essay Archives - Nina Paley

The War of Resistance

“Oceania had always been at war with Eastasia.”

In George Orwell’s 1984, the past is altered, but war is constant; the names of the combatants are changed retroactively, but combat is continuous.

Members of nations at war bond more tightly with their compatriots. War offers a shared dream of triumph over a common enemy. Thus, continual state of war is an effective means of social control. It doesn’t really matter who Oceania is at war with, as long as Oceania is, and always has been, at war.

1984 illustrates how supporting wars is a sucker’s game. War is a product of the Establishment — governments, the military-industrial complex, corporations — using us, the people, to maintain their power. Keeping us in line. Keeping us obedient with fear!

We the enlightened, who have read 1984, don’t get caught up in nationalism. Instead, we RESIST. We resist the war machine, the governments, the military-industrial complex. We don’t play their games. We organize a student protest! We build a shantytown on campus. We demand a ceasefire now!

Students have always joined such movements against the Establishment. “Revolution Now” has been chanted for centuries. There is always a revolution in progress, and there is always a power structure to be revolted against. There is always a dream of triumph over a common enemy.

While most revolutions fail, every once in a while one succeeds. Then what happens? The Resistance becomes the Establishment. The Resistance IS the Establishment. Just as the students making protest camps on the green lawns of universities ARE the upper middle class.

Who funds the Resistance? The Establishment.

Why would they do that? Because they want to be always at war. The same reason warring nations do. Social control, you dupes.

The Resistance has always been at war with the Establishment.

My Last Hospital-Administered Skyrizi Infusion

$320-per-minute infusion in progress (it takes just over an hour).

What does one wear to a $20,000-a-dose drug infusion? At least one person suggested a tiara and evening gown.

One Skyrizi intravenous infusion dose is 600mg, or ~~2.1164~~ .21164 ounces. At $20,000 per dose that’s ~~$9,450~~ $943,333 per ounce.

CORRECTION: my math was off by a factor of 10. Via JO 753 in a comment below:

“There are 28.3 gramz per ounse. 600 milligramz iz .6 gramz, so an ounse iz 47 dosez. Thats 943,333$ an ounse.

No wonder they can run commercialz for this stuff all day.”

For comparison, gold is $2,051 per ounce, as of this writing. So Skyrizi retails at more than ~~four~~ fourty-six times the cost of pure gold.

I could have saved so much money if I’d gotten infused with pure gold instead of Skyrizi.

Since starting my Crohn’s disease adventure I’ve learned that basically no one pays the retail price of these drugs. Instead, an insurer pays a fraction, and the rest is written off by the pharmaceutical company and hospital so they can claim they’re “charities” and avoid taxes.

It would be like if I charged $150,000 for my $150 Drawings. Customers would still pay $150 and I’d set up a “financial assistance program” to generously cover the rest. Then I’d mark a net loss of $149,850 per drawing, which I could write off my taxes if I made enough to pay big taxes in the first place, but I don’t because I stay just below the poverty line so I can continue qualifying for Medicaid which pays for my Skyrizi.

That’s the difference between someone who buys a cheap tiara and fake movie-prop money off Amazon, and someone who is actually rich.

My friend Minette, who took these photos, thought a shot of my back was important.

Anyway that’s it for my hospital-administered Skyrizi infusions. My next $20,000 dose will be a 360 mg/2.4 mL “single-dose prefilled cartridge with on-body injector”. That’s ~~$15,748~~ $157,222 per ounce, equivalent to about ~~7.68~~ 76.8 ounces of gold.

Gold is looking like a real bargain right now.

The Autoimmune Empire: Depression

Depression is the mind attacking itself. It’s been called a “psychic autoimmune disease.”

This morning, part of me woke up asking, what can I fix? What problem can I attack?
I know — ME!

My motives are good: what can I purify and improve? But the target is wrong.

My impulses — to fix, to cure, to control — may be overactive and delusional, just as my immune system is overactive and confused. My Crohn’s disease is treated with immunosuppressants, designed to calm down the immune system.

My mind, over time, has learned to calm down itself. I have come to accept that I can control very little, so I have learned to give up more, to surrender. This has required me to endure some grief.

I have also simply run out of steam as I’ve aged. No wonder depression was such a problem of my youth: all that energy! All those good intentions run amok! Age itself acts like an immunosuppressant of the mind. As an older friend once told me of the remission of his own depression: “my angst circuits just burned out.”

