*You are actually sick. So am I. But I'm going somewhere with this (but spoiler alert if you haven't watched FX's Legion).
Screenshot from "Legion"
I said “spoiler alert” because I have a near-phobia of spoilers. More like PTSD, but the S is for “spoiler.” While on a school bus for a high school field trip, a fellow freshman blabbed the name of the killer in the first Scream movie, and my hyper-vigilance began. A few spoiler "booster shots" over the years, and the aversion was cemented; I don’t even read movie reviews any more.
But the only thing I’m really spoiling is the basic premise of my favorite new TV show, FX’s Legion. Here goes: A young man with schizophrenia is told (by a band of misfits like himself) that he does not actually have schizophrenia — he actually has superpowers, like they do. He's the most special mutant out of a whole community of special mutants -- thus satisfying the strong human desires for specialness and belonging, despite the two often being incompatible. The thing that made him different that he thought was a big problem turns out to actually … well, it’s still a really big problem, but a decidedly more intriguing and sexy one. And one that might be controlled without medication. (Just as an aside, I have to mention my dismay when a character in last night's episode equated schizophrenia with multiple personality disorder. No no no NO.)
A few years ago, I decided I did not have the Crohn's problem that my doctors were telling me I had, because I no longer was satisfied with the solutions they were presenting. I did a lot of reading and went to new, intriguing, sexy doctors — a whole community that opened its arms and welcomed everything about me but my health insurance.
The new doctors told me that what had been labeled "Crohn's" was really the collective manifestation of a microbial imbalance in my gut, a genetic mutation that affects my cells' mitochondrial development, and a pseudo-dormant viral infection. These were all calling the shots behind the scenes, and my mainstream medications were addressing none of these underlying factors. But all of these could be flung out of the driver’s seat of the speeding car that is my Crohn’s, replaced with small-batch probiotics or high-dose antivirals or ultra-bioavailable vitamins, and everything in my body would start to fall into its rightful place. And I wouldn’t need those medications that constantly reminded me — by the mere taking of them, or by their obnoxious (or worse) side effects — that something was wrong with me.
A whole community opened its arms and welcomed everything about me but my health insurance.
I became obsessed with the search for what good things were missing from me, and what bad things were lurking within me. Lots of full-fat coconut milk and fermented apple cider vinegar, you say? Cook with coconut oil only? Replace cane sugar with somehow even more coconut? Yeah! For someone who already had OCD, it wasn’t that hard to fully fling myself into the extremeness of the new routine, at first.
I was subjected to experiments — not like the (*spoiler*) MRI machine or memory-travel-device thing that Legion’s David used, but temporary forays into experimental, expensive, and risky medications that wouldn’t be long-term and could fix things for good. Really fix them, not just ameliorate, not just put me into remission. Not an absence of bad, but a presence of good.
It didn’t work. Actually, it did work, for a little while — for about two weeks, I felt fantastic. The new diet and 12 new supplements I was taking was still an interesting challenge, not the socially isolating, financially draining and boring nuisance it quickly became. But then things kind of leveled off. It's possible I was high on hope. Or it's possible the "bad" foods were only aggravating the underlying cause behind my Crohn's, and what I call feeling "fantastic" is another person's "I had the flu last week and I'm at about 70 percent." But I trudged on, Amazon boxes of liquid vitamins and flaxseed on my doorstep daily.
Six months into my master dietary plan, I got a nasty C. diff infection, and all the potential progress was flushed away before I could have a colonoscopy and truly have it evaluated. Truly prove that I was good and whole underneath it all; that I wasn’t completely broken and was salvageable. But there's no denying that you're sick when you have C. diff -- everything about it is unmistakably negative. I treated it, and it went away quickly, and stayed away (so far), but it had triggered a Crohn's flare that lingered for months. (Also, I had developed a food intolerance to coconut.) Tired, sad, and scared, I relented on my Katie-isn't-really-sick campaign and increased my mainstream Crohn's medication.
And I feel a good bit better. I don’t regret increasing my medication. But I also have plenty of new side effects from it -- and also it didn't work well enough, and I have to change medications yet again, and who the hell knows if that'll work.
I tell myself I’m not too broken to be fixed. I tell myself I’m not broken at all -- these things just happen, everybody has their own issues. I know that's all true. But I don’t feel it. I had a cause, a fight, a preoccupation when I was pursuing alternative medicine. Now that I was back with mainstream medicine, the fight was just against my own body, and how it responds to the world we live in.
Does my immune system know something I don’t about an apocalyptic plague that won’t befall people with autoimmune issues?
Sickle cell anemia is the result of an adaptive mutation gone too far. Inherit one copy of sickle cell, and it’s protective against malaria — and more people with sickle cell trait are found in regions with high rates of malaria. But inherit two copies, and you’re sick with a debilitating and deadly disorder.
Is the sickness within me, something internal that's broken? Or is it something (or everything) about Western society that’s making me sick? There’s the refrigerator hypothesis, antibiotics, pollution, air travel, hand sanitizer. Like sickle cell, do I have too much of a good thing that would be protecting me from illness if I had less of it? Does my immune system know something I don’t about an apocalyptic plague soon to hit Atlanta that (spoiler about a related movie) won’t befall people with autoimmune issues?
I don’t know whether I’m sick. I know that in the world and society I live in, it’s really hard to live the life of a woman whose kryptonite is food at all restaurants, but also dairy, eggs, grapes, cane sugar, almonds, carrots, beef, turkey, and peanuts. Oh, and NO GRAINS of any kind. I had to give up the diet when I started becoming really angry at the mere site of a field of corn. I had to eat in advance before going out for dinner and drinks with friends. I found my true superpower was willpower — I turned down desserts I still regret not eating. Do you know how hard it is not to eat a Halloween-themed green-tea witch cake while you’re in Tokyo? If you’re me, it’s very.
It's not necessarily a dichotomy, a bi-polar (ha) set of options. Legion’s David might have superpowers AND schizophrenia, or some other mental health issue. And those of us with IBD might have truly disordered guts and immune systems AND be made sicker by the food and air we consume. And maybe we're resistant to whatever new plague is brewing on distant shores. Or maybe there's no benefit to it, except whatever wisdom and fortitude we manage to pick up in the process. Oh, and we get to flash our “Crohn’s cards” and cut to the front of bathroom lines; mostly that.