The Health Humanities Journal
of The University of North Carolina at Chapel Hill Fall 2016, Volume 1
Exploring ideas related to health, illness, caregiving, and medicine
Disclaimer:
The Health Humanities Journal adheres to legal and ethical guidelines that are set for by the academic and health communities. All submitters must maintain patient privacy and confidentially in order to create a respectful environment. All submitters are responsible for adhering to the guidelines set forth in the Health Information Portability and Accountability Act (HIPAA). The University of North Carolina at Chapel Hill does not endorse or sponsor any of the viewpoints presented in this journal.
Sponsors
Cover art, inside illustrations, and logo art by Jessica Fletcher
Mission Statement
The Health Humanities Journal of The University of North Carolina at Chapel Hill’s main purpose is to inspire, encourage, and facilitate interdisciplinary thinking and collaborative work while developing and embodying a variety of ideas that relate to health, illness, caregiving, and medicine. It strives to be a publication that allows for dialogue, meaning-making, and multiple representations of the body, health, wellness, and experiences with the medical system. The journal serves as an opportunity for undergraduate, graduate and professional students to publish original creative work, research, academic papers, editorials, and artwork that explore the interface between the arts and healing.
To learn more about the publication, or to submit, email hhj.uncch@gmail.com or visit http://hhj.web.unc.edu
Table of Contents Fall 2016, Volume 1
5 Editor’s Note
20 Hot Flash! Occupational
6 Adviser’s Note
By Faculty Adviser Jane F. Thrailkill
Therapists, Let’s Talk About Cancer A narrative by Rebekah Bhavani Crisp
7 Release
24 Listening
8 The Silent Struggle
25 E.R.
9 Intravenous Fly Trap
26 My First Day as a CNA
11 Forgetful
30 Church
14 Erythema Migrans (lit.
32 Are We Treating a
From Editor-in-Chief Manisha Mishra
A poem by Katie Huber A poem by Marissa Rice A poem by Ellen Boyette A narrative by Kat Tan Wandering Redness) A poem by Jessica Boulton
15 Medicinal
A poem by Bryan Head
16 Aliya
A photo series by Veronica Nguyen
A poem by Matthew Harris A poem by Calvin Oslen A narrative by Nakisa Sadeghi A poem by Sumeet Patwardhan Disease or a Culture? A research paper by Kendall Cameron
36 Explaining It To You
(Imagine PTSD Like This) A poem by Kat Tan
37 Editorial Team
5
Editor’s Note
“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.” – Oliver Sacks
Dear Readers, No matter how hard one tries to separate the person from the disease or the disease from the person, one simply cannot. The two are deeply intertwined. How one analyzes and interprets the “contents” of the human body is dependent on the approach they choose to use. While Medicine solely examines the body as a biological machine that needs to be fine-tuned and maintained, the Health Humanities views the body as a medium that fosters the cultivations of experiences and stories. As one of the fastest growing interdisciplinary fields, the Health Humanities brings forth multiple perspectives and modes of analysis for medicine through a humanistic perspective. Rather than merely focusing on the what behind ideas and concepts, the Health Humanities also focuses on the why and how, thus allowing researchers and professionals to go far beyond the biomedical disease and analyze the factors that compromise and affect the human health and condition. This emerging field helps to give meaning to experiences of health and disability, voices to patients, history to procedures and practices, and empathy to actions. Whether it is grieving the loss of a loved one, coming to terms with a diagnosis, examining the relationship between a doctor and a patient, or analyzing the sociocultural effects of a medical phenomenon, this inaugural issue of The Health Humanities Journal is poignant. Our authors come from a variety of backgrounds and disciplines and yet they all still find the relevance and importance of the Health Humanities in their respective fields and, furthermore, in their lives. Hopefully some of these pieces will resonate with you as they did with me and the rest of the Editorial Team. Lastly, I would like to express my sincerest and deepest gratitude to our sponsors and faculty advisor Dr. Jane Thrailkill for providing the resources and support system of turning this idea into a reality, to the Editorial Team for their hard work and dedication throughout the ambiguous process of creating a new journal, to our authors for their absolutely beautiful and thoughtful contributions, and to you, our readers, for your support by just simply holding this journal. And lastly, I would like to thank my grandmother who was my inspiration and motivation for all of this – I hope this brings a smile to your face. Sincerely, Manisha Mishra Editor-in-Chief
6
Adviser’s Note Dear Readers, I am delighted to be writing a note from the adviser for this inaugural issue of the Health Humanities Journal. This wide-ranging, multi-genre periodical was the brainchild of editor-in-chief Manisha Mishra, now a junior at UNC. What you are holding in your hands began in an experimental class last spring: “Intensive Research in Health Humanities” (ENGL 695). Manisha had an idea: with all the activity around humanistic approaches to healthcare at UNC, why not start a journal showcasing some of this work? She decided this would be her capstone project in the class. In a true interdisciplinary fashion, she first enlisted collaborators and an Editorial Team who reviewed the field, surveyed current publications on campus, developed a mission statement, crafted the business plan, secured funding, spread the word, created an Editorial Team, solicited submissions, did the selecting, editing, designing…and voila! Six months from conception, The Health Humanities Journal has arrived. To me, this student-run process embodies the expansive, mixed methods, can-do attitude of Health Humanities as is it practiced both in the classroom and around the world. The Health Humanities provides an interdisciplinary space to tactfully explore and help shape the shared (yet wildly diverse) human experiences of illness, disability, caregiving, and mortality. It draws from the sciences widely construed, seeking the clarity afforded by methods of inquiry we have developed in biology, epidemiology, sociology, public health, and engineering. But at the same time, HH enlists the arts and humanities, embracing the complexity that stories, events, institutions, and other products of human making allow us to see. Here we turn to disciplines such as history, English, philosophy, art history, geography, journalism. Health Humanities names a zone of passionate inquiry. The alleviation of suffering, the kindling of compassion, the widening of care, the reform of institutions – these are aspirations built into this field. Read this good work, and be inspired. And please be in touch if you’d like to learn more about, or contribute to, these exciting endeavors. All my best, Jane F. Thrailkill Faculty Adviser
7
release by Katie Huber
“any questions?� he asked, laughing. these are the words of my grandfather just a few minutes after my family makes the emotional, complicated decision to follow his wishes and remove the ventilator that has been sustaining his body. it feels paradoxical; it is the allowance of death that brings my grandfather’s spirit back to life.
