My Gordian Knot
Waking up with one cheek firmly sweat-stuck to the cool-pearl tile floor of some restaurant’s ratty public bathroom and the other two—my bottom two—exposed, aiming upwards like a smoking cannon that had just fired, was not exactly the way I’d like to spend my Friday nights.
I moved my face against the marrow-touched floor, hoping I hadn’t soiled anything more than my dignity. I laid there for a moment or ten, embracing the relief the tile gave and breathing in and out on the road-salt, slush tracked, and shit-and-piss-particle stained floor. The snake of intestines, my own Gordian Knot, coiled tight into a “u” around my colon and burned in a red-hot Marsian anger. Instead of in my chest, Ridley Scott’s bursting alien thrashed in my stomach.
I watched, with my one eye free from the floor, two bodiless boots walk by my stall. I looked at my watch, but it was useless. I hadn’t remembered when I made my flight from the table. Someone was waiting for me out there; that much I knew.
The faucet sprang to life. I drank in its sound. It, with the ice-cold caress of the tile, was pacifying. The coolness of the room brought in the numbness.
* * *
At 15, I was diagnosed with Crohn’s Disease: an auto-immune, invisible, and inflammatory bowel disease.
I would stay up into the early morning hours googling images of removed rectums, severed colons, and the chronically ill. They were twiggy, far below my perennial 17th weight percentile. They looked like, with their pale, bloated skin and sunken eyeballs, aliens or bowl-less fish.
My own hospital visits, in those early days, were frequent and damning; my body was unable to determine which organ was friend or foe (my white blood cells were blind and liked to work overtime), and I’d spend hours daily in the bathroom or on bedrest. Imagination, here, was a reverse-blade. I began coalescing, though hazy and terror-induced midnight thoughts, a bleak future where my digestive track was the anchor—less a crutch and more a fetter—that would forever tie my life to the graveyard harbor of a sickbed.
When I was introduced to Crohn’s I was put into a digital support group with four other similar aged teenagers, each had their own IBD afflictions running the gambit from mild to severe (inflammation aside, imagine a Wong-Baker pain scale starting at 8 and ending at 12). Two of us graduated from college, one had succumbed to stress and forced herself to drop out in her Junior year, another couldn’t find the money to support Remicade and 21st century tuition, and the last of us, after two failed colostomies, is dead.
Moderate to severe Crohn’s takes everything an afflicted has, their energy, their desire, their sense of being a person rather than a permanent patient until there is nothing left to cope with. At the moment, for these victims, there is no cure. No chemo process to give a fighting chance. There’s just the sobering back-of-the-mind thought that healthy progression for an IBD patient, for many auto-immune patients, doesn’t exist: regression from remission, while always foreseen is, well, forever inevitable.
* * *
During the moment above (and in many like it), in which my bathroom romp has supposedly cost me the rest of my meet-up with an Ivy League interviewer and—judging by the crumpled-up college-ruled page with my name at the top that was left on her empty plate when I returned—a shot at a getting in, the pain, crippling, could be surmounted, but for someone with autoimmunity this still leaves the big three—embarrassment, fear, and worthlessness.
The tinge of my red-faced mortification was matched only by the mess I had made in the toilet bowl bowels of that Boston bistro: Volcano Ass (a rather affectionate nickname my brother had given me) had done it again.
At dinner tables cumulonimbus cloud thoughts of mashed potatoes heaps, grease vats, and vegetables as edible daggers sparked to angry existence. And as I chewed, and chewed, and became a food magician—hiding half-bitten morsels into napkins and grinding food to medium-rare pulps—and then chewed more, the more it seemed I, myself, was being devoured, eaten, mercilessly, by my own humiliation and grief.
I was held hostage by the idea that I could at any moment, like so many auto-immune sufferers, wake up to the idea that the most adventurous my body would allow me to get would be within the cyber-sterile walls of my word processor.
I’m young, I had thought, too young to be a lifelong patient.
