On Compassionate Storytelling in Graphic Memoir: Pat Arnow’s "A Death in Chicago, 1972: Elizabeth Kubler-Ross and My Family" By Jonathan Garfinkel

Jonathan Garfinkel is a writer whose work has been translated into twelve languages. He is the author of the book of poems Glass Psalms (Turnstone Press, 2005) and the chapbook Bociany (Storks) (KFB, 2017). Garfinkel is currently doing a PhD in Cultural Studies in the field of Medical Humanities at University of Alberta. Find more of his work at jonathan-garfinkel.com. His non-fiction piece “Diabetes Diary” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

Pat Arnow’s touching account of the death of her father illustrates the power of graphic memoir, showcasing both her talent as illustrator and writer. There is something simple and intimate in the story she tells, as Arnow lets us into the private moment between father and daughter, father and family, and we witness his journey toward death from cancer. The effect is incredibly moving. In part, the form of the graphic memoir allows Arnow to achieve this. In distilling pivotal moments in her father’s end of life journey, her illustrations evoke vulnerability, joy, beauty and love between family members.

Many moments leap out. Early on, Arnow portrays her father’s love for his wife as he sits with her making clay pots. Toward the end, drawings of her father’s eyes – first from afar then moving in closer with each panel until we are left with only a black mass of pupil – leads the reader into the unknown that is death. These moments – singular, familiar - allows the reader to feel the vulnerability the terminally ill and their families experience – it ripples through us. How do we help those we know who are dying, those we love most? Who hasn’t grappled with these impossible questions, mourning the passage of a father’s life?“

“A Death in Chicago” is also a poignant historical reflection on shifting cultural attitudes towards terminal illness. In referencing the landmark work by Elizabeth Kubler-Ross, On Death and Dying, as well as bringing the actual author into the text (who, in 1972, comes to see the family and helps to lobby on behalf of Arnow’s father so he gets what he needs – to go home), we witness firsthand the importance of a compassionate medicine, as well as the vast disjunct between first and third person narratives: the subjective experience of illness as opposed to the objective symptoms of disease. There is still a long way to go in terms of humanizing medical professional attitudes today, but voices like Arnow’s are incredibly important for leading the way toward a broader empathy.

As I continue to write A Diabetes Diary, I know Arnow’s beautiful graphic memoir will leak into my lines. In part I am envious of her ability to tell a story through such well-wrought images. Ultimately, it is her compassionate storytelling that I will take away. Thank you, Pat Arnow, for this moving work.

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Jonathan Garfinkel is a writer whose work has been translated into twelve languages. He is the author of the book of poems Glass Psalms (Turnstone Press, 2005) and the chapbook Bociany (Storks) (KFB, 2017). He has written numerous plays including The Trials of John Demjanjuk: A Holocaust Cabaret (2004), the Governor-General shortlisted House of Many Tongues (2009) and Cockroach (2015); they have been produced throughout Canada, Germany, Russia and Ukraine. His memoir Ambivalence: Crossing the Israel/Palestine Divide (2008) was published in five countries to critical acclaim. Jonathan is also an award-winning non-fiction writer and has been anthologized in Cabin Fever: The Best New Canadian Non-Fiction. His first novel, The Altruist, is forthcoming from House of Anansi (2020). Named by the Toronto Star as “one to watch,” Garfinkel is currently doing a PhD in Cultural Studies in the field of Medical Humanities at University of Alberta. Find more of his work at jonathan-garfinkel.com. His non-fiction piece “Diabetes Diary” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

©2019 Intima: A Journal of Narrative Medicine

The Caregiver’s Space: Thoughts on John Jacobson’s Essay “Now and Then” by Simona Carini

Simona Carini, who was born in Perugia, Italy, is a graduate of the Catholic University of the Sacred Heart in Milan, Italy and Mills College. Carini writes nonfiction and poetry and has been published in various print and online venues. She lives in Northern California with her husband and works as an academic researcher in Medical Information Science. Her poem Diagnosis appears in Poetry in the Spring 2019 Intima: A Journal of Narrative Medicine. Find more of her work at simonacarini.com.

