Where Are the Adults?

Nonfiction, Rare Disease, Writing

My second week of university, I was hospitalized for long-term complications of necrotizing enterocolitis. The experience ended up being so traumatic, I nearly dropped out. Years later, I finally put this haunting to rest by writing about it.

Only two weeks into university and your new computer has stopped working. The guy at tech support frowns.

“How much time do you have?”                                                

“I have a Broadway show at two.” A faint discomfort nudges your stomach. You scan the glossy storefronts lining the second tier of Columbus Circle. Would it hurt any of them to carry water?

Tech guy smiles up from testing the keys. “Oh, neat! You know I like seeing those plays and stuff but I’d go more if I could find people to go with, you know? I mean, could you imagine going by yourself?” He shakes his head. “Wouldn’t be caught dead doing that!”

You titter politely and wonder if you really are supposed to feel pathetic for, indeed, going to the theatre alone. You had turned 18 exactly a month ago, meaning you’re more 17 than 18, meaning you hardly count as an adult and can therefore not be expected to know these things. An hour later, you find yourself lodged between two middle-aged couples. It’s quite obvious you’re alone, but you are merely a backdrop in other people’s shared experience. The smell of burgers invades from the right, creeping and potent. The source is in fact not a greasy bag from Junior’s but your neighbor’s body. The house dims, and the smell gets louder, festering into something resembling the byproduct of an extended belch. Tides of nausea threaten your stomach. The dull pain begins to sharpen, deepen, just below your navel. The spectacle can only do so much to help you escape.

By intermission, the knife has fallen into a pattern, working its way back and forth through your abdomen as if it was carving a roasted Christmas pig. Pain is tossed between your abdomen and your throat like a ball game. You find a chair outside the ladies’ room and catch your breath. The idea of abandoning a Broadway musical is blasphemous—if not because of the exorbitant price, then because of the stubbornness to remain in the cradle of delightful theatre. Never one for acting solely on your own judgement, you turn on your phone and call home. Your mother picks up. She thinks you should leave, lie down.

The knife slides in further. Helplessness slowly sets in and the world expands. You can’t swim in it. You can barely float. Help, a voice gasps. Help, help, now. Help. Can the ushers get you an ambulance? Surely it hasn’t come to that. You approach one, but the most you can say is that you need to go home.

“But I would really like to see the rest of the show—I really don’t want to leave—”

They must wonder how crazy this child can be to consider putting off seeking medical attention to see act two of a musical comedy that parodies Shakespeare and boasts 16th century kick lines. Their supervisor gives you their card and begs you to take care of yourself.

You burst through the doors and into Times Square. It’s too bright; it’s too much; you can’t swim.

“Don’t hang up,” your mother instructs.

As you head for 42nd street station, you consider approaching one of the police officers for help. Is that all you’d say? “Help,” and then everything would be taken care of? Then you consider their bulletproof vests; their helmets with clear shields over their faces; the machine guns held at the ready. Their gear has intensified since ISIS released a video threatening to attack New York. What if you startle them? Approach them in the wrong way? You’d seen too many shootings of unarmed Black people that summer.

Times Square begins to tilt. You head underground.

The phone call drops. The subway car is packed with passengers immersed in self-induced aloofness. Sit down. Sit down. A sliver of exposed metal between two women. You wobble towards it, but a man pushes past you and dives for the seat. People glance at you, registering that something isn’t quite right. But it’s filed away as quotidian New York strangeness and they “un-notice” the girl crumbling within herself, swaying from the pole. You wonder if anyone will offer you a seat or ask if you need anything, but the city wills you to be invisible.

Union Square. As you struggle above ground, you redial your mother.

“I don’t think I can make it.”

“Where are you now?”

“I’m in front of Whole Foods.”

“Okay. You’re almost there.”

How long will it be before you collapse in the middle of 14th street? You try to gauge how bad it will be when your head hits the asphalt. “I can’t do it. I can’t do it.”

“Yes you can. Keep walking.”

Somehow, you’re stumbling forward while drowning.

“I can’t make it, Mom. I can’t make it.”

“You’re so close.”

Miraculously, you reach the revolving glass door of the freshman hall on 12th street. Your hand shakes over the keypad.

As soon as you enter the room, you dive for the bathroom. Vomit for a while.

