What if you're not really sick?*
*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.
Screenshot from Pinterest
Kintsugi is a Japanese word and concept, and one of those foreign words (like Denmark's hygge) that doesn’t have an English equivalent. But kintsugi as a broader concept can be roughly translated as a method of fixing something that makes the repair part of its beauty.
Instead of taking a beheaded porcelain cherub and painstakingly dabbing just enough transparent glue to invisibly reattach the head and seal the wound, someone following the literal practice of kintsugi might (still painstakingly) use lacquer mixed with molten silver or gold to create a beautiful sealed crack that is meant to be noticed. (Or, riffing on kintsugi a little, maybe you’d use bright-red hot glue to christen your new zombie cherub into its afterlife. That’s probably what I’d do.)
Mild spoiler alert: In the latest season of Amazon series “Man in the High Castle,” in anger about something unrelated, the Japanese trade minister broke a precious porcelain cup that belonged to his baby grandson. This rage and the words he had spoken caused a rift between this normally gentle man and the rest of his family, and the cracked cup became a symbol of this distance and loss of trust. He then decided to use kintsugi (giving the episode its title) to put the cup back together, creating an obvious but attractive fault line where the break had been, and the start of a new beginning with his family.
Inherent to kintsugi is not pretending the past never happened. After something breaks, it’ll never go back to how it was, and it doesn’t mean it wasn’t a painful process or that everything’s all better now. Or that you don't regret what happened. Or that it was your destiny or for a greater good necessarily.
Screenshot from Amazon's "Man in the High Castle"
But the beauty that came from that negative experience--that argument, that scrape on your knee, that major surgery--would’ve never existed without the trauma that shaped it, and there’s not much left to do but give up or appreciate what’s left behind. You decide to take the shambles of what was and construct something different but wonderful, to move forward while not forgetting what happened. In fact, you’re drawing attention to the incident and how it changed you, or people around you, or everything.
My biggest abdominal surgery, in 2009, was technically minimally invasive--the tiny laparoscopic incisions healed faster and better than I’d hoped, and what was left was just a handful of pale, barely puffy scars. You wouldn’t know to look at me that I lost 10 inches of intestine, a job, a year of school, and a crappy friend or two.
It definitely cracked me, that surgery--I slept 11 hours each night, and awoke weepy and adrift each morning (well, afternoon). Should I have gone back to school right after having the surgery? Should I get this degree at all? Was I even smart enough to get this degree? Shouldn't I be feeling better by now? Should I be watching so many Lifetime movies? Was I going to go broke and have to get a job or go back to school before I was ready? Was it too soon to try to eat fruit again? Should I be showering more often? (No; maybe not; yes; no; probably not; yep; yes; definitely yes.)
But you might notice now that I’ve gained more than 20 pounds (no need to mention it to me), the ability to eat insoluble fiber, a husband, a dog and jogging partner, a master’s degree related to health and a steady job using it. Would I have gained many of these things anyway without ever having had surgery or Crohn’s? Yes, I’m sure I would have. But I’m just as sure that I wouldn’t have all of them, and I wouldn’t be willing to spin a health roulette wheel to find out how it could all shake out differently.
I tried at first to make the surgery mean I was CURED. Hallelujah! Despite the fact that surgery doesn’t do that for Crohn’s and I very well knew that. But I thought it might cure the worst parts of Crohn’s--the constant bathroom awareness, the relentless exhaustion, the hating of its limits on my big plans to join the Peace Corps and be an astronaut (not actually things I knew I wanted to do until I found out I couldn’t, but still).
Screenshot from makezine
And the part of having to just BE a sick person. When I went back to school, I told people I was forced to take time off because my appendix had to be removed. While that was technically true, it only had to come out because the appendix was attached to the scarred intestines that truly needed to come out. But the fudged appendicitis story was a quick, easy-to-relate-to tale, with a nice, neat “glad you’re feeling better now!” ending. It made sense for casual conversations with classmates, because no one really talks about chronic illness openly, not even in health-related degree programs (I found that almost everyone I spoke with one on one for any length of time had some personal health problem). I was even awarded a scholarship for people with IBD and dodged calls from the awarding organization, them leaving increasingly impatient voicemails asking for a bio to post on their website. (This was years before I had a blog sharing personal anatomical details with literally tens of people each month.)