Events like a disabling illness or accident, or a terminal diagnosis bisect life into the time before and the time after for the person directly affected and her/his family. We adjust to the new situation, but there remains a memory of the carefree past.

Though I have not been a caregiver in such an intense situation as that John Jacobson describes in his essay “Now and Then” ( Intima, Fall 2018) understand his struggle with accepting the present.

Jacobson touches upon the constant requirements of his wife’s health situation, the energy (both physical and emotional) involved. Caregivers don’t cease to have feelings, thoughts, or hopes just because caring for another person has become central to their life.

When you are thrust into the role of caregiver, there begins a struggle to maintain a balance and to keep a private space, where you can be with yourself and do something not related to providing care. Both Jacobson and I talk about a natural setting acting as that space:

Darkness seems to seep out of the woods as if exhaled by tree roots. Gray poplars at the edge of dark pines look nearly white. Beavers have taken some down leaving pointed stumps. Three ghostly white poplars felled recently lie across the path. I climb over them and walk on toward the pond.

Nature tells us of impermanence, encourages us to believe our grief will evolve too.

I want our good times back. It can’t be changed though. It’s a want I have to let go of. I wonder if then I can begin to find acceptance. I try to imagine what acceptance might feel like.

Where do we begin to find acceptance? Rowing in silence in the early morning hours played an important role in my case:

I balance on the water seeking grace

to breathe and draw a trace that leaves no trace.

Jacobson writes: I think I will know acceptance when I count my successes even when they are much smaller than I hoped for… I imagine feeling anticipation of what comes next instead of dread.

He can imagine a future.

When I rise again, an owl flutters out from branches and flies on silent wings over white ice on the pond.

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Simona Carini, who was born in Perugia, Italy, is a graduate of the Catholic University of the Sacred Heart in Milan, Italy and Mills College. Carini writes nonfiction and poetry and has been published in various print and online venues. She lives in Northern California with her husband and works as an academic researcher in Medical Information Science. Her poem Diagnosis appears in Poetry in the Spring 2019 Intima: A Journal of Narrative Medicine. Find more of her work at simonacarini.com.

©2019 Intima: A Journal of Narrative Medicine

Dads, Daughters, Death by Pat Arnow

Pat Arnow is a photographer, writer, and more lately, a cartoonist in New York. She often writes and draws stories about death.Her artwork “A Death in Chicago, 1972: Elisabeth Kübler-Ross and My Family” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

A dad has cancer. He decides not to undergo a risky, possibly ineffective operation that might save him. His family supports his decision. He goes home to die.

Karen Dukess writes about this in “Day One of Dying” (Fall 2016) as if those choices were an everyday thing.

Well they are—now.

In this lovely memoir of a beloved father, it is striking to me how things have changed from when my dad faced terminal cancer in the early 1970s. Then the rule was maximum intervention no matter what the prognosis. No one would quibble with doctors. People died in hospitals.

That’s how the story begins in my comic, “A Death in Chicago, 1972: Elisabeth Kübler-Ross and My Family” (Spring 2019). As my father lay dying in a hospital bed, he received a remarkable visit from Kübler-Ross, who had recently written On Death and Dying. She allowed my dad to say out loud how he wanted to stop painful treatments and go home to die.

My father’s homecoming came on the cusp of change for the dying and for those close to them. We started talking about death. The hospice movement grew. There is help for what are still the hard and sad days of dying.

Yet so much is the same including the moments of grace. I recognized this lesson, a gift from our dads as Dukess describes it:

“Day 6 of Dying—I am becoming a better listener. Really, what can you say?”

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Pat Arnow is a photographer, writer, and more lately, a cartoonist in New York. She often writes and draws stories about death.With “A Death in Chicago, 1972,” she tells the story of her father’s dying, which involved Elisabeth Kübler-Ross, because it’s a personal story from a time of momentous change in the way we think about death.  Her artwork “A Death in Chicago, 1972: Elisabeth Kübler-Ross and My Family” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

© 2019 Intima: A Journal of Narrative Medicine

How A Father’s Legacy Prepares a Medical Student for the Minefield by Jennifer Abcug

Jennifer Abcug is a psychotherapist in New York City where she maintains a private practice focused on women’s life transitions. Formerly, she worked at Memorial Sloan-Kettering Cancer Center providing counseling to patients and families. While there, she experienced the privilege of being present with others facing the most personal of crises. Along with this came a daily dose of humility and a grounding in shared humanity. Writing is how Abcug makes meaning of bearing witness. Her non-fiction essay “Daddy” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

I remember the first time I witnessed a physician lose himself. We were on morning rounds for the Gastrointestinal Oncology Service, the floor known for its too-close-to-the-flame dance with death. The maintenance of hope was a daily trek through Himalayan heights.

