Animator. Director. Artist. Scapegoat.
“I admire your discipline,” said a friend, referring to my extremely strict, narrow Crohn’s diet. But there’s nothing to admire, because it’s not SELF discipline. It’s being subject to a brutal, sadistic “disciplinarian” that punishes the hell out of me if I make one false move. If you had this taskmaster you’d be “disciplined” too.
(Not a $150 Drawing, but looks like one.)
Sometimes I miss food.
By food I mean Indian food, Thai food, Mexican food, salsa fresca, salads, pizza, pasta, and my homemade bread and soups: tomato, lentil-kale, vegetarian chili. Tortilla chips, potatoes with skins on, sesame seeds, nuts, herbs, and Numb Oil Tofu from Golden Harbour.
I miss eating with others. This genuinely lovely article by Brandon Showalter felt like a knife in my heart:
“Why have I been doing this, you ask? And how do I do it in light of such deep and profound differences among us? It’s actually not that complicated. As my past and present housemates can attest, I’m an unabashed foodie, I have a knack for hospitality, and extending it is an expression of normal life. I may as well give away what I love. And who doesn’t love to eat?”
I love to eat, I just can’t.
A month and a half ago I drastically restricted my diet. Fiber was out; fish was in. That was harder than it sounds, because as a vegetarian (and occasional vegan) since age 17, I prided myself on nutritious, whole-foods, hippie-style cooking. I would eat seafood a few times a year, but only away from home; I did not store or prepare it in my own kitchen. Same with eggs: an occasional restaurant treat, not on my shopping list or in my fridge. With my Crohn’s diagnosis I surrendered my dietary ideals, overcame my squeamishness, rose above my principles, and started making seared Ahi tuna steaks and scrambled eggs. I now consume about 3 times more lactose-free milk than I used to, and zero beans and lentils. The exquisite batch of vegetarian chili I made in November languishes in my freezer. I should give it away already but that would be yet another admission of defeat.
Friends pity me now, which I enjoy. But the fact is, many years before I developed Crohn’s, I would sometimes I lose my appetite for weeks at a time. Occasionally I have eschewed eating due to utter boredom and frustration. Even without any dietary restrictions (except my refusal to eat birds and mammals, which would have put me at a disadvantage at Brandon’s house anyway) food has, over the years, lost its brilliance. I have longed to recapture the thrill of my early 20’s, when the world was full of new flavors and cuisines, and every California burrito was a revelation. Age has dulled my tastebuds, but more than that, experience: I have tasted damn near everything already, many times. A memory of food usually exceeds the real thing, so eating is often tinged with disappointment: that tom kha phak is good, but not as good as that place in San Francisco in the 90’s…
A capacity for enjoying food is a blessing and shouldn’t be taken for granted.
On the brighter side, Crohn’s forced me to discover juicing. After several weeks without a salad I despaired of ever eating anything fresh again. Then I learned that a quality juicer would remove the insoluble fiber from just about any produce item. Some other Crohn’s patients wrote about doing well with fresh juices, so I ordered an entry-level masticating juicer off Amazon (since upgraded), bought a fridge’s worth of fruits and vegetables, and set off on my first culinary adventure in decades. Not only was I getting quality nutrients that didn’t make me crap my pants, I was also discovering new flavors and reawakening an interest in food — or more accurately, drink.
I can’t go out to eat these days, so I try to lure friends to my house for juice. We can’t break bread, but we can sip pineapple-ginger.
Woman does not live by juice alone (unless she’s on a “juice fast” but I’ve lost enough weight already thank you) so I continue to ingest white rice and peeled potatoes and fish and cheddar cheese (not at the same time! that would be gross) which isn’t really that bad. A person can get used to anything, and after a month-and-a-half this is just how I eat now. It’s pretty boring, but then so was almost everything, before.
I am missing much….
But really, I’m not missing much.
This recipe has it all: Prebiotics (onions)! Probiotics (miso)! Phytonutrients (parsley, dill, carrots, celery)! Low fiber (because the veggies are juiced not cooked)! Potatoes (peeled)! Flavor (some, we’ll take what we can get at this point)! Plus, it’s vegan.
Low-residue diets, of which my low-fiber diet is but one, help some (but not all) IBD patients manage symptoms. If a Crohn’s patient really wants vegetables, we are advised to fully cook and then puree them. But I now have a JUICER which can take the insoluble fiber out without cooking.
Instead sautéeing the traditional mirepoix, this recipe starts with only onions (which supply a tolerably small amount of fiber, including the prebiotic inulin) and a bit of garlic; the celery and carrots get juiced, along with parsley and dill, and added last.
6 to 8 medium russet potatoes
2 medium onions
1 tsp crushed garlic (optional)
1 T olive oil
4 celery stalks
2 to 4 carrots
fresh parsley (half a bunch? depends on size of bunch)
dill (ditto)
3 or more vegetable bouillon cubes, or 4 teaspoons homemade veggie bouillon mix*
1 to 2 T fresh miso
1/4 cup hot water
*Homemade Veggie Bouillon mix:
1 part finely ground/pulverized nutritional yeast*
1 part fine table salt
1 part veggie seasoning such as Trader Joe’s 21 Seasoning Salute, Mrs Dash, or equivalent
Mix ingredients and store in a jar.
*Pulverized Nutritional Yeast:
Place nutritional yeast flakes in a clean coffee grinder and pulverize. Store in a jar.
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”
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.
Crohn’s sucks, but at least I have a “job.”
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.