‘New Normal. Precious Normal.’ A Reflection about Loss and Love in the Wake of COVID-19 by poet Sophia Wilson

In her poem “Oxygen” (Fall 2018 Intima), Hollis Kurman captures how poignantly the proximity of illness or death can alter the way we view others and the world:

‘…he lies
wordless, feet stilled and arms bound.
His glasses have been removed,
His pockets emptied. A life fills

those pockets, the tokens and coins,
Addresses and appointments. Cash, still.
Hints of barter expired.’

Currently, here in New Zealand, the combination of a small population (total five million), and nationwide lockdown has flattened the initial COVID-19 curve. There have been no new cases for most days over the past two weeks. The country has re-opened schools and businesses. Domestic tourism is being aggressively encouraged. There’s been a rush on fast food. Traffic is back on the roads in force.

Simultaneously, there is a risk of complacency and resurgence of infection.

It’s almost hard to recall, how we felt at the beginning of lockdown. As circumstances brought about by the pandemic change rapidly, so too, do our emotions and responses.

While the focus in New Zealand is on a return to ‘normal,’ there is also a sense of the importance of moving forward differently, in particularly with regards to the environment and each another. Today, as it happens, is not only the release date of the Spring 2020 Intima, in which my poem “Don’t Leave” appears, but the day my husband (an essential worker and subject of the poem), moves back into our home—a cause for celebration. It’s also the day I receive news that a close relative is intubated in intensive care in a Sydney hospital, with suspected COVID-19 infection. He’s forty-five years old with no comorbidity. Our loved one was well when we spoke to him last week. It’s an acute reminder the nightmare is not over.

What wouldn’t we do to keep those we love safe and close? As Hollis Kurman so movingly writes:

‘Wait, we’ve not yet

spoken today; wait, take my oxygen;
wait, the policeman called you “sir” in the
middle of the night, carrying you back to bed.
Wait.’

Both our poems express an acute appreciation for the preciousness of other people, those so familiar to us we have come to take them for granted. In my case, as for so many of us right now,  this heightened appreciation has been catalysed forcefully by COVID-19.  I hope that, like the quiet, paused moments of lockdown, it does not slip away amid the hustle and bustle of a return to ‘normality.’

Thank you, Hollis. Your poem will stay with me. And thank you, Intima, for all the brave and inspiring work you support and share.

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Sophia Wilson is a New Zealand-based writer and mother of three with a background in arts, medicine and psychiatry. Her work has appeared in StylusLit, Not Very Quiet, Ars Medica, Hektoen International, Intima, Distāntia off topic poetics, NZ Poetry Shelf, Poems in the Waiting Room, Corpus, The Otago Daily Times and elsewhere. In 2019 the manuscript for her first children’s novel, “The Guardian of Whale Mountain” was selected in the top ten for the Green Stories Competition (UK). She was shortlisted for the Takahē Monica Taylor Prize and a finalist in the Robert Burns Poetry Competition. She was winner of the 2020 International Writers Workshop Flash Fiction Competition and is the recipient of a 2020 Creative New Zealand grant.

The Caregiver’s Invisibility Cloak: A Reflection on Albert Howard Carter’s story “The Cookie Intervention” by Rossana Di Renzo

Rossana Di Renzo, author of the academic paper, "Embraced By Words" (Fall 2019 Intima) with Marilena Vimercati, lives and works in Bologna, Italy. Her interest has always been narrative and applied narrative medicine which she uses in different fields: in training courses for health professionals, in the degree course in Nursing at the University of Bologna and in research.

“Oh, there’s the PT’s car pulling up. Is it 11:00 already? Must be; Laura’s always on time. Actually I would love to go upstairs and have an hour of peace, but I do like her. She’s always so upbeat and just full of energy. Besides, she always sees progress in my husband Tom, seeing him just once a week. I see him 15 hours every day, and his recovery from the stroke is so slow that sometimes I see no progress at all. None. I’m so worn down, I just feel numb.”

This narrative from the story “The Cookie Intervention” by Albert Howard Carter brings to our minds the many women we interviewed for our paper “Embraced by Words” (Fall 2019 Intima). They told us how they looked after and cared for their husbands, sisters, brothers, children, and parents.

When dealing with the theme of disability, as in Carter’s story, people need to reassemble stories of care that mainly take place within the family, because it is often that both the place of private life and the place of care overlap.

Usually there is one person who devotes oneself to a sick person and that person is the caregiver.

Our research shows that in 50 percent of cases care work is carried out by women, who continue to define themselves not as caregivers but as wives, mothers, and partners. They consider their duty of care natural; their lives are designed only in function of the sick person.

The women we met told of their loneliness and fragility and the thousands of obstacles they have to face in everyday life without knowing how long that routine will last. 

A wife said “I’m feeling so alone. I have too much to think about. I do everything. I have a huge weight on my shoulders, everything falls on me.”

When the wishes of the caregivers cannot be fulfilled, as we read in Carter’s story (“I want my husband back”), what will help them to accept disability and their work of care and to ask for help?

Positive and powerful energies are needed in addition to personal resources. It is important to be listened to and give voice to the pain in body and in soul. The support throughout the care process, the family and social networks, the community, the closeness and authentic solidarity of others, ensure that there is a process of rewriting, of evolutionary readjustment that allows them to tolerate, manage suffering and allow themselves to be open to hope.

