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.

Dads, 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?”

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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

Swimming Alone: Thoughts on What It’s Like Being a Medical Student Thrown Into the Proverbial Deep End of the Hospital Wards by Thomas J. Doyle, MD

Thomas J. Doyle MD is an internist who lives in Providence, Rhode Island. His Field Notes essay "To Pronounce" appeared in the Spring 2018 Intima: A Journal of Narrative Medicine.

I can’t recall the first time I performed a death pronouncement. I’m sure I was taught how to diagnose death, but I can’t summon to mind much in the way of specifics. My recollections are vague, often from nights on call as a student or intern tagging along with senior residents as they performed death pronouncements on the wards.

On the other hand I can immediately summon to mind many other experiences from the pressure cooker of medical training. I can visualize the frothy trachea of an enormous man in respiratory failure whom I successfully intubated during a rotation in the ICU. I still cringe recalling ribs cracking under my palms as I performed CPR on a frail elderly man. I pushed rapidly on his sternum and recoiled internally even as I knew my technique was correct, recalling an attending’s advice that “sometimes you need to break some ribs for a good cardiopulmonary massage.”

I feel a personal sense of loss that I didn’t write down the emotional impact of my early experiences in learning to diagnose death. My essay “To Pronounce” is an attempt to make up for that loss.

And it is with that sense of loss in mind that I applaud William Fyfe for his essay “No Time For Tears Today,” published in the Fall 2017 Intima: A Journal of Narrative Medicine under ‘Field Notes.’ In concise, immediate, elegant prose, he captures the essence of what it’s like to be a medical student thrown into the proverbial deep end of the hospital wards. Many of Fyfe’s words resonate with my memories of training: “chaos,” “imposter,” “sheepish,” “drained,” “ashamed,” “unexpected.”

In particular, his essay captures an unspoken lesson students are expected to absorb while keeping their heads above water – that in medicine we are expected to swim because – well, because that’s just what we have to do.

Fyfe’s prose, however, hints at the emotional isolation that can creep into our lives in medicine very early on, and locates the reader squarely in the proverbial moment when we may momentarily “get it together” to confidently function with humanity.

I like to think that Fyfe’s title is intended to convey a touch of irony because, after all, a decent amount of the reason there are so many among us who become numb or burned out is because we can’t, or don’t, let ourselves have time for tears at least once in a while.

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Thomas J. Doyle MD is an internist who lives in Providence, Rhode Island. He graduated from The Warren Alpert School of Medicine at Brown University in 2003 and completed training in internal medicine at Rhode Island Hospital. He practices inpatient hospital medicine at Charlton Memorial Hospital in Fall River, MA. His Field Notes essay "To Pronounce" appeared in the Spring 2018 Intima: A Journal of Narrative Medicine

A Death Is Not Closure: How Poems Can Help Bring Clarity to Our Loss by Alida Rol

Alida Rol practiced as an OBGYN physician for many years. She holds an MFA in writing from Pacific University. Her poem "After A Year in Hospitals" appears in the Spring 2018 Intima.

In her poem, “Writing Elegies Like Robert Hass”(Fall 2015 Intima), Jenny Qi wrestles eloquently with the death of her mother. She hooked me with the title, and she does American poet Robert Hass, who served as Poet Laureate of the United States from 1995 to 1997, proud. This is not a sugarcoated remembrance but a wry and thoughtful, grateful and pained elegy. I assume the speaker is Qi herself.

She layers nuanced and conflicted emotions, recalling her mother’s bad habits, like scratching “bug bites until they bled,” being “petulant and stubborn,” or driving “too fast,” but also the traits that made her so endearing: She was “so greedy for living, so hasty with love.” Qi wants to remember her mother’s generous and genuine qualities, but then in the chilling final stanza recounts the burden she still carries over how her mother died. The poem transitions seamlessly between all the unsorted, colliding feelings, before it leaves us with a closing heartbreak.

For years, I tried to write poems about my brother’s death. Over time I found the memories slipped away yet, paradoxically, a clearer picture of him began to emerge. I wrote about discovering who he was in the poem, “After A Year in Hospitals,” aware that we, the living, may perhaps be reinventing the persons who can no longer speak for themselves. Although, in this poem, I did not include my own misgivings over the way my brother died, I relate very strongly to the way Qi vividly describes her torment over her mother’s last moments.

Description alone cannot do her poem justice. It needs to be read in its entirety to experience the impact. Reading Qi’s poem reminds me that poetry has the power to evoke, through concrete images and masterfully chosen words, an empathic emotional state.

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Alida Rol practiced as an OBGYN physician for many years. She holds an MFA in writing from Pacific University. Her poems and essays have won several awards and have appeared in Rhino, Passager, The Examined Life, Nasty Women Poets Anthology, and Hektoen International, among others. She lives in Eugene, Oregon. Her poem, "After a Year in Hospitals" appears in the Spring 2018 Intima.

