“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.

How a poem entitled “All the Girls Were There, and Gorgeous” helps us reflect on illness, morality and memories by Andrew Taylor-Troutman

Andrew Taylor-Troutman earned a certificate in Narrative Healthcare from the Thomas Wolfe Center for Narrative through Lenoir-Rhyne University. He is a Presbyterian pastor serving a congregation in Chapel Hill, North Carolina. His story “Cups and Such” appears in the Spring 2018 issue of Intima: A Journal of Narrative Medicine.

A year ago, a half-dozen older women gathered in a church fellowship hall. The coffee percolated as copies of “All the Girls Were There, and Gorgeous,” a poem by Carlene Kucharczyk in the Spring 2017 issue of Intima, were passed around our circle of chairs. As facilitator of this narrative healthcare workshop, I read the poem out loud. The gas logs hummed for a moment in the silent room. I was about to launch into questions specific to Kucharczyk’s remarkable poem when this participant spoke, quietly yet clearly: “Do you think it would be easier to have Alzheimer’s or ALS?”

A year later, her question came back to me and I wrote my little story, “Cups and Such,” not as an answer, but to continue the conversation.

Her question proposes a binary. In some ways, “Cups and Such” is the mirror opposite of Kucharczyk’s poem – a woman awake in her life, though / she doesn’t know it compared to a man fully aware of the betrayal by his body. But both poem and story deal with the same haunting theme: What is our relationship to our past? Memories flit and flash in and out of our consciousness like fireflies. Is hindsight really 20-20? Or, is it that we are continually revising our story to make meaning? “Revision” means to look again; etymologically, so does “respect.”

Skilled poets, like Kucharczyk, write with clarity yet focused ambiguity, thereby asking readers to look again and again for interpretations. We read and continue the conversation. A year later, I remember how the workshop participants were divided as to the moral character of the narrator: We do not like to visit her, / I hope she does not know. Was the narrator a “good granddaughter” or not? What is expected of us when a family member has a terminal disease? Could it be that the way the sick perceive us changes, say, from a bright shining face to the appearance of a moon? Is that cold and distant? Or, could the transformation be a natural reflection of a previous light?

And I still wonder, in Kucharczyk’s words, about the part that is elsewhere. Time is not linear. Perhaps there are moments, even in pain (whether physical or emotional or spiritual), when all the girls are gorgeous, when all is whole again and saved.

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Andrew Taylor-Troutman earned a certificate in Narrative Healthcare from the Thomas Wolfe Center for Narrative through Lenoir-Rhyne University. His recent essays have been published online at Mockingbird (http://www.mbird.com) and his poetry at Bearings (https://collegevilleinstitute.org/bearings). He is a Presbyterian pastor serving a congregation in Chapel Hill, North Carolina. He and his wife have three children. His story “Cups and Such” appears in the Spring 2018 issue of Intima: A Journal of Narrative Medicine.