Spring 2019: The Health Humanities Journal of UNC-CH

the Health Humanities Journal THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL

SPRING 2019

exploring illness, caregiving, and medicine

MISSION STATEMENT The Health Humanities Journal of UNC-CH aims to inspire and facilitate interdisciplinary thinking and collaborative work while developing and embodying a variety of ideas that explore the interface between arts and healing.

This publication allows for dialogue, meaning-making, and multiple representations of the human body, medicine, and illness.

To learn more about the publication or to submit, visit http://hhj.web.unc.edu.

DISCLAIMER The Health Humanities Journal of UNC-CH adheres to legal and ethical guidelines set forth by the academic and health communities. All submitters maintain patient privacy and confidentially according to the Health Insurance Portability and Accountability Act (HIPAA). The University of North Carolina at Chapel Hill and The Health Humanities Journal of UNC-CH do not endorse or sponsor any of the viewpoints presented in this journal. The opinions presented in this journal are those of the corresponding authors.

SPONSORS

The Health Humanities Journal

of The University of North Carolina at Chapel Hill

SPRING 2019

EDITORIAL TEAM Emily Long Editor-in-Chief Majors: English & Biology Minor: Medicine, Literature, and Culture Class of 2019 Neha Aggarwal Design and Layout Editor Major: Health Policy and Management Minors: Chemistry & Medicine, Literature, and Culture Class of 2021 Jillian Nguyen Marketing Director Major: Public Relations Minor: Composition, Rhetoric, and Digital Literacy Class of 2020 Alice Peng Art Director Major: Economics Minors: Chemistry & Math Class of 2021

Shraya Changela Editor Majors: Chemistry & Exercise and Sports Science Class of 2020 Elizabeth Coletti Editor Majors: Chemistry & English Class of 2021 Rabab Husain Editor M.A. Candidate in Literature, Medicine, and Culture Sanam Kavari Editor Major: Environmental Health Sciences Minors: Medical Anthropology, Chemistry, & Biology Class of 2019 Nicholas Allen Graduate Editorial Adviser M.A. Candidate in Literature, Medicine, and Culture Jane F. Thrailkill, Ph.D. Faculty Adviser Co-Director, HHIVE Lab Department of English and Comparative Literature

TABLE OF CONTENTS Editor's Note

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Emily Long

Faculty Adviser's Note

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Jane F. Thrailkill

Birth Story 10 Kate Giffin Meri Ma: An Illness Narrative of 14 Smriti Singh My Mother’s Journey (कहानी) Drifting Down Sweet Waters 16 Paul Skiba PiNK 18 Stanley Sun Parkinson's 20 Hazel Milla Critical Incident Report #1 21 Adam Hunter Plugged In 23 Jhoan Aguilar Recovery 24 Tyra Walker Restitution 26 Austin Hopkins Create it Away 29 Katie Danis "It's Hard Being in This Body" 32 Caroline Efird, Madeline Kameny, Joanna Ramirez Today is Tuesday 35 Jeremiah Essig Pause. 36 Terra Beek Wild Dreams of My Ancestors 38 Mariah Hukins Lucid Dreaming 39 Benjamin Ashby Sundowning 41 Lucas Thornton

COVER ART

by Alice Peng

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EDITOR'S NOTE Dear Readers, What an honor it is to get to write my last note as Editor-in-Chief of the Health Humanities Journal. I will certainly miss debating the merits of each submission with the editors, seeing each semester’s journal transform from a jumble of documents to a polished product, and learning the stories that are on people’s minds across UNC’s campus and beyond. I’m thrilled, however, at the idea of getting to watch the journal continue to grow in ways I can’t even imagine. I know it’s in the best of hands.

Many of the works in this semester’s issue highlight the ubiquity of illness. A nursing student catalogs all of the miracles and miseries of just one day in the OR, a medical student realizes that the first death he witnesses will not be the last, and many authors contemplate how best to approach their own illness experiences or support others through the hardships of chronic illness, growing older, and even death. A group of researchers provides vignettes told from the perspectives of both patients and providers who all come to some form of the same conclusion—“It’s Hard Being in This Body.” It is clear that illness plays a role in everyone’s life at some point and that we are all, to varying extents, trying to come to terms with both the amazing abilities and heart-rending limitations that make our human bodies simultaneously our greatest assets and hindrances.

To me, this juxtaposition is where much of the beauty of the health humanities lies. Though we must all face the eventual failings of the bodies that let us get up each morning and pursue our passions and the minds that we delight in filling with new information, the health humanities teach us how to approach these realizations with dignity and grace. By putting pen to paper and sharing their experiences, the authors in each issue of the HHJ demonstrate that we are not alone in this quest and show us how to find beauty in it. A girl with Tourette’s refuses to be confined to a diagnosis and instead learns to transform it into a

7 strength. A nurse realizes that she can learn more from taking the time to truly connect with a patient than from years of poring over textbooks. Through writing their stories, the authors make meaning of their individual experiences and share them with us so that we, too, might learn some of the lessons of the ups and downs of the human experience and find the hope and beauty that many of these authors, practitioners, and patients have found.

The Editorial Team and I present the Spring 2019 issue of The Health Humanities Journal of UNC-Chapel Hill to you in the hope that it might help you find meaning in your own journey in the human body. Though our bodies are restricted by their transience, they are also the vehicles that allow us the bliss of ice cream melting on our tongues, the bittersweet joy of kissing a loved one goodbye, and the warm rush of goosebumps when we truly connect with the writing of another. All of these feelings and more are encapsulated within these pages.

Finally, I would like to express my sincere thanks to those who have worked together to create the finished product you hold in your hands. To Dr. Jane Thrailkill, thank you for your support and guidance. To our sponsors, thank you for continuing to give us the means to make our ideas a reality. To the 2018-2019 Editorial Team, thank you for your unfailing dedication to the journal and for the vast creative talents you have invested in it. To the new Editor-in-Chief, Elizabeth Coletti, I wish you the best, and I can’t wait to see how the journal prospers under your leadership. To our authors, thank you for having the courage to share your experiences. And finally, to our readers, thank you for your thoughtful engagement with the stories we present. We hope you enjoy the Spring 2019 Health Humanities Journal of UNC-Chapel Hill.

