We Need More Stories From Young Patients by Kelley Yuan

Kelley Yuan will begin her studies at Sidney Kimmel Medical College in 2018 as part of the Penn State/SKMC combined BS/MD program. Her paper entitled "Stories from Kids: The Unheard Voices of Pediatric Patients" appears in the Spring 2018 Intima: A Journal of Narrative Medicine.

Thousands upon thousands of patient narratives. Remember the one from the eleven year old? Me neither.

We need more stories from young patients. They experience illness and emotions just as exquisitely as adults, if not more so. From their accounts we stand to learn a great deal about pain, hope and resilience. My piece, Stories from Kids: The Unheard Voices of Pediatric Patients, represents a small fraction of the many younger voices that narrative medicine has overlooked.

A great example of seeking youth voices is Ali Grzywna’s work, Anorexia Narratives: Stories of Illness & Healing. The accounts she gathered from anorexic teens and adults reveal how anorexia gave them a sense of control, a coping mechanism for other stressors, or a form of identity. Notably, she featured teen voices and the teen experience.

Based on this understanding of the underlying thought processes, therapy has evolved to treat anorexia. Instead of casting off the anorexic identity, patients learn to reshape the narrative to change their behavior—learning to select the healthy voice over the anorexic voice, instead of muting the anorexic voice altogether. Teen stories spurred progress.

Our current understanding of how children and adolescents interpret illness is dreadfully narrow, especially given the recent rise in juvenile autoimmune diseases and adolescent mental health issues. Without the youth perspective, our search for better treatments remains incomplete. The more we seek their stories, the more we can uncover to help these young minds and bodies heal.

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Kelley Yuan will begin her studies at Sidney Kimmel Medical College in 2018 as part of the Penn State/SKMC combined BS/MD program. She studies illustration and fences épée when she should be revising for exams. Her work seeks to capture the rare, light-hearted moments in a field filled with pain, fear, and tough decisions. Her paper entitled "Stories from Kids: The Unheard Voices of Pediatric Patients" appears in the Spring 2018 Intima: A Journal of Narrative Medicine.

I Lost a Patient Last Week by Carolyn Welch

Carolyn Welch worked for many years as a pediatric intensive care nurse and currently works as a family nurse practitioner.  She has an MFA from the Bennington Writing Seminars.  Her poetry collection, The Garden of Fragile Being, is forthcoming from Finishing Line Press.  Her poem "Relapse" is in the Spring 2018 Intima: A Journal of Narrative Medicine

I lost a patient last week. This is not unexpected in the world of family practice. I have lost countless patients.  During most of my career in pediatric intensive care, however, I lost them dramatically. They departed with fight and drama, chest compressions and epinephrine, and intensity. This patient left quietly, succumbing to congestive heart failure.  He came in every week or two with waterlogged ankles and lungs when he forgot to take his meds.  He missed his wife. He lingered to talk. His going was like the tide shifting in Ron Lands' poem “Listen to the Ocean.” Some other shore was calling him.

There are moments when we notice the breath is like the ocean rising and falling or like Lands' “moonlight floating on the water.” My own daughter’s battle with schizophrenia is teaching me the tending of good days, the collecting of moments.

Last summer, as I watered the garden, a hummingbird flew close, dipped in and out of the spray—his thirst and my offering meeting there on a hot uneventful day in July. Diana calls on good days between relapses. Lands' patient or father or mother labors to breathe until reminded of the light and the water.  Waves bring what they have and take what they find.  Lands' voice eases his listener from one moment to the next.

My patient’s death leaves a gap in the schedule, an unfilled prescription, a message from his son. And we go on. This smallness of death is part of its tragedy to those of us working close to it, but also when it visits our lives. The room get cleaned, the bills arrive, the dogs whimper for their supper.  Some of us write poems in an effort to translate our experience and to tend to these moments of being.

