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.

Arriving at the hospital

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.”

The Queen on her throne.

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.

Mmmm, money.

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.

Hospital money is fake.

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.

$157,222 per ounce
$2,051 per ounce

Gold is looking like a real bargain right now.


The Autoimmune Empire: Depression

Example from my wayward youth

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. 


Deluded and Immature

When I lived in New York, I knew two very talented and driven artists who had abandoned their children. One had left her son with her parents so she could move to NYC and pursue visual arts. The other had simply ditched his kid with his ex-wife, to devote his life to stage performance. Both told me separately (they didn’t know each other) that, had they stayed to raise their offspring, they would have killed themselves.

I always took the prospect of parenthood very seriously. I believed anyone who had a child needed to prioritize them, and if that meant giving up their so-called dreams, they were obligated to do so. I felt ambivalence admiring my friends’ works, when I learned they had abandoned children to create them. I believed their explanations were honest, that they may indeed have committed suicide if trapped in the parental role, which would have left their families even worse off. I judged them for not thinking this through before they had made innocent new humans to suffer their bad decisions. They were both young when got pregnant and impregnated, respectively, caught up in emotions and hormones and romance and a sense of fulfilling biological and social imperatives. Neither child was “accidental”.

Jordan Peterson recently said not wanting children is “either deluded or immature.” He is speaking primarily to young men, and maybe he’s right about them. He also asserts that many (most?) women are happier as mothers than in high-powered careers. He may be right. Most people seem to desire children, enjoy children, are attracted (maternally and paternally) to children, like being around children, and find children delightful and inspiring. Most parents discover a deep sense of meaning in their children, something they never experienced prior, to the point they see their lives before children as comparatively meaningless and empty. This is their main point of reference: a childfree adult is like a younger version of them that never grew up, because when they grew up they had children.

Not wanting children is socially difficult and alienating. Years ago, on the online forum, a woman asserted that only women are truly childfree. Men may not want children, but only women understand deeply what they are rejecting. 

My fertile years were marked by constant awareness of my difference. Not only did I have no desire to have a baby, I felt pronounced revulsion to the idea, and to babies themselves. I had no ill will toward them, but no maternal attraction either, and preferred to stay as far away from them as possible. I was acutely aware I was supposed to feel and behave a certain way around babies, as relentlessly demonstrated in media: to coo, stare adoringly, ask to hold it, and wistfully long to have my own. My real feelings were perverse and would horrify anyone around me. I internalized much of their hatred. Deluded or immature. What kind of monster would be repulsed by babies?

A woman, first of all. A man with a calling doesn’t need to experience that revulsion; he won’t lose all his energetic resources to reproduction, he doesn’t gestate, give birth, breast feed, or otherwise surrender to children as a woman must. If a woman has a calling – to use her full energies to reproduce culturally, rather than biologically – then whatever culture destined to come through her benefits from her psycho-reproductive resources. Any emotional inclination toward biological children is a threat to whatever Art wants to be made instead. A female artist is at much higher risk of abandoning or starving her creative potential for a child than a male is. And if she abandons her child instead, as my NYC artist friend did, the consequences are devastating and maladaptive.

Only women can be truly childfree.

My own choice to never have children was realistic and mature. First, I clearly had no orientation toward them. It was possible – probable, even – that if I’d had my own, my revulsion would have evaporated and I would have loved them deeply, sacrificing my creative pursuits. Would this have been a net benefit to society? Because I was realistic and mature, I understood children need committed love and sacrifice. Because I was realistic and mature, I condemned the abandonment of children. Because I was realistic and mature, I took my ingrained and unwanted revulsion of children seriously. Most available men desired children; my aversion vastly reduced my relationship prospects. I have never wanted children, but I have wanted men who wanted children. I have also wanted social acceptance and a sense of belonging. My revulsion of babies and parenthood denied me this. But I was realistic and mature enough to understand that however much I wanted the benefits of fitting in, suppressing my feelings (revulsion), my true orientation to parenthood (against it), and my calling (Art), would be dishonest and commit me and any potential family to misery.

I had a calling. Much as parents wonder how anyone can not want children, I marveled how others lived their lives without making Art. How could you have any sense of meaning without creating something beautiful and significant? How dull and empty the lives of non-artists must be. I eventually concluded that the meaning and order Art brought to my life, largely came from children in theirs. Which is how I came up with the idea of a psycho-reproductive system. Our biological reproductive systems are evident; we are shown diagrams of them in sex ed; but our psyches participate as well. 

Don’t forget the brains!

I first learned about how Cuckoo birds reproduce in Richard Dawkins’ The Extended Phenotype. Cuckoos don’t raise their own chicks; they hijack the psycho-reproductive systems of other birds, who find Cuckoo hatchlings so irresistibly attractive they feed and nurture them to the detriment of their own offspring. Dawkins points out the behavior of the unrelated birds, hijacked into the parental role, is an expression of the Cuckoos’ genes, which evolved and adapted to do exactly that. Hijacking an organism’s psycho-reproductive system can be a winning evolutionary strategy. I thought about my cats, whom I love with the maternal affection I’m supposed to devote to human babies. Clever cats! Clearly I possess a psycho-reproductive system; I’m not fundamentally devoid of maternal instinct. Mine has simply been hijacked by other species, which have evolved to do exactly that: cats are cute for a reason. I have no regrets.

Culture is also a living and evolving thing. Humans are not human without it. Our brains are made for language (a subset of Culture), and language is made for our brains. Humans raised in isolation, without communication through language and other culture, grow into sick stunted animals, if they survive at all, which they don’t. Culture is insufficiently studied as a life form; it’s commonly considered a product or creation of humanity, rather than a symbiote.

Culture hijacked my psycho-reproductive system — for which I’m glad, don’t get me wrong! I’m part of a proud tradition of humans who have devoted their lives to Culture, although it’s more frequently called God in this context. Jesus Christ was notably childfree, at least in myth. Beloved saints were childfree. In many sects, if one is called to the Church, they must remain childless (celibacy being the means to achieve this). Many social and cultural specialties demand energies otherwise reserved for child-rearing. For some, giving up children to pursue a calling is a sacrifice. For others, the calling – Culture – does what any clever living thing would adapt to do, and hijacks its host’s psycho-reproductive system for its own life support. Not having children was no sacrifice for me. Making Art – cultural reproduction – was a joy. It did not feel like a choice. 

The desire to reproduce, or not, is no expression of delusionality or maturity. Reproduction is a primal drive inherited from the dawn of Life. Humans live in symbiosis with Culture which, although relatively newer and not well understood, is alive, reproducing, evolving and adapting. In humans, biological reproduction entails sacrifice, especially of the mother: an enormous devotion of energy and time, and giving up competing dreams and desires. Cultural reproduction – Art – also entails sacrifice of energy and time and, in my case, of societal approval and a sense of belonging that would have been a great comfort. I will in some sense always suffer alienation from the majority of my species, as I do not share the basic, meaningful human experience of parenthood. Yet, I still seek ways to connect with and understand parents.

Most don’t return the favor. Maybe they’re deluded or immature.