With gratitude, Emily Long Editor-in-Chief

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FACULTY ADVISER'S NOTE Dear Readers, “It’s hard being in this body.” This statement, drawn from one of the works within these pages, captures the feeling of estrangement, even betrayal that can arise with a bad diagnosis, a life-changing injury, or the casual indignities that accompany aging. Unlike the ill or disabled, the “temporarily able-bodied” often give only fleeting thought to our fleshly selves. As end-of-semester exams loom, we begrudge our bodies the study time lost to sleep and to meals. Too often we neglect those activities – running, dancing, stretching, moving – that help keep body and mind together. Stress and tunnel vision set in, and we lose perspective.

The reverse process – gaining perspective – is at the heart of the poems, drawings, and prose pieces in this latest edition of the Health Humanities Journal.

Each work is written from a distinctive point of view. In one poem, we see how a cancer diagnosis brings a patient’s day to a standstill while their physician continues unfazed; in another, we are invited to sit vigil “hand in hand, together in one long / Pause” with a newly-minted nurse and her elderly patient. A grandchild speaks urgently to his mother’s mother:

But have you lived your life this long, farmed cotton in the smoldering sun, made your skin leather, to give it away like the handbag you sold at Jessie’s garage sale for a dime?

A writer of an illness narrative, when diagnosed with Tourette’s Syndrome, rejects the term “disorder” and instead riffs on the proper noun: “I glanced back at the sheet, turning the word over on my tongue. Tourette. It tasted French, and I liked it. I also liked that it contained the word ‘tour’ because a tour promised adventure.” These private moments are rich with feeling, as the authors use the resources of language and metaphor to convey worlds of grief, fortitude, and compassion.

This edition of HHJ asks us to pause, to take the time to acknowledge not just the frailties of the body but also the powerful economic and cultural forces that

9 can add to the background hum of suffering. In selections from an oral history project, we enter the perspective of a mother whose child didn’t qualify for Medicaid – “three dollars over the limit to get help. Three dollars” – and hear another who had no barriers to care: “I loved the hospital as a child,” this person reflects. The daughter of an Indian-American sees her mother’s chronic pain as a complex cultural experience, “much like the dhal makaani she liked to conjure up on the stove.” An artist contributes to the HHJ a drawing of a blue-gloved hand holding a stethoscope: the slender brown arm is a subtle reminder that the default perspective in U.S. medicine is white and male: “Many minority students of color do not see a doctor who looks like them until their first year of medical school,” the artist writes.

The contributors to this issue use different genres and media to refresh our perspectives and to challenge our assumptions and judgments. They also call our attention to the inevitable limits and transience of human vision. One speaker grapples with the pain of watching his grandmother succumb to dementia—Will she forget how to pray? Will she forget him? Her once vital mind is now “a slate that has been inconsistently erased by an angry and destructive child.”

John Keats believed that poetry helps us to tolerate “uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.” This is not to deny that, in the context of health care and healing, facts are often what we want. As one clinician in this issue says, “To one degree or another, almost every patient is saying to me, ‘I hurt. And if I tell you enough facts about this hurting and that hurting, maybe you can make it so that it's not painful for me to be in this body and alive’.” Poetry is not an opioid (luckily!) but when it comes to the existential pains and the joys of living, it can be a great consoler, a way to translate our human experience into meaningful form.

All my best, Jane F. Thrailkill HHJ Faculty Adviser Co-Director, HHIVE Lab

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Birth Story Kate Giffin When my mother gets together with her friends the topic of conversation inevitably steers in one direction: birth.

I have heard these stories hundreds of times– heard of the confusion of my own birth umbilical cord tied in a knot emergency lights flashing the beeping of the monitor the glint of a scalpel the scent of pulsing organs in plastic tubs.

I have heard of the violence of my brother’s birth collarbone cracking on the way out later, bullies would break the same bone and I am reminded of the pain of entering this world.

My Grammy chimes in, describes the agony of three days in labor she speaks with an air of horrified pride.

Later, she tells me and my sister that she wanted to be an FBI agent when she was young and I remember the violence of those three days in labor.

Three days in the desert changes a person; they emerge without a dream when they built her, they did not leave room between her legs for aspiration.

That child bound her forever to the divine definition of mother wife With a child, without an income

11 leaving becomes impossible– there is violence in complacency, in being forced to trade a career for a cradle.

There is a story that my mother won’t tell in polite company it is whispered only, passed as warning from mother to daughter because, really, it isn’t a birth story.

It is the story of a woman worn down by six births, made desperate from the potential of a seventh this woman took the most domestic of all tools: a knitting needle and, in the process of ridding herself of the pregnancy, she died.

Her name was Harriet.

She was my great-great aunt, a prairie woman accustomed to the hardship of the land.

No one prepared her for the tilling of her own body.

Her grandniece, my grandmother, went to school to become a nurse before marrying a Nebraskan farm boy.

I wonder if she remembered her training when she bandaged the knees of her five children when she administered vaccines to the spring calves that she helped rip from their mother’s bodies– she holds just as much agricultural knowledge as my grandfather but he is the farmer and she is the farm wife all that stands between them is a womb.

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My mother tells me about hiding peanuts in her graduation robes, eating them to stave off morning sickness as she received a college degree she would never use.

“When you are married and have kids of your own,” she tells me “you must have your own income.”

And I can hear the subtext: “don’t let them trap you.”

Don’t let the physical violence you were born to accept define you confine you break you– you are more than what your body can do.

-Kate Giffin is a junior at UNC from Bath, NC, pursuing a major in Biology and minor in Neuroscience.-

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Meri Ma: An Illness Narrative of My Mother’s 1 Journey ) wouldn’t show any skin.

Our relationship wasn’t always symbiotic.(कहानी At first, you

You thought things were chuggingSmriti along Singh great; you had no need for an upgrade.

