Shortly after reading Vigil, I stumbled upon Sara Baker’s poem, “What Do the Dying Want?” (Spring 2015). In this work, Baker explores the titular question by wondering how healthcare professionals, hospice workers, or even caregivers and family members can properly address the needs of the dying – is the correct way through words and stories, reminiscing, music, meaningful touch, or just holding space and being present?
Read moreWays of Knowing (and Not Knowing) When the Prognosis is Terminal by writer PK Kennedy
"Right in here, remove your clothes. Underwear and bra can stay on but put the robe on so it's open in the back, not the front, okay?"
The words are coming at me in a torrent; I can’t understand any of them, but I know the drill.
I throw my stuff in a bag, take a deep breath, and open the door to the inpatient surgical waiting room. It smells like alcohol and ice and has no memories I can sense. Am I the first person that’s ever come here?
“You’re here for the lumbar?”
I cut her off before she could say puncture. "Yes."
Read moreWritten in the Stars: A Reflection on Youth Cancer by Will Moody
For every young adult diagnosed with cancer, a time comes when we ask ourselves a question.
Why?
Why did this happen to me? Why now? They are not questions we want an answer to, but as humans, we crave finding meaning in our lives. We do it because the alternative is accepting that cosmic randomness determines our very breath.
Why did this happen to me? Why now? They are not questions we want an answer to, but as humans, we crave finding meaning in our lives. We do it because the alternative is accepting that cosmic randomness determines our very breath.
Read morePlaying Favorites: When Caregivers Recognize a Wider Capacity to Love by Flo Gelo
“The Favorite” (Spring 2021 Intima) by clinician Amy Tubay is a story about having one. It’s a story about the defiant heart—how certain patients enter our affections in ways that are largely mysterious. That love—a love that overrides rules and regulations—isn't something we pay enough attention to in the health professions.
Read moreGetting it Right, Even When it Feels Wrong: A Reflection by poet Ceren Ege
In his video “Inside Anxiety and Depression,” William Doan’s words “writing is drawing” were a reminder of my existence as a poet and artist, and how the latter is an identity I felt uncomfortable with for a long time. I squirmed at the creation of “art” out of another’s suffering, even though my father’s illness felt like the only thing worth writing about. Now I sit with a different question: whether anyone’s suffering is entirely separate. I think owning suffering defeats the very aim of why we move it to articulation—to release it, to divide the burden of it, and to comprehend it with others.
Read moreOut of Time? A reflection about illness and its toll on our past, present and future by Sophia Wilson
In her observant poem “Brain as Timepiece (Administering the Clock-Drawing Test to My Patient With Dementia)” (Intima, Fall 2018), Jennifer Wolkin describes the disordered clockface drawn by a patient with dementia: each number stands outside its perimeter like lost digits. The patient’s subsequent drawing of an ‘X’ over the wayward numbers suggests an erasure, not only of cognitive function, but of time itself. Time’s toll equates to a ‘crossing out’ of past, present and future as the ‘disease devours …organ tissue’.
Read moreRooms and Wombs and Writing: A Reflection on Stories Highlighting Life’s Impermanence by Patrick Connolly
I’ve come back to Hemingway’s “Hills Like White Elephants” so many times. He uses third person objective point of view to create a chill in a scene that could otherwise be exuberant and exotic. A train station, central Spain, a hot afternoon, people talking about their lives together, an unspoken baby on the way – and that is a problem.
Read moreFacelessness and the Glass Between Us: Finding Connection In the Era of Covid by Hannah Dischinger, MD
COVID has gotten in the way of so much, literally. It floods lungs with heavy fluid, making it impossible to do meaningful gas exchange. It has become unfathomably, sickly politicized, another ideological wedge between two sides of an already divided country. The currencies of medicine—vulnerability, respect, trust, among others—have become that much harder to exchange. As I read Dr. Uhrig’s beautiful “Facelessness,” I felt some of these barriers lessen in knowing I’m in good company as I think about these new dynamics.
Read moreLauds: A solitary prayer at the scrub sink by pediatric surgeon Kristen A. Zeller
In the hospital, routines carry us through our days and lend a semblance of structure to the chaos of lives disrupted by illness. Some routines happen on a large scale—weekly gatherings of departments for Grand Rounds, hospital leadership meetings for safety huddles, the hustle of getting a cadre of operating rooms started nearly simultaneously in the predawn. Other routines are more intimate—the sequenced process of doing a sterile central line dressing change, the donning and doffing of PPE outside a patient’s room, the one-one-one nursing handoff at shift change.
Read moreStill We Dream: How We Face the Unpredictable World by Mary Anne Moisan
Humans can create a world through perception, imagine a potential life, whether it be the life of a relationship or the life of a baby. We fill in the unknown details to make a whole that is pleasing and good. It’s as if we willfully ignore that so much of life is unpredictable.
