The link between touch and trust is explored by the author.
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 moreSuffering’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?
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 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.
Read moreLittle 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 moreThe Flip Side of Mammography Screening by Charlotte Crowder
Do I need a mammogram? The author takes on this complex topic.
Read moreWho Are Illness Narratives For, Anyway? by Rachel Conrad Bracken
Whether formally written and published or only ever shared with our most trusted confidants—perhaps never even uttered aloud at all—narratives structure our understanding of the world and of our selves.
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 more“‘Dances with Pills’ is a poem that speaks to me,” by Karl Gustav Kroeppler, an artist living with Trigeminal Neuralgia
Transcending personal pain through art.
Read more"The Reality of A Missed Diagnosis," a reflection on "The Weight," an essay by Vik Reddy, by Beth A. Lown
The weight of medical errors becomes a natural part of learning.
Read moreThe Shift from Objective to Subjective: A Reflection on "Scrap of a Story" by Justin Milan, RN
A nurse reflects on when the clinical becomes personal.
Read moreThe Synergy of Reading and Writing Poetry by Ron Lands
When hope surrenders to loss
Read moreCapturing the Ordinary: Writing about illness and the everyday by Yoshiko Iwai
Yoshiko Iwai is a writer and dancer from Japan, living in New York City. She is a master’s candidate at Columbia University for her MFA in Creative Nonfiction and MS in Narrative Medicine. At Columbia, she is a Chair’s Fellow for the Graduate Writing Program and teaches creative writing in prison facilities as a member of Columbia Artist/Teachers. Her non-fiction essay “The Witness’” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.
I’ve been particularly drawn to illness narratives that capture the unexpected. As modern readers, I think we’ve been primed for—in books, film, music, even commercials and PSAs—certain characteristics in stories about illness. Even in my own writing about parental cancer, I often catch myself invoking similar, predictable images: taut skin, falling hair, brittle frame. I’ve found that one way to capture a different angle of the illness experience is by giving space for ordinary moments, and Steve Street does this well.
In Street’s nonfiction piece “Hey Hey Hey Hey”, he tells the story of his experience with cancer. What strikes me about his writing is the ability to capture the interruptions his illness has on his everyday life—he subverts our expectations.
He writes: “I love everybody now, even when they don’t love me. A guy behind me in the donut shop line, the beleaguered woman who slid over my burrito order for minimum wage—I chirp at them. They both scowl back.” We see, through this scene, with Street’s love for the man behind him in donut line, the subtle and specific way illness creeps into life. We feel his warmth, despite his illness. Later he writes, “I have a million things to do, and one by one, I’m getting them all done: errands, will arrangements, getting a tattoo—small, tasteful, inside left forearm—so the phlebotomists have something to look at when they draw my blood.” I love that tattoo. I love the urgency of this sentence, and of his illness, that manifests in an unexpected way.
In my own short nonfiction essay, “The Witness” I wanted to capture the ordinary. Not being able to go to the theatre to see Harry Potter because the oxygen tank is annoying to lug around, is a real problem. It’s something the doctor or anyone on the caregiving team may not recognize, but it’s still an interruption to life, to something good.
I am interested in finding ways to capture these quirky, sometimes peculiar, but honest moments in illness narratives. And I think reading writers like Street can help us, as readers, see a bigger picture of a person’s experience beyond their physical condition.
Yoshiko Iwai is a writer and dancer from Japan, living in New York City. She is a master’s candidate at Columbia University for her MFA in Creative Nonfiction and MS in Narrative Medicine. She graduated from the University of Michigan with a BFA in Dance and BS in Neuroscience, and was also an editor/writer for The Michigan Daily. At Michigan, she was the recipient of the Earl V. Moore Award for Excellence in Dance and the Hopwood Nonfiction Award. At Columbia, she is a Chair’s Fellow for the Graduate Writing Program and teaches creative writing in prison facilities as a member of Columbia Artist/Teachers. Her non-fiction essay “The Witness’” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.
©2019 Intima: A Journal of Narrative Medicine
On Compassionate Storytelling in Graphic Memoir: Pat Arnow’s "A Death in Chicago, 1972: Elizabeth Kubler-Ross and My Family" By Jonathan Garfinkel
Jonathan Garfinkel is a writer whose work has been translated into twelve languages. He is the author of the book of poems Glass Psalms (Turnstone Press, 2005) and the chapbook Bociany (Storks) (KFB, 2017). Garfinkel is currently doing a PhD in Cultural Studies in the field of Medical Humanities at University of Alberta. Find more of his work at jonathan-garfinkel.com. His non-fiction piece “Diabetes Diary” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.
Pat Arnow’s touching account of the death of her father illustrates the power of graphic memoir, showcasing both her talent as illustrator and writer. There is something simple and intimate in the story she tells, as Arnow lets us into the private moment between father and daughter, father and family, and we witness his journey toward death from cancer. The effect is incredibly moving. In part, the form of the graphic memoir allows Arnow to achieve this. In distilling pivotal moments in her father’s end of life journey, her illustrations evoke vulnerability, joy, beauty and love between family members.