Katie Huber is a junior from Apex, North Carolina who is majoring in Biology and Anthropology and minoring in Medicine, Literature, and Culture.
8
The Silent Struggle by Marissa Rice It’s banging on a glass wall While everyone passes without a glance It’s fight or flight in the absence of a threat It’s folding under an overwhelming weight Of incessant irrational thought “You’re being dramatic,” my sister muttered She didn’t know the damage of those words Nobody knows the burden of everything buried I do
Marissa Rice is a junior from Ponte Vedra Beach, Florida who is majoring in Biology and minoring in Medicine, Literature, and Culture.
9
Intravenous Fly Trap by Ellen Boyette “The requirement of redundant triggering in this mechanism serves as a safeguard against wasting energy by trapping objects with no nutritional value.”- Wikipedia I. Administered into, how long and through which vein, tracing sky up the wrist line by line? Assume the forearm. Assume the worst, for thickness of the needle as it breaks into skin. No time for ‘no time for the fears of children’ shaken from your mother’s throat like laminate paper. A fly along the fluorescent twitches, you itch your leg and loose your mother’s grip, sink as the IV leads you through yourself and up into. II. And up into the realm of past selves kept like a coy pond in the unconscious. No bread to throw in, as in, starving and listless. Nauseous to have gone down this far, this far past the bloody shawl passed on and still passing. Bloody shawl of nerve strands and recurring furrows, heirloom postures noted in scrapbooks of solemn similar profiles, sepia washed. Past that, now, down to just after the beginning. Earth wild and brimming with flora, etc., you are up. III. With flora, etc., you are up amongst the sundews and swamp reeds, the foxgloves. Up amongst and looming neck up. Mouth parted on the floor of the new world. You the living picture of precise violent pre-strike, Mother
10 Nature’s answer to the hunter’s coil-spring trap. Housefly wafts by before houses are invented. What a hunger, tongueless and whose teeth are still herbaceous. You envy with the envy of a mouth with no face, envy cicadas at nightfall, who fall from where you can’t stop their singing. IV. You can’t stop their singing, can’t stop pairing the sound with a vision of two dry hands shifting against each other. But what are hands to plant matter on a bloodline? It’s knowing like going up the coy pond mouth open. Pass back into the conscious mind. Pass here, you wake your dream. Body sedated, sated in ether. And there is no date to revelation, nor revelation to negotiate back into waking. Just the hunger rooting, the shelled creature’s humming. There is something like remorse in the bloody shawl ripping. Slide into your life like a hearse for your mother. V. Into your life like a hearse, for your mother is calling out to you and yet there is a cloud between the bodies. First sight, the silver tool retracting from the river of the arm, long and thin, a saber tooth from marrow. Second, narrow hand doubled on the sheet, yours the way a twin’s palm belies the same lines of fate. The other, your mother’s. Something removed from shawl of blood in the sense that you’re recovered. Follow the old fly, iris, as it scales the ceiling light, lights from its ledge and lands on the sill, arresting the neck of a houseplant, plastic.
Ellen Boyette is a senior from Hendersonville, North Carolina who is majoring in English and minoring in Poetry Writing.
11
Forgetful by Kat Tan Get a call. It’s 6:38 AM, according to a squint at the buzzing, jingling cell phone. Too early for bad news. No matter. Hit the talk button—no, not that one, the green one—almost hang up on your mother. Listen, need her to repeat herself again. Pneumonia? Hospital? But he was fine a year ago. It’s too dark out to drive. Or be fully awake. Are you okay? You are not the one lying delirious in a hospital bed, too weak to cough or want to keep breathing. Instead, you are fully six hundred and eighty-eight miles away in bed with a warm body that smells of goat milk soap. It’s impossible to feel guilty for not being there, but you somehow manage it. Lie. Tell your mother that it’s okay that he forgot your name, that you’re almost done writing the book. Tell her that you’ll be home soon. Hang up. Lie still and awake until the sun bleeds through the blinds. Six hundred and eighty-eight miles and about as many goodbyes later, walk in through the front door. The family home still smells of steamed rice and dark vinegar. It’s tidier than you remember it. The bookshelf looks untouched. Your mother warns you not to mess things up, and you take it as a joke, mostly, but also you know that you took up a lot of space when you lived here. It doesn’t take much to do so again. Put boots by the backdoor, forget about them. Put dinner bowl and dirty chopsticks in the sink, forget about them. Let’s go to the nursing home, your mother suggests. Tomorrow, you say. Going is the only thing you can’t manage to forget. Over dinner, your little brothers pretend to meet you for the first time and you force a laugh. They aren’t so little anymore, and this is as clear as their cautious disapproval of your presence. It took a dying old man to bring you back here? their eyes accused. Family wasn’t enough? Old-people rehab is pretty. It’s in a part of town you never visited as a kid. There are bushes and bushes of roses and your Ama is allergic to all of them. Mother is at work today. Bring Ama to see him. Walk Ama straight up to the front desk and gawk at the white-people finery splattered across the lobby. A wrinkled lady wearing pearls and a bad perm naps by the grandfather clock. Try not to stare at how dead she looks. Kind of succeed.