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Rossana Di Renzo, author of the academic paper, "Embraced By Words" (Fall 2019 Intima) with Marilena Vimercati, lives and works in Bologna, Italy.  Her interest has always been narrative and applied narrative medicine which she uses in different fields: in training courses for health professionals, in the degree course in Nursing at the University of Bologna and in research.

Embracing the Emotional and the Empathic in Healthcare by Logan Shannon

Logan M. Shannon has a BFA in Studio Art with a minor in English from the University of Iowa and an MFA in Jewelry + Metalsmithing from Rhode Island School of Design. Her essay, “The Gold Standard,” appears in the Fall 2019 Intima: A Journal of Narrative Medicine.

I’ve often wondered if having a medical degree would have better prepared me for my husband’s illness and eventual liver transplant. Would I have felt more qualified to care for him and advocate for him if I had studied hepatology instead of metalsmithing? Would my preparation for my own living donor surgery have been different if I had more than a rudimentary knowledge of what the liver does and how patients who undergo major abdominal surgery respond to traditional pain medications?

Orly Farber writes about her experience as a medical student and the daughter of a patient in “Watch and Wait” from the Spring 2019 issue of Intima. In it she describes a bifurcation, as her body travels to medical school, and her mind focuses on a different hospital, the tests her father will receive there, and the treatments he will undergo. The study of his disease becomes an extracurricular for her, long nights of studying coursework are bracketed by studying her father’s illness, but her fear and sadness about his illness and suffering don’t abate. I see in her experience similarities to my own experience, and my essay (“The Gold Standard,” Fall 2019 Intima) despite having never studied medicine: a desire to understand what a loved one is going through, to be able to answer their questions, to be able to take away at least some of the fear and pain.

I longed for a practical and high level understanding of medical terminology, tests, and what the results of those tests may indicate before and after my husband’s transplant and my own liver resection surgery. I think it would have helped me feel not quite as lost and confused as I waited to see what would happen. But there is also a universal helplessness that comes with watching someone you love be subjected to those tests and be on the receiving end of a litany of jargony language that more often manages to obfuscate rather than enlighten or soothe. Even if you are fluent in medical terminology, even if you’ve ordered the same test for a patient before, watching someone you love be at its mercy will always be a challenge.

The complexity of the health care machine and the diseases we humans endure can feel debilitating, and while specific knowledge can do much to ease the burden, we are all still doing good work when we embrace our emotional and empathic selves while caring for others.

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Logan M. Shannon has a BFA in Studio Art with a minor in English from the University of Iowa and an MFA in Jewelry + Metalsmithing from Rhode Island School of Design. She is currently writing a memoir about her experience as a living liver donor and is generally trying to convince everyone she meets that the liver is, by far, the best organ. Logan lives in New Hampshire with her husband, and their prolific sourdough starter, Seymour. Her essay, “The Gold Standard,” appears in the Fall 2019 Intima.

“Daily life is a massacre”: A reflection on “Now and Then,” John Jacobson’s essay about caregiving, by Marilena Vimercati

Marilena Vimercati, author of the research paper "Embraced by Words" (Fall 2019 Intima) with Rossana Di Renzo, lives and works in Milan where she collaborates with ISMU—Initiatives and Studies on Multiethnicity, an independent scientific body—to carry out projects focusing on interaction between migration processes and training paths for professionals.

“Nobody knows our daily life. Daily life is a massacre.” That is what we were told by one of the caregivers we interviewed and the detailed description of that burden is exactly what I found in “Now and Then,” John Jacobson’s Field Notes essay (Fall 2018 Intima). Jacobson, a caregiver who assists his wife Claudia, lives days that are marked exclusively by the care for her: There is no room for his personal life.

He, who had a career for years, now uses vacation days to accompany his wife to the doctor; he, who was always on time at work, now often calls to say he will be late. He does not want to know anything about his friends’ holidays, or their career advancements, or the changes they have made to their homes.

“Meaningful” is what he said when he met a friend recently, who had returned from a holiday in Europe: “While you were away, I emptied bedpans!” As much as he would like Claudia’s help in the kitchen, now he must do everything by himself. (“I both had Claudia and didn’t have her.”)

The weight of now is really palpable in his narrative: Jacobson cannot imagine his future because on the one hand he feels crushed by the duties of everyday life—the same feeling that another caregiver interviewed by us calls ‘roller coaster’— that is a daily life full of tiring climbs, free falls, suspensions, and turns that could lead to derailing if not managed well. On the other hand there is the weight of the loss of what Claudia was and meant to him: “Now I spend too much time counting losses. I remember coming here with Claudia, holding hands as we walked along this path. I feel guilty to say it, but I wished I had someone holding my hand now.”

For Jacobson, as well as for the many caregivers we met, the emotional burden to be a caregiver is so heavy that the future is annihilated by the present. “I don’t want to think about tomorrow. I’m scared of that. My mantra is here and now.”

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Marilena Vimercati, author of "Embraced by Words" (Fall 2019 Intima) with Rossana Di Renzo, lives and works in Milan where collaborates with ISMU – Initiatives and Studies on Multiethnicity—an independent scientific body—to carry out projects focusing on interaction between migration processes and training paths for professionals.

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