“Cratered”: On Having Crohn’s Disease -The Toast

First, stop eating. It’s easy because the flavors hurt: the shock of cinnamon atop pumpkin spice latte, the harsh curl of cilantro in an otherwise bland bowl of Vietnamese noodles. It’s easy because it feels like control, and your body will thank you with the amelioration of cramps, of crinkling pain in your stomach, to the left and right of your stomach like the less desirable regions surrounding a bull’s eye. Your body will wake you up in the morning with cold sweat, with clamped muscles. You vomit stomach acid. You eventually relent, and at the hospital, they are cavalier about your symptoms. It is 7PM and you have eaten three animal crackers today. You will spend twenty-four hours in the E.R. “It’s lucky we were able to admit you,” Dr. Eric says. He is handsome and scruffy, green-scrubbed—a soap opera version of a doctor. “You should feel lucky that you’re not really that sick.” Eric is his real name, because honestly, truly, fuck Dr. Eric.

This is not how it starts. It starts when you are eighteen, in college, and you can’t hold down a shot of vodka. Similarly, you can’t chase the non-shot with cranberry juice. Your mother suggests heartburn, which sounds like something only fifty-year-old men have and seems to be a dig about how oversensitive you are. I’ve never met a person with so many feelings. Your roommates are concerned. Your friends are jealous. You are not gaining the freshman fifteen. You are light as a feather, stiff as a board.

At the health center, the nurses trill. A young woman! Nauseated! Check, check. They are disappointed with the state of your fresh and unproblematic uterus. You keep a food diary and narrow it down to turkey, a ciabatta, herbed mayonnaise, a sleepy sheet of romaine lettuce. It’s called a Vassar Club and comes housed with contraband carrots and potato chips, both on the vomit list. You struggle through one each day. The health center nurse stumbles across a magic word in her questions. “Are you anxious?”

Yes; anxious is what you are. A boy in your dorm stretches like a snow angel on the floor of your triple, prophesizing: I know you’re not interested in men. I can feel it. Ask him to leave; he returns to his single to barrage himself in Wagner, seek out a haircut from anyone who’s willing to wield a pair of scissors. You are anxious about what he sees, about what everyone before him has seen. Anxious about the lack of privacy, the constant social expectations. Anxious about being anxious, how it’s tugboating you towards an illness you can’t explain.

This is all the diagnosis you will ever need. It is swift, all encompassing. Nervous stomach, they explain. The rest of you is calm, collected, ready to host a public forum on whether we should invade Iraq, but your stomach is bulging, poisoned with panic. They are satisfied and you slog through the rest of the year, trying to pass off your health problems as pickiness. Over a break, you visit your friend at her parents’ house and when her mother makes chili for dinner, you have to tell her you can’t eat it, not even a bite. “Sarah didn’t tell me you had dietary restrictions,” the mother says, graciously swooping back to the kitchen to prepare plain pasta from a cobalt box. What would you have told Sarah to say?

Your mother explains the heartburn theory to doctors. She is persistent; you are an only child who will eat only sandwiches. You buy special pillows, play roulette with every antacid the insurance company will cover. Purple pills an hour before you eat. Avoid salad dressing. You get better and it is a triumph. The sickness moves further into the horizon until you can only just see its steeple glittering in your past. When I was sick, you begin a sentence. From enough distance, you can reminisce about being thin, forgetting the tendrils of pain that made it difficult to walk.

When it happens again you are twenty-three. At your first, miserable job, you ping-pong between two available bathrooms, where your body rejects every piece of food you attempt. Officially, the company gives no sick days, though they do offer three consecutive days off if you have a child, and that child dies.

You take vacation time to go to the hospital and have a small capsule endoscopy. A camera swims through your digestive tract, capturing images of your insides.

Your doctor sits with you and pores over slides with a red pen, like your workshop professors careening through your amateur prose for an excess of the verb “to be.” Dr. Zingler circles the places where your body could be more successful. Your digestive tract is cratered with blisters, he explains, and the image that comes to mind is that of the sky—a sweeping, non-New Jersey sky that contains generous, sprawling constellations. You probably have Crohn’s Disease, he says gently. We will have to do some more bloodwork but you almost definitely have Crohn’s Disease.

The writer in you finds autoimmune disease poetic: your body, unsure of what is harmful and what is safe. Dr. Zingler writes you prescriptions, promises this is progress. A diagnosis is a gift, he explains: now we know how to treat it. Your illness is a child, stickily reaching for a box adorned with a bow.

(If I could spend all day telling you how beautiful, how exquisite and magical it is to be well, I would. My students complained that no one writes about happiness. For so much of those two years, between when I was diagnosed and when I turned twenty-six, I was healthy. I ate raspberry donuts. I fell in love, went to graduate school, moved to my first apartment and was elated and terrified and dizzied by how quickly I was changing. I took eight enormously blue pills per day and they worked, until they didn’t anymore.)

