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.
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.
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.
Dave was hella funny and brilliantly creative and kinda nuts, with a good heart that just stopped January 11, 2024. We both had comic strips in the Daily Illini in the late 1980’s; his, “Bob ‘n’ Dave,” was clever, hilarious, gonzo, and unpretentiously deep. Much later, as the Duke of Uke, he made “Spider Suite” which I used in my film Seder-Masochism. His was the absolutely perfect voice of Death, and if there is an afterlife I hope he’s simultaneously entertaining and scaring the pants off any souls he meets.
My friends MK and Alex asked me to officiate their October 27, 2023 Halloween-themed wedding in Houston, TX, and I was honored to oblige. Below is the ceremony I wrote for them.
ANNOUNCEMENTS Welcome to MK and Alex’s wedding! Please silence your phones and devices and put them away. There’s a professional photographer here, you don’t need to take photos.
INTRODUCTION
My name is Nina Paley. I met MK and Alex just before a screening of my film Seder-Masochism in New York. The festival director had just whispered to me they’d gotten complaints about me being a “TERF”. As I wandered around in a familiar despair, a young woman introduced herself to me. “We love your work,” she said enthusiastically. And then, conspiratorially, “and also your ideas.” That perked me right up. Shortly after the screening we visited a vegan restaurant together. MK and Alex were still shell-shocked from the social implosion of the anarchist vegan co-op house they’d helped create. They were so smart, creative, and optimistic, I was utterly charmed by their tales of getting bashed up by idealism’s inevitable horrors. A year or two later they emailed me about their new women-centered feminist social media site, Spinster. I became a moderator, joined them on a visit to California, saw MK at the Michigan Framily Reunion, interviewed Alex and MK separately on the Heterodorx podcast, and otherwise follow them online. MK and Alex are a couple of brave and brilliant pioneers who have been through a lot together. Their relationship has already outlasted any of mine by a factor of at least two, so I am pleased to officiate their union.
INVOCATION Dearly Beloved, we are gathered here today in the sight of God and these witnesses and the spectre of disappointed Radical Feminism to join together MK and Alex in holy matrimony; which is either an honorable estate instituted of God, or the maintaining of women as chattel property in Patriarchy. Into this holy estate, or disgrace to women’s liberation, these two persons present come now to be joined. Therefore, if anyone can show just cause why they may not be lawfully joined together, let them speak now or forever hold their peace – Radical Feminists excepted, they’ve already heard our arguments, Alex and MK really really REALLY want to get married anyway for some reason. Maybe they want to make babies? We know what causes that, talk to me after the ceremony and I can explain.
READING
At this point in the ceremony it is traditional to read from the Apostle Paul, The first letter to the Corinthians, Chapter 13: Love is patient, love is kind, blah blah etc.
Now I shall read from by Toerien and Williams, “In Knots: Dilemmas of a Feminist Couple Contemplating Marriage” page 434:“…marriage remains thoroughly tainted by being a long-standing buttress for the patriarchal domination of women.”
DECLARATION OF INTENT
MK and Alex, you have come together this day so that God may seal and strengthen your love in the presence of this gathering, and the Patriarchy may further enforce oppressive gender norms. I ask you to state your intentions: Have you both come here freely and without reservation to give yourselves to each other in marriage? As if anyone has free choice uninfluenced by society? If so, answer by saying ‘I have.’ (I have.)
MK and Alex will now exchange vows. (Vows recited)
RING EXCHANGE
MK and Alex will now take off the rings they’ve been wearing for 6 months and pretend to exchange them, just as they will pretend the relationship they’ve been in for the last seven-and-a-half years will be consummated after this ceremony.
Alex, as you place the ring on MK’s finger, repeat after me: With this ring, I thee wed.
MK, as you place the ring on Alex’s finger, repeat after me: With this ring, I thee wed.
PRONOUNCEMENT
In so much as MK and Alex have consented together in holy wedlock, and have witnessed the same before God and this company, having given and pledged their faith, each to the other; by the vestiges of disappointed Radical Feminism, I pronounce you Adult Human Female and Husband.
You may kiss the groom. Or not; your body your choice!
In addition to the highlights below, I continued to co-host the Heterodorx podcast with Corinna Cohn, and make $150 Drawings.
January
My 2023 started with crowdfunding platform IndyGoGo retroactively canceling my independent comic book Agents of HAG, automatically refunding all the backers and denying me access to all records.
I traveled to New Orleans with my pals Corinna Cohn and Shannon Thrace to attend a Quillette Social. It was a fun trip, my first flights since 2020’s COVID pandemic shutdowns, and I didn’t die.
February
I flew again with Corinna to Ireland, to visit our friend Alasdair who had been recently diagnosed with Stage IV cancer. This was my first trip ever to that country, and I feared my last time ever to see Alasdair. (SPOILER ALERT: Alasdair didn’t die. His immunotherapy treatments appear to be wildly successful and there’s a good chance that whatever kills him eventually won’t be cancer.)
I began production of my coolest merch item ever, Apocalypse Animated Lenticular Cards. These were very costly to print, so I crowdfunded some of the expense, this time through GiveSendGo because they supposedly don’t cancel artists. It’s a Christian platform so I did get a call from them later offering to pray for me and my project. As long as the so-called secular world is high on canceling, I’ll take any prayers I can get.