12 Upstairs, nurses with pinched faces run around with clipboards. Everyone is wearing Crocs. Ama knows the way. But in the room, you are both lost. The bed is empty, the fuzzy cream blanket thrown carelessly off to one side. A nurse with a rosary around her neck is washing a groaning mass behind a curtain on the other side. Smell pee. Ignore it, ask her a question. He is pedaling a modified spin bike when you find the physical therapy room. The bright yellow t-shirt is several sizes too large and he is wearing leather oxfords, not sneakers. A nurse holds one bony shoulder with one hand and a chart with the other. Smiling, Ama quizzes her husband on your name and gives him the answer too quickly. He is grinning at nothing. Back in the room, he naps. Ama is reading the Chinese newspaper. Pick up the frozen orange juice cup on the table. Think about it. Put it back down. Behind the curtain, someone is speaking in tongues or just choking on himself. There is a documentary on about communicating with aliens. Turn it off. The choking sound grows louder. Remember him with a voice too big for his body. He sang at all the birthday parties. Danny Boy, Love is a Many-Splendored Thing, My Way, Somewhere Over the Rainbow, All I Ask of You. The same songs outed him a few months ago. He announced that he was singing another song, but then sang the same one again. Over and over. Look at the bones under the cream blanket. He is too small for his body now.
Return and he is screaming. Are you leaving me here to die? I was a good husband, a good father. Sit down on the bed. Watch him wake violently. Before, Ama chastised him for forgetting his jacket or leaving the burner on and ruining the oatmeal. Or your mother yelled at him for throwing something useful away. He would rage back, saying that if they were going to treat him that way, he wanted to die. He was an old man, he could do it. They teased him for saying such things. He couldn’t die if he wanted to go to Flushing for mass. He couldn’t die if he wanted to eat the cantaloupe that was bought for dessert. Sometimes he laughed. Sometimes not. The watery brown eyes have no anger in them now. Pretend to be gentle. I’m not okay. Smooth the hairs down on the liver-spotted scalp. I want to die. The nurses laugh at him. This must be to cope. After all,
13 they are surrounded by drooling old people who refuse to take their medications and wander out of their room. It’s impossible to tell whether the nurses enjoy their job. They laugh so hard and with so much anger in their eyes as they shoo a bent body into standing position or back to bed. The walls are painted over with the streets of London, the Eiffel Tower, a fruit stand, an old-fashioned barbershop front—lovely and ultimately two-dimensional. The sunflowers are fake. Pinch them as the door opens again for the blood draw. The needle stick looks like a little stapler punching a hole into the fleshy pad of his middle finger. A small bubble of blood is quickly wiped away. There is no resistance, no pain along the wrinkles and trenches of his face. Ama tells him one morning that she will be back later that evening. He nods and smiles emptily. Return. Return and he is screaming. Are you leaving me here to die? I was a good husband, a good father. The nurse says he’s been acting like this all day. You asked him to sing at your wedding a long time ago. Anything you’d like, you said when he asked what he should sing. You were twelve years old. This was before the running away began. Before the dropping out of medical school and driving across the country and long silences began. You were twelve, Akong’s sunshine, the happiest and most promising granddaughter alive. “If I loved you, words wouldn’t come in an easy way…” His brown eyes brimmed with affection. Back at your apartment, field the occasional call from home. The desk is cluttered with unwashed things and there are a few unidentifiable wrappers by the wastebasket. Tilt the chair as far back as it goes and listen to your mother tell you that he remembered your name today. The other week, they wedged his body and the walker between them and went to the park. Dry your hair before going out. Make no promises to do so and hang up. Look down at your hands, then at the body dreaming beneath your covers. It is barely morning. There is a book waiting to be written. Try to remember how to breathe. Kind of succeed. “Soon you’d leave me, off you would go in the mist of day. Never, never to know how I loved you. If I loved you.”
Kat Tan is a sophomore from Great Neck, New York who is majoring in Bioethics and minoring in Creative Writing.
14
Erythema migrans (lit. Wandering Redness) by Jessica Boulton I don’t remember much. Not the doctor’s room, or hearing the diagnosis: Lyme. I remember collapsing under a blanket on a hot, hazy afternoon; cold emanating from somewhere behind my rib cage. I don’t remember much, and when I do it’s fragmented, just out of sight. I remember a red bullseye, x marks the spot.
Jessica Boulton is a senior from Chalfont, Pennsylvania who is majoring in Biology and minoring in Marine Sciences.
15
Medicinal by Bryan Head When I wake up the morning after the night I forgot my meds, I notice (somehow, before the sweat and shit) the cracked, rusted spine of the bed, and as far as I know, that’s why I am tired. The center frame is still broken. It’s missing the bolt I’ve never looked for well, it might be the bolt that’s broken. It might be a lot of things. For now, let’s just blame the bolt. That way, we can say it’s a single piece that failed. Better that, than to blame the one who built the bed, or to tear it all apart looking for answers.
.....
Bryan Head is a senior from Asheville, North Carolina who is majoring in Journalism with a specialization in Strategic Communication and minoring in Creative Writing.
