Professional Patient

But what happens when, due to a serious chronic and debilitating illness or injury, we are no longer able to conform or obey because our illnesses direct our lives?  What happens when our ability to consume is hampered because we no longer have an income?

Here, in the face of serious and disabling illness or injury, the coercive reality of our station is writ large: the new role to which we will conform is that of a professional patient; we will consume medical goods and services whether we want to or not and whether they improve or further damage our health or not; and we will obey this mandate or, without means to supply ourselves with food, shelter or the necessities of life, we will be left to die.  This is the foundation and essence of the disability-based benefits structure and it is very real indeed.  As a seriously ill Crohn’s patient, this is my current (and likely future) station and I am furious about it.  Recognizing my immense vulnerability as a disabled person I am also saddened that it has come to this, horrified that I will be unable to stop it, and terrified for my future.

Cannabis Refugee

After writing yesterday about Crohnomics, a friend pointed me to the article excerpted above. Its author maintained the old radical feminist Femonade blog until she got more interested in writing about being a “Disaffected Crohn’s Patient, Cannabis Refugee, Attorney” and medical-industrial resister. Unlike the author, I do not think immunosuppressant drug infusions “give you AIDS“, and lately I strive to avoid the words “patriarchy” and “capitalist.” I nonetheless find her writings compelling and insightful.

The thought of being a medical patient for life, leashed to the hospital, costing “the system” many times what I will ever earn, has been a blow to my self-esteem. Have I become a mere parasite?  NO! Quite the opposite.

“Professional patient” sums up my new life since my Crohn’s diagnosis. Thus far I have been more than willing to “submit to painful, stressful, dehumanizing and even dangerous medical testing and examinations; impersonal bureaucratic evaluations and determinations about your condition; and usually, to accept treatment.” Apparently, this is how I contribute to the economy. Not by being actually productive in any way (the arts, while being a crucial part of society, never paid well despite my productivity) but by being a reason doctors, nurses, medical technicians, pharmaceutical salespeople, researchers, scientists, patent lawyers and others have jobs. Without patients there would be no medical-industrial complex. Without a medical-industrial complex, there would be no treatment of expensive infusions, and no accompanying hope my Crohn’s disease might go into remission so I could someday be able to eat real food again.

Crohn’s sucks, but at least I have a “job.”

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Crohnomics

I was prescribed a “biologic” drug to treat the moderate-to-severe Crohn’s disease I was diagnosed with in December. It is called Skyrizi and it costs about $20,000 a dose.

My prescribed regimen includes hospital-administered infusions every 4 weeks for 3 months, followed by home dosing via patented (ugh) “on-body injector” device every 8 weeks. Assuming 8 doses in 2024 (I got my first infusion January 5), at the 2023 price of $19,734.61 per dose, my insurance will be paying $167,876.88. I hope they’ve negotiated a better price; assuming a generous 50% discount the total would come to $78,938.44.

That is many times what I earn annually.

Now, I could try to earn more. Being a famous cancelled artist doesn’t pay much, but I have low expenses; for the last several years I have qualified for Medicaid, which, in Illinois, is by far the best insurance I have ever had. If I earned more, I would lose my Medicaid, have to shell out for private insurance premiums and deductibles, and get stuck with hefty co-pays on my absurdly expensive Crohn’s treatments. I would lose money; I can’t afford to earn more.

“Working for a living” is often called “reality.” I work for a living, modest as it is. But do I really? What’s going to ensure I keep living (if it works) is a drug that costs about $150,000 a year, every year, forever. So I am now a big net drain on the economy, and in light of this my earnings feel ridiculously performative: “Income Theater.” 

I will continue to “earn” (LOL) so I can have things like clothes and food and bike parts, electricity and water and heat and garbage collection, art supplies and maybe (maybe!) even occasional travel. Medicaid doesn’t pay for those. I’m pretty sure qualifying for Medicaid means I also qualify for SNAP (aka food stamps), which I’ve never applied for. I have some pride; I can afford food, if not health insurance. But food is getting more expensive, and pride seems absurd now that the State is paying nearly ten times my annual income on a drug friends tell me is advertised on television (no wonder it costs so much! Spots on SNL aren’t cheap).