Then, twenty-six. Stop eating. Stop going to work, stop sleeping through the night. Stop socializing. You call your best friend Caroline, who is pregnant and on bed rest with her first baby—a girl. Commiserate about your exhaustion. Call her while you struggle to walk home from the pharmacy, make her repeat the same details to you over and over as you slump on a stranger’s stoop. The theme of the nursery is woodland creatures. There is a fox involved.

Your doctor calls in a prescription for a newer, stronger medication, and the insurance company replies that they need time to make a decision. What they mean is: we would prefer not to help you, but would rather avoid saying so outright. You call back. They pretend not to have received a rush on the request. A woman named Esther flatly explains that the rush means you will have a decision in 72 hours. It is Thursday, which leaves you over the weekend. Your response is immediate and hysterical. You sob to Esther, who is flustered as your conversation sails off-script. “You sound upset,” she flummoxes. “Keep calling back. You can call every day,” she assures you, as though you wouldn’t want to inconvenience Esther. I can’t make it, you think. You can’t swallow a sip of water.

Before you leave for hospital, take a long, decadent shower. Gather all of your electronic devices, your students’ essays. In the ER, non-stop coverage of the Ebola outbreak blares from a wall-mounted television. Half of the waiting room cloaks their mouths in masks, like polite cold carriers, and the other half hungrily swarms through food brought from the outside: glistening triangles of pizza, thick donuts with sprinkles. You long for donuts. The triage nurse is unconcerned that you can’t eat or drink, that you’ve had a fever for a week, that you have a chronic and incurable disease. She tells you to have a seat, which means you will be waiting for the next five hours. The doctors tell you that they’re waiting for a bed upstairs, which means you’ll be sleeping in the hallway in front of a closet marked BIOHAZARD.

In the E.R., you are very near the telephones, a cacophony of automated tunes that, with your eyes closed, swell around the gurney like a traveling symphony. Time vaselines over your slumberless, painful evening. You beg for Ambien and a nurse named Anthony ignores you for an hour, five separate occasions. Make a veil out of your cardigan. Wait. Keep waiting.

This is how it works: at your weakest, you are meant to be supercharged, advocating to be taken seriously. You should be assertive, resilient, loud. Above all else: loud. Unignorable. In reality, your voice is breathy and hushed, still—perpetually—poised for approval and acceptance. You are seven years old, fingers knotted on your lap while your piano teacher explains how to do two things at once.

Around four A.M. they wheel you away from the sea of chirping telephones, next to an agitated and clearly mentally ill woman who is effusively threatening a nurse named Lucy. She lurks outside of your curtain, bemoaning her treatment, her malfunctioning I.V. They treat us like dogs here, she commiserates, before divulging the details of her infected gallbladder. Administrators flock to the gallbladder patient, determined to appease her. Clench the cardigan tighter. Dr. Eric reminds you of your health. I had to fight to get you admitted, he elaborates, and waits for you to thank him.

Every doctor tells you something different, including: this CT scan should’ve been administered the minute you got here. We forgot to give you a pregnancy test, so now we’ll have to wait to administer the other test. You are not pregnant. You are one thousand percent un-pregnant. You’re gay, you announce to under-investigation Lucy. It’s a surprise, these clotted words scrambling out of your mouth with confidence; you’ve never said them without a lengthy disclaimer about the meaninglessness of labels, the intrinsic falseness of it all. Think of Faulkner, the quote push-pinned to your desk: I knew that that word was like the others: just a shape to fill a lack; that when the right time came, you wouldn’t need a word for that any more than for pride or fear.

You’re not not gay, exactly.

We’ll wait for the test results, Lucy says, but leaves your urine sample at the foot of the bed while she checks on her other patients. It sits, waiting for you. Think of Caroline’s baby, sloshing jumpily in the womb with her never-seen-light eyelashes, her in-utero dreams. For a second you hope, irrationally, that the test comes back positive, that what you’re filled with is a miracle.

You are admitted. Drink three enormous jugs of perfume-flavored barium to light up your small intestine. Every staff member in the CT Scan Unit congratulates you for avoiding vomiting. You are stowed in a private, gleaming room with a view of the bulging blue sky, the toy-sized Robert F. Kennedy Bridge. In the early hours of the fourth night, when your veins are stiff from overdrawing, the nurse mentions you might go home tomorrow. As long as you can keep solid food down and your pain is under control, I don’t see why not, she says.