On this day, a thirty-something father of two was being bested by pancreatic cancer. He was suffering, in pain and dying too young.

I can’t remember exactly what it was that set our attending oncologist off that morning (as if a young father dying of cancer wasn’t itself enough—it was hard to maintain perspective up on that floor). But someone’s question forced him to confront the limits of what he could do for our patient. A switch flipped and this generally affable oncologist shouted at us all.

“I don’t fucking know!”

We all stepped back a few inches. Clearly, he needed space. His daily dose of the near-death threshold had been breached. And I thought of him immediately while reading Jake Minor’s piece “The Crash,” (Field Notes, Spring 2017).

Jake’s narrative initially resonated for me because it aligned so closely with my own experience confronting my father’s kidney failure. The blurred boundary of discerning parent from child as our full range of primal emotions combust was particularly resonant.

“I thought we could fix it.” Yes. That day, our attending had been thinking, hoping and wishing we could fix it, too.

“I thought I could fix it.” Yes. Our attending had tread these terminal waters holding out hope that HE could fix it. He could save this young man. He could keep a family intact so that two children could grow up with their father, as Jake’s thirteen year-old sister would not.

“I thought the doctors could fix it…” Yes. Our attending had been saddled with that Herculean feat, too. Doctors fix things. Doctors must especially repair things that just don’t mesh with what our linear sense of living looks like. We need doctors to make life right again.

“Not everything could be fixed.” In this moment on rounds, as in Jake’s first moment of realization that his father would not be fixed, our attending angrily conceded defeat.

How do we prepare medical providers for the minefield that awaits them? As Jake merges his painfully personal life-lesson with his medical training, we catch a glimpse of how his father’s legacy—a bittersweet parting gift—will shape him as a future compassionate physician.

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Jennifer Abcug is a psychotherapist in New York City where she maintains a private practice focused on women’s life transitions. Formerly, she worked at Memorial Sloan-Kettering Cancer Center providing counseling to patients and families. While there, she experienced the privilege of being present with others facing the most personal of crises. Along with this came a daily dose of humility and a grounding in shared humanity. Writing is how Abcug makes meaning of bearing witness. Her non-fiction essay “Daddy” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

© 2019 Intima: A Journal of Narrative Medicine

Reflecting on "The Loneliness of Dying" by Veronica Tomasic by Henry Sussman and Jeffrey Newman

Henry Sussman received his PhD in Comparative Literature from Johns Hopkins University in 1975 and taught Comparative and German Literatures at universities including Johns Hopkins, SUNY Buffalo, the Hebrew University of Jerusalem, Rutgers, and Yale. At Yale, he evolved a course in German fairy tales out of his interests in critical theory, philosophy, psychoanalysis and cybernetics. “Wisdom in the End: Folktales and Narrative Technique in End-of-Life Palliation” by Sussman and co-author Jeffrey Newman appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

In her fine essay, In the Far Canada of a Hospital Room: The Loneliness of Dying, Tomasic describes her personal experience as a conservator with end of life clients, and she refers to a variety of literature addressing the anguish and its relief from the point of view of patients themselves, clinicians, and caregivers.

In the Danish film, “At Night,” three young women on an oncology service provide each other the support and comfort ignored by the clinicians. In “Wit,” the inpatient nurse supports the protagonist through her aggressive chemotherapy. And at the end, a visiting literature professor comforts her by reading The Runaway Bunny.

Tomasic’s discussion of Tolstoy’s masterpiece The Death of Ivan Ilyich emphasizes the saintly caring of the protagonist by his loyal servant, comparing it to the psychoanalytic concept of the holding environment. And she reminds us of Holden Caulfield’s continuing ruminations on the death of his younger brother Allie, contributing to his isolation and aimlessness in the Catcher in the Rye.