A few poorly Moth placed balls. Moth and perfume, Diwali Themade perfume wordsballs from people who gifted meantatthe worldtime. and you a ofwrong her favorite Japanese cherry blossoms. My nostrils took in the shift of turn in scent, the dark. smell as I heard the door creak, stepping into the crowded closet, right hand reaching to flick the light on at eye level. Second drawer. Right. Her words flowed In my business, uncertainty is gold. I put on my best dress for you and slicked back to me as I flipped the switch. My brown fingers rummaged past winter my hair back with snake oil. I wrote my pitch on little notecards, practicing in wonderland pajamas, faded camisoles, socks of all shapes and sizes. Ahh. Here it the mirror couple times before pulling up beside you. were bursting withher was, rubberya like a fish in my hands.

I brought it back toYou my mother.

This was potential, like a bag, soft putty withcomfort. no hand to give it shape. My hands held the trusty hot water her go-to promiseThis distinct moment, repeated, occurred years ago when I was of greatness, no downoften payment needed. just seven years old. “Beta,” she sighed. “Back pain and pelvic pain,” she said to soothe my continual questions about the fishythe bag, herkind words We achieved incredible feats together.

Allrubbery, it took was right of measured. coach. I It was clear I wasn’t going to be trusted with more. Strangely, I am still getting the hardened your mind into a diamond, seeding it with rot that you wouldn’t notice same sort of pithy answers, although I am now turning twenty years old. But I until too late. Later, there were moments where you tried to fight, but my tendrils know my mother better at this moment in time. From being blackmailed by elite ran deep. It only takes twenty-one days to make a habit that will last a lifetime. If members of the Indian-American community once she immigrated to the states; any consolation, your looks pretty short. members silent while she toit’sbeing left defenseless in lifetime a new country, her family faced verbal, cultural, and class-oriented blows; to almost losing her father to a heart attack 8,000 miles away this past year; she has endured much. I know that But then. she has become a private woman of her own greatest struggles, seeking to cloud vulnerability fromdifferent the eyestoday. of herSomething children. has stirred. Told someone about me, Something feels

There are three words to describe my mother, who wishes anonymity did you? Mm. I’ll make them hate you. It really shouldn’t take much. They’ll in her tale. Thick-skinned, stubborn, and tough-loving (let’s not forget cat lady, figure out you’re not worth fighting for. I’ll be here, waiting for you to learn. master chef, and seamstress extraordinaire). Being the daughter of an India-born Where’s the popcorn? father and a Fiji-born mother, it was not always easy understanding their stories of suffering from my privileged point of view, a status for which my parents (for lack of a better term) busted their asses. Mom was the kind of woman to remain indelibly resolute, making every part of her life flow the best she could. She sewed her own dresses when my dad quit his job years ago in their one-bedroom apartment anditpatched together the clothes I banged up on thethen. playground as a Thought was bad before?

I wasn’t angry

You have the audacity to try and box me up?

Think a couple therapy sessions are enough to muzzle me? I’ve had you on a leash for years.

1"

Kahaanee," meaning story or tale, in Hindi.

15 preschooler. She would make the rooms of our house flow together, slowly over the years, until they all were full of figurines, Ramayan paintings, and scented candles from our Saturday Walmart trips. When I became a high schooler, I would place those knick-knacks on the high shelves, adjust photo frames, push the cart, and carry our treasures back to our house, searching for new homes for them on already cluttered shelves. Her grocery store walk grew to a stroll. Her blood pressure machine replaced the phone on our mail counter, and a sleeping bag was arranged on the floor for my cat and I to jump into instead of her bed.

She grew older and I more into youth, but our shared love of design, creation, delicious food, and being homebodies united us.

Mom’s health was much like the dhal makaani she liked to conjure up on the stove, taking long periods of time to manifest into something fully developed.

There were many layers of spices and simplicity to who she was as both “the Singh household’s chef ” and to her physical health. Her back was the main culprit, as it had begun to grow weak many years before. Despite the increasing pains, mom kept persisting; her work soothed her soul , but never developed her strength. More additions came along: a back mole here, painful heels there, and indigestion for as long as I can remember, but mom battled. The mole was surgically removed, she switched to thickly-padded shoes, and she dragged her purse full of Tums tablets to the movies and grocery store. She was herself: cooking, cleaning, mastering her sewing, managing her international team at work, and raising my sister and I with discipline and firmness.

The summer after my first year of college, my mother, sister, and I journeyed halfway across the world to visit my grandparents. “I think my trip to New Zealand aggravated the pain, as I was sitting on a plane for fifteen hours both ways. When we returned from the trip, the week after, I was having excruciating pain.” I listened with a crinkle in my forehead, putting down my course catalog for the fall, thinking this was just another bout of aches and soreness that my mom would carry for a few days, a few weeks at most.

I blinked my eyes and the second year of college had rolled around. As I boxed up my sister’s belongings for nursing school and gave my mom a kiss goodbye, I saw dusk in her eyes. Apprehension. Anxiety. Gloom. Her life has changed incrementally in these moments, in many ways.

-Smriti Singh is a senior at UNC from Atlanta, GA, pursuing a major in Biology and minors in English and Chemistry.-

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Drifting Down Sweet Waters Paul Skiba

Your eyes are closed tighter than yesterday, protecting you from the horrors you’ve been dreaming.

What happens when dreams become reality?

You prayed for an inability to answer that question.

Is there any sweetness or just sour?

Cherries!

You remember.

But your mind’s eye isn’t closed, dear.

You’re steel, but not stainless.

Hands clenched, you’re squeezing the memories out like the last little bit of toothpaste in the tube.

You were always frugal. I loved that about you.

You say you’re swimming away yet drowning in the sea.

Are you fighting, or are you surrendering?

I wouldn’t blame you either way.

But have you lived your life this long, farmed cotton in the smoldering sun, made your skin leather, to give it away like the handbag you sold at Jessie’s garage sale for a dime?

You remember Jessie’s freshly mowed lawn.

The smell of soil under your nails. Ecstasy.

You cringe.

There’s a piece of you left, you can taste it.

17 Like Momma’s peach cobbler on the tip of your tongue.

But you don’t remember your mother’s face.

No. You remember the smell of her room– apple cinnamon– that grounds you in a place to which you beg to return.

The spiced candles you once loved are choking you.

You’re being pushed toward the water in the wheelchair that carries your life.

Your tears are the ocean you’re screaming at, “PLEASE LORD make it stop!”