16
Aliya by Veronica Nguyen Meet Aliya. She is a 9-year-old girl born with Treacher Collins Syndrome. From the moment she was born in Arraijan, Panama, her mother welcomed her with loving arms and determined attitude to raise her to be as healthy and vibrant as any other child. Lacking the money and medical resources, she began traveling throughout Panama to raise awareness and find doctors that could give treatments to allow Aliya to enjoy her childhood as best as she possibly could. Her mother was able to receive funding and support from warm-hearted people who met sweet Aliya and want to help. The love and care of her mother is what keeps Aliya as innocent and happy as the day I met her while setting up open clinics in Panama. We, as UNC volunteers in Global Medical Training, had the opportunity to set up clinics in rural areas of Panama to help with people who felt they needed some medical attention. Above all, we thank these Panamanians for coming to us, to give us an opportunity to meet with them and giving us experience in relationship building with patients. I learned that health care is very much a two-way street, both parties benefit from the interactions between the patient and the health care providers. As one party is diagnosed and treated, the other party gains invaluable experience and appreciation from the interaction. Aliya is an example of a patient who is in need of strong support and medical care in order to continue living a happy and healthy life. Her mother provides her with that caring support and her treatment is now being overseen by supporting local and international doctors who are observing her growth before conducting further treatments or surgeries. Aliya is a smart, growing girl and is fortunate to have the love and resources for her to continue her bright journey.
17
Aliya is playing with the stethoscope of Global Medical Training volunteer (UNC student Sadiyya Ingawa).
18
Aliya is pictured here in her mother’s arms. She has a tube in her neck indicating where the tracheostomy was performed to improve her breathing.
19
Aliya is intrigued by the stethoscope, as Sadiyya shows her to place the chest piece over her heart. Pictured here are UNC students Sadiyya Ingawa and Veronica Nguyen.
Veronica Nguyen is a junior from Springfield, Virginia who is majoring in Chemistry and Economics and minoring in Philosophy, Politics, and Economics.
20
Hot Flash! Occupational Therapists, Let’s Talk About Cancer! by Rebekah Bhavani Crisp I’m having hot flashes now. Right now. It’s an icy metallic heat that billows a raving collar up the sides of my neck, across the back of the head and around the entire skull. I sit, hunkered down, telling myself to relax and simply feel it while it does its steamy tricks. I am bald now, so the beads of sweat that pop out across the crown of my head are unavoidably screaming that “something is happening here!” I let the belly go soft when I notice the holding there. I try to stay focused on whatever activity is getting interrupted. And I feel hot – weirdly hot. I never had children. I never had a wedding shower or a marriage, and I’ve not had the typical life course transitions that people have, the sort that becomes the primary or, worse, solitary topic of conversation until some undetermined future point in time. I did not spend years discussing the potty habits, cute smiles, and first accomplishments of my child with other mothers – or with motherless women held hostage by my absolutely defendable obsession. What could be more important? However, I did spend time listening, and I did make new friends who either were single or had fully grown children. Today, I know what it is like to want to talk about an all-consuming life event because I’ve unexpectedly been thrust into a big life transition. I am being treated for cancer. But I am not cancer. My life is more than infusions, weird body aches, and – now – drug induced menopause. Still, I have been more curious about this process than I could have predicted. There is everything to learn about being a patient; preparing to deal with a potentially chronic condition; financing medical care; and going through the bodily insults of surgery, chemotherapy, diagnostic procedures, and doctor consults. Although my healthcare team members have been excellence in action, their
21 focus viewed me through the medical model. I was a body, there was something out of whack, and they were experts in a technology to address it. Still, this transition was impacting every part of my life experience! There has been no one on my medical team to discuss available resources and outline reasonable next steps. No one of them has been a personal advocate who could help fill in the gaps between the various specialists assigned to my case. Even though they seemed to genuinely care about me, not a single one inquired about how my life might be changing in response to a prolonged treatment nor how I might establish a sense of balance in the midst of tumultuous change. True, I had to learn how to be a patient, but I was still more than just a patient. I have needed a healthcare professional to work with me as a woman who was learning how to navigate this transition in life. This is a person I could have really talked with! My friends and family sincerely are interested in the chemotherapy and want to know how I am reassembling the pieces of my interrupted life. But I don’t get what I need from talking about it a lot with them, despite there being new things to say every next phase of the experience. Their suggestions, though well-meaning, miss the mark on how to live engaging life in this new context. It would be great if people could give guidance that was actually relevant to me, to the way I live my life, and to my home – not just great ideas inspired by their caring and creative problem solving. A useful conversation might include practical approaches to exercising moderately 150 minutes a week or ways to feel comfortable with a reconstructed body part. I have gratefully enjoyed the conversations about everything but cancer with my friends and family, meaningful social connection has been an instrumental part of my healing. But when seeking counsel, I usually reach out to the other women I know who have gone through cancer treatment, or I have a conversation with my self – both my student of healthcare self and my connected with spirit self. My non-cancer life includes participation in a graduate program. I am preparing to become an occupational therapist. Someday soon, I hope to take my experience, my education, and my insights to support people like me – people whose lives got interrupted and thrust into an unexpected transition by an accident, diagnosis, or health condition. I could have used the help of an occupational therapist and was grateful that because
22 of my education, I had that lens through which to consider my own situation. I did not need a psychological counselor; I needed guidance about how to do this thing called cancer, because everything in my entire life basically got impacted by this one single diagnosis. I needed to talk, maybe even obsessively discuss, the ins and outs of all this new life and death stuff happening. It was touching my body, my mind, my spirit, and many aspects of my practical lived life. Yet, when I looked in the mirror, I looked exactly the same as before the diagnosis (until my hair fell out almost four months later). I was just as fatigued as I had been for the months before figuring out why I was always so tired. So on the surface, it seemed my life had not changed all that much. Except it had changed, and I experienced that change at the level of occupation – the activities I was able (and not so able anymore) to engage in. It would have helped to have someone on my healthcare team to talk to about things specifically in the scope of occupational therapy practice – participation in life’s roles, routines, and meaningful activities. Namely, how do I authentically do life in this new context of being a person living with cancer?