Crohn’s, like many chronic diseases, compromises not only its victims’ sense of self, but also their ability to communicate with those around them. “Pain is always new to the sufferer, but loses its originality for those around him,” the 19th century French writer, Alphonse Daudet, observes of his battle with syphilis. I can’t recall how many times I’ve received the advice to just “eat better,” or the crude matter-of-fact, “you look fine to me.” The fatigue I felt about my peer’s criticisms must have been mirrored in how they viewed my complaints, I’m sure. But the ebb and flow of an auto-immune disease can turn hope chilly in a second. For my support group, the first thought when waking up was if today’s pains are the best it’s ever going to get.
In Meghan O’Rouke’s fantastic essay, What’s Wrong with Me?, she dives into the Tartarus pits of auto-immune disorders. There is a massive lack of knowledge available. A 2004 study found that “nearly two-thirds of doctors … felt inadequately trained in the care of the chronically ill,” and another study reports that “eighty-five percent of Americans can’t name an auto-immune disease.” Fifty million American have some type of auto-immune disease; the American Autoimmune Related Diseases Association claims it’s more prevalent in our populace than cancer. These statistics in conjunction are absurd.
I have to admit that I’ve been a terrible ambassador for Crohn’s Disease and autoimmunity. As I’ve aged my self-serving coping methods have changed, morphing from deflection to self-deprecation (or, maybe, self-defecation?) to humor. None of these tricks do more than attempt to belittle a disease that is insatiable.
Sharing a bit of my story is perhaps a chance to make up for it.
You know when you have a rough cold and you just think, “man, what would it be like to just be able to breathe through my nose again?” What does being healthy feel like? No one tries to be conscious of it. O’Rouke writes:
To be sick [with an auto-immune disorder] is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living.
Auto-immune victims put up their thespian carapaces—a molting beetle that seems to shrink inside of its new form. There’s a constant “loss of self” eating away at you, as you attempt to portray health. To get through a standard day, aspirations, activities, and ambitious fall to the wayside. And what are we if we aren’t what we can do and what we want to be?
I identify, now, among a list of things I can be, as someone with IBD. Because it is without a doubt the most important thing in my life. It’s a timer. It’s the promise that not every day is given. I want to be DFW, I want to see everything. I don’t want to be a lifelong patient; that’s not what I’m identifying with. I identify that chronic illnesses will leave an emptiness behind in their sufferers, but that feeling of bodily betrayal can be used as fuel. I use that installed hollowness to create and experience; I write.
Everyone yearns to be understood. A sick patient more so. Isolation and misunderstanding, in my experience—whether it reared its head in my inability to go out adventuring with friends or in my fear of eating out at restaurants—is worse than any crook of the stomach pain. But with writing I can bring someone into my human world for a moment or ten. I can let them understand. This reflective practice works—like an archaeologist—to peel away the layers of self and crack the shell forming around you. It’s the perfect antibiotic. At 15 I was unable to sketch a simple story, unable to figure out where my life was headed, but, now, prose is my lifeblood.
If I can manage my stress, prevent feeling that the disease takes more than I can give, and fill these now empty spaces with words and empathy and understanding and resilience, I can prove that, as O’Rouke writes in the New Yorker,
I had an auto-immune disorder, but now it seemed to have me.
That’s the power I find in my IBD narrative. And it’s not a vaccine; just having it isn’t going to temper your body or mental game. It’s a choice to live at 80 or 90 or 50% while adding a unique angle that those who’ve given in can’t offer.
Auto-immune diseases suck. Your body will always be your largest deterrent in life. They’re a Gordian Knot—a twisted puzzle that the longer you tug at the tighter it gets. And there’s no clever solution or right answer. Except for the most straightforward one: a belief in yourself. You’ve survived the last flair, you’ve already survived the worst day of your life, so keep going.
Because with auto-immune diseases, the only thing tough enough to kick your ass is, well, yourself.