Read moreWhen the “Clock of the Living” Runs Down: A Reflection by clinical social worker and chaplain Betty Morningstar
The fractured stories at the end of life often reflect an ineffable but powerful experience of creativity, insight or even revelation. These opportunities arise because the dying person doesn’t see time according to the clock of the living. Imagine how much one could conceive of were time not of the essence.
Read moreThe Limits of Love: A Reflection by Carmela McIntire about Anorexia, Overeating and Fulfillment
Disordered eating occupies a spectrum—anorexia nervosa at one end, morbid obesity at the other. Attempting rigid control of the body and its appetites, anorexics are unable to see themselves and their bodies accurately. Compulsive overeaters—often obese—similarly might not see themselves accurately. In both disorders, controlling food is the aim, a genuine addiction, a strategy through which addicts deal with the world and their own circumstances—a necessary coping skill, even though it is risky to health in both cases.
Read moreWhat I Learned about the ICU: A Reflection by Benjamin Rattray
In her essay “The Shape of the Shore” (Spring 2020 Intima), Rana Awdish takes us into the intensive care unit during the ravages of a pandemic. She shows us “…the desperate thrashing patients on the other side of the glass” and “…the sticky blood on the floor.” As I read the words, my breath becomes shallow as fear and grief pummel into me. Somewhere deep, beneath the shrouds of consciousness, the words resonate, and I feel as though I am slipping beneath an indigo sea.
Read moreMothers and Daughters: A Reflection on Cancer, Caring and Seeing the Whole Picture by poet Kathryn Paul
—After ‘Macroscopic” by Adela Wu (Spring 2021 Intima)
My mother and I were not close. I knew she wanted us to be, but I couldn’t do it her way. For most of my adult life, I kept my distance, emotionally and physically. We lived on opposite sides of the continent. In her 80’s, the creeping dementia my mother never discussed was overtaken by a cruel and much more terrifying diagnosis: Stage IV ovarian cancer.
Aided by her cancer-free twin sister, Mom endured multiple surgeries and two lengthy and debilitating rounds of chemo. Each time, her cancer came roaring back within weeks. Her surgeon suggested an experimental Round Three. Mercifully, her oncologist suggested hospice at home instead.
During the first year of Mom’s illness, I was trapped by my own cancer treatment, unable to participate in her care. I called daily, spoke with her, spoke with my aunt, asked about her pain, her “tummy trouble,” her ascites, and her white count. I took notes and dictated the questions to ask at her next appointment.
As soon as my doctors cleared me to visit her, I did. I was always on the verge of moving in with her, but never quite needed to do so. I flew back and forth. The more debilitated she became—by her cancer and her dementia—the more often I visited.
Adela Wu’s Studio Art piece “Macroscopic” simply and eloquently captures the changes in how I experienced my mother during those last months and weeks. The simplest things gave her joy: A small dish of ice cream. A pain-free nap on the down-stuffed cushions of her couch. Cuddles with her cats. A bird visiting the feeder outside her window.
Even as her disease spread through her body, even as she faded, my mom seemed to crystallize. She became, ultimately, the Essence of herself. And—just at the end—I finally saw her.
Kathryn Paul
Photo by Andrew Givhan
Kathryn Paul (Kathy) is a survivor of many things, including cancer and downsizing. Her poems have appeared in Rogue Agent, Hospital Drive, The Ekphrastic Review, Lunch Ticket, Stirring: A Literary Collection, Pictures of Poets and Poets Unite! The LiTFUSE @10 Anthology. Her poem “Dementia Waltz” appears in the Spring 2021 Intima.
Shakespeare, Stanzas and How We Think About Death by Albert Howard Carter, III, PhD
When my sonnet “All Tuned Up” appeared (Spring 2021 Intima), I was asked to write about another piece published in the journal. I chose “I Picture You Here, But You’re There” (Spring 2020 Intima) by Delilah Leibowitz. Her poem and mine both explore how we think and feel about death.
Read moreHow Touch Affects Healing, a reflection by Wendy Tong
In her Field Notes essay “Hand Holding” (Fall 2019 Intima), Dr. Amanda Swain describes the experience of beginning her surgery rotation as a third year medical student. In the early days of the rotation, she feels an intense sense of being out of place within the “intricately choreographed dance” of the operating room. But when the next patient is wheeled in, Dr. Swain is reminded of how a nurse once took her hand before she underwent surgery, the touch conveying an unforgettable message of comfort during a time of deep vulnerability.
Read moreReimagining Chaos in Art and Poetry by Selene Frost
Anatomy of the Vogue by Meagan Wu. Fall 2017 Intima: A Journal of Narrative Medicine
I’ve long been fascinated by the way structure informs poetics and the practice (and in this case—reception of medical care). In my piece “Field Notes on Form,” I extol the ways in which linguistic structure has the remarkable ability to organize our thoughts, increase our signal within the noise, and etherealize the mundane. In “Post NICU Villanelle,” Joyelle McSweeney uses language not only to remediate the chaos of loss and of leaving but also to deconstruct both the poetic form and herself.