Strangely, I feel lucky. Not lucky to be thrust into hot flashes, baldness, and prolonged medical treatments, but lucky that I had myself to talk to. Because not only did I have cancer, I became a patient. This was a new role, and it came with a set of responsibilities, actions, and different modes of communication that I literally had to begin learning overnight – while I was digesting the shock and emotional upheaval of being told I had cancer. I had everything to learn, but no one on my healthcare team had the job of telling me how things might unfold and how I could best prepare and adapt. I could have used a quality-of-life expert, a coach who could help prepare me for the MRIs, the aftermath of surgery, and the changes in what balance and well-being look like in life during cancer treatment. After surgery, I had to adapt the way I slept, got dressed, bathed, walked the dog, and made love with my partner.
23 Throughout all the treatment, I’ve had to conserve my energy, reconsider some lifestyle choices, and become an expert in taking medications as prescribed. I am experimenting with techniques for adapting and integrating different habits in my life. I am discovering new tricks for balancing life as a student, patient, wife, friend, and member of the community. An occupational therapist could have provided education, coaching, and support on all this and more. However, I did not have an occupational therapist; instead, I talked myself through most of these things, grateful for the education and inquiry I had been part of before being told I had cancer. Strangely, I feel lucky. Not lucky to be thrust into hot flashes, baldness, and prolonged medical treatments, but lucky that I had myself to talk to. In my thoughts and on the pages of my journal, I could talk the ear off the occupational therapist that lived in my head – the future professional me. I also talked to the yoga and meditation teacher that lives in my head; the practices I’ve learned have helped me to stay peaceful through painful ordeals and to stay positive throughout. I talked with the best friend, daughter, sister, and poet inside me who are generous with different perspectives, patience, and acceptance and who seem always available for deep discussions about the meaning of life, the how-to’s of short hair styles, and random observations about conversations. Knowing that I have inner resources, including a perpetually listening ear, I have been mostly freed from the desire to talk obsessively about this cancer thing. Still, I find that I have a lot to say about what could have helped me throughout the process. And I do want to have the conversation with other women about the life transition of hormonal changes and hot flashes. Maybe it won’t be the only topic of conversation, but I want to be part of that club – sharing experiences, cooling tips, and laughs. And someday, I hope to become an occupational therapist for others who need support navigating a life changed by a health transition – one transition about which I will be able to talk and offer client-centered therapy. Meanwhile, I’ll keep most of my thoughts to myself, but I can’t help commenting on that flash of heat when it swarms over the top of my head. Good thing it has passed for now. Rebekah Bhavani Crisp is a graduate student from Raleigh, North Carolina who is in the Division of Occupational Science and Occupational Therapy in the School of Medicine.
24
Listening by Matthew Harris Cystic fibrosis unit. Same rooms, different people. Usual question, unexpected response. I asked if you wanted coffee, but you gave me your story. I wished to understand, to relate yet I wasn’t in a hospital bed. Why tell the volunteer? Perhaps you sought something different than understanding. You knew I had time for listening.
Matthew Harris is a senior from Greensboro, North Carolina who is majoring in Global Studies and is minoring in Chemistry and Biology.
25
E.R. by Calvin Olsen I hold a vial of my wife’s blood, hieroglyphic name and DOB in typewriter font. CSN 522202000 HAR 408721042 MRN 3201237 The tube is cold to the touch, blood separated during the ultrasound, sloppy initials on the lopsided sticker. This stuff between my fingers keeps her here on earth, flowing or coerced through her body, lingering on the too-small bed sheets she leaves behind upon waking not unlike those wrapped around her feet now. I am familiar with this substance, more, perhaps, than I am my own, forced from me a few times worth speaking of. The bed tilts. I want to push all the buttons, squeeze the tubes and rattle needles sitting in their see-through bins, but she is tired, and I can’t leave. She’d know that I am eating and kill me.
Calvin Olsen is a graduate student from Meridian, Idaho who is in the Master of Arts program in Literature, Medicine, and Culture.
26
My First Day as a CNA by Nakisa Sadeghi I was nervous as I drove up to the retirement community. It was my first day working as a Certified Nursing Assistant. Earlier that morning, I had received a text from Blue Skies Home Care, a company that matches caregivers and clients, notifying me of an urgent opportunity. One of the residents at the retirement community needed a caregiver for three hours that evening, because the CNA on charge was not feeling well. I was instructed to sit with the client, an older gentleman with dementia, and ensure that he did not become overly agitated. I arrived on site wearing a pair of black slacks and a Carolina blue-colored blouse; I did not yet own any scrubs. As I made my way to the nursing center, I rehearsed in my head the various skills that I had learned while training, such as feeding clients and aiding with wheelchair transfers. I passed the North Carolina CNA test, I thought. I just need to remember the steps for each skill and execute them in order. When I arrived at the client’s room, I could hear loud noises through the door. From the voices, I figured that there were at least seven people in the room. I knocked and waited nervously. A young woman dressed in green scrubs, Jean, opened the door and led me inside. After engaging in some small talk, she confessed to me that she was actually feeling fine, but that she could not “handle any more work today.” I asked what she meant. “You’ll see; he’s just a lot.” Jean proceeded to warn me that the client was extremely agitated and that his screams and shouts were particularly heightened that day. She cautioned that he would likely yell insults at me, and that he might even use curse words and say hurtful names. Her final advice to me, a first-time CNA, was to simply ignore the negative commentary and to not take any insults personally. At the time, the client, Dr. Wilson, was being assisted in the restroom by the nurse in charge, who had been called in by Jean. Dr. Wilson’s wife, Mary, was also in the restroom with him. Eventually,
27 the nurse left the room to resume activities with other residents in the home, and both Dr. Wilson and Mary returned to the main bedroom. The room suddenly felt very silent. I sat across from Dr. Wilson and next to Mary, to whom I had been briefly introduced. The room was rather small, and a divider separated his room space from the other half of the room, which was reserved for another resident. This other half was not occupied. Mary turned on the TV and we sat in silence as a tennis match played in the background. The monotonous sounds of tennis balls hitting racquets and the hum of a nearby lawn mower dominated the room. Though Dr. Wilson seemed to be resting with his eyes closed, he occasionally yelled out about his pain. “I can’t do this anymore… I simply cannot bear this. I can’t live like this any longer.” Mary’s eyes remained fixed on the tennis match and her response was alarmingly calm: “I understand, but you don’t have a choice, do you?” Her placid demeanor and sympathetic tone seemed to simultaneously relax and agitate him further. Soon after, Mary turned off the TV, following Dr. Wilson’s insistence that he be left in silence. His shouts and agonizing cries persisted while Mary and I attempted to engage him in conversation. At one point, Dr. Wilson requested that Mary bring him a glass of gin. Mary told him that nursing homes do not allow residents to carry gin and that he would have to settle for water or juice. “Then what’s the point?” he asked. After about a half hour of mild conversation and silence shared between the three of us, Mary announced that she had to leave. It was clear that she was exhausted from the day’s events and that she had other tasks to fulfill back at home. I nervously bid her farewell, while Dr. Wilson indignantly yelled that it was best if she left anyway. For the first time, Dr. Wilson and I were alone. I noticed that his eyes were closed and I felt reluctant to speak, in fear of bothering him or disrupting his thoughts. Dr. Wilson broke the silence first by remorsefully expressing that he recognized how hard he was on Mary, but that they had been married for 33 years. He repeated that fact proudly. “How did you meet Mary?” I asked. “We met in Geneva. I fell in love with her because she had French characteristics.” “What does that mean, that she had French characteristics?”
