Normalcy is a scam and broccoli is a narc

(On a return to eating and attempting normalcy on a deadline.)

This is the second edition of Bite Back, a new newsletter from Tess Koman.

The last time I ate broccoli was in 2010. (For those who’ve lost track of time, 15 years have passed since then!) It was the only vegetable in the watery salt bath of college cafeteria mixed vegetable soup that wasn’t in my regular rotation at the time. My Crohn’s, gut-wise, was OK those days. My Crohn’s, rectally, was not. :) I ladled myself a container full and sat down for lunch with my friends. I remember so vividly taking a beat to stare at the condensation on the plastic-5 lid before taking the first bite, knowing in my heart, maybe, that this was a bad idea? The lid was freckled with, like, maybe 20 individual broccoli buds, a pretty lil Brassicaceae constellation with no florets to be found. “They’re so tiny,” I figured. “There’s no way they’re actually going to fuck me up?”

The soup tasted mostly like waterlogged carrots. I crushed it anyway. I proceeded to liberally art just fine for the next three hours, accomplishing something special and important, I’m sure. I spent the next three hours monopolizing one of four communal dorm poop stalls, weeping to my roommate that I needed something softer than one-ply because I couldn’t even tell where the diarrhea was coming from at that point but that it burnt so bad.

Diarrhea, famously, usually comes from one place. At some point early that morning, I realized the inability to pinpoint the origin of both the diarrhea itself and the noises exiting my body was A Bad Thing. It was, in fact, the night I realized the two might not be coming from the same place. As clearly as I remember that wet, speckled soup lid, I remember swirling to kneel in front of the toilet during one of the reprieves between the noises and the stool itself, knowing that pause was going to give me an answer I really, really did not care to find.

I found myself face-to-face with a fibrous Orion, his belt made of 15—maybe 20—broccoli buds. Each one was completely intact, just small enough to have taken the path of least resistance and emerge unscathed. (When you develop a fistula anywhere in your digestive tract—your rectum included—anything passing through is, according to my surgeons, going to “take the path of least resistance” to get where it needs to go. That often means fluid will flow through the fistula and come out of you that way, rather than passing over the fistula’s opening and continuing toward, well, diarrhea’s famous singular exit.) This is my way of telling you those fucking broccoli molecules were all I needed to see to know that (1) I’d developed yet another rectal fistula right up in there and (2) I’d never eat broccoli again.

Saying goodbye to a different traumatic Union College toilet stall circa 2013.

How we’re doing right now

…Until my intestines exploded six months ago. And I came out, just barely, on the other side without any of the intestinal pieces that made broccoli a no-go in the first place. In fact, after months of mandated bowel rest (see: no food, no beverages. Just liters of personalized shakes infused into my veins every day.), I came out on the other side with an order from my doctor to prioritize preserving my health and scant remaining bowel. This means making legitimate efforts at incorporating things into my life that have scared the fuck out of me for years, like, say, broccoli. (And blueberries and mushrooms and carrots and kale and and and and, but those each have charming and terrifying stories for another time.)

The last time I ate broccoli, I was also out every other night singing things like “Club Can’t Handle Me” and really meaning that. I’m 33 now, and…all clubs everywhere absolutely could handle me. That juxtaposition is keeping me up at night. I like broccoli, IIRC, and I understand why it’s near the top of my new nutritionist’s list of “if roasted or pureed into mush: top priority” vegetables to slowly incorporate back into my chewable food routine—one I am keeping track of every hour to figure out what works and what doesn’t with my still-angry bowels. I don’t know why the broccoli of it all is so vexing. My best guess is that it is both a legitimately challenging exercise in deprogramming my Sick Person Brain (“What if something awful happens? They told me it wasn’t going to, but every other time, something awful has happened. How could they possibly and in good conscience tell me something awful isn’t going to happen??”) and a humbling mandate: Start to try to live “normally” or else.

The former I’ll never fully be rid of; the latter looms large after every medical crisis I’ve ever had. How are you meant to take steps toward normalcy when you are still so far from normal? What happens if you don’t hit this “normal” on deadline? Whether it’s a return-to-work one or the haltinglyYYYyy slow withdrawal of offers to help from those around you? The pervasive “you’re still not able to lift your toddler out of her high chair this far out past surgery?” for instance. The eyebrow raises upon “you still need me to run to the grocery store and get broths for you? Aren’t you supposed to be trying to eat again?” for example! You know, the one that precedes the last time you’re asked that kind of question before you have to vomit inside and softly beg others for help each and every time you need it?