I have recovered a lot since my severely depressed youth. But a big stress can trigger depression again, just as a big virus can trigger a body’s immune system to attack itself. In fact, having an autoimmune disease seems to be triggering some depression in me now. I can’t fix my Crohn’s disease. But my mind still responds to the stress by saying, FIX IT! Failing to fix it, my mind turns on itself, because what else does it have at hand?

Only surrender, and grief. I wish my immune system could grieve whatever it needs to grieve and leave my tissues alone. Meanwhile, I hope my mind learns to accept it, because however unpleasant Crohn’s disease is, depression is worse.

Medical Impostor Syndrome

Maybe I should start concealing my hair loss with a jaunty hat!

When I was a child I wanted to be sick, because when I was sick I got to stay home from school. Sometimes I was effortlessly sick and got to stay in the oddly quiet house with its peculiar mid-day creaks and sounds and winter light through the windows and extremely lame daytime TV. But at least once I sat near the heat register before school, then asked my Mom to feel my forehead, and with grave worry she said I should stay home. SCORE! But I suffered a vague sense of being ill at ease – my “dis-ease” not physical, but guilt. I hadn’t earned my reprieve from school by being really sick.

One time I got stung by a bee at recess. I don’t think my grade school had a real nurse back then, so when students got owies we went to “the office” where a grumpy secretary would give us a band-aid. I was in a lot of pain, it hurt like hell, and I cried and cried, not just from the pain but from the terror of the pain. “It doesn’t hurt that much!” said the secretary. But it did.

A few years later, in Junior High, I was beset by horrendous menstrual cramps. I also developed painful abdominal cramps and diarrhea even when I wasn’t menstruating. I drank barium and underwent medical scans but no specific cause was found, so I was diagnosed with the vague “irritable bowel syndrome,” with no treatment and no sympathy (in contrast to my brother, who had already been through several surgeries for what was later diagnosed as Crohn’s). Doubled over in pain at school, I would go to the office where the grumpy nurse would roll her eyes. “You just have to live with it!” she would snap, as I begged to go home. “Period pain” plagued the rest of my life; I would spend 3 days a month in bed, in agony, until at age 50 I got a hysterectomy and sweet, permanent relief. I was finally permitted a hysterectomy because doctors finally discovered an orange-sized fibroid in my cervix; decades of mere pain weren’t enough to merit any treatment.

Now I have late-onset Crohn’s disease, presumably triggered by my extended bout with COVID this Spring. (Many autoimmune disorders are linked with COVID; I call it COVID-Reactive Autoimmune Pathology, or CRAP.) I got myself referred to the GI department not because of pain, but because months of bad poops had me concerned. One colonoscopy later and bam, I have an incurable progressive RECOGNIZED autoimmune disease that even qualifies as a disability. I’m prescribed a $150,000-a-year designer treatment which my insurance actually covers, and everyone feels sorry for me. I soak up pity like a thirsty sponge.

Just as I’ve seen no correlation between quality of artwork and recognition/money, there seems to be no correlation between pain and external compassion. Some of the worst pain in my life, no one gave a shit about. But Crohn’s? Everyone validates it, and assumes I’m in more physical pain than I am. Yes I am in pain sometimes, if I stray from my ridiculously narrow diet of fresh juice and “safe foods” (Rice Chex, rice cakes, white rice, peeled potatoes, lactose-free dairy, eggs, and fish). But mostly I’m fine. Friends express sympathy and support, but do I deserve it? Sometimes sharing my diagnosis feels like putting my head near the heat register of my childhood home.

On the other hand, I can’t eat real food any more, and when things go wrong they go very, very, crap-in-my-pants wrong. I’m losing my hair and have some dreadful co-morbid skin conditions. And I have these really cool pictures of the inside of my colon (TRIGGER WARNING!):

Continue reading “Medical Impostor Syndrome”

My Former Brother

My former brother declared on Fecebook that humans can change sex.
I invited him on Heterodorx, the podcast I co-host with Corinna Cohn, to explain how.
He declined in a long email, in which he chastised me once again for my insensitivity to The Trans Community. He asserted men can become women. He referred to such women as “former men.”

Corinna wrote him an email in response that was a cutting, glorious thing. Corinna is the only man who has ever stood up for me to my former brother (or father, to whom my former brother bears much resemblance). He signed his email, “Former Man.”

After this exchange I decided to personally, privately disown my former brother. I have heard that other brothers defend or encourage their little sisters; mine has always done the opposite. Whenever I found myself bullied or attacked, he blamed me. Perhaps he blamed me for his own troubles too, since my role as the youngest in my family seemed to be scapegoat. When I first got viciously canceled for saying women don’t have penises, he sent me a long email urging me to apologize to everyone I “hurt.”