28 “Well, she spoke French. And I don’t know, but I just knew.” As I scanned the room to find something to do, I could see that his glass of water was filled, and that his book was wellpositioned next to his chair; I searched for other ways to be helpful. Above the TV, I spotted a white sheet of paper that had been taped to the wall. On the paper was a list of “tips” or “pointers” for caregivers who might be caring for Dr. Wilson. According to the author of this list, Dr. Wilson was a theologian who had traveled to Africa as a missionary. He enjoyed sharing memories of his upbringing in Yorkshire, England and he was a prominent former university professor. Most of all, he loved to speak French. In the background, I could hear Dr. Wilson’s occasional moans: “I can’t do this. Someone get me out. Make this end.” As soon as I started to speak to him in French, his demeanor changed. He began to smile and his tone became warmer. “Vous parlez francais? J’étudie la littérature française à l’université,” I told him. (“You speak French? I study French literature in college.”) “Oui, bien sûr. Le Français est ma langue préférée,” he replied. (Yes, of course. French is my favorite language) I began to feel more comfortable with Dr. Wilson. Admittedly, our conversations were still filled with intermittent periods of silence, during which he would appear to doze off. But, when he regained alertness, I asked him questions. “What branch of theology most interests you?” “I’m a systematic theologian.” “I don’t know much about that…” He smiled. “Oh, I know a lot about it…” Dinner was served by the head nurse at around 5:15 PM. Dr. Wilson was not overwhelmingly pleased with the selection. “This is much too much food. I cannot possibly finish this. I don’t want this chicken.” “What’s your favorite food, Dr. Wilson?” I asked. He did not hesitate: “Fish and chips. You have to go to Yorkshire though, that’s the only place to get them.” At precisely 6:45 PM, Dr. Wilson looked down at his watch and began to tell me about a TV program from his childhood. Back in Yorkshire, he would rush to the TV every week at 6:45, sharp, to watch an investigative, criminal justice show for kids. I do not recall the name of it, but we discussed it for a long time. Throughout the evening, Dr. Wilson often asked for his “black notebook.” I later learned that this notebook was, in fact,
29 an agenda book and that it was almost completely empty. As he flipped through the pages, he asked me for the date. “So, what is it that I have to do today? What do I have to log in my book?” he asked. I struggled to figure out how to answer this question. “To whom should I report?” he demanded. Sitting in front of me, I saw a disciplined man who had once lived his entire life according to an active, meticulously planned schedule. He was accustomed to setting and following routines, and his small black notebook reflected a habit developed over decades. Dr. Wilson was still the same person, despite his dementia.
A divide existed between us on two fronts. We were in a caregiver-patient relationship, in which I provided care while he received it. At one point, he announced that he needed to use the restroom. As Jean had instructed me to do earlier that day, I reached for the call bell to notify the charge nurse, who would assist him in walking to the bathroom. Dr. Wilson noticed this and looked at me, baffled. He said that he did not need anyone to come and help him. “I’ve done this many times before, by myself.” I was at a loss for words. A divide existed between us on two fronts. We were in a caregiver-patient relationship, in which I provided care while he received it. In fact, I was being paid to be a qualified, professional figure, of sorts, who took care of his needs. At the same time, on a more fundamental level, he was an older gentleman, a scholar and former professor, while I was a mere 21-year old aspiring medical school student. I had the utmost respect for this man. So, then, how could I deny his request to use the bathroom? By the time that I left, Dr. Wilson was in his bed, ready to sleep. I called an 888 number to clock out, greeted the arriving caregiver assigned to the upcoming night shift, and said goodbye to Dr. Wilson. He was half-asleep. “Goodbye, Dr. Wilson. I hope that you have a great night.” “Goodbye, now. Will I be seeing you again? Never mind Have a great night.” Nakisa Sadeghi is a senior from Alexandria, Virginia who is majoring in French and Francophone Studies and minoring in Business.