You are here, you are safe, how do I tell this to you?

The apple cinnamon, please remember.

-Paul Skiba is a fouth-year medical student at the UNC School of Medicine from Chapel Hill, NC.-

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PiNK Stanley Sun

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- ARTIST'S NOTE The topic of menstruation is often considered taboo in Western society. By portraying menstrual products in an aesthetic manner, I aim to destigmatize the depiction of these products in the public eye. I hope that normalizing the topic will lead to the revision of unfair legislation regarding menstrual products.

-Stanley Sun is a senior at UNC from Portland, OR, pursuing a major in Mathematics and minors in Chinese and Philosophy, Politics, and Economics.-

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Parkinson’s Hazel Milla

When I was little, you sat in a wheelchair most of the time, and I played

by myself. I was always in my head, and you might have related to that. You were a poet, after all, although when I knew you, you couldn't hold a pen. But I read your poetry later, and it gave me a sinking feeling in my belly, and it was beautiful, and I cried. I've only ever read that one poem of yours. Unsurprisingly, you wrote about a loved one.

When I was a little older and learned to speak, you couldn't speak any

longer and were lying down most of the time. You were shaky, face twisted and frozen, your eyes shut. Younger cousins were scared of you because you looked ill and couldn't move much, but I grew up with you around, so I wasn't scared. Once, I saw one of my older cousins kiss you on the head and say, "Te amo, Abuelito," and when she left, I kissed you on the head and tried to repeat, "Abuelito," though I couldn't pronounce the word very well.

After you died, I wrote a letter and left it on your grave. I can't remember

exactly what it said, but it might have been something like: I'm sorry I wasn't able to go to your funeral; I was young and had school and no plane ticket.

Now I'd say, I wish I could have heard you speak and remember it. I

think we would have understood each other.

-Hazel Milla is a sophomore at UNC from Chapel Hill, NC, pursuing majors in Neuroscience and Creative Writing.-

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Critical Incident Report #1 Adam Hunter

A meditation on the first fatal trauma case I witnessed as a medical student.

At the beginning of my third year, I knew I would soon witness a patient’s

death firsthand. However, I was unprepared for her to be a teenager with handfuls of pills in her stomach and lungs full of ash.

I remember receiving the page while on trauma service: “15 yo F red

trauma GCS 3, house fire. Arriving 10min ED2.” As I jogged through the bowels of the hospital toward the emergency department, I converged with one of my classmates and our chief resident.

“Relax. You don’t need to run,” my classmate advised me.

“We always run when traumas involve children,” the resident said.

Soon enough, our patient arrived. A flurry of activity ensued: her clothes

were shorn from her body, blood was drawn, IVs were placed, X-rays were taken. Lab results were processed. A pediatrician grilled me with questions about lactate buildup and carboxyhemoglobin. The girl’s tension pneumothorax was released by a bedside thoracotomy and chest tube. The whole room smelled like a campfire.

She was stabilized and taken to the burns unit, where I saw her again a

few hours later after a rapid response was called. When I arrived, a crowd had gathered outside her room, watching as nurses and residents and attendings took turns administering chest compressions. As the team relentlessly beat her naked, bleeding body back to life, I heard a nurse whisper, “If my kid ever did this to me and survived, I’d kill him myself.” As guilty of voyeurism as anyone else standing outside her room, I looked on.

“Family’s coming!” a nurse yelled down the hall as the girl’s mother

arrived and broke through the wall of hospital staff enlisted to keep her away from the scene.

The woman’s cries were the sounds of her fractured soul leaving

her body.

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Some time later, once the girl’s mother and family members were

escorted away, an attending reevaluated the situation. Epinephrine brought the girl back to “life” repeatedly, but she kept on dying anyway. The attending doctor made the decision to stop intervening. Relief hung palpably in the air. Sweaty, breathless, and quiet at last, everyone watched her heart rate grind to a halt on the overhead monitor.

I imagined the girl’s desperation and resolve as she choked down all the

pills in her medicine cabinet, set fire to her home, and laid down in her flannel pajamas, resigned to the reprieve of eternal sleep. I wondered if, when she decided to kill herself, she had known what would happen to her body between life and death. Did she care? Was this a good death because she had wanted it, engineered it, and orchestrated it? Or was it a miserable death because the girl’s mother had seen her baby bleeding, burned, and broken before she passed? I envisioned the girl on her first day of kindergarten, as a small child, as an infant.

On the day she was born fifteen years ago, could her mother have imagined this afternoon in her worst nightmares? Did we give up on her so easily at the end because she had already given up on herself ?

Another woman, maybe the mother’s friend, was present at the end. This

woman did not cry; she did not say anything at all. Her eyes were wide when they met mine as she walked past me after the ordeal had ended. I had nothing to say.

I didn’t smile or frown. I just watched her. I don’t know how I should feel about that–embarrassed, sad, or neutral.

People began to disperse, so I left the burns unit, walked past the room

where the girl’s family members had gathered, and climbed the stairs to the student workroom. I grabbed my backpack and began the trek to my car. I listened to “Call It Dreaming” by Iron & Wine as I drove home, and I didn’t cry.

- Adam Hunter is a fouth-year student at the UNC School of Medicine from Wilmington, NC.-

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Plugged In Jhoan Aguilar

- ARTIST'S NOTE This piece represents a crucial skill that I have learned while shadowing as an undergrad: the act of listening. While observing the doctors, I would become so focused on the diagnoses and numbers that I would disregard my connection with the patient. In order to be an excellent health care provider, I must be attentive to my relationship with patients and their stories. I made this piece to remind myself that as a future health care provider, I need to be attentive to the soul of whose body I am alleviating of pain.

-Jhoan Aguilar is a senior at UNC from Asheville, NC, pursuing a major in Biology and a minor in Chemistry. -

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Recovery Tyra Walker

70 surgeries.

From examining the board, this is the caseload estimate of the entire

Perioperative Operations department for the day. This does not include emergencies that may be added later on. In the curtained-off bays of recovery units, a myriad of changed lives will sit:

An elderly woman with her bowel function restored after having had

to wear a colostomy bag for years. Confusion and elation both hit her as the anesthesia takes its time leaving her system, and she remarks with surprise that she is alive.