Following his logic, I reasoned that if men can become women — if history and biological reality can be fundamentally rewritten by will, identity, or “dysphoria” — then I could identify out of being his sister. I have Sibling Dysphoria. Having him as a brother never felt right; it felt horrible. From a very young age I knew I was born in the wrong family. My True, Authentic Self is not the sister of this man. From that point onward, I identified him as not-my-brother.

That was over a year-and-a-half ago. Last week, after numerous tests including a colonoscopy following months of symptoms, I was diagnosed with Crohn’s disease. The number-one risk factor for Crohn’s disease is having an immediate family member with Crohn’s disease: a parent or sibling. My former brother has Crohn’s disease.

Maybe I should have removed any relation to him from my medical records, to affirm my True Identity. Medical forms have countless genders patients can choose from, which physicians are required to affirm; why shouldn’t they affirm my unrelated-to-asshole-with-Crohn’s-disease identity? Lord knows I’ve felt suicidal in the absence of its affirmation, such as during my entire childhood, adolescence, and young adulthood.

But regardless of whether I received that life-saving affirmation, I would have Crohn’s Disease anyway. Just like the “transman” who showed up at the hospital in pain was pregnant anyway. Because “former women” are still women, “former men” are still men, and my former brother is still my brother, no matter how much I hate it.

Feeling the need to state sibling preference is not a comfortable thing to do, and my history has been filled with pain.

He-ing Corinna

Corinna, my friend and podcast co-host, is a man to me. I don’t think it’s because I’ve been using sex-based pronouns for him, as I do for everyone. He does pass; the majority of people read him as female. When I first saw him in a video, I thought, “he passes, he’s cute.” And once I mistook him for a mom, from a distance, while he was unloading his bike parked right next to a dad unloading more bikes with his kids. I read them all as a family unit, didn’t recognize Corinna, and rode right by.

Nonetheless, Corinna is a man to me, and not just on a technicality. Calling him “him” generates for me no cognitive dissonance; I don’t get tripped up as I do with Buck Angel.

Back in the day (circa 2017), when male transactivists liked to claim they were “expanding the bandwidth of womanhood,” gender critical radical feminists responded that such men were expanding the bandwidth of manhood. Why couldn’t we accept that some men are feminine? Men are eager to exclude effeminate men, especially effeminate gay men, from manhood. Meanwhile, unfeminine women, masculine women, were increasingly eager to exclude themselves from womanhood. Radical feminists urged everyone to broaden their acceptance of men and women, to include the full range of behaviors and presentations we call gender.

This seemed sensible to me. I was already opposed to sexist stereotypes, being gender non-conforming myself. But prior to 2017, I believed if an individual wanted to exclude themselves from their sex class, I should support their exclusion. Isn’t that “kind”?

Well, no. It’s not kind to tell someone that they have no place in their natal sex class because they don’t feel like they fit in. Your sex isn’t socially determined. Yes, your social “sex roles” are, but I supported broadening these categories to include everyone. Women can be firefighters and airplane technicians and boxers, strong and active and butch. Men can be pretty and wear dresses and present themselves as objects for consumption, weak and passive and effeminate.

Corinna is a man to me. An effeminate gay man with no gonads, who has been on exogenous estrogen for decades. His fat distribution is more “womanly” than my own. He has long hair; I cut mine short. He is a disenchanted transsexual. Does he want to exclude himself from his sex class? I don’t think so, but other men certainly did in the 1990’s, when he chose irreversible surgery as a teenager.

Corinna is a man attracted to men. He has had relationships with men where both he and they pretended he was a woman. He has told me he doesn’t want to do this again. He knows he is not a woman; he wants to be with a man who accepts him as he is.

Maybe Corinna is a man to me because we’ve had so many conversations about this. Maybe it’s because I really have expanded my idea of manhood and womanhood. Whatever the reason, I now find it jarring when strangers call Corinna “ma’am,” and friends call him “her.” I acknowledge some people sincerely perceive him as female. Others might register ambiguity, but think they know what side of “be kind” they should fall on.

Sometimes I joke that I call Corinna “he” because I’m an asshole. Or because I’m so rigid about using sex-based pronouns. But the fact is, I really, truly, sincerely perceive Corinna as a man, albeit an extraordinary one. Extraordinary men are men, and, extraordinary though he may be, Corinna is no exception.