30
Church by Sumeet Patwardhan For Ellen Stretched on factory plastic in scratchy gown with ass
malignant families. My mother. Always telling me to pull
from room to cafeteria to parked car. Cancer
primed for probe, you rethink everything: faith
my head out my you know. Look up and smell the roses,
really is all that bad. My doctors now turn up the
in the establishment, the risk of intracolonic explosion
she’d say. I’d say, that’s not the phrase you’re looking for
radio – it lessens anxiety, apparently – before launching
if intestinal methane ignites, if cancer is
and she would grin, that famous Ellen smile
into the final patient briefing. The are you sure you
really all that bad. But this all really started with
my dad said he married her for all those years
Colon Prep – a three-day course brimming
ago. She came to this same ward after they found
want this? Without anesthesia? With nobody here? That piece-of-shit spiel. I get it every ten years. I’m sick
blood where they shouldn’t of it reminding have. Probably me: I’m the only child who buried hemorrhoids, requiring students they said. We tried his parents. I’m the to bring only everything: faith, end of the bell curve, moist towelettes. the limits of God’s They want you emptied the establishment, the sleepless intragoodness. Because and tested: the young part of the evil in and middle-aged from hospital walks the problem of evil is with clear liquids, permitting unlimited bathroom breaks,
31
this flexible tube topped with fiber-optic camera about to be navigated through my anus and the other part is living while death surrounds you. While everyone you know passes in the same way, the same pale gaze, the same bed used to it by now. I should be. But I believe despite everything: faith amid the ruined. The risk of hoping against hope is losing what I never had. Cancer is just a matter of polyps. Nothing that light cannot fix. Sumeet Patwardhan is a senior from Chandler, Arizona who is majoring in Philosophy and minoring in Poetry Writing.
32
Are We Treating a Disease or a Culture? by Kendall Cameron The life expectancy for those living with HIV in Britain has increased by nearly 15 years since the late 90s1. Over 110 million people have been saved by the measles vaccine since the 1960s10,11. Modern medicine has saved millions of lives and promises to save millions upon millions more. Yet, our medical system does not lack flaws and limitations. Modern medicine focuses entirely on science, not sociology. However, social factors and behaviors play key roles in disease and illness. HIV, obesity, and vaccine-preventable diseases are prime examples of illnesses that cannot be limited to their medical causes. Only when healthcare providers fully understand cultural factors involved in disease can they hope to implement successful prevention and treatment programs. Between 2003 and 2006, the prevalence of HIV in women living in the Caribbean and Latin America increased by 10%, a change that is greatly blamed on machismo2. Machismo represents the popular culture in which males are the providers and the protectors of the family, and are entitled to flaunt their dominance by engaging in behaviors such as abuse, drinking, and infidelity. The promiscuity males use to assert their sexual dominance has had tremendous consequences on the women in Latin American communities, as men that contract HIV often transmit it to numerous lovers, as well as their wives. Further adding to the increased risk among women is the related concept of marianismo, in which a woman is expected to be submissive to a male and do as he wishes3. Without the ability to take control of their own sexual health, women face an increased risk of contracting HIV, as well as other sexually-transmitted infections3. Females are not the only ones to suffer due to machismo and other social constructs. In 2013, 79% of the AIDS-related deaths in Santa Cruz were males, often due to lack of detection or treatment for a number of cultural reasons4. Anthropologist Carina Heckert recounts the story of Rafael, a 45-year-old man living in Santa Cruz who struggles with his HIV diagnosis due to the social constructs surrounding the disease, in her article Blaming Machismo: How the
33 Social Imaginary Is Failing Men with HIV in Santa Cruz, Bolivia. “I don’t know if I really have this sickness that they tell me I have. I was never a womanizer. I’ve always worked and worked. When I was younger, I had relationships, but I was never a womanizer,” Rafael tells Carina4. Rafael, like many Latin American men, associates HIV with machismo and, because he does not consider himself a machista, denies that he could be at risk of contracting such a disease. The blame that is placed on machismo for the spread of HIV portrays men as the villains, further ostracizing them from treatment and proper diagnosis4. Without full consideration of such factors related to HIV transmission and treatment, medical professionals lack vital information necessary to making real improvements in modern healthcare. Similar to the strong relationship between machismo and HIV, obesity and “soul food” are deeply intertwined. Soul food describes the diet and cultural pride of many southerners. The diet of fried foods, excessive sugar, and large amounts of starch that has its roots in slavery, segregation, and African American culture, is associated with obesity and related conditions5. The states with the highest rates of obesity unsurprisingly include many southern states, such as Mississippi, Louisiana, Alabama, and South Carolina, suggesting soul food may be a primary cause of such health concerns6. Byron Hurt’s documentary Soul Food Junkies explores the link between southern culture and obesity, heart disease, and other health risks. In his film, Hurt finds that eating healthier isn’t as easy as it seems, when it appears to require ignoring one’s roots and denying an entire culture. Norma Jean Darden voices popular sentiments explored throughout the film, saying, “Soul food is a great part of our culture because it’s a time of coming together. It’s a time of cooking together, talking together, sitting down and consuming together”5. For many southerners, to choose a salad over a plate of fried chicken is to deny one’s upbringing, family, culture, and history. The cause of such high rates of obesity in southern states is not physiological, but social. Acknowledgement and consideration of social factors such as culture and cuisine are essential in fighting the obesity epidemic in America. Just as the adverse health effects of poor diet have not motivated ‘soul food junkies’ to adopt a healthier lifestyle, the understanding of the importance of vaccinations has not prevented mass outbreaks of vaccine-preventable diseases. In 2008, the United States experienced only two outbreaks of a vaccinepreventable disease, whooping cough7. In 2015, there were over 50 outbreaks, ranging from whooping cough to measles to mumps7. The sudden incidence of vaccine-preventable diseases is greatly influenced by social changes in the United States, as
