‘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.

Suffering’s Generous End: From “Veterinary Lessons” to William Cass’s story “Gentle Breezes,” a reflection by poet Jane Desmond

Jane Desmond is a poet and scholar who writes about the intersections between veterinary medicine and human medicine, as well as our relations with non-human animals. Her poem “Veterinary Lessons” appears in the Fall 2019 Intima.

William Cass’s short story, “Gentle Breezes” (Fall 2019 Intima) captured so much complexity in so few words. Casting us into the end stages of the long-term caring done by divorced parents for their severely and chronically ill son, we look back to imagine their twenty years of struggle and their increasing heartbreak as debility encroaches more and more on his quality of life.

Finally, as their son appears to lose nearly all of his abilities to interact with his environment, they meet on a park bench and agree to change their custodial Advanced Care Directive for him to “Do not Resuscitate.” As they sign the papers, the poignant counterpoint to their moment of surrender is a young couple with a newborn strolling by in the park, glowing with new-parent joy and “full of anxious delight and hope” as Cass puts it—for a life yet to unfold.

In my poem in the same Fall 2019 issue, “Veterinary Lessons,” I consider the physical intimacies of palliative care for my rabbit, of providing daily fluid therapy, and the wish that the peaceful end of suffering I know her veterinarian can deliver “when the time comes” would also, someday, be available to me if I too became, like the son in Cass’s story, just a sliver of myself.

Of course, a desire for the availability of assisted suicide in the face of incurable, painful illness, is different than the burden of ending treatment for another—not our self—and different still across species. We have the option to choose euthanasia for a pet, and when we make that choice we do so out of love for our animals, although that doesn’t lessen our grief. The veterinarians know what a struggle this decision is and counsel us to consider “quality of life” in making this choice. They even provide scales for us to use to assess this life, to note activities and pleasures our sick pet still enjoys. How much “quality” is still “enough”? And enough for whom? Many veterinarians fear the client who will “never let go,” subjecting their terminally ill pet to every imaginable treatment no matter how unlikely a cure.

Many physicians too, I imagine, struggle with this issue because for humans we don’t have the transferable concept of actively choosing “a good death” that is available to veterinarians. The closest we come is the “Do Not Resuscitate” order to allow natural processes to take their course without further intervention. The ethical and political quandries of negotiating end-of-life decisions with and for humans are daunting—legally, ethically, and culturally complex. But as we become more and more able to extend human life through dramatic medical interventions, how can we also grapple with the “quality of life” issue in a rigorously ethical way that begins to approach the question of “suffering’s generous end,” as I put it in my poem? Are there “veterinary lessons” worth studying?

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Jane Desmond is a poet and scholar who writes about the intersections between veterinary medicine and human medicine, as well as our relations with non-human animals. A Professor of Anthropology at the University of Illinois at Urbana-Champaign, she also holds an affiliate faculty appointment at the College of Veterinary Medicine, and is the author of several academic books, including “Displaying Death and Animating Life “ (U. of Chicago Press, 2016). Her poetry has appeared in Persimmon Tree in the U.S. and in Words for the Wild in the U.K.

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© 2020 Intima: A Journal of Narrative Medicine

“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.