The intimacy of touch is deeply rooted in vulnerability, and COVID-19 is reminding us that this vulnerability is biological as well as emotional. For Dr. Vlasic, touch was an act of trust, but nowadays trust seems best measured by how far apart we stand and how carefully we obscure the lower half of our faces.
Read moreCounterweight: On Veteran’s Day 2020, a reflection about carrying the weight of the past by Michael Lund
A response to Karen Lea Germain’s essay titled “Weight” in the Spring 2020 Intima. I begin with the weight of my parents’ cremains (analogues to those of Germain’s aunt and uncle), physical realities blending with the heaviness of regret. I will end, hopefully, with the lightness of relief (in which the pun of light includes illumination). At the center of my response to her fine essay is the weight of a military veteran’s sorrow.
Read moreThe Body Politic: Fashioning our own earthly justice in a challenging time by Adam Lalley
In the short story “Good As New” by Andrew Taylor-Troutman in the Spring 2020 Intima, the site of a teenager’s accidental death becomes a healing destination. At the little white cross beneath an oak tree, cancer is cured and the wounded throw off their wheelchairs. But when a line of pilgrims stretches into the next county, the miracle dries up.
Some, but not all, are restored. The inequity mirrors the disparities of our very own bodies— our health, even the lengths of our lives, are doled out unequally. There’s no earthly justice in our bodies.
Read moreSeeing is Believing: Reflecting on Miracles by Andrew Taylor-Troutman
A reflection on “My Grandpa” by Meghan Wang (Poetry / Spring, 2013)
I see his body, but I do not see him
So begins Meghan Wang’s poem and her words cut to the core of the grief I have known in watching an aged loved one. I have lost people before their actual deaths. I know that sight is a metaphor for understanding. That is the double-meaning of the poem’s line:
It’s hard to see him like this
A Physician's Response in an Emergency: Humility Complements Competence by Rachel Fleishman
Watching a medical emergency as a physician who is not functioning as a leader or caretaker unearths discomfort, a mingling of denied identity with humility. And it is from this vantage that we can harness the power of narrative medicine to create space for reflection, to make sense of medicine and how it unfolds.
Read moreOn the Sacrosanctity of the Body Chambers by Michal Coret
A medical student balances the duties of respect and learning in the anatomy lab.
Read moreDiscerning Different Shades of Grief by Jeffrey Millstein, MD
In my essay, “Remembrance,” I discovered my own grief for a recently deceased long-time patient while continuing to care for her widowed husband. John Jacobson’s piece “Now and Then” (Fall 2018 Intima) brought me deep into the chasm of a different type of grief, from loss of someone who was, and to a more attuned place from where to offer empathy.
Read moreThe 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.
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.
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.
Strong Beat: Susan Sample’s poem“Indigo” and the Music of Rhythms by Michele Parker Randall
A poet examines the way poetry synthesizes medicine and art.
Read moreA Reflection on Philip Berry’s “Semantics in the Elevator” and the Word “Sorry” by V Karri
Karri explores the multiple meaning of the word “sorry” in her daily practice.
Read moreThe Isolation of the Caregiver in John Jacobson’s “Now and Then,” a reflection by English professor Brian Ascalon Roley
The difficulty of caregiving is shared through prose and poetry..
Read moreWhen Life Changes in a Moment: A Response to “A Mother’s Life” by poet Emily Kerlin
An operative disaster affects both the surgeon and the patient.
Read more“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.”
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.
Little Rescues and Betrayals: A reflection on the practice of drug formulary exclusions and more by Katy Giebenhain
Betrayal in health care happens to both doctors and patients when others decide upon the availability of medications.
Read moreListening, Conversation and the Power of Touch in Healthcare, a reflection by Howard Carter
How do we provide compassionate care in the face of many new impediments? The author found one thing that may help.
Read moreShould You Limit Your Emotional Connections with Your Patients? Two differing views, by Andrea Eisenberg
Eisenberg looks at the role of emotion in patient care.
Read moreOn Alzheimer’s and the poem, “All The Girls Were There and Gorgeous,” a reflection by Hope Atlas
Charlene’s tender moment with her mother reminds me to hold onto and take heart from similar moments. When my father could no longer speak, I gratefully still had his warm hand to hold. There was at least still this live connection.
Read moreMulti-lingual Solace: Holding Space for Co-Existence by Elisabeth Abeson
The line summarizing Emma Rivera’s poem, “Mi Jardin / My Garden” (Intima Fall 2011) reads, “Nature and its straightforward beauty brings solace in any language.”
Read moreDads, 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?”
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