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.

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?”


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

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.

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..

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.


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.

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.


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

The Art of Sparing: When the Patient May Not Want to "Hear it Straight" by Xanthia Tucker

In her poem “Overwhelmed” (Spring 2013 Intima), Kendra Peterson shares a terminal diagnosis with her patient. “I told the harsh and ugly truth/ of glioblastoma multiforme,” she writes, “my practiced words unresectable and infiltrating.” In honoring his wish “just to hear it straight,” her words both describe and become his diagnosis. Once spoken, they are “unresectable and infiltrating” his understanding of the rest of his life.

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From T. S. Eliot to Alzheimer’s: Similar Themes Within Separate Illnesses by Laura-Anne White

The final stanza of T.S. Eliot’s “Preludes” has been a favorite of mine since my college English Literature class. My professor had a passion for literature that bordered on fanatical, and all but commanded us to over-analyze “Preludes.” Haunting, perplexing, and illustrative; the words build into a fog of emotion that I have accessed at various intervals since. It feels cataclysmic, desert-like; as if you are observing the experience of another from the sidelines, which consist of nothing but dirt.

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Honoring the Messengers of Grief: Thinking deeply about what haunts us by poet and nurse practitioner Katherine Seluja, ARNP

I’m sorry to admit that during my own healthcare training, I was taught to carefully guard my feelings, to remain composed and “professional.” The thought of hugging a patient was considered too personal, too involved. Now, decades into my career, I have most definitely put that advice aside.

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Thinking about Love, Death and Suicide by Andrea Rosenhaft

When I attempted suicide last year, in March of 2014, I didn’t write a suicide note even though I am a writer. Instead, after I took the overdose, I stumbled back to my bedroom, collapsed into a tangle of blankets and sheets and sobbed as I murmured goodbyes to my cat, Zoe. I closed my eyes and stroked her soft fur with one hand as I waited patiently to die.

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Poetry and String Theory: How Each Brings the Macro and Micro Together to Heal by Ingrid Andersson

Ingrid Andersson is a full-time midwife and poet in Madison, WI. She is completing her first collection of poetry, entitled  Down the Female Ages . Her poem "At The Green Burial Informational Luncheon" appeared in the Spring 2018  Intima: A Journal of Narrative Medicine.

Ingrid Andersson is a full-time midwife and poet in Madison, WI. She is completing her first collection of poetry, entitled Down the Female Ages. Her poem "At The Green Burial Informational Luncheon" appeared in the Spring 2018 Intima: A Journal of Narrative Medicine.

The Irish poet Eamon Grennan said, “I think poets are string theorists in some ways. They are trying to bring the macro and the micro constantly into a single focus.”

Few experiences focus human life and practice more, than advanced illness or the impending death of a family member. Susan Sample's poem "Indigo" (Intima, Spring 2014) succeeds in capturing the weight and span of such an experience. 

It begins in water, on a raft, with a rowed backstroke, the strong pull in the poet's chest alone beneath pale clouds and looming cliffs, cut through with dark swaths / of coal. Then, it moves to the marbled linoleum undercurrent of a hospital floor, worn through / on the threshold of patient rooms, and a dark lung mass on the X-ray of the poet's friend, the iced absence of breast another swath. Onward, in the less silent chemo suite, we're surrounded by everyday tragedies of pic lines, Hickmans and ports, and the poet's father's slow drip, as it clicks like an aperture set for a long exposure: / one sleeve of his favorite fleece rolled up. The cobalt blue of his sleeve colors the poem, as does the weighted blue of the bowl / he ate cereal from as a boy that I found on the shelf / of his apartment this morning.

Amidst the poem's heaviness, a thread runs through it like a hope, pulling and holding together body and earth, deep grief and sunlight, the particular and the universal. It runs dark and inexorable, like water, like veins through rock, like an intravenous line into a loved one. But it also runs like the sky blue yarn joining a hundred tiny squares in a quilt that a nurse pulls for the poet's father from a woven basket.

Like Susan Sample, I too write poems from life looking into the uncharted fathoms of aging parents. How do we, who strive enough every day to help strangers through pain, disintegration and dying, attend to our own ill and aging without drowning, without growing dangerously benumbed or isolated?

Poetry answers this question in its revelation of patterns, of countless connecting threads, in its refusal to disregard the details of every day and its insistence on homing them in whole people, families, culture and nature. Poetry is a healing practice, because it is a homing practice. My poem "At the Green Burial Informational Luncheon" (Intima, Spring 2018) aims to bring home the death of my mother.