34 anti-vaccination movements have emerged. In 1998, a study conducted by Dr. Andrew Wakefield was published claiming that twelve different children developed autism as a result of the MMR vaccine8. Later, the British Medical Journal condemned the research as faulty and Wakefield lost his medical license in 20118. Despite the confirmed falsity of the data, a distrust of vaccines developed in American culture and persists today. Anthropologist Elisa Sobo conducted a study of parents at a California Waldorf school in which over half of the students were not vaccinated. After countless interviews, Sobo found that many of the parents wanted to exude the air of being “independent thinkers” that had distrust of many American systems9. A large number of concerns emanated from literature in alternative medicine, which also shares a distrust for widely-used medicines and vaccines9. Sobo notes, “Western culture today emphasizes active, informed health care consumerism, in which patients—and parents—are responsible for educating themselves so that they may make wise health care choices. This ‘burden of responsible consumption’ infuses Western parents’ experience with pediatric vaccination”9. In today’s society, parents want to take a more active role in their child’s health, making them more suspicious of doctors’ demands, as well as less compliant. As with obesity in southern communities and HIV in Latin America, the cause for vaccine-preventable outbreaks is almost entirely social. Effective disease prevention methods must involve educating parents in the right way, that adheres to their social beliefs and attitudes. Sobo suggests, “Pro-vaccine messages aimed at Waldorf parents should emphasize how vaccination, booster shots included, help children’s immune systems naturally (vs. working synthetically)”9. Without deeply considering the social and cultural roots of diseases, the medical field has no real hope of making meaningful, lasting improvements on community health. The medical system that we rely on today was built upon the foundation of science. But are we treating a disease, or are we treating a culture? Vaccines are scientifically proven to prevent disease, yet outbreaks continue. Antiretroviral therapy makes it possible to live a nearly full life with HIV, yet so many continue to die12. Healthy foods are known to reduce obesity and heart disease, yet over 60% of the American population continues to eat well above the recommended amount of sugars, fats, and sodium13. The reason for such health problems is not a failure of the science. The lack of integration of social and cultural studies into medicine is to blame for the failures of modern healthcare. It is time to think beyond the sciences and use social constructs to establish lasting, life-saving medicine.
35
References
Kelland, Kate. “UK Study Shows How Better HIV Drugs Extend Lives.” Reuters. Thomson Reuters, 11 Oct. 2011 Olfarnes, Trygve. “HIV Infection Rates Among Women in Latin America and the Caribbean Continue to Increase.” UNFPA. 18 April 2007. Anderson, Hilary, Karen Marcovici, and Kathleen Taylor. “The UNGASS, Gender and Women’s Vulnerability to HIV/AIDS in Latin America and the Caribbean.” PsycEXTRA Dataset Heckert, Carina. “Blaming Machismo : How the Social Imaginary Is Failing Men with HIV in Santa Cruz, Bolivia.” Medical Anthropology (2016): 1-13 Soul Food Junkies. Directed by Byron Hurt. 14 January 2013. Berl, Rachel Pomerance. “Most and Least Obese U.S. States.” U.S. News and World Report, 16 Aug. 2012. “Vaccine-Preventable Outbreaks.” Council on Foreign Relations. Council on Foreign Relations Cohen, Elizabeth, Miriam Falco, and Ed Payne. “Medical Journal: Study Linking Autism, Vaccines Is ‘elaborate Fraud’” CNN. Cable News Network, 06 Jan. 2011 Sobo, Elisa J. “Social Cultivation of Vaccine Refusal and Delay among Waldorf (Steiner) School Parents.” Medical Anthropology Quarterly 29.3 (2015): 381-99. “Alexander Fleming.” New World Encyclopedia “Vaccine Timeline.” Historic Dates and Events Related to Vaccines and Immunization. Immunization Action Coalition. “HIV and AIDS in Latin America Regional Overview.” AVERT. 8 September 2016 2015-2020 Dietary Guidelines for Americans. 8th Edition. U.S. Department of Health and Human Services and U.S. Department of Agriculture. December 2015.
Kendall Cameron is a senior from Charlotte, North Carolina who is majoring in Anthropology and Biology.
36
Explaining It To You (Imagine PTSD Like This) by Kat Tan it feels a little like nails
freshly painted
screaming and splintering the pretty Carolina blue
chipping
begging chased by nightmares
the kind they said don’t exist here
but they do they want to see me strip for them down to my bones i say no
but they keep coming
all the way
they’re already here
Kat Tan is a sophomore from Great Neck, New York who is majoring in Bioethics and minoring in Creative Writing.
37
Editorial Team Editor-in-Chief Manisha Mishra
Caroline Bass
Majors: Political Science and Journalism Major: Biology Minors: Chemistry and Medicine, Minor: Chemistry Class of 2019 Literature, and Culture Class of 2018
Faculty Advisor Jane F. Thrailkill, Ph.D.
Co-Director, HHIVE Lab Department of English and Comparative Literature
Editors Katie Huber
Majors: Biology and Anthropology Minor: Medicine, Literature, and Culture Class of 2018
Turner Wibbelsman
Major: Biology Minors: Chemistry and Creative Writing Class of 2017
Kaylyn Pogson
Majors: Biology and English Minor: Medicine, Literature, and Culture Class of 2017
Chandler Batchelor M.A. in Literature, Medicine, and Culture
Meredith Dorminey
Major: Biology, Minors: Chemistry and Neuroscience Class of 2018
Art Editor Jessica Fletcher
Major: Exercise and Sport Science, Minor: Biology Class of 2017
Layout and Design Editor Stephanie Lamm Major: Journalism Class of 2017
Marketing and Publicity Lead Yakin Ouederni Majors: Global Studies and Journalism Minor: Arabic Class of 2019
Treasurer Sophia Shwartz
Majors: Biology and Russian Literature and Culture Minor: Chemistry Class of 2018