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Carolyn Welch worked for many years as a pediatric intensive care nurse and currently works as a family nurse practitioner.  She has an MFA from the Bennington Writing Seminars.  Carolyn’s poetry and fiction have appeared in Gulf Coast, Poet Lore, Sundog, Tar River Poetry, Conduit, Connecticut River Review, High Desert Journal, The Southeast Review, Zone 3, The Minnesota Review, American Journal of Nursing and other literary journals. Her poetry collection, The Garden of Fragile Being, is forthcoming from Finishing Line Press.  Her poem "Relapse" is in the Spring 2018 Intima: A Journal of Narrative Medicine

Life and Death in the ER: What's Real, What's Fiction? by Carol Scott Connor

Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. Her story "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Readers of my piece "After Midnight" often ask me, “What happened to the cop?”

I answer, “It’s fiction. There never was any cop.” But the truth is more complex than that.

There were patients very similar to this during my medical school and residency years. From those memories I can say with confidence that although the piece ends with the cop about to arrive, alive, in the Recovery room, he almost certainly would not have survived to leave the hospital. As subsequent decades passed, we became more facile in resuscitation, better attuned to the factors that predict a successful outcome. In that time, at that place, we simply did everything we could to fight for life.

As you may have guessed, the piece is firmly rooted in my own experience as a wide-eyed medical student. Originally destined for a career in the cerebral specialty of cardiology, I became a convert to surgery after a night when the team (at least temporarily) cheated death and everything seemed possible. When the swoosh of the dark wings of death could be heard, and we seemed to be able to beat that old carrion-bird back into the darkness. And the night ended with a trip across the roof to start rounds.

A far more realistic and nuanced view is presented by Anna Belc in “Getting to Know Dying.” She writes of the early recognition of imminent death in those who are in the zone of criticality. She speaks of anticipating death so as to better be able to prevent it – for example, for a patient at risk of bleeding out, start two large-bore IV’s.

She also speaks of the difficulty preparing the survivors, the family. And, implicit in all of this, is the personal toll on the healthcare team. Those who deliberately choose to work in the zone where life and death intersect are, indeed, very special people.

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Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. She writes memoir in the form of fiction, exploring the world of women in surgery. Her stories have been published in multiple literary journals ranging from “The Healing Muse” through “North Dakota Quarterly,” and nominated for a Pushcart Prize. A collection of her short stories was published as “A Few Small Moments.” She is past editor-in-chief of “The Examined Life Journal: A Literary Journal of the Carver College of Medicine” and currently serves as its fiction editor. "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Life and Death in the ER: What's Real and What's Fiction? by Carol EH Scott-Conner MD PhD

Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. Her story "After Midnight" pays homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Readers of my piece "After Midnight" often ask me, “What happened to the cop?”

I answer, “It’s fiction. There never was any cop.” But the truth is more complex than that.

There were patients very similar to this during my medical school and residency years. From those memories I can say with confidence that although the piece ends with the cop about to arrive, alive, in the Recovery room, he almost certainly would not have survived to leave the hospital. As subsequent decades passed, we became more facile in resuscitation, better attuned to the factors that predict a successful outcome. In that time, at that place, we simply did everything we could to fight for life.

As you may have guessed, the piece is firmly rooted in my own experience as a wide-eyed medical student. Originally destined for a career in the cerebral specialty of cardiology, I became a convert to surgery after a night when the team (at least temporarily) cheated death and everything seemed possible. When the swoosh of the dark wings of death could be heard, and we seemed to be able to beat that old carrion-bird back into the darkness. And the night ended with a trip across the roof to start rounds.

A far more realistic and nuanced view is presented by Anna Belc in “Getting to Know Dying.” She writes of the early recognition of imminent death in those who are in the zone of criticality. She speaks of anticipating death so as to better be able to prevent it – for example, for a patient at risk of bleeding out, start two large-bore IV’s.

She also speaks of the difficulty preparing the survivors, the family. And, implicit in all of this, is the personal toll on the healthcare team. Those who deliberately choose to work in the zone where life and death intersect are, indeed, very special people.

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Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. She writes memoir in the form of fiction, exploring the world of women in surgery. Her stories have been published in multiple literary journals ranging from “The Healing Muse” through “North Dakota Quarterly,” and nominated for a Pushcart Prize. A collection of her short stories was published as “A Few Small Moments.” She is past editor-in-chief of “The Examined Life Journal: A Literary Journal of the Carver College of Medicine” and currently serves as its fiction editor. "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

What Color is Your Stethoscope? A Reflection on How Art and Colors Affect Us as Caregivers by Alice Wang

Alice Wang is a third-year undergraduate student at Stanford University studying Materials Science & Engineering. She is interested in the importance of interpersonal narratives in both art and medicine, and seeks to better understand the healing potential of narrative medicine. Her artwork "Beyond Blue" appears in the Spring 2018 Intima.