 You’re in your pajamas and under the covers when your roommate enters. You warn that you’re not feeling too well. You don’t want her to feel uncomfortable or alarmed.

She shrugs. “Okay.” And turns her back to you and sits at her desk.

“Dad’s just called up to the school. An RA is going to come check on you. Don’t hang up.”

You don’t think that’s necessary, but the Resident Assistant on duty arrives anyway. She looks annoyed, but she asks what’s wrong. It’s got to be one of three things: alcohol, overdose, or pregnancy. You’re a sheltered Southern prude, but she only half-believes your story.

“So before I can call 911, I’ve gotta get clearance from the nurse and security downstairs. I’m gonna put you on the phone with the Health Center. Hold on.”

She hands you her phone. The nurse sounds just as annoyed as the RA looks. She repeats the questions over and over, as if, the fifth time around, you’d say, “You know actually, now that I think about it, I did do drugs today.”

Half an hour has passed and you wonder if it would have been wiser to have simply called 911. The pain escalates. You can no longer maintain the decorum necessary to swallow your incomprehensible vocalizations of agony. Your teeth chatter; your body shakes with mounting violence. Control slips.

Your roommate twists around in her chair and watches you in horror. Great, you think, she thinks she’ll be living with a freak the rest of the year. The RA suddenly realizes she’s working with something serious. Her irritation is redirected from you to the nurse. She snatches the phone and demands to know what’s taking so long.

“Look. All we need is for you to say we can go ahead and call an ambulance.” The RA’s eyes flicker with something livid. “I have a student here who is literally shaking in her bed!” she yells, gesticulating in your direction. “Since you’ve been on the phone, I’ve been watching her get worse! We really don’t have time for this. We just need your permission.” She spends the next several minutes arguing with the nurse, who refuses to comply until she has confirmed which poor life choice you made to land yourself in this position. At this point, you can barely talk, but you manage to latch onto a few waves connecting your thoughts to your voice, and you scream your answers at the phone.

An hour has passed. The nurse finally relents and the RA calls the security guard in the lobby.

“No—listen, I don’t have time for these questions. That’s none of your business. All you need to know is that we have EMTs on the way. That’s all you need to know. Okay?”

When she gets off the phone with the dispatcher, she crumples into her hands. She carries enough anger and frustration for the both of you, so you can keep sobbing and shaking in peace until help arrives.

At some point, the EMTs enter.

“What’s the matter here?”

The only sound you can manage is a breathy, “Huhuhuh. Huhuhuhuh.”

“Hello? What’s going on?”

Can’t they see you writhing about like a dying insect? Does it look like you can carry a conversation?

“Ma’am? Ma’am, we need you to cooperate here,” their voices grow hostile. “You need to answer us.”

You respond by looking them in the eye and vomiting.


When you are experiencing such a degree of pain, all the straight lines that make us civilized human beings are stripped back until we are left with a raw, writhing animal. Nothing matters when your vision is narrowed to the immediate tip of the now; the mind has been switched into a primitive survival mode. And as your brain bursts into flame, the world grows increasingly distant and pointless. Half of the present has lost connection; it’s merely a static black screen, but a mile away you hear yourself begging for more morphine. The nurse says, “No, unfortunately we can’t do that,” and the blackness ignites to red as desperation gnaws ragged holes through your nerves. The animal’s eyes flash through your own. “I need it,” it hisses.

The pain flashes so loudly through your body that the red cools to black and drags you into its gravity. You harden to plastic. One too many wires makes one feel synthetic. Passive.

Miss America is being crowned. It’s September. Surely the pageant isn’t in September. Surely the reality of occurrence has been disjointed from the reality of time. Black. The RA is asked if she’d like something to eat. A peanut butter and jelly sandwich?

“No thank you.” She hunches over a textbook. The nurse insists. You hear yourself slur a plea for the RA to go home. It’s late; she doesn’t have to stay the whole time.

“Actually, I have to. That’s part of my job.”

You decide you don’t want to be an RA after all. The crinkling of plastic wrap. Black.

 A large cup is in front of your face. It’s filled with contrast. You’re instructed to drink all of it.

You’ve done this about four times in the past two years. It tasted fine at first, like Gatorade. But once you’d finished, they returned with another cup. Another. Another. Your stomach can only withstand portions suited for a child. The liquid gathered into a boulder inside of you. It sent a throbbing signal from your abdomen to your throat.