A kidney donated from a young man to his adoptive father. He might be

starting to show unexpectedly strong symptoms of rejection.

An abused woman left to die in a ditch now sits, post-amputation, with

only one arm, due to the compartment syndrome she contracted. Disoriented and weeping upon waking, she needs to be constantly told she is safe.

A teen with a neurological deficit groggily coming to awareness, sees his

parents, who hope his condition is temporary and that the doctors were able to remove the entire tumor.

A man who lost the ability to breathe without external support and will

eventually be able to speak through a stoma in his throat. Right now, he needs oxygen.

A man who finally got his kidney stones removed, the most painful thing

he’s experienced in his life.

A child who broke his leg, the exposed bone reduced and repositioned,

the worst day he’s had in his short life. His foot is looking unusually pale below the cast.

A woman whose molar pregnancy was treated with removal of the

diseased tissue she thought was a fast-growing first child.

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A man who inflicted his own gunshot wound to his skull. He is saved

from more neurological damage, but seeing his children and ex-wife react to his face is shattering to a man who is already broken.

An aching woman who received a coronary artery bypass to stave off

the dying of her heart. Finally realizing her entire life must change is the hardest thing she’s ever had to face. The feeling is secondary to her moans for any sort of relief from her surgical pain.

Every day. Give or take a few.

A steady output of changed lives.

A layer of curtain is all that separates them.

Their worst day. Their best day.

Our work day.

-Tyra Walker is a fourth-year student at the UNC School of Nursing from Burlington, NC.-

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Restitution Austin Hopkins

This is how I reported you:

“We, A and L, are first-year medical students writing to you on the subject of the home

visit assignment. We visited our patient in her home, and through a combination of events that are described below, left feeling as though our safety had been jeopardized.

We arrived at 2:00 pm to gather testimony on the intersections between socioeconomic

factors and health care. For the first hour and a half, we had a pleasant experience. The patient was jovial and exuberant. However, during a lull in the conversation, the patient went into her bedroom in the back of the house. We couldn’t see her approaching from behind, and thus, we were taken off guard when she reentered the kitchen with a handful of bullets and a revolver. The gun was pointed directly at L, and while the patient said she was unloading the gun, neither of us knew enough about guns to be able to make a confident judgment as to whether the gun had any remaining loaded bullets. The patient also forced us to hold the gun and “feel how heavy it is.” She placed it on the kitchen table with the barrel pointed toward us, next to a pile of “copkiller” bullets with razor blade inserts.

We don’t believe she drew the gun maliciously. However, there were a number of

confounding variables that made us feel increasingly unsafe at the time. First, the patient showed signs of instability. She would jump from story to story, expressing potent yet discombobulated emotional responses. For example, the patient indifferently discussed the death of her spouse and then immediately jumped to describing an oar hanging in the living room before bursting into tears over the recent death of a beloved dog. The patient brought the supposed remains of the dog in a clear plastic bag, sealed with a twist tie, which she set on the table to accompany the gun for the remainder of the visit. The patient interrupted her stories periodically with suspicious inquiries as to the nature of our visit; she was concerned that we were there “to do stuff and tests on me.”

We calmly explained our assignment, and then she quickly resumed the interrupted story.

27 This happened three to four times during the course of our visit, which lasted until 6:00 pm.

The patient expressed sudden and discomforting interest in our dental work and A’s earring. She remarked abruptly about how perfect our teeth were and how much money it must have cost to make them that way, and she also commented that “it’s not normal” for a boy to have that kind of piercing. The patient also shared opinions, views, and stories that were racist, homophobic, xenophobic, and misogynistic. Considering the gun on the kitchen table, we were exceedingly uncomfortable and afraid to do anything that might trigger a fear or insecurity within the patient that could lead to a defensive, but violent, reaction…”

But now, this is how I want to understand you: The clock says 1:55. They said they’d be here around 2:00, I think. I can’t remember what that girl said on the phone. Run around, tidy things up, set out plates of snacks on the rickety, circular kitchen table. I don’t know what these kids will want to eat. I know they’ll need somethin’, I know them students don’t eat so good. They might be real picky or like weird stuff. I don’t know. I’ll just put out a few different things, and everyone can eat what they like.

A blue Volkswagen pulls into the driveway. It’s a shame more people don’t drive American cars. Those imports are driving away our jobs. Open the door, usher them inside, point out the things that fill your home with pride: the beer collection, the oar mounted on the wall that the man said was from the Titanic, the Halloween decorations you bought for your beloved granddaughters. You mention the gun you keep to protect yourself from the evil in the world. Just in case, you never know who’s dangerous, in case they try to pull something over on me. You never know with how bad our world is today.

You sit around the table and do what you do best–talk. Tell them about your daughters, your grandchildren, your husband, your beloved dog that just died. This is the part where you break down into tears because of the sting of loneliness, of an impending upper limit on your mortality. You’ve been so strong, after losing your husband, but to lose your beloved dog, your “fur baby”...that’s

28 the final straw. You break down into tears in front of strangers and hope that they understand. You won’t believe this! (You always start your stories with a preface.)

You get carried away in the thrill of storytelling–these kids don’t know much about how the world used to be, when things were better, so let me tell them what I know.

The afternoon gets away from you. You’re immersed in the past: your childhood spent in the orphanage, your daughter’s career in the Navy, the summers spent in the pool with your grandchildren, the financial struggles that followed you through every decade. You cough and wheeze when you get a bit carried away; slow down and breathe, you tell yourself. You show them things to help them understand. You bring out the gun. I’ll let them hold it. I bet they’ve never held a real gun like this. You bring out the dog’s ashes. I don’t know if this here is really my dog’s ashes.

It’s a weird color and real heavy. I’ll let them take a look and hold it and see what they think.

They’re quiet kids. They have straight, white teeth and are dressed very well. I bet their parents did them right, look at them here. They’re gonna be rich one day, won’t have to struggle like I have. They’re real lucky.

Now it’s getting dark; it’s past time for them to leave. You follow them to the car, telling them to come back soon, you’ll cook them something good for the holidays. But you don’t hear from them ever again.