In her Field Notes essay “The Lady in Pink” (Spring 2013 Intima), Anne-Laure Talbot writes of a formative patient encounter she had as a medical student. She meets a delightful elderly woman dressed in a bright pink sweater, who carries with her a known diagnosis of dementia.

Talbot’s preconceptions of dementia are challenged by this woman’s personable and pleasant demeanor, by her affectionate and smiling engagement. The writer ends with a moving statement on how this encounter impacted her understanding of illness as a caregiver and empathetic individual.

This reflective essay has inspired me to think more deeply about the various facets of the illness experience, from the patient’s clinical presentation to the clinician’s worldview and biases.

Color blends the boundaries between art and medicine, serving as a fundamental element of both practices. The juxtaposition of the patient’s pink sweater with Talbot’s white coat in “The Lady in Pink” creates a vivid image that captures the dynamic of the characters and the relationship between the two. My studio art piece “Beyond Blue” (Spring 2018 Intima) similarly reflects on the ways color shapes health narratives, though we may not consciously recognize them. Inspired by Joan Didion’s memoir Blue Nights and a patient I met in clinic, this drawing seeks to tell a story through the emotional, individual, and cultural meaning embodied in color and aesthetic. I attribute my sensitivity to color to my training as an artist, just one way medical humanities have helped me become a careful and connected observer of others.

"Beyond Blue" by Alice Wang. Spring 2018 Intima: A Journal of Narrative Medicine

Whether manifested in clothing and medical garb or used in the process of diagnosis, color is another avenue through which illness narratives can be conveyed and understood. By reflecting on the stories that surround us, especially those we have the privilege of shaping, we as clinicians may begin to see the humanism that lies in the details, in the colors and sentiments not conveyed through a textbook diagnosis.

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Alice Wang is a third-year undergraduate student at Stanford University studying Materials Science & Engineering. She is interested in the importance of interpersonal narratives in both art and medicine, and seeks to better understand the healing potential of narrative medicine. Alice enjoys portrait drawing and her artwork has been exhibited in student exhibitions at the Museum of Contemporary Art San Diego and the San Diego Museum of Art. She is involved in biomaterials research for regenerative medicine at Stanford and will be applying to medical school this summer. Her artwork "Beyond Blue" appears in the Spring 2018 Intima.

How a poem entitled “All the Girls Were There, and Gorgeous” helps us reflect on illness, morality and memories by Andrew Taylor-Troutman

Andrew Taylor-Troutman earned a certificate in Narrative Healthcare from the Thomas Wolfe Center for Narrative through Lenoir-Rhyne University. He is a Presbyterian pastor serving a congregation in Chapel Hill, North Carolina. His story “Cups and Such” appears in the Spring 2018 issue of Intima: A Journal of Narrative Medicine.

A year ago, a half-dozen older women gathered in a church fellowship hall. The coffee percolated as copies of “All the Girls Were There, and Gorgeous,” a poem by Carlene Kucharczyk in the Spring 2017 issue of Intima, were passed around our circle of chairs. As facilitator of this narrative healthcare workshop, I read the poem out loud. The gas logs hummed for a moment in the silent room. I was about to launch into questions specific to Kucharczyk’s remarkable poem when this participant spoke, quietly yet clearly: “Do you think it would be easier to have Alzheimer’s or ALS?”

A year later, her question came back to me and I wrote my little story, “Cups and Such,” not as an answer, but to continue the conversation.

Her question proposes a binary. In some ways, “Cups and Such” is the mirror opposite of Kucharczyk’s poem – a woman awake in her life, though / she doesn’t know it compared to a man fully aware of the betrayal by his body. But both poem and story deal with the same haunting theme: What is our relationship to our past? Memories flit and flash in and out of our consciousness like fireflies. Is hindsight really 20-20? Or, is it that we are continually revising our story to make meaning? “Revision” means to look again; etymologically, so does “respect.”

