence of fear.  The absence of freedom is the presence of rules, the constant litany of must do this and don’t do that and a very very complicated kind of math beneath every single decision.  The lack of love feels like self-loathing.  The lack of trust translates as learning skills and strategies and skepticism, how to get what you need because you can’t be sure it’ll be there otherwise.

This. This exactly. The fear, the self-policing, the self-loathing, the overwhelming and smothering shame, the low simmering rage that fuels you when everything else is depleted but you HAVE to keep trudging... Abusive situations are filled to the brim, they're overfull and pressurized.

Healthy situations have so much space! So much breathing room! If either were to feel "empty", the much much lower density of the healthy situation makes it seem empty IMHO.

There are a lot of abuse and recovery stories out there in fandom.  A lot of them are written by people who’ve never been in an abusive relationship.  That’s fine, that certainly doesn’t mean you can't write it, especially when it’s present in canon.  Unfortunately, it does mean that a lot of people get it wrong.

The usual abuse narrative you see in fandom is a story about absence.  The lack of safety.  The lack of freedom.  The lack of love, or of hope, or of trust.  They try to characterize the life of an abused kid, or an abused partner, based on what’s missing.  They characterize recovery based on getting things back: finding safety, discovering freedom, and slowly regaining the ability to trust–other people, the security of the world, themselves.

That doesn’t work.  That is not how it works.

Lives cannot be characterized by negative space.  This is a statement about writing.  It’s also a statement about life.

You can’t write about somebody by describing what isn’t there.  Or you can, but you’ll get a strange, inverted, abstracted picture of a life, with none of the right detail.  A silhouette.  The gaps are real but they're not the point.

If you’re writing a story, you need to make it about the things that are there.  Don’t try to tell me about the absence of safety.  Safety is relative.  There are moments of more or less safety all throughout your character’s day.  Absolute safety doesn’t exist in anyone’s life, abusive situation or not.

If you are trying to tell me a story about not feeling safe, then the question you need to be thinking about is, when safety is gone, what grows in the space it left behind?

Don’t try to tell me a story about a life characterized by the lack of safety.  Tell me a story about a life defined by the presence of fear.

What's there in somebody’s life when their safety, their freedom, their hope and trust are all gone?  It’s not just gaps waiting to be filled when everything comes out right in the end.  It’s not just a void.

The absence of safety is the presence of fear.  The absence of freedom is the presence of rules, the constant litany of must do this and don’t do that and a very very complicated kind of math beneath every single decision.  The lack of love feels like self-loathing.  The lack of trust translates as learning skills and strategies and skepticism, how to get what you need because you can’t be sure it’ll be there otherwise.

You don’t draw the lack of hope by telling me how your character rarely dares to dream about having better.  You draw it by telling me all the ways your character is up to their neck in what it takes to survive this life, this now, by telling me all the plans they do have and never once in any of them mentioning the idea of getting out.

This is of major importance when it comes to aftermath stories, too.  Your character isn’t a hollow shell to be filled with trust and affection and security.  Your character is full.  They are brimming over with coping mechanisms and certainties about the world.  They are packed with strategies and quickfire risk-reward assessments, and depending on the person it may look more calculated or more instinctual, but it’s there.  It’s always there.  You’re not filling holes or teaching your teenage/adult character basic facts of life like they’re a child.  You’re taking a human being out of one culture and trying to immerse them in another. People who are abused make choices.  In a world where the ‘wrong’ choice means pain and injury, they make a damn career out of figuring out and trying to make the right choice, again and again and again.  People who are abused have a framework for the world, they are not utterly baffled by everyone else, they make assumptions and fit observations together in a way that corresponds with the world they know.

They’re not little lost children.  They’re not empty.  They’re human beings trying to live in a way that’s as natural for them as life is for anybody, and if you’re going to write abuse/recovery, you need to know that in your bones.

Don’t tell me about gaps.  Tell me about what’s there instead.

[thinkingofmikey]

“I like not gendering my friends when I talk about them with others, it somehow lets their gender become a background detail, and allows other, more personal and relevant details about them shine through, shine around and over the sexism and misogyny of our world and skirt around preconceived ideas about who they might be and what they might be capable of. The other day, I was talking to my dad about my friend Carrie. I referred to Carrie as they, which allowed me to tell my father what a good carpenter they were (which they definitely are) without him stopping me to ask what? Carrie is a lady carpenter? My friend Carrie is anything but a lady, but she is a fine carpenter, however, in order to keep the conversation about Carrie the carpenter, instead of whether or not Carrie is a lady, I used the “they” pronoun for her. In my dreams, I imagine a world where we use “they” to refer to everyone, unless for some reason their gender is important or relevant to understanding the conversation, which it almost never is. That Carrie. They are such a good carpenter. I told Jamie about the sweater they knit for me perfectly. That Ivan. They were always such a dreamer. I still use the pronoun she for my publicity materials, and for mainstream media stuff, for two reasons: the first is that I do a lot of work in public schools, and I want those young women and girls to see every kind of she there can be. I want them to see my biceps and my shorn hair and shirt and tie and for some of them to see me as a possibility. For the ones that need to see other possibilities to see me, and recognize a future for themselves. I want them to see me living outside the boxes, because they might be asphyxiating in their own box and need to see there is air out here for them to breathe, that all they have to do is lift the lid a little.”

— Ivan Coyote, Gender Failure

[thinkingofmikey]

Andrea Gibson, Lord of the Butterflies

[thinkingofmikey]

...... F I N E

“One of the qualities that you can develop, particularly in your older years, is a sense of great compassion for yourself. When you visit the wounds within the temple of memory, you should not blame yourself for making bad mistakes that you greatly regret. Sometimes you have grown unexpectedly through these mistakes. Frequently, in a journey of the soul, the most precious moments are the mistakes. They have brought you to a place that you would otherwise have always avoided. You should bring a compassionate mindfulness to your mistakes and wounds. Endeavor to inhabit the rhythm you were in at that time. If you visit this configuration of your soul with forgiveness in your heart, it will fall into place itself. When you forgive yourself, the inner wounds begin to heal. You come in out of the exile of hurt into the joy of inner belonging.”

— JOHN O'DONOHUE - JOURNEY OF THE SOUL Excerpt from his book, Anam Cara

[thinkingofmikey]

How do you keep going during the dark times?

An hour at a time. Sometimes a minute at a time.

[thinkingofmikey]

- j (x), kintsugi

[thinkingofmikey]

fatima aamer bilal, excerpt from moony moonless sky’s ‘i am tired of making a religion out of my suffering’.

[text id: my bones whimper at the thought of what could have been. / what could have been if i was not born in a grave?]

[thinkingofmikey]

Fixing whelp.

I’m not okay

(from ask polly)

[thinkingofmikey]

First of all, how very dare you

learning that people want you in their lives is a skill you can develop if it does not come naturally