When animals get sick, their instincts tell them to hide their limp, or if they can’t, to hide themselves--or else get eaten. A dying pet cat may be found on a low bookshelf curled into a thinning ball, when it would actually likely appreciate some cautious petting on a warm lap. And sometimes these basic urges should be followed--to recuperate from the flu or a flare, you need to avoid exhausting, microbe-rich holiday parties and stream “Man in the High Castle” instead.
But when you're feeling a little better, by just talking to someone else with Crohn's or participating in a small support group, you can take your horrible experience (having to drop out of school because you lost 30 pounds and couldn’t keep food down) and form it into useful or reassuring advice for someone who’s facing a similar decision right now, and vice versa.
There’s a common wisdom around that “no one wants to hear about your personal problems or medical issues.” And that is so very true when you’re talking to your co-workers about an abscess on your butt. But imagine if you had that nasty abscess and had NO ONE to talk to about it. Imagine if no one had EVER written about ANY part of the gritty parts of Crohn’s, and then here you are with Crohn’s and good luck! Be sure to ask your doctor which brand of toilet paper to buy* when prepping for a colonoscopy, and how to cover up odors in a bathroom at a crowded house party. Thankfully, we have books and blogs sharing these non-medical details, and models taking the mystery and shame out of showing what it looks like to have scars or ostomy bags.
As Carrie Fisher put it in a 2016 interview with NPR’s Terry Gross:
“Oh, I think I do overshare … it's my way of trying to understand myself. I don't know. I get it out of my head. It creates community when you talk about private things and you can find other people that have the same things.
“Otherwise, I don't know--I felt very lonely with some of the issues that I had or history that I had. And when I shared about it, I found that others had it, too.”
And as Carrie Fisher also said (and fictional Trade Minister Tagomi demonstrated): “Take your broken heart, make it into art.”
* You probably already know which toilet paper you like. But in case you don't, for a colonoscopy or for any day, you want to not only focus on softness (not the one-ply institutional scratchy paper) but also on a brand that won't leave fluffy residue behind that will irritate your skin and just be generally gross. I avoid Cottonelle for this reason. With no official (or unofficial, yet) endorsement or compensation, I use Seventh Generation toilet paper and baby wipes. Charmin also swears by having this quality.
Whammed over the holiday break
I wouldn’t have expected I’d spend the days right after Christmas holding a personal one-woman YouTube remembrance ceremony for two of my childhood (and then adulthood) idols. But there I was, jerking my emotions back and forth from the gleeful “Wake Me Up Before You Go Go” to the broody “Careless Whisper.” From the young and nervous Carrie Fisher “Return of the Jedi” Johnny Carson interview, to the dark but still light “Oprah” interview with her mom, Debbie Reynolds. And then we lost Debbie, too. My brain was a melodic fog of catchy hooks, twisty hair, plaintive wailing, blaster guns wailing, white robes and white booty shorts.
George Michael -- along with Michael Jackson -- was the ultimate in coolness to my 5-year-old self. My sister was 13 at the time and we weren't strictly parented or Amish, so we watched a lot of "Who's The Boss?" and MTV in our house (my fondness for Tony Danza did not stand the test of time). I had a thing for boys with an unusual level of gravitas for their ages who were excellent singers and dancers, and had "Michael" in their name. AND two first names for full names. And wore statement gloves.
While on this journey through my departed childhood idols, admittedly I was not thinking of Crohn’s very much. But when re-reflecting, I was (sort of) able to make (weak) connections. It's not like I tapped into some great truth or deeper meaning in his songs (though it's definitely there! That's just not what I'm doing). Mainly, I just wanted to think about George Michael some more, and this column is me (and you, if you'd like!) doing that.