“You need to drink it, honey. Every last drop.”

The cup rattled in your hand. Your mouth refused to accept it.

“Drink!”

As you were wheeled out of the room, you began to vomit blue.


The nurse tells you they’ll bring a second cup in a bit; get started with this one. You stare at its contents. Brown this time. Not blue. You drink.


The CAT scan itself is easy. They’ll huddle over the images to study what is going on inside of you, but you already know. It is the same story every time. Scar tissue. Inflamed intestines. Probably some kind of obstruction. Then they’ll prepare for an emergency operation and change their mind at the last minute. You’ll be told no, it has nothing to do with necrotizing enterocolitis. That only pertains to babies. They never know what’s wrong with you, but they always know what isn’t. “Honey, I don’t know what to say. You seriously need to be taking better care of yourself. Watch your diet. Not so many burgers and fries, okay?” You haven’t touched either in years.


The curtains part. You brace yourself for another lecture.

“Okay, so we’re gonna do another scan, so we’re gonna start again with the contrast, okay?”

You’ll later discover your images were incomprehensible and induced a bit of fear, warranting the back-to-back CAT scans. Even further down the line, someone will tell you you’ve been exposed to a dangerous amount of radiation for someone so young. You’ll find that retroactive warning utterly useless.

After the results of your second scan are reviewed, you’re loaded into an ambulance and transported to a hospital on the Upper East Side. Black.


A blur of light. Robotic beeping somewhere in the background. You lift your arm. It’s held back by a multitude of tubes. The resistance stings gently. Heavy. This certainly isn’t your dorm. This isn’t the emergency room. How did you end up here?

“You’re finally awake.”

The room comes into focus. Your bed is surrounded by young people. A collective lightbulb goes off in their heads—about what, you haven’t a clue—as you blink at their faces. They’ve got that glint in their eyes, that grave thrill of discovery you experienced after watching your fourth-grade teacher drop Mentos in a bottle of Coke. But in this case, the chemical reaction is you.

Your audience scribbles something down into their notes. For the first time since yesterday at 2pm, you give a damn about your appearance. What kind of mess has your hair contorted itself into? Are your eyes puffy with sleep? This is invasive. You need a mirror.

One of the clipboard-wielders is wearing a white coat and carries a distinct air of authority. A surgeon. He shakes your hand with enthusiasm.

“Wow. Can I just say we are so excited to be working with you!”

Why is he excited? He’s grinning like a child presented with a new toy. Are you missing something?

He herds his students out of the room, saying they’ll give you a chance to rest.

A nurse walks you through the inorganic matter. Your vitals. The tube through which you’re being fed. Your initiation into thinghood is complete. The nutrients trickle in through your arm as if you’re a watered plant. Your mouth is a desert. It stings. You ask for something to drink, but nothing can be taken orally—including water. Your colon is inflamed and it isn’t letting anything through.

You flip back through your history of hospital visits and search for patterns. This doesn’t match anything. Not this particular brand of pain. Not the observers. Not the tube feeding.

The nurse leaves you alone with your new mechanical friends. What day is it? You were at a Sunday matinee yesterday—though now it feels like ages ago—which means— Find your phone. Where’s your phone? You spot your purse on the plush green chair beside you. If your parents were here with you, they’d be taking turns sitting in it, trying to latch onto snatches of sleep. You test the limits of the tubes and manage to grab the bag without falling out of bed. You pull out your phone and begin to compose apology emails to your professors. Will they forgive you for being in the hospital for one, two, three days? The program’s policy allows for only two missed seminars, even if you have a legitimate excuse such as illness.


The next couple of days pass in a blur. There is something about utter boredom combined with illness that drains you. Your grandmother comes to visit with her sister one afternoon. For a few moments, you relax into a child again. Real adults to protect you; to ask the right questions. As they leave, your aunt arrives. She’s brought some crossword puzzles, sudoku (which, after ten years, you still don’t know how to approach), and the past few issues of Reader’s Digest (your mom must have told her about your obsession with the magazine). And then you’re alone again. You sleep.