Read moreLife in the Gaps: How Illness Transforms Our Sense of Time by Renata Louwers
It was in those gaps, between our lived experience—the crushing uncertainty about how long my husband would live, the daily reality of his intolerable pain, and the abrupt shift from a life of joyful ease to one spent contemplating death—and the oncology profession’s standards of care, first-line treatments, and numeric pain scales that my frustration festered.
Read moreBecoming the Superheroes Our Parents Need: The Journey from Child to Worthy Caretaker by Usman Hameedi
Our parents are often our first examples of superheroes. They make gourmet meals from minimum wage, give hugs that vanquish our demons, and provide limitless love. They are impervious to damage or decay and are always ready to save our days. So, seeing the human in them, the mortality in their breath is unsettling. When they come to need us, we feel so grossly unprepared.
Read moreWhat Does ‘Paying Attention’ Mean in a Healthcare Setting? A Reflection by Ewan Bowlby
Ewan Bowlby is a doctoral student at the Institute for Theology, Imagination and the Arts (ITIA) in St Andrews. He is researching ways of using mass-media artworks to design new arts-based interventions providing emotional, psychological and spiritual care for cancer patients. Bowlby’s paper “Talk to me like I was a person you loved”: Including Patients’ Perspectives in Cinemeducation” appears in the Spring 2021 Intima: A Journal of Narrative Medicine.
Narrative Medicine is about creating connections: finding words, ideas or stories that bridge the gap between patients and health professionals. This search for common ground is beautifully rendered in Carol Scott-Conner’s short story “Christmas Rose” (Spring 2017 Intima). Her fictional narrative reveals how mutual understanding can emerge in unexpected places. An encounter between the resolute, inscrutable Mrs. Helversen and her oncologist shows that the relationship between a physician and patient can flourish when the physician pays attention to the intimate, personal details of a patient’s story.
Initially, the clinical encounter in “Christmas Rose” seems unpromising, hampered by reticence and disagreement. Mrs. Helversen, who has a neglected tumor on her breast, has been “strong-armed” into a cancer clinic by her concerned daughter, and she is not receptive to the prospect of treatment. Scott-Conner, a Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine, switches the first-person narrative from Mrs. Helversen to her oncologist, allowing the reader to inhabit two alternative perspectives on the same meeting and reminding us that the same interaction can be interpreted very differently.
When I wrote an academic article that appears in the Spring 2021 Intima proposing that patients’ perspectives should be included in “cinemeducation,” these differences in interpretation were central to my argument. Showing clips from films to encourage medical students to relate to a fictional patient is an excellent idea. Yet listening to how patients respond to these clips can enrich this pedagogical method. As I demonstrate through the qualitative research presented in my article, patients “see things differently.” The same fictional scene featuring a patient-doctor interaction can draw responses from patients that surprise and challenge healthcare professionals. So, why not use such scenes as a space in which different perspectives can be expressed and discussed, bringing patients and providers together through the audio-visual medium?
In “Christmas Rose,” it is a rock that facilitates this meeting of minds. While the oncologist is surprised when Mrs. Helversen describes her tumor as a “rose,” betraying a complex emotional attachment to the growth, she finds a way to react empathetically and imaginatively to Mrs. Helversen’s unusual behavior. Offering the elderly patient a desert rose rock in exchange for her tumorous “rose,” the oncologist persuades Mrs. Helversen to accept treatment. This fictional oncologist shows an adaptability and ingenuity that the health professionals involved in my research also exhibited. In my article, I describe how health professionals engaged constructively with patient’s unique or unexpected responses to imagined patient-doctor interactions in films. Listening to both sides and hearing alternative perspectives on the same encounter can yield important, enlightening insights, whether one is participating in a focus group, watching film clips or doing a close reading of a short story such as “Christmas Rose.”
Ewan Bowlby is a doctoral student at the Institute for Theology, Imagination and the Arts (ITIA) in St Andrews. He is researching ways of using mass-media artworks to design new arts-based interventions providing emotional, psychological and spiritual care for cancer patients. This involves using fictional narratives, characters, and imagery to reflect and reframe patients' experiences of living with cancer, helping them to understand and articulate the effect of cancer on their lives. He is developing the impact of his research through an ongoing collaboration with Maggie Jencks Cancer Care Trust (Maggie's) and Northumberland Cancer Support Group (NCSG). Other interests include theological engagement with popular culture, the relationship between theology and humor and the use of narrative form for theological expression. Bowlby’s paper “Talk to me like I was a person you loved”: Including Patients’ Perspectives in Cinemeducation” appears in the Spring 2021 Intima: A Journal of Narrative Medicine.