I could also claim Crohn’s as a disability, which would give me a tax credit. Nice!

I must say I am now treated better by the local hospital system than ever before in my life. My appointments are scheduled swiftly; I have a responsive Nurse Practitioner overseeing my treatment, plus a “nurse navigator” to help with odds and ends, plus a “nurse ambassador” from AbbVie Pharmaceuticals, in case there’s any problem with home delivery of my medication in the future, or if I use the device incorrectly. In the past, the local hospital has been absolute shit to me. But now I’m a $150,000-a-year income stream, and doors open everywhere. 

If my symptoms improve, I will continue taking Skyrizi for the rest of my life or until it “poops out.” Biologic drug efficacy can last a few years, or over a decade, by which time some new expensive treatment will be on the IBD scene, or society will have collapsed.

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Bat Mitzvah

A poem about connecting with my Ashkenazi heritage.

Today I am a woman.
Today I am a Jew.
Today I have an ailment
my ancestors all knew.

For many generations,
my Fathers’ guts have hurt.
My Mother can’t eat chocolate:
a most unjust dessert.

I gather all my chocolate;
I give it all away.
No more can I digest it;
And I have Crohn’s today.

I feel myself much older
than I have ever known.
Today I have a Crohn’s disease;
Today I am a crone.

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Answers from a Pandemic

100 years without a pandemic has made us stupid. It’s made me stupid, anyway.

So many questions about human nature that puzzled me, I now see answered. Why are we so tribal? Why does language change so quickly? Why are we so xenophobic – so fearful of people who look different from us even slightly?

Answer: communicable diseases.

The Andaman Islanders  had the right idea. They may or may not have known the missionary attempting to evangelize them was full of contagions that could kill them; but they had instincts, and culture, that protected them from infection.

Doesn’t it make sense, evolutionarily, that groups survived that shut out/fought off/killed outsiders? Doesn’t it make sense that language would fracture rapidly, to make ingroups and outgroups develop quickly? The fracturing of humanity protects it from diseases. “Civilization” doesn’t like that, but biology does. And our innate cultural instincts (like language) assisted us biologically.

Deadly communicable diseases are a part of life we’ve been alienated from in the 20th and 21st centuries. Antibiotics especially have transformed the world, allowing human population to explode, and also permitting factory farming on a grotesque scale. We know that antibiotics have a limited life that is ending soon, and our current viral pandemic is just a tiny taste of what’s to come once bacterial diseases return in force. But for over 100 years, we’ve merrily reproduced and exploited without the natural constraint of disease that was a former bedrock of biological reality.

Xenophobia is maladaptive for global civilization, but it’s perfectly adapted for keeping tribal cells of humans hygienically sealed off from each other. “Racism” is only a thing in Civilization, in which humans enslave each other for commerce and power. Without slavery and exploitation, there’s no racism, because there’s nothing pushing diverse groups of humans on top of each other. There’s only “others,” the in-group and the out-groups. The xenophobic aspects of human nature seem appalling in Civilization, but must have worked very well in prehistoric tribal life. Groups were no larger than 150 humans, and most much smaller than that, each with their own dialects, and similar physical traits.

Of course humans would mate outside the tribe, to prevent inbreeding, so curiosity about the “exotic” is another adaptive trait. The exotic is SEXY. Sexy, exploitable, and sadly aiding and abetting racism when repurposed in Civilization. But my understanding is that tribes had very rigid protocols governing permeation through inter-tribal breeding. They were not cosmopolitan. From a biological standpoint, cosmopolitanism = death. But Civilization loves cosmopolitanism: diversity means more markets and an extension of power. Open borders are a boon for global capitalism, but tribal intermarriages were anything but that.

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