Finding Our Way Home: A Reflection on New Year's Day 2021 by Priscilla Mainardi

In these troubled times of sickness and loss, of protest and division, it’s uplifting to read about positive actions, such as those I took for a dying friend, which I describe in my piece “To Melinda” (Fall 2020 Intima). Two other works in the Fall 2020 Intima also describe small positive acts that make a difference in people’s lives. Reading them eases our sense of helplessness by offering us hope.

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Always Tell The Truth, Except When It’s Maladaptive by Douglas Krohn

In the most neurotic days of the pandemic, I return home from my contaminated workplace, and sincerely offer my wife solace . . . in the form of a big fat lie. On another day, I confide in her the loss of a colleague . . . and wound her with the facts.

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Attunement: Reflecting on the Art of Making a Difference by Catherine Klatzker

Empathy and compassion arise from sensitizing events, often many. Sometimes it’s easier than others to track those events to their origins. Patient Jane provided student-doctor Brian Sou with one such activating event. (Field Notes “A Student’s Moment in NYC’s Most Famous Hospital”) In their first encounter, Sou writes “I did not manage to comfort Jane in her moment of vulnerability, when she needed someone to do so the most. I was so interested in the medical aspect of curing that I completely neglected the compassionate side of healing.”

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On “When Suicide Speaks Arabic”: A Deeply-felt Call for Cultural Representation in Medicine by Sunidhi Ramesh

A suicide attempt. A Syrian teenager. A team of American psychiatrists whose training suggests he is out of the woods. But, to Dr. Ibrahim Sablaban, something does not sit right. The son of Arab refugees, Dr. Sablaban sees hidden red flags in the teenager’s story.

When Suicide Speaks Arabic” (Fall 2020 Intima: A Journal of Narrative Medicine) is a story of quiet compassion. It is a story of intuition born from upbringing—of a physician who sees a slice of himself in a patient who is in need of understanding.

It is also, at its core, a story about cultural representation. Dr. Sablaban instantly connects with his young patient by speaking in Arabic (citing that he had “already heard [the] story in English, and from [his] experience, it could be a distant language”). He is able to parse out the boy’s feelings of shame and sinfulness by referring to his own understanding of the Islamic faith. This was not at all the patient he had heard of earlier during rounds; this “was a tragedy waiting to happen.”

Dr. Sablaban’s story of connecting with and ultimately facilitating better treatment for this young Syrian boy can be viewed as a stroke of luck—a happy encounter and a happy ending. But he ends his piece with a striking sentence: “I can’t help but feel like it was more a story about failure than success.”

And it could be made out to be that way. Many knowledgeable and experienced physicians spoke to the patient before Dr. Sablaban did. Yet, it was his cultural knowledge, not his medical knowledge, that ultimately helped this boy.

Some sobering statistics: 0.4% of US medical doctors are Hispanic, while Hispanic individuals make up 17% of the American population.1 4% of US medical doctors are African American, while African American individuals make up 13% of the American population.1 Similar statistics hold for the majority of minority groups throughout the country. This lack of racial representation in medicine is widely cited, and efforts (albeit small ones) are underway to address it.2

Dr. Sablaban’s story, however, is about more than racial representation. Race is not equivalent to a language. Or a culture. Or religion. Race is not at all encompassing, and racial representation would not have been enough to fully address this teenager’s needs. Perhaps, then, there must be an adjustment to the discussion about diversity in medicine—about the need for physicians who “look” (i.e., race and gender) more like the population they are serving.

Perhaps the need is for physicians who simply are more like the populations they serve—who speak the languages, practice the religions, and have had the experiences that their patients face every day.


References

1. Sullivan, Louis W. Missing persons: minorities in the health professions, a report of the Sullivan Commission on Diversity in the Healthcare Workforce. 2004.
2. Cohen, Jordan J., Barbara A. Gabriel, and Charles Terrell. "The case for diversity in the health care workforce." Health affairs 21.5 (2002): 90-102.


Ramesh, Sunidhi .jpeg

Sunidhi Ramesh is an MD Candidate at Sidney Kimmel Medical College at Thomas Jefferson University. She graduated Phi Beta Kappa from Emory University in 2018 with degrees in sociology and neuroscience and is the managing editor of "The Neuroethics Blog." She has also served as the education co-director for the Philadelphia Human Rights Clinic. Ramesh’s writing has been featured in Stroke and Vascular Neurology, Retina Today, and the American Journal of Neuroradiology. She authored the Winning Essay in the 2019 International Neuroethics Society Essay Competition and has written chapters on neuroethics and neurotechnology in various textbooks. Ramesh works on research spanning neurology and neurosurgery, particularly focused on perceptions of invasive brain surgery, intra-arterial chemotherapy, and the implementation of tele-stroke protocols in hospital emergency rooms. Her non-fiction essay “3:43 AM” appears in the Fall 2020 Intima. @sunidhiramesh

Counterweight: 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.

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The 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.

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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.

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Discerning 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.

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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 Nar…

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.

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.

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?


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.


© 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 car…

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.

The Balance of Blame, When Something Goes Wrong, a reflection on "Physician as Enabler" by Philip Berry

In my article ‘Semantics in the Elevator’ a doctor reflects on his culpability after a colonoscopic perforation (not based on a real incident). The patient’s anatomy is fleetingly blamed; then he considers the fact that he just happened to be in the wrong place at the right time – the perforation could well have happened if a colleague had been doing the procedure. 

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