I returned to IndieGoGo with a campaign for Compliance Comix, which is just Agents of HAG (which they canceled) minus the words and pictures. Much to my surprise they didn’t cancel this campaign, so I actually printed them.
March
I embarked on the GENDER WARS Playing Cards. Once I committed to this project, the drawings just flew out of me. Meanwhile I made travel arrangements for events in New York City, Scotland, and Ireland. I may have been cancelled in January, but things were looking up.
On March 21 I came down with Covid. “Good timing,” I thought, “I have more than a month for this to pass before my travel starts. Better now than later!”
I then proceeded to have fevers over 103°F and was pretty much confined to bed for 4+ weeks.
April
Every day, I thought, this might be the day I start to feel better. Every day I continued to be very sick. I could walk from my bed to the bathroom and back. Occasionally I could walk to the kitchen. One time I tried to empty the dishwasher but it made my heart race. I occasionally tried walking, and struggled to the end of my driveway and back. I’ve been very sick before, but Covid was something else. It just pinned me down and didn’t let up.
On good days I could sit at my drawing table and work on the remaining GENDER WARS cards, which I was keen to finish. Somehow, I did.
May
On May 2nd I left my house for the first time since getting sick, to attend a party. I was back to bed the next day. The following day I rode my bike. May was mostly one day semi-normal, one day back in bed. Eventually I returned to almost normal, except for my resting body temperature, which stayed a full 1.5°F higher than it was before. My GP was utterly incurious about it.
I finally made a proper e-store for the Apocalypse Animated and GENDER WARS cards and other merch. Long overdue!
June
My Mom began preparations for moving from the house we’d shared for 7 years, to an “Independent Living” apartment at the local Geezer Place. After a very brief search for a housemate, my friend J was eager to move in in August.
I rode my bikes frequently and gently. I avoided overexertion, as that can cause the dreaded Long Covid. My rides got longer as I got healthier, and finally I rode my first Imperial Century of the year, 100 miles. It felt great.
July
I returned to my usual summer occupation, long bike rides and recovery. Corinna and I flew to Denver for the ICONS summit July 21-22, one of the best conferences I ever attended. I was really inspired and encouraged by the badass female athletes and their supporters.
August
My sister and her husband visited Urbana to help my Mom move. My supposed future housemate J backed out of moving in at the last minute, leaving me with a bunch of problems and significantly less trust in other people. My Mom moved successfully and her new apartment is so nice I’d love to live there myself, but I can’t afford it.
I had some minor digestive health issues, not really unusual.
September
I got to test ride a fancy AZUB trike with battery assist!
I finally furnished my Mom’s former side of the house, which had been eerily empty since her departure. I hung my handmade art quilts around the space and suddenly it became pleasant and beautiful.
October
I had my first AirBnB guests in the Quilt Suite. I rather enjoy being an occasionalinnkeeper. If you’d like to stay here please email me directly for a better rate:
I tried some elimination diets in hopes of discovering what was causing my digestive troubles. I ate no wheat for a couple weeks. I avoided dairy. I avoided chocolate. I could not find the culprit before I flew to Houston, TX to marry MK Fain and Alex Gleason. I’m seldom even invited to weddings, due to my bad attitude and unromantic nature, but these two wanted me to officiate their ceremony! It was a pleasure and an honor.
Then I flew to Denver and hung out with my friend Lisa, who made this amusing little short about Menopausal Woman.
November
Still in Denver, I attended the Genspect conference shortly thereafter. It was fun, intense, and socially overstimulating, but worth it to see all these people I knew from online in 3-D/360°. I flew home after 11 days of travel.
Also after Genspect, the so-called Gender Critical movement blew apart, due to what’s now called AGPgate. I had planned on making a 2024 edition of GENDER WARS cards, but the illiberal behavior of my former compatriots put me off. I’m still not sure if I’ll make that deck or not. Regardless, I have other things to occupy my time and attention, because I finally visited a doctor to discuss my not-resolving digestive issues.
December
“Your symptoms could be colon cancer. I’m not saying you HAVE colon cancer. But you’ll have to get a colonoscopy.” So I was referred to a GI specialist, which usually takes months, but there was a cancelation so it only took days. I had my blood tested and my poop tested and a colonoscopy was scheduled, which would have taken months but — miracle! — there was a cancelation so that too only took days. I was soon diagnosed with Crohn’s Disease and have been on the rollercoaster of “acceptance” ever since. A follow-up with another specialist determined my case is moderate-to-severe, its only redeeming quality that it’s of such recent onset I may escape bad scarring if treatment (monthly hospital-administered infusions of a “biologic” drug called Skyrizi) puts it in remission. My infusions still aren’t scheduled because we’re waiting for “prior authorization” from my insurance. Meanwhile I’m on a low-fiber diet, which as a formerly-healthy vegetarian is bizarre. My attention is consumed reading Crohn’s disease forums, trying to guess what foods might ruin my guts, and getting to know my new masticating juicer that arrived a few days ago (so far, so good). I’m pretty confident my Crohn’s was triggered by Covid, as that is a Thing; I call it Covid Reactive Autoimmune Pathology, or CRAP. It might explain why my temperature has been elevated since my Covid Spring.
On the bright side, I’m receiving lots of love and support, for which I feel much gratitude.
I neither regret the past nor wish to shut the door on it. As we stumble into 2024, I feel mostly curiosity. Whatever happens in the next 12 months, one thing is for certain: more will be revealed!