- Austin Hopkins is a third-year student at the UNC School of Medicine from Clayton, NC.-

29

Create it Away Katie Danis

The first time I got my leg stuck in a broken drainpipe, I was naked.

As my preschool teacher dismantled the pipe to free my entrapped (and freshly nude) limb, a new crease crept from her cheek to her chin. She was twenty-five and had eight wrinkles. When school began she had zero. (In my defense, I held direct responsibility for only seven, and I contest the validity of the evidence that charged me with three.)

When my parents regaled Dr. McGoogan with my laundry list of

strange behaviors,1 he smiled rows of perfect teeth like books facing the wrong way on the shelf. Glossy white pages tumbled open to words like “creative” and “neurodivergent” and “comorbidity,” nice words with nice “t”s to turn over and over on your tongue. As I sat on my hands and swung my legs, my eyes wandered over the upside-down scrawl on his black-and-white sheet–Diagnosis: Tourette Syndrome.

Tourette Syndrome (also known as “Tourette’s” or “TS”) is a neurological

condition “characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.”2 TS involves at least one vocal tic. It is hereditary and comorbid with OCD and ADHD. (If you have all three, congratulations! You win a can of Campbell’s Neuropsychological Alphabet Soup.) Approximately 200,000 Americans live with TS. The condition is named for neurologist Dr. Georges Gilles de la Tourette, who discovered it in 1885.

I would learn all of this later.

1

Including (but not limited to) banging my head on the floor for hours without cause, hunching over like

Quasimodo and clawing out my eyebrows, compulsively inhaling underwater, and furiously flapping my arms like a 40-pound brunette penguin poised to storm a fishery. You know, normal kid stuff.

2

"Tourette Syndrome Fact Sheet." National Institute of Neurological Disorders and Stroke, U.S. Department of

Health and Human Services, www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/ Tourette-Syndrome-Fact-Sheet.

30

The DSM-5 classifies Tourette’s as a tic “disorder”–a problem that

requires treatment.3 Something broken. Something not-quite-right. Something you can pinch and tuck and drown in Xanax and proclaim, “All better.” I glanced back at the sheet, turning the word over on my tongue. Tourette. It tasted French, and I liked it. I also liked that it contained the word “tour” because a tour promised an adventure: an old-smelling art gallery, a rain-scented path through a tangle of beech trees, or, best of all, a library with a twisty staircase like the one in Beauty and the Beast. I lived for the labyrinth: sometimes I was Theseus; sometimes I was Daedalus; always I was David Bowie, magic-dancing through the shelves.

However, not all magic twirls through tangled bookshelves and sparkles

like fairy dust and releases chart-topping reggae fusion singles. The voice in my head is my curse. Tourette’s has a way of making you feel alone, like you’re onstage squinting through the spotlights at an audience that won’t look you in the eye. Then I feel a different kind of lost, the kind that makes you hug your knees under the nightshade. Or where the path lies before you (all bright and alive) but you just stare, stare, stare.

The kind of lost where you don’t want to be found.

So I discovered ways to lose myself.

When I funneled all of my focus into an activity, the tics lessened. When

I ran, my legs windmilled in a familiar ticcing rhythm, the demon heaving and straining until, eventually, it fell into pace. In those breezy moments, I was free.

When I say that getting lost is my greatest gift, I receive a dismissive

waving of hands. But the subtle art of losing yourself is just that – an art, the product of excess creative energy that can be channeled through marathonrunning, opera singing, and the occasional drainpipe misadventure. “Disorder” implies “wrong,” but there is no right way to be. Heredity gave me a reservoir of

3

American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, 5th edition. Arlington,

VA., American Psychiatric Association, 2013.

31 nervous energy, and rather than dulling it with dams and Dexedrine, I run faster, write longer, sing higher, am kinder. I create it away. The alleles that urge me to touchthefloortouchthefloortouchthefloor also afford me laser-like focus, letting me lose myself in letters, people, paintings, in winding woods and twisty staircases.

The tics and twitches are me like my matrimonial devotion to Justin’s chocolate hazelnut butter is me or my use of the vocative comma in email greetings is me or my desire to befriend both Oscar Wilde and Ernest Hemingway so I can make jokes about “the importance of being Ernest”4 is me. I do not succeed despite my condition; I succeed because of it, and to mute it is to blunt my creativity, my curiosity, my identity itself.

So when Dr. McGoogan drifts a stale red balloon with an “Rx” scribbled

behind a boldfaced question mark, my mom stands. She plucks the question out of the air and squeezes. It pops with a flat crack, and she flicks it onto the floor.

As she strides toward the door, tugging my dad along, she pauses. Turns. Smiles.

“Let’s go, Katie” she says. And for once in my life, I obey.

The first time I got stuck in a broken drainpipe will not be the last. I walk

into the labyrinth again and again, a restless adventurer getting lost, trying and testing and ticcing and knowing that I’ll never get out, that I don’t want to, that all I can do is stand at the crossroads of Was and Will and explore the maze in between. If I am wrong, at least I am myself. That’s the only life I want to live.

4

Now, if you’ll excuse me, I need to find my way down from this tree.

This zinger has been stewing in my head for two years and change. Only problem is, there are, by

my calculations, approximately zero situations that would warrant its public appearance. Darn.

-Katie Danis is a first-year student at UNC from Greensboro, NC, pursuing a major in Global Studies and a minor in Medicine, Literature, and Culture.-

32

“It’s Hard Being in This Body" Caroline Efird, Madeline Kameny, and Joanna Ramirez The following quotes are from ten different oral history interviews that were collected for the Southern Oral History Program’s “Stories to Save Lives” research initiative on health, illness, and medical care in the South. Quotes have been edited for clarity and de-identified.