What we’re (maybe) trying to do about it

I asked Samantha Reid, a fellow longtime Crohn’s patient and the VP of digital engagement for the Center for American Progress, about how she deals with of normalcy on the horizon when she is unwell. (Full disclosure: Sam is a longtime internet friend of mine; we first connected over Crohn’s-type things on IG years ago.) “I have built up a number of defenses from having to actually to be normal,” Sam says, “but if you pull back the hood, you’d see ‘oh, this is a delicate web of accommodations puttied together so I can appear as a normal person in the role I’m in without prefacing everything: ‘Oh, by the way, I’m very sick.’”

It’s crucial to know what resources are at your disposal at moments like these, she notes. As it pertains to the workplace, Sam stresses the importance of familiarizing yourself with intermittent FMLA (“a resource so many people are not familiar with”) and your workplace’s union organizers. “People don’t often tie unions and chronic illness together, but if I am a sick person, I would like my job to be at union-represented org.” As it pertains to real life, Sam leans hard on community in the form of meal trains and trying to ask friends for help when she really needs it.

Dr. Laurie Keefer, an internationally renowned Professor of Medicine and Gastro-Psychologist at the Inflammatory Bowel Disease Center at Mount Sinai's Icahn School of Medicine in NYC, starts by noting the idea of “normalcy” is fraught and oftentimes at odds with actual healing: “Some people will try to define a ‘new normal’ after recovering from a specific health event (a surgery, the birth of child), but it can be hard to think about things as normal or abnormal when you live with a chronic illness. It’s very hard to [juggle] normalcy and at the same time give yourself the grace to adjust, so I usually recommend the latter.”

She also emphasizes the importance of bucketing within your priorities. Say you find yourself unwell and up against a normality deadline. Make! actual! lists! I give her mine as an example: My husband is going back to work after time off that coincided with my recovery. Everything he’s handled while he’s been off—meal-prepping, getting our daughter to and from daycare, walking our dog, physically and emotionally propping me up near-constantly—will fall to me. And while we normally split these duties as best we can, I am currently unemployed and very homebound given the stage I’m at in my recovery, so…my turn! Now what?

Dr. Keefer suggests tiering the most pressing or reasonably attainable of these responsibilities: “Everyday activities…are a way to measure progress, a sign of endurance, healing, and motivation, all of which take time to recover after a health event,” she explains. “Look at it in stages—establish a small, measurable, achievable, realistic, time-sensitive (SMART) goal. Get out of bed and sit in a chair for 10 minutes a day, for example, and modify it in either direction (up to 20 minutes, add a book to read, down to one minute if needed) until you can be successful.” Managing your own expectations of what can be done within what needs to be done is crucial at times like these, she notes. Next week will bring another host of priorities and you’ll adjust your top one then, if necessary.

So! I have a lot to do this week. I’m choosing to do what I have to do to keep my baby happy and get her where she needs to go. As a gentle sub-goal, I’m choosing broccoli. I might see if cauli is an OK sub, if I get too scared and need to bump it to next week. I’ll keep you updated.

How we’re eating

Blitzed before the orzo add (for intestinal reasons), Ina’s creamy tomato soup with grilled cheese croutons is really working for me right now, spiritually, digestive-ly, etc. I will otherwise perhaps burn the fuck out of some broccoli florets and cover the whole head in parm, but again—will keep you updated.

In other news…

The eating of it all has been all-encompassing. Next week, I’ll get into what it’s actually like to not eat for months and being forced to work my way back into it with objectively bonkers restrictions (ones that, in many ways, many people struggle with). Also, I’m supposed to be launching a new YouTube series on the same subject right around the same time.

In the meantime: Tell me what you loved, hated, or felt indifferent about re: this first real send. I worry you’ll want more BTS food media content, and that’s…fine. I think I’m ready to make that tell-all leap. Otherwise, I’ll keep going with this sick shit. OK, mwah mwah mwah mwahHHhh!