Jeff Newman is a Professor in the Institute for Health & Aging at UCSF. Trained in Preventive and Internal Medicine, his previous positions were in the US Public Health Service, the California Medicare Quality Improvement Organization, and Sutter Health. “Wisdom in the End: Folktales and Narrative Technique in End-of-Life Palliation” by Newman and co-author Henry Sussman appears in the Spring 2019 Intima: A Journal of Narrative Medicine..

We believe that folk tales – the focus of our paper – can address the loneliness of dying for some patients, clinicians, and caregivers. With child-like grace, they can evoke concepts of personal accounting of successes as well as failures, enchantment and transformation, hope and wisdom, and feelings of self-compassion and acceptance in our own life-stories.

While our patients exit on their own, we can keep them company in the waiting room.

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Henry Sussman received his PhD in Comparative Literature from Johns Hopkins University in 1975 and taught Comparative and German Literatures at universities including Johns Hopkins, SUNY Buffalo, the Hebrew University of Jerusalem, Rutgers, and Yale. At Yale, he evolved a course in German fairy tales out of his interests in critical theory, philosophy, psychoanalysis and cybernetics. “Wisdom in the End: Folktales and Narrative Technique in End-of-Life Palliation” by Sussman and co-author Jeffrey Newman appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

Jeff Newman is a Professor in the Institute for Health & Aging at UCSF. Trained in Preventive and Internal Medicine, his previous positions were in the US Public Health Service, the California Medicare Quality Improvement Organization, and Sutter Health. “Wisdom in the End: Folktales and Narrative Technique in End-of-Life Palliation” by Newman and co-author Henry Sussman appears in the Spring 2019 Intima: A Journal of Narrative Medicine..

©2019 Intima: A Journal of Narrative Medicine

What Was, What Is and What Will Be: A reflection on the poem “Decision” by Ron Lands by: Tharshika Thangarasa

Tharshika Thangarasa is a daughter, sister, friend and fourth year medical student at the University of Ottawa. Her artwork “Stroked” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

It is incredible how abruptly and drastically things can change. Nowhere is this more evident than in medicine.

In his beautiful piece “Decisions”, Ron Lands takes the reader through the delicate moments preceding the disclosure of a medical diagnosis to a patient. Holding the weight of the individual’s new reality, hesitant to pass it on… unsure of whether or not the person has the supports necessary to bear it.

The concept of a new reality, seemingly defined by disease is also depicted in my studio artwork entitled “Stroked”. In this image, the intricate cerebral vasculature is depicted as the branches of a tree. They serve as the highway through which nutrients are able to reach the leaf buds, allowing them to blossom. They allow blood to nourish the neurons of our higher level cortical areas, those that form our identities. A stroke, represented by the burning of these branches, is one example of a medical phenomenon that can unexpectedly, and eternally, alter a person’s life.

Yet, the task of disclosing this to the patient is in the hands of the provider. A person, who too can struggle with it’s magnitude. Providers, patients, families… no one is immune to the sometimes devastating consequences of disease.

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Tharshika Thangarasa is a daughter, sister, friend and fourth year medical student at the University of Ottawa. She cultivates her own wellness at the intersection of art and medicine, and hopes to continue to embrace the humanities on her journey to becoming a psychiatrist. Her artwork “Stroked” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

©2019 Intima: A Journal of Narrative Medicine

How to Really See a Patient by Nikhil Barot

Nikhil Barot is an Associate Professor of Medicine at David Geffen School of Medicine at UCLA and practices Pulmonary & Critical Medicine and Palliative Care Medicine at Olive View-UCLA Medical Center in Los Angeles. His essay “Numb” appears in the current issue of Intima,

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Nikhil Barot is an Associate Professor of Medicine at David Geffen School of Medicine at UCLA and practices Pulmonary & Critical Medicine and Palliative Care Medicine at Olive View-UCLA Medical Center in Los Angeles. He has written essays and poetry for Nautilus, The Smart Set, Open Letters Monthly, and Medical Humanities. His non-fiction essay “Numb” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.

2019 Intima: A Journal of Narrative Medicine