Starting at age five, I was in the hospital at least once a year, and I loved it

because I didn’t realize it was health care. I loved it because everybody treated me very special. Everybody was always asking me, “How are you doing?” Everybody seemed to really care, so I loved the hospital as a child. *** My daughter was very sick, and by the time her Medicaid was approved you had to reapply, and by the time she was reapproved it was time for it to expire again... but we didn’t qualify, didn’t qualify for a nurse, we didn’t qualify for a CNA, we didn’t qualify for a caregiver. We didn’t qualify for nothin’. I don’t know, because it all comes down to politics, and it all comes down to income again. I was three dollars over the limit to get help. Three dollars. *** I just wish that everybody could get the health care that they need without feeling like they have to–“How am I going to pay for it?” or “What am I going to do about my medicine? I can’t afford my medicine…” and I think that’s one of the scariest things for people to know that they’ve seen their doctor, but then they get this prescription, and they get to the pharmacy and they say, “Oh, my god.

I don’t have $100. Well, I guess I’m going to have to take some of my grocery money and pay for my medicine.”

33 *** Having a good experience at the doctor’s office was seeing how much they cared about you. Then at the follow-up afterwards, they remembered who you were, they remembered why you were there the last time, if the medication they gave you helped, and not just at the front desk, but also the nurses in the back. *** Some doctors are too nice. They won’t tell you things you don’t want to hear, but he did. I liked him. He was like, “You’re going to die. You’ve gained ten pounds a year.” And he was right. Changing my habits was hard, but it was nice to know that you do have good doctors out there who will tell it like it is. *** They like to tell you what to do because they’re the ones who go to school, and I had a provider that told me, “I was the one that went to school for this.” And I said, “And I appreciate that, but I need to know the why.”... I tell my coworkers at the clinic, “At some point, we are patients somewhere, and we are lucky because many of us, we know how to ask the right questions. Other patients, they don’t, so it’s up to us to empower them to learn, to learn about their body, about what they need to ask, and to not be afraid to ask.” *** My husband kept trying to tell the doctor that he’d broken his collarbone, and the doctor said, “No, you’re just bruised.” There were a lot of times that doctor did not listen. He’s a wonderful person, but he’s not a listener, and I told him, “You don’t listen to your patients.” He loved my husband. I know he did, but he never listened to what my husband had to say.

34 *** Instead of statistics, instead of research formula and all of that, which are good and we can’t do away with that, but sometimes let’s come up with a plan that’s based off of who you are and what it is that you do from day to day, because nine times out of ten, who you are has a lot to do with why you are feeling what you’re feeling. Basically, listen to your patients. Listen to your patient. *** I felt like the person who triaged me was just treating me like I was crazy. And when I told her what my level of pain was, she was questioning me, like I didn't know my own pain…. And actually, I ended up having my gallbladder removed, and finding out that it had been bad for a long time and it was deteriorating. And what the doctor said to me was, “You must tolerate a lot of pain, because there's no way you had a bad gallbladder and you were not having pain at some point.”

And I said to him, “Well, I must have mistaken it for indigestion.” *** It's hard being in this body. This meat suit that we wear is subject to wear and tear, it's painful, it's cranky, it's difficult, and to one degree or another, almost every patient is saying to me, “I hurt. And if I tell you enough facts about this hurting and that hurting, maybe you can make it so that it's not painful for me to be in this body and alive.” And for the most part that's not true– I can't change that. But I can give them the little things and the perspective that will help them adjust, and I can help them find the things that are either affecting them most right now, or that are going to make it very uncomfortable for them to be in the meat suit in the future.

-Caroline Efird is a Ph.D. candidate and Madeline Kameny and Joanna Ramirez are MPH candidates in Health Behavior at the UNC Gillings School of Global Public Health.-

35

Today is Tuesday Jeremiah Essig

Physician: Today is Tuesday.

Wake up. Good morning.

Breakfast. Coffee.

Drive to the clinic.

Patient. Patient. Patient.

Oh my, Mr. T has cancer.

Patient. Patient. Patient.

Home.

Exercise. Dinner.

Read. Sleep.

Mr. T: Today is Tuesday.

Wake up. Good morning.

Breakfast. Coffee.

Drive to the doctor.

Waiting room. Blood pressure check.

Hi Doc. Oh my, cancer?

Cancer‌ Cancer.

-Jeremiah Essig is a third-year student at the UNC School of Medicine from Bernville, PA.-

36

Pause

Terra Beek

Pause.

Finely pressed scrubs? Check.

Brand spankin’ new stethoscope?

(Do I wear it around my neck? Nah, pocket is fine.) Check.

Pharmacology pocket book? Check.

Nervous? Check…

Knock, knock.

No answer.

—A pause.

I lift my hand to knock again when I hear—

“Come in,” a faint, barely audible voice echoes.

I open the door.

There is a solitary ray of light.

I stiffen up, eyes alight with eagerness, and with a smile say, “I am your nurse today. Is there anything you need right now?”

(Whew, went just as practiced.)

She exhales.

She glances out the window.

I wait… and wait…

She responds, “Nothing you can help me with, dear.”

I deflate. Her weary eyes tell a tale.

A tale beyond my overstuffed scrub top, With a shiny penlight and crisp, new pocket medicine book...

37 There is silence. No one moves.

Two people, two stories.

Agonizing silence…

Til— She stirs. I exhale…Her hand moves to reveal—

A Bible.

And everything is illuminated.

No shiny textbook can explain the human response

to suffering.

And I became present.

And so we sat, hand in hand, together in one long Pause.

This poem is dedicated to my very first patient, who taught me more than a textbook ever could have.

- Terra Beek is an MSN-FNP student at the UNC School of Nursing from Durham, NC.-

38

Wild Dreams of My Ancestors Mariah Hukins

- ARTIST'S NOTE Many minority students of color do not see a doctor who looks like them until their first year of medical school. On top of that is the disparity of diversity when it comes to lecture, small group, and even on the wards. This image stands as a reminder for myself and for others who often don't fit the status quo to persevere in spite of challenges in our efforts to bring health and wellness to our communities.

-Mariah Hukins is a third-year student at the UNC School of Medicine from Raleigh, NC.-

39

Lucid Dreaming Benjamin Ashby

Sometimes, in the hospital, I think it must be better to be in a coma.

The ones in a coma don’t have to look for something to do with their hands as the doctors trudge into the room each morning. They don’t have to wonder if they’re allowed to be listening, or worry about whether it’d be better to mute the TV to show respect or turn it up to give the doctors some privacy.