Skilled poets, like Kucharczyk, write with clarity yet focused ambiguity, thereby asking readers to look again and again for interpretations. We read and continue the conversation. A year later, I remember how the workshop participants were divided as to the moral character of the narrator: We do not like to visit her, / I hope she does not know. Was the narrator a “good granddaughter” or not? What is expected of us when a family member has a terminal disease? Could it be that the way the sick perceive us changes, say, from a bright shining face to the appearance of a moon? Is that cold and distant? Or, could the transformation be a natural reflection of a previous light?

And I still wonder, in Kucharczyk’s words, about the part that is elsewhere. Time is not linear. Perhaps there are moments, even in pain (whether physical or emotional or spiritual), when all the girls are gorgeous, when all is whole again and saved.

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Andrew Taylor-Troutman earned a certificate in Narrative Healthcare from the Thomas Wolfe Center for Narrative through Lenoir-Rhyne University. His recent essays have been published online at Mockingbird (http://www.mbird.com) and his poetry at Bearings (https://collegevilleinstitute.org/bearings). He is a Presbyterian pastor serving a congregation in Chapel Hill, North Carolina. He and his wife have three children. His story “Cups and Such” appears in the Spring 2018 issue of Intima: A Journal of Narrative Medicine.

Dinner, Revelations and Narrative Medicine: Tales told by Intima Spring 2017 by poet Wendy French

This is a blog about Intima and narrative medicine in general and all that we can read and absorb from this excellent online journal. Every issue grabs my attention for the poetry, articles and the blogs that respond to other people’s work.  

Wendy French is a poet, whose latest collection of poems is "Thinks Itself A Hawk" (Hippocrates, 2016). Her collaboration with Jane Kirwan resulted in the book "Born in the NHS" (Hippocrates, 2013). She won the Hippocrates Poetry and Medicine prize for the NHS section in 2010 and was awarded second prize in 2011. She has worked for the past twenty years in healthcare settings. Her poem "Exchange" appears in the Spring 2017 Intima.

My poem "Exchange" was written after my son came home from working in the Far East. He brought with him a girlfriend who had also been working with him for the British Council. Poom was Thai. We had never met before and they arrived in the evening. She was exhausted from the long flight. I had prepared a meal and over supper, a nurturing and nourishing time and good time to talk with new and old friends. She told me that her father had died and she was still very sad.  We had candles on the table but we lit another one for her father and placed it in an important position near the flowers that seem to symbolize new growth, new seasons. 

Then Poom started to tell us that she had had Stevens-Johnson Syndrome, a syndrome I had never heard of. But as she told us her story another narrative emerged, the emotional need to now pass on the story. This for me is what narrative medicine is all about. It’s telling our stories to a health professional who can understand what is going on for us emotionally, intellectually and physically. Poom felt, at this supper in a country she didn’t know, not long after her father’s death and this dreadful illness, that she needed to talk about it and try and rid the experience from her mind in a strange country. This was her narrative being told right now.  

I was very struck by the wisdom in Vivian Lam’s Crossroad's essay "This Game We Play Called Dying."  Even dying has a narrative for each individual although by the time we are in the clutches of death we may be too ill, too sick, to tell our story to anyone. So it is the people who care for us who have to interpret our story at this stage of our lives. Hence the need, as Vivian Lam says, to be able to know whether or not the dying person wants someone with him/her now or whether she/he’d rather take the final steps alone. Therefore it is the responsibility (and I mean responsibility) of the nearest person to the dying to have found out this part of the narrative while it is possible to do so. This may be the health professional who cares and treats the dying with compassion. Dying is the final and may be the most important part of the narrative.   

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Wendy French is a poet, whose latest collection of poems is Thinks Itself A Hawk (Hippocrates, 2016). Her collaboration with Jane Kirwan resulted in the book Born in the NHS (Hippocrates, 2013). She won the Hippocrates Poetry and Medicine prize for the NHS section in 2010 and was awarded second prize in 2011. She has worked for the past twenty years in healthcare settings. She was Poet in Residence at the UCH Macmillan Centre from April 2015-2016 and this year will be working with patients/caregivers on writing memoirs. She is one of six poets invited to Bucharest to work with MA students on translations of their novels into English. She currently is writing poems to celebrate Waterloo Bridge.