Many moments leap out. Early on, Arnow portrays her father’s love for his wife as he sits with her making clay pots. Toward the end, drawings of her father’s eyes – first from afar then moving in closer with each panel until we are left with only a black mass of pupil – leads the reader into the unknown that is death. These moments – singular, familiar - allows the reader to feel the vulnerability the terminally ill and their families experience – it ripples through us. How do we help those we know who are dying, those we love most? Who hasn’t grappled with these impossible questions, mourning the passage of a father’s life?“
“A Death in Chicago” is also a poignant historical reflection on shifting cultural attitudes towards terminal illness. In referencing the landmark work by Elizabeth Kubler-Ross, On Death and Dying, as well as bringing the actual author into the text (who, in 1972, comes to see the family and helps to lobby on behalf of Arnow’s father so he gets what he needs – to go home), we witness firsthand the importance of a compassionate medicine, as well as the vast disjunct between first and third person narratives: the subjective experience of illness as opposed to the objective symptoms of disease. There is still a long way to go in terms of humanizing medical professional attitudes today, but voices like Arnow’s are incredibly important for leading the way toward a broader empathy.
As I continue to write A Diabetes Diary, I know Arnow’s beautiful graphic memoir will leak into my lines. In part I am envious of her ability to tell a story through such well-wrought images. Ultimately, it is her compassionate storytelling that I will take away. Thank you, Pat Arnow, for this moving work.
Jonathan Garfinkel is a writer whose work has been translated into twelve languages. He is the author of the book of poems Glass Psalms (Turnstone Press, 2005) and the chapbook Bociany (Storks) (KFB, 2017). He has written numerous plays including The Trials of John Demjanjuk: A Holocaust Cabaret (2004), the Governor-General shortlisted House of Many Tongues (2009) and Cockroach (2015); they have been produced throughout Canada, Germany, Russia and Ukraine. His memoir Ambivalence: Crossing the Israel/Palestine Divide (2008) was published in five countries to critical acclaim. Jonathan is also an award-winning non-fiction writer and has been anthologized in Cabin Fever: The Best New Canadian Non-Fiction. His first novel, The Altruist, is forthcoming from House of Anansi (2020). Named by the Toronto Star as “one to watch,” Garfinkel is currently doing a PhD in Cultural Studies in the field of Medical Humanities at University of Alberta. Find more of his work at jonathan-garfinkel.com. His non-fiction piece “Diabetes Diary” appears in the Spring 2019 Intima: A Journal of Narrative Medicine.
©2019 Intima: A Journal of Narrative Medicine
The Caregiver’s Space: Thoughts on John Jacobson’s Essay “Now and Then” by Simona Carini
Simona Carini, who was born in Perugia, Italy, is a graduate of the Catholic University of the Sacred Heart in Milan, Italy and Mills College. Carini writes nonfiction and poetry and has been published in various print and online venues. She lives in Northern California with her husband and works as an academic researcher in Medical Information Science. Her poem Diagnosis appears in Poetry in the Spring 2019 Intima: A Journal of Narrative Medicine. Find more of her work at simonacarini.com.
Events like a disabling illness or accident, or a terminal diagnosis bisect life into the time before and the time after for the person directly affected and her/his family. We adjust to the new situation, but there remains a memory of the carefree past.
Though I have not been a caregiver in such an intense situation as that John Jacobson describes in his essay “Now and Then” ( Intima, Fall 2018) understand his struggle with accepting the present.
Jacobson touches upon the constant requirements of his wife’s health situation, the energy (both physical and emotional) involved. Caregivers don’t cease to have feelings, thoughts, or hopes just because caring for another person has become central to their life.
When you are thrust into the role of caregiver, there begins a struggle to maintain a balance and to keep a private space, where you can be with yourself and do something not related to providing care. Both Jacobson and I talk about a natural setting acting as that space:
Darkness seems to seep out of the woods as if exhaled by tree roots. Gray poplars at the edge of dark pines look nearly white. Beavers have taken some down leaving pointed stumps. Three ghostly white poplars felled recently lie across the path. I climb over them and walk on toward the pond.
Nature tells us of impermanence, encourages us to believe our grief will evolve too.
I want our good times back. It can’t be changed though. It’s a want I have to let go of. I wonder if then I can begin to find acceptance. I try to imagine what acceptance might feel like.
Where do we begin to find acceptance? Rowing in silence in the early morning hours played an important role in my case:
I balance on the water seeking grace
to breathe and draw a trace that leaves no trace.
Jacobson writes: I think I will know acceptance when I count my successes even when they are much smaller than I hoped for… I imagine feeling anticipation of what comes next instead of dread.
He can imagine a future.
When I rise again, an owl flutters out from branches and flies on silent wings over white ice on the pond.
Simona Carini, who was born in Perugia, Italy, is a graduate of the Catholic University of the Sacred Heart in Milan, Italy and Mills College. Carini writes nonfiction and poetry and has been published in various print and online venues. She lives in Northern California with her husband and works as an academic researcher in Medical Information Science. Her poem Diagnosis appears in Poetry in the Spring 2019 Intima: A Journal of Narrative Medicine. Find more of her work at simonacarini.com.
©2019 Intima: A Journal of Narrative Medicine