You might have to undergo surgery, but a gastroenterologist (GI) is going to examine you just to make sure. He comes. Examines. Declares an operation unnecessary. As he opens the door to exit, you see the surgeon, his students, and a gurney waiting for you. He turns them away. Your brain kicks up into a storm. Safe on the path you may be, you cannot help but think about the other part of the fork. In the alternate reality in which the GI says yes, they will need to slice into you, you would have been whisked into the hall right then and there, without a chance to gather your thoughts or call someone you love. An adult NEC survivor: a rare specimen indeed, freshly plucked from the formaldehyde.

Exciting. 

“You should feel lucky,” a nurse comments that evening. “You would’ve ended up with a nasty scar going all the way across your stomach. Imagine going to the beach like that.” He shudders.

The back of your neck bristles. “You mean like the one I already have?”

Attending the theatre alone is “supposed” to be pathetic. The scar that underscores your navel is “supposed” to be hideous. You used to wear bikinis for the express purpose of rendering it visible. You wanted people to notice. You co-opted the fandom of Harry Potter (though you’d never read any of the books) and marketed it as social currency. To have a scar meant you were the Chosen One. It was evidence that you’d struggled through something fierce. It meant strength. If your skin was smooth and unscathed, you hadn’t truly lived.

But now, as you half-watch yet another episode of Master Chef, you wonder if, all this time, you were supposed to have been ashamed of your body.


It’s 2 pm. The hospital is quiet. A nurse asks if you’d like to try walking. She’s a kind, middle-aged Blatina. There’s something maternal about her that makes you feel safe. Slowly, she helps you out of the bed. Your legs nearly give way. Since when were you not able to walk? You cling to the pole with your nutrient-bag for support and shuffle into the hallway.

The hospital may be on the Upper East Side, but it is a drab relic from the early 90s, from the manilla and pastel color scheme to the understated paintings of flowers that constitute art. The nurse guides you to the closer end of the hallway and introduces you to a cluster of her colleagues. When they see you, their faces crumple.

“Oh, baby!” they cry.

 Is that how bad you look?

Your hair must still be some sort of nest. Your face hasn’t been washed in who knows how long. Here you are, like a temporal orphan with no one to claim you, hardly able to walk, clutching onto a pole for dear life. The nurses don’t treat you as an everyday sight because you aren’t. You look like you belong in the pediatric ward.

As much as you enjoy the company of these self-appointed mothers and aunties, you quickly become exhausted after a few minuscule laps. The nurses shake their heads.

“Look at you! There is no way. You’re not going anywhere for at least a few more days. Just look at you.”


That evening, you’re allowed to eat dinner. Unseasoned chicken had never tasted so heavenly. Divine mediocrity.

The thing about being fed through a tube is, despite what they say about you getting “everything you need” through your arm, your mouth, throat, and brain don’t seem to get the memo. You’re parched, you’re craving something vicious, and it drives you crazy. What you wouldn’t give to bite into something; to chew; to taste.

It’s approaching midnight. Comfort is found in half-sleep and the reassurance that at least another day will pass before you’ll be released into a city that runs at the speed of light when you can only creep.

An outstretched hand is in your face. The surgeon.

“I just had to catch you before you left and personally say goodbye.” You reciprocate and let him pump your arm elatedly, but what on Earth is he talking about?

“Goodbye?”

“And I just wanted to say how much of an honor it was to work with a patient like you. Really, your case—just fascinating.” Then he does something that tips you into the well of the absurd. He expresses how disappointed he is that he didn’t get to take a closer look at you with that operation. And you thank the stars he didn’t. You become a thing once more. A missed opportunity; a discarded lesson plan.

As he gushes, a nurse enters. She’s about business. Hands you the discharge papers and orders you to sign them.

“Wh—I’m leaving now?”

You mention you were told it would be days before you’d be well enough. The nurse grows impatient. The surgeon is amused. Time to go now.

“May I at least wait till morning so someone can come pick me up?”

Your closest relatives are in Harlem, but you don’t have their number. The next would be Long Island. You couldn’t rouse your grandmother to drive 45 minutes to the city in the middle of the night.

“No. You’ve gotta go now. Call a cab.”

“I can’t walk!” What could happen alone, at midnight, in the backseat of a strange man’s car, too weak to look out for yourself? How would you make it from the car to your building? You start shaking, but this time, it’s not from the knife in your stomach.

The surgeon laughs. Folds his arms. “You know, most people wouldn’t want to stay in the hospital.”