The ones in a coma don’t have to overhear some doctor whisper to another that this one’s disease is a bad actor. There’s no cure.

What do they mean there’s not a cure? Maybe they were talking about somebody else.

No, they wouldn’t keep looking at me like that if it had been about someone else.

Our eyes meet. The two look away, perhaps embarrassed to have forgotten that I’m awake.

One of the doctors reaches a gentle hand over the edge of the bed. “We’ll keep doing everything we can,” she says. The other doctors are leaning against the walls, phones poorly hidden behind crossed arms. The good doctor’s display of kindness is just one less bite of dinner with their kids later tonight. I think they wish I was in a coma too.

I try to ask the doctor a question, but the tube in my throat has trapped my voice.

The nurses have already yelled at me once for pulling it out. She pats my hand and leaves the room.

40 I just wanted to know when I’m going to die. It’s been three weeks and nobody’s given me an answer. Everybody knows there’s no getting better, but I think it hurts too much to admit.

Instead, they pump me with medicine. Each IV is a soft plastic handcuff tying me to a bed I’m already too weak to escape. The medicine turns my doctors into spiders, still shrouded in their rumpled white jackets. The nurses, now flies stuck between too many webs, come in to tell me that I’m too sick to eat ice cream anymore. They push the dinner tray a few feet from the bed. I try to explain that I’d rather eat ice cream and kick the bucket than float indefinitely through this thin place where the light at the end of the tunnel is just a flickering candle pushed against a cold stone wall, but the medicine makes me sluggish and the words don’t come out.

My ice cream melts, just out of reach.

-Benjamin Ashby is a third-year student at the UNC School of Medicine from Omaha, NE.-

41

Sundowning Lucas Thornton

At night, you seem agitated. Actually, it’s not even at night. At night,

you’re usually asleep. By the time total darkness comes around, maybe around seven thirty when the cicadas finally cease their humming, you’re out, completely out. You lay there, sprawled on the recliner with that Noah’s Ark blanket you sewed for your daughter, my mother, wrapped up around you. I usually carry you to your room then, shuffling past the shadows in the hallway and opening the door with my toes. You don’t weigh much, and when I lay you down to sleep properly, I can’t really convince myself that I carried another human being to their bed. But it’s no matter, no matter at all. I just wish that you would fall asleep quicker.

I guess if it was winter, then it would be easier for you to drift off. Night,

perfect black night, comes so quickly then. There’s no time for dusk. The cold whisks it away like so many other things. But it’s summer now and dusk, evening, twilight, whatever you call it sits and stays there unwelcomed. I see the dying orange light recede from the windows beside the television, and I watch the intensity of it dissipate until it is no more and all is silent within the living room, including you, finally. Only the television breaks the silence, showing Jeopardy because it’s the seven o’clock hour and game shows always come on after the nightly news at six thirty. It’s an established fact, but you don’t seem to recall it.

Your capacity for remembrance has faded, not completely, though that

will come soon enough. For the time being, let’s rejoice that you still remember having a sister who had cancer rather than not remembering you had a sister at all. She’s dead now, you know. She passed three months ago in a hospital thirty miles from here. You ask how she’s doing most days, and I am in a constant fight with myself over how to respond. Most days I tell you the truth. “Aunt Alicia’s dead,” I say, and you look at me all confused and say back, “That can’t be. She’s fine. I saw her the other day,” or something to that effect.

42 But eventually, for the time being, you accept her death, and you get sad. You never cry. You just become depressed and irritable with melancholy until some plaque or tangle in your brain switches on and makes you a blank slate once again. It’s like reliving a tragedy every day, and I can hardly bear to see you go through this near daily cycle of loss, so sometimes I pull the wool over your hazy eyes and say she’s fine. “Aunt Alicia’s on a vacation in the Bahamas. She won it through Publisher’s Clearing House. Can you believe that?” And yes, you can believe that, and yes, you can also believe the stock photos of black sand beaches I pull up on my phone as visual evidence for how beautiful it is there. “Yeah, Aunt Alicia’s a great photographer.” I hate lying though. I hate it more than seeing you bend your head down, saying a confused prayer for Aunt Alicia every time I tell you that she died three months ago.

I’m surprised that you can still say a prayer, even if you only do it

sometimes. When I was young and you were healthy, I never saw you say a prayer. You beseeched God enough, shouting His name every time you cut yourself cooking. Mom said you were a pious lady. Once, she showed me an old church photo of you, fair-haired and bright-eyed as a girl; you had won some gospel singing competition, and you were smiling, but things change over time.

Faith erodes and minds deteriorate. But I guess you were pious all along, if one goes by the theory that you only forget the things which are unimportant. In the case of your present state, I know it’s wrong, but it’s comforting to assume whenever I think about the arbitrary and vicious ways your brain is decaying day by day. Perhaps, as I talk to you now, you are forgetting that you should clasp your hands while praying and that you should also end your prayer with “Amen.”

And perhaps you’re even forgetting that there is such a concept as God and that people pray to Him during times of distress like when you’re reminded that your sister, Alicia, died three months ago from cancer at a hospital thirty miles from here.

43

Night has fallen. The light that comes through the shade is now

nonexistent. The crickets are chirping, and Jeopardy is on. You’re asleep in the chair, under the Noah’s Ark blanket, and your eyes flutter slightly every now and then. I’ve learned that when your eyes stop fluttering, I should probably take you to bed. Sometimes, on bad nights, you’ll wake up confused and terrified.

Your mind rises from the blackness of degradation to find that this decay is still covering your mind. I know you try to fight it, but how can you fight such a thing when the miasma of decay is latched so tightly upon your brain? There is no fight. You cannot struggle against this decay, so you wake up blind to the world.

You don’t recognize me in the darkness, and you fight against me with your small, wrinkled hands. I hold on tight until we reach the bed and I turn on the light so you can see it’s me. Then you recognize me, but you’re still confused, and you ask a dozen different questions about why you’re here and what the time is. Usually, by the time I answer the fifth or sixth one, you’ve sunk deep into unconsciousness, ready to awaken again as a slate that has been inconsistently erased by an angry and destructive child.

-Lucas Thornton is a first-year student at UNC from Teachey, NC, pursuing a major in English.-