“One More Try” (Teacher)
There are things/ that I don’t wanna learn
The phrase "I don't want to learn" is one I use often, when I am too exhausted or exasperated to learn how something works (like a microwave at someone's else's house), and I just want it to be done for me. I can deal with the medical parts of having Crohn's, but for some reason, dealing with the financial side of it is what drives me over the edge. Maybe it's that I feel like it's forcing me to pay for the privilege of having Crohn's -- when if anything, I should be getting paid. So I have willful ignorance that has manifested in a new wing constructed to my Quest Diagnostics Barbie chalet (a la Titus on "Unbreakable Kimmy Schmidt").
“Everything She Wants”
I don’t really have anything for this one. But, man, is this a great song. Same for “Father Figure.” And "Careless Whisper" is worth a Google for damn sure.
“I’m Your Man”
“If you’re gonna do it, do it right.”
People with IBD often opt out of things because they can’t do them the way they want to. This is always a judgment call -- is it pouting and self-induced exclusion, or is it a healthy way to deal with an unhealthy situation? If I'm in a certain frame of mind, I’m not going to attend the work Christmas pizza party and eat salad with a smile slapped on my face, just to be a good sport and participate, OK? Life is too short for me to spend more of it brooding over how much I hate you for being able to eat crap. And explaining why I'm bringing my own food to a work-catered event. It’s better for our relationship.
If I'm in a certain frame of mind, I’m not going bar-hopping if I can’t drink, because I’ll be hopping mad before the night’s through. It's not a universal excuse to opt out of life, but it is a valid decision to make if it feels right to you.
Freedom! '90 (but watch "Faith" first for context)
What every IBDer aspires to. Freedom from health insurance struggles, searching for bathrooms, tracking prescription refills, injections, procedures, surgeries, exhaustion, moon face, 'roid rage. But I have learned a lot along the way about what to fight for and what to leave behind. What truly matters and what is just eating one or two Russell Stover truffles out of my Christmas stocking because I'm sorta hungry but not really and shut up.
As George put it:
"Today, the way I play the game is not the same;
Think I'm gonna get myself happy."
So sad that this was George Michael’s last Christmas. I would’ve loved to have had one more try at seeing him perform. I took him for granted, like Prince and David Bowie; someday, of course, I would see them, I figured. I'm inspired by him channeling his inner struggles and his grief into his music, bravely letting other people view his pain and recognize themselves in it; anyone who has ever blasted anything from Nine Inch Nails to Alanis Morrissette after a breakup knows how cathartic this can be.
For more about appreciating our best musicians while they’re still alive, check out Slate's Wonder Week about the still-living greatness of Stevie Wonder.
Share this with your relatives when they badger you about not eating their homemade whatever
Screenshot from mcsweeneys.net
If you have any dietary modifications at all and you haven't seen David Kadavy's "Regarding Your Reaction to My Gluten-Free Diet" on McSweeney's, please go there now. You don't even have to come back.
#2 through #7 hit closest to home for me:
"7. I also used to thoroughly enjoy croissants. It’s reassuring to know that you would 'die' without them."
Oh, and #11.
It was posted in time for Thanksgiving, but in preparation for Christmas I'm revisiting it. And relishing the idea of printing up and passing out cards with each of the 13 items on them as needed.
Kadavy perfectly skewers the blurtings of hapless people bumping up against things that aren't like them and are therefore weird, stupid or neurotic. People seem to think that they're having an original, thoughtful reaction that they owe it to you to share. I think it was David Sedaris (I tried Googling it, OK? I couldn't find it, and I don't feel good and I miss gluten) who described watching people in a novelty shop pick up fake eyeballs and hold them up to their own eyes as a lazy "joke" for whoever they were shopping with. Over and over and over again. And how each person seemed to think this was an inspired spark of whimsy from his or her unique imagination, not the obvious thing that everyone tries first.
Maybe she's never really had the logic behind these behaviors challenged before, they think to themselves. Maybe everyone's been too politically correct to tell her that her gluten-free dinner rolls suck and those bags under her eyes are from a wheat deficiency. Maybe I'm gonna be the one who saves her from herself.
If you have IBD, you are that shop owner watching people hold eyeballs up to their own eyes all day, every day, thinking they're actually doing something. We have heard it all. Let me save us both some time. I have thought this through. And we bought wheat dinner rolls just for you.