Ingrid Andersson is a full-time midwife and poet in Madison, WI. She is completing her first collection of poetry, entitled, Down the Female Ages. Her writing has appeared in The Progressive magazine, About Place journal, Midwest Review and Wisconsin Poets' Calendar. Her poem "At the Green Burial Informational Luncheon" appeared in the Spring 2018 Intima: A Journal of Narrative Medicine.

Be Patient, Listen to your Patient: A Reflection on the Difficulties of Describing a Disease by Suzanne Edison

Suzanne Edison MA, MFA, writes most often about the intersection of illness, healing, medicine and art. She has a child living with Juvenile Myositis. Her chapbook, The Moth Eaten World, was published by Finishing Line Press. Her poem " The Body Lives Its Undoing " appears in the Spring 2018 Intima.

Suzanne Edison MA, MFA, writes most often about the intersection of illness, healing, medicine and art. She has a child living with Juvenile Myositis. Her chapbook, The Moth Eaten World, was published by Finishing Line Press. Her poem "The Body Lives Its Undoing" appears in the Spring 2018 Intima.

In Rachel Betesh’s poem “Admission Assessment” that appeared in the Fall 2014 Intima, the doctor observes a patient, finding the words to describe both his condition and her understanding of his experiences. She listens well, using precise language. Her first observation is visual, she sees his posture, but almost immediately that awareness is paired with hearing his breathing. She says:

 so measured these breaths break: shallow

            like rainwater with nowhere to settle:

            he parcels air; he can’t give it away.

 

Breath as a parcel, a package that can’t be given away. Breath is precious and difficult simultaneously. As a reader I am pulled into a field of empathy; the doctor trying to understand her experience of the man. She listens acutely to his “ragged song of breathing.” and “the natural sweetness of the body / reduced to laboring: an immeasurable effort,…”

The doctor listens to what is being said as well as what is not being said. She hears his breathing and his words. He “cradles” his hand, the size of a grapefruit, and says, “now it’s everyplace, / and the air seeps and sings out, out without measure.”

She thinks his words are the most salient reason for hospitalization and should be in her assessment: “now it’s everyplace.”

The doctor is aware that not everything can be seen, that this hand is the most visible aspect of his cancer; but she knows it is in his kidneys as well.

I am reminded of William Osler’s words of wisdom to his medical students at Johns Hopkins, “Listen to your patient, he is telling you the diagnosis.”

What can’t be seen is often true in autoimmune diseases as well. Listening to a patient describe the experience of his or her body might help a doctor find a diagnosis, but not always.  My poem, “The Body Lives Its Undoing” (Spring 2018), speaks to this experience. Initially I use the words koyaanisqatsi and uggianaqtu from Native people’s languages that speak directly to a “life out of balance,” to the body “behaving strangely.” Then, I try to enact the feelings of the patient through the sounds of words: cawing, cacophony, clattering; hard ‘c’ sounds that cut, which lead to the image of chaos.

How to let others know the internal feeling of an autoimmune disease.  Not only the sounds of feelings, but in images such as “cascading through flames / joints and muscles dragging like a loose muffler on asphalt” that try to portray the feelings of exhaustion and inflammation that come with most autoimmune diseases.

The patient in my poem wants to find balance, knows she is “listing” in a “turbulent sea” with disease, but wants to navigate it with “…my hand      on the tiller.”

Listening with eyes, ears and an open heart and mind is what most patients want and need, even if there is no definitive diagnosis, treatment or cure. Hearing their words and giving attention creates empathy, which goes a long way towards healing and helps the patient deal with the ups and downs of a disease.


Suzanne Edison MA, MFA, writes most often about the intersection of illness, healing, medicine and art. She has a child living with Juvenile Myositis. Her chapbook, The Moth Eaten World, was published by Finishing Line Press. She has been awarded grants from Artist Trust; Seattle City Artists, and 4Culture of King County, Seattle. Poems are forthcoming in About Place Journal; Other poetry can be found in: JAMA; SWWIM; What Rough Beast; Bombay Gin; The Naugatuck River Review; The Ekphrastic Review; and in several anthologies including The Healing Art of Writing, Volume One. She is a board member of the Cure JM Foundation and teaches writing workshops at Seattle Children’s Hospital and Richard Hugo House in Seattle. www.seedison.com. Her poem "The Body Lives Its Undoing" appears in the Spring 2018 Intima.

 

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

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.


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.

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.


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.