Mark up the rest of your students’ essays; drape thin, Le Pen cobwebs of advice across their prose. It’s only Monday! Two full days to get ready for class. You take one, two, four! bites of your dinner, which is inexplicably vitriolic for a GI ward: fried chicken, macaroni and cheese, string beans. Sliced, eternally juiced peaches from a cup, the kind you loved as an infant. When, later, you cry from the sensation of digesting this meal, you know you will press the button to get the nurse. The pain twists hotly, flicking through you like a series of lights illuminating a darkened room. You can’t stand it. When the nurse pushes morphine through your I.V., your chest heaves in relief. You’re not going to be able to leave. This feels like the most serious test of self-control you’ve ever faced, and you have failed.

In the morning, two gastroenterologists you’ve never met before stand at the foot of your bed. Your doctors are a gray, sixty-ish man with stern jowls and his thirty-ish female protégé. She is wearing Warby Parker glasses; he paces when he speaks. The man says you will undergo a colonoscopy the next day. What next day? You tell them you’re going home, in a voice that is smaller and more bird-like than you sound.

Who told you that? says the female doctor, concerned.

Where are you going? says the male doctor, crossing his arms. A bemused smirk appears on his face. How are you gonna get there? Are you gonna walk?

I can walk.

He laughs. You’re not going anywhere.

You would never write that line of dialogue. You would circle it, a cliché.

I teach a class on Thursdays. But even as the words worm themselves from your lips, you are crying. Then you are really crying. The female doctor rummages through the assigned toiletries and disposable underwear to find a small box of tissues and pushes it onto your knee. Your face is hot. Rattling, the doctor says you look unwell; the proclamation of your visible illness is far from comforting. He repeats his line, the foreshadower in a horror movie.

It’s not about getting through this Thursday, the female doctor says. It’s about next Thursday, and the Thursday after that. All the Thursdays.

Your Thursdays line up, pre-schoolers holding hands for a fire drill.

If you leave now, she continues, you’re going to end up right back here.

Give up your class. Start the email with Yikes, you guys! to lighten the mood. It seems important, still, to make everyone else more comfortable with the awkward wildebeest of your illness. Try to joke about it—morphine any time you want! A vacation from work! No expectations of a hospital patient besides presenting your hospital band. A barcode to be scanned like an item at a grocery store. Disappoint the nurses with your uneasy, reluctant veins.

You are prickled, purple.

Swallow a gallon of saline-scented juice in preparation for the colonoscopy. Your favorite doctor taps on the jug with his thumb. You should chase this with gin, he says.

I don’t drink, you say. Or maybe you say can’t.

Smiling, he says: you don’t know what you’re missing.

A day passes. When the doctors inspect your intestines, things are not worse than they expected. This is a victory. They send you upstairs with a small envelope of pictures, words that you don’t understand. You are expected to have a reaction; it is the right time. There are no shapes to fill the lack.

When you are discharged, you are too weak to walk to the elevator without stopping to rest. Your father can drive you back to New Jersey because, in some alternate universe in which time has been drizzling by normally, he has gotten fired from his job. No WFUV on the radio; tufts of heat breathe consolingly from the car’s vent. Your mother cushions raw chicken into palatable meatballs, thinking she can fix you with the right nutritional combinations. Receive an email from a student inquiring about her late paper: I was gonna make it up and turn it in, but now you are gone.

Recover. Your new medication is administered through an I.V., flushes your bloodstream with mouse proteins. Quiets the contemptuous cells meant to quell infection. Slowly you reintroduce yourself to eating as a non-painful activity: creamy avocado on toast, dusted with sea salt. Return to Brooklyn, where your roommate guides you to and from the subway in his boisterous green sweatpants, until you can walk steadily alone. Start shopping, stretching, sipping. Scrub the adhesive from your hospital-splayed bandages. Claw at it with your fingernails.

Two weeks later, you meet a friend for brunch. She is lovely, effulgent, dipping grilled bread into baked eggs submerged in tomato stew. Dangerously order a side of bacon and tickle its crisp edges before you take a bite, savoring the scent. After the first taste you are afraid: the gauzy memory of pain. A humming suspense that lows beneath your conversations: it could happen again. Now. Now.

At night, trying to sleep, remember the doctor’s appointment that preceded all of this—a check-up. The nurse made you take off your ankle boots and step onto an intimidating digital scale. You didn’t let your eyes stay open. You didn’t want to know.

The nurse whistled appreciatively. “You’ve lost so much weight,” she cooed. “What’s your secret?”

Amy Feltman is currently pursuing her M.F.A. in Fiction at Columbia University. She has been published in The Rumpus and interviews forthcoming in The Believer and Electric Literature.

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slowseptember 103p · 530 weeks ago

They often tell celiacs "at least it's not Crohn's."

I'm sorry this happened. Thank you for sharing your experience (this is a beautiful essay). I hope you are feeling well now.

“Cratered”: On Having Crohn’s Disease

ByAmy Feltman

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