And just like that, you go from a curiosity to a child playing sick at the school nurse’s office. A lozenge for a bit of theatre. You are no longer useful and thus the screaming swollen abdomen, the weakness, the spaghetti legs, are rendered invisible. It’s all in your head.

A blurry memory glimmers. In the ambulance, or perhaps the ER, the RA had mentioned a number on the back of your student ID. The Wellness Center. Call them when you’re ready to come back.

Your hand is quivering so much, you can barely dial.

“Hello?”

You tell them you’re ready to be picked up.

“I’m sorry, sweetie, but that’s not our job here.”

You ask if there’s another number you were supposed to use. The woman on the other end says no. Well damn.

The woman, who says she’s a counselor, notes the panic in your voice. You explain the situation, and her tone hardens into something intense.

“I can advocate for you. Where did you say you were?”

As she calls the hospital, you call your parents. They, too, are horrified. They, too, call the hospital.

Your evictors march into the room. The nurse, furious, demands to know why you have some lady from NYU harassing her on the phone; why your parents are calling from Georgia. The counselor, bless her, is unrelenting, which buys you some time. Your parents call your aunt in Rockland to see if she can pick you up. Rockland County may as well be in another state. To get there, one must drive through New Jersey.

You tell the nurse a relative is on their way. It isn’t good enough. When she isn’t yelling at one of your defenders on the phone, she is standing before your bed, harassing you. The surgeon implies you are treating the place like a hotel.

“I see you enjoyed that lemon bar, didn’t you?”

The panic is surrounded by the fog of the surreal. You’ve made the mistake of being too alert, too stimulated during a nightmare. What is going to happen to you? Where are your parents? Where are the adults?

By the time your aunt arrives, you’re a mess of tears and nerves. She’s incensed. Why are they making her niece leave at one in the morning? In the presence of a true adult, the nurse softens into a sympathetic human being.

“Oh, trust me—I completely understand! I have a daughter in college, too. You know, we really worry about them, don’t we?”

Gratifyingly, your aunt doesn’t buy it. You’re dumped into a wheelchair and taken out into the rain. Your uncle leans out the window of their Land Cruiser.

“Are you kidding me?” There is nothing like an angry New Yorker. He thrusts a hand in your direction. “Look at this! Look at this! She can’t even walk!”

You feel like an immobile shrimp in wet pajamas and three-day-old hair. Remains of bodily betrayal.

You’re folded into the backseat; your mind has been refashioned by Dalí. In the morning, your grandmother will call your room and panic when an older woman picks up. When she rings your cellphone, you will hear her curse for the first time.

The car pulls away. Your limited sense of place expands. A stilled portrait of glowing shop windows with expensive dresses and handbags, awnings and moldings and swirling balconies delicately brushed by light. The selective play of the revealed and the veiled, accompanied with the unnatural stillness of a pristine, orderly, and empty New York, is like a fantasy frozen in time. It doesn’t belong. You make a mental note to return and stay with it someday, but part of you knows it is a temporal, intangible swatch of what may or may not be life, rather like a childhood memory stored in technicolor. Questionable.

As if it had never happened.

Linseigh x The Moth

Audio, Rare Disease

I have long adored The Moth’s Radio Hour and Story Slams, but only once have I had the courage to get up there and tell a story myself. Close your eyes as you listen and picture my knees knocking about. This is my story of surviving NEC and eventually seeing it (accidentally) define my future. I won second place. The nurses in the crowd said I was robbed.

Their words. Not mine.

From Surviving NEC to Studying at NYU

Published Pieces, Rare Disease, Writing

NEC Society

Written by Linseigh Green, NEC Survivor 
Screen Shot 2018-01-31 at 10.19.55 AMWhy couldn’t I have been born with a more romantic disease? Not that diseases are romantic, but of all the medical conditions, particularly those with long term effects, why was I stuck with the one that affected my digestive system? The one whose symptoms can only be described with euphemisms in polite company? I am a survivor of Necrotizing Enterocolitis (NEC).

On August 13, 1997, my parents’ newborn wasn’t placed in their arms with a congratulatory flourish. Instead, they received news that I couldn’t hold enough glucose. Then, they were told that I was showing signs of cardiovascular complications. After that, my parents were hit with one problem after the other, until days later I was diagnosed with NEC.

My parents had no idea what they were dealing with, and educating themselves about this terrifying, fatal disease was a difficult task when they were…

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