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.)
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 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.
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?
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?
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.