Life and Death in the ER: What's Real, What's Fiction? by Carol Scott Connor

Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. Her story "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Readers of my piece "After Midnight" often ask me, “What happened to the cop?”

I answer, “It’s fiction. There never was any cop.” But the truth is more complex than that.

There were patients very similar to this during my medical school and residency years. From those memories I can say with confidence that although the piece ends with the cop about to arrive, alive, in the Recovery room, he almost certainly would not have survived to leave the hospital. As subsequent decades passed, we became more facile in resuscitation, better attuned to the factors that predict a successful outcome. In that time, at that place, we simply did everything we could to fight for life.

As you may have guessed, the piece is firmly rooted in my own experience as a wide-eyed medical student. Originally destined for a career in the cerebral specialty of cardiology, I became a convert to surgery after a night when the team (at least temporarily) cheated death and everything seemed possible. When the swoosh of the dark wings of death could be heard, and we seemed to be able to beat that old carrion-bird back into the darkness. And the night ended with a trip across the roof to start rounds.

A far more realistic and nuanced view is presented by Anna Belc in “Getting to Know Dying.” She writes of the early recognition of imminent death in those who are in the zone of criticality. She speaks of anticipating death so as to better be able to prevent it – for example, for a patient at risk of bleeding out, start two large-bore IV’s.

She also speaks of the difficulty preparing the survivors, the family. And, implicit in all of this, is the personal toll on the healthcare team. Those who deliberately choose to work in the zone where life and death intersect are, indeed, very special people.

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Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. She writes memoir in the form of fiction, exploring the world of women in surgery. Her stories have been published in multiple literary journals ranging from “The Healing Muse” through “North Dakota Quarterly,” and nominated for a Pushcart Prize. A collection of her short stories was published as “A Few Small Moments.” She is past editor-in-chief of “The Examined Life Journal: A Literary Journal of the Carver College of Medicine” and currently serves as its fiction editor. "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Dinner, Revelations and Narrative Medicine: Tales told by Intima Spring 2017 by poet Wendy French

This is a blog about Intima and narrative medicine in general and all that we can read and absorb from this excellent online journal. Every issue grabs my attention for the poetry, articles and the blogs that respond to other people’s work.  

Wendy French is a poet, whose latest collection of poems is "Thinks Itself A Hawk" (Hippocrates, 2016). Her collaboration with Jane Kirwan resulted in the book "Born in the NHS" (Hippocrates, 2013). She won the Hippocrates Poetry and Medicine prize for the NHS section in 2010 and was awarded second prize in 2011. She has worked for the past twenty years in healthcare settings. Her poem "Exchange" appears in the Spring 2017 Intima.

My poem "Exchange" was written after my son came home from working in the Far East. He brought with him a girlfriend who had also been working with him for the British Council. Poom was Thai. We had never met before and they arrived in the evening. She was exhausted from the long flight. I had prepared a meal and over supper, a nurturing and nourishing time and good time to talk with new and old friends. She told me that her father had died and she was still very sad.  We had candles on the table but we lit another one for her father and placed it in an important position near the flowers that seem to symbolize new growth, new seasons. 

Then Poom started to tell us that she had had Stevens-Johnson Syndrome, a syndrome I had never heard of. But as she told us her story another narrative emerged, the emotional need to now pass on the story. This for me is what narrative medicine is all about. It’s telling our stories to a health professional who can understand what is going on for us emotionally, intellectually and physically. Poom felt, at this supper in a country she didn’t know, not long after her father’s death and this dreadful illness, that she needed to talk about it and try and rid the experience from her mind in a strange country. This was her narrative being told right now.  

I was very struck by the wisdom in Vivian Lam’s Crossroad's essay "This Game We Play Called Dying."  Even dying has a narrative for each individual although by the time we are in the clutches of death we may be too ill, too sick, to tell our story to anyone. So it is the people who care for us who have to interpret our story at this stage of our lives. Hence the need, as Vivian Lam says, to be able to know whether or not the dying person wants someone with him/her now or whether she/he’d rather take the final steps alone. Therefore it is the responsibility (and I mean responsibility) of the nearest person to the dying to have found out this part of the narrative while it is possible to do so. This may be the health professional who cares and treats the dying with compassion. Dying is the final and may be the most important part of the narrative.   

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Wendy French is a poet, whose latest collection of poems is Thinks Itself A Hawk (Hippocrates, 2016). Her collaboration with Jane Kirwan resulted in the book Born in the NHS (Hippocrates, 2013). She won the Hippocrates Poetry and Medicine prize for the NHS section in 2010 and was awarded second prize in 2011. She has worked for the past twenty years in healthcare settings. She was Poet in Residence at the UCH Macmillan Centre from April 2015-2016 and this year will be working with patients/caregivers on writing memoirs. She is one of six poets invited to Bucharest to work with MA students on translations of their novels into English. She currently is writing poems to celebrate Waterloo Bridge.