Narrative Medicine

Narrative Medicine Monday: Leaving the Body

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Author Lisa Knopp shows how we can be drawn to the presence of a body even following death in Hospital Drive‘s “Leaving the Body.” After her mother dies, Knopp lingers in her hospice room, asking to stay as a woman enters to wash her mother’s body and ready her “for the people who are coming to pick her up soon.”

Knopp initially wonders about “the point of bathing my mother, since her body will soon be ash.” The nurse’s aide speaks to Knopp’s mother as she wipes her face and arms. Knopp finds this “comforting, this informing my mother of what’s about to be done to her, since I can feel that something of her is still here.”

When the aides remove the woman’s gown, Knopp is filled with wonder at her mother’s naked body. “Even though she would feel shamed by my scrutiny, I want to savor and memorize the details.” This body holds memories for Knopp, the substance of a mother-child relationship, connection: “I know their shape so well: large knee bones, slightly bowing calves, like those of her mother, and thick ankles. Just below her right knee on her inner calf is a blue vein, an inch or two long that has been there as long as I can remember.”

In these moments right after her mother’s death, Knopp finds herself “starving for her physicality” and tells the aide she’d like to touch her mother. She kisses her forehead and strokes the top of her head and wonders, “What is it that I’ll be missing now that my mother’s heart has stopped beating, and she’ll soon be turned to ash?” Her mother has died, but Knopp is still drawn to her physical body, the familiarity of her mother’s form that will cease to exist. Knopp shares that her greatest regret will be that “we didn’t spend more time in each other’s physical presence” and that this final sponge bath is her “last chance to see and touch and smell my mother, flesh of my flesh, my first home.”

Knopp recalls all of the beautifully mundane things she and her mother chatted about on the phone, though they rarely discussed her cancer or the grander questions Knopp yearned to ask her dying mother. The loss Knopp highlights in her essay isn’t so much about the flesh itself, but more about her experience of her mother that was contained in that body: her “voice, words, thoughts, laughter, and silences.”

Knopp reflects on the waning importance of physicality in our modern world, how the dean of her college encourages faculty to have more screen time and less face time with students, how so many interactions with friends are via social media and not in person.

At the end of the essay, Knopp combs out her mother’s hair, braids it with care and cuts a lock of hair as a token. Knopp is unsure what she will do with the lock of hair, but the gesture seems satisfying in the moment, keeping “more than just memories of her body” before they wheel her away.

Writing Prompt: If you’ve been present with a dead body, either a loved one or a patient, what did you experience while in that space? Was it difficult? Healing? Both? Did you feel drawn to touch the body, as Knopp did? What are your thoughts about Knopp’s observation that we spend significantly less time face-to-face? How do you think spending less time in the physical presence of others might affect us? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: On the Eve of My Mother’s Dying

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Writer Peggy Duffy’s flash nonfiction piece in the latest issue of Brevity, “On the Eve of My Mother’s Dying,” is a snapshot of her mother’s last days on hospice.

Duffy opens with the assertion that those who work in hospice “coordinate.” In my experience, both as a physician and as a family member, caring for those at the end of life, this verb rings true. The hospice people coordinate all the details of transport and durable medical equipment and adjustment of medications for comfort and, ultimately, Duffy realizes, “my mother is actively dying, and they strive to coordinate that too.”

Duffy’s father is upset they are not coaxing his wife into eating, despite her being unresponsive. The social worker explains to him “that unless my mother opens her eyes and asks for food, unless she can swallow, she cannot eat.” Duffy understandably struggles with her father’s resistance to accepting why they can’t give her mother water to drink: “Not long after I leave, he calls. Why won’t they give her water? She can’t swallow. What about on a teaspoon? You have to swallow even the tiniest amount of water. How can she survive without water? (Pause) She isn’t going to survive. I remind him she signed an advanced directive years ago when she was still lucid and knew what she was signing.”

Duffy is surprised at the stretching of time in the final days of her mother’s life: “I can’t work, can’t think, can’t sleep. I never knew dying could take so long.” If you’ve cared for a loved one on hospice, did you experience the same distortion of time as Duffy?

The piece ends with a touching, and surprising, kiss from Duffy’s mother: “Something long dormant stirs beneath my chest where my heart lies. I lay my head on her chest where her heart still beats.”

Writing Prompt: Have you had difficulty explaining any aspect of end of life care to a spouse, child or parent of a dying patient? Often loved ones have discussed clear wishes of what they would like done, and not done, when nearing the end of life. When it comes time to actually carry out actions according to these wishes though, this still can remain a painful process. Have you experienced this first hand? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: And Still We Believed

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Emergency physician Dr. Rebekah Mannix relays the story of her teenage goddaughter who developed vomiting and eventually a dire diagnosis of metastatic cancer in JAMA’s “And Still We Believed.”

Mannix finds herself researching experimental treatments, hoping for a “miracle,” but unable to find any in the medical world: “We did not comprehend that someone so healthy and vibrant…could succumb.” Even after the patient was transferred to comfort measures only, Mannix admits she “still wasn’t ‘there’ yet.” “Even as I knew she would die, I believed she wouldn’t.”

Mannix speaks to the idea that even as physicians, as scientists, we “know better” but still our humanity takes precedence over logic and understanding. There is a lesson here for medical providers. Patients may comprehend what we tell them, but they might not always believe it: “Even as they sit holding the hand of a loved one on a morphine drip–whose organs have shut down, whose words have ceased–they still may not believe death will come.”

Writing Prompt: Have you ever experienced a dire diagnosis for your yourself or a loved one and not believed it? If you’re a physician, how can we best navigate supporting a patient or their family when, despite clear evidence to the contrary, they “still believe.” Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Relapse

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Poet and nurse practitioner Carolyn Welch captures a summer moment in Intima‘s “Relapse.” Welch’s daughter suffers from mental illness. She begins with an acknowledgment that is familiar to anyone who loves a person with a chronic condition that remits and relapses: “Of course we knew it could happen.”

Welch’s poem is a recognition that life moves forward despite the shadow of such a recurrence threatening to disrupt: “…summer plodded on with heat and harvest– / a steady supply of peppers and tomatoes;” The garden and growth are reliable, predictable, even as Welsh speaks to her daughter who has returned to an undesirable state of illness. Welch, with heartbreak evident, realizes “the meds are off.”

Writing Prompt: Consider a chronic illness that can relapse, often unpredictably: depression, multiple sclerosis, addiction, cancer. How does it feel to be the family member, the physician, the patient for each of these conditions? Write a triptych that includes each of these perspectives. Alternatively, near the end of her poem Welch acknowledges a “nagging failure of want.” Have you felt a similar sentiment as a family member is suffering? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: The Second Floor

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Poet Rachel Hadas describes how those near the end of life grow distant before they pass in “The Second Floor.” She begins with a dream, consisting of “a harried pilgrim to a shrine.” She states that “[a]s quickly on their short legs toddlers move, / tall parents lumbering in slow pursuit, / so they speed onwards, people whom we love.” I like the unexpected juxtaposition of the unsteady toddler at the beginning of life to the dying loved one at the end. She paints an image of Sam and his daughter cradled together in “[s]leep and love, the quick, the nearly dead.”

Writing Prompt: Do you agree with Hadas’ assertion that the terminally ill are “somehow out of reach well before the grave?” Why or why not? What role do dreams play in our processing of ill or dying loved ones? Have you experienced such a dream? Write for 10 minutes.

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Ramblings

Free Write Friday: Trains

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We ride the monorail to the city center, food court and live music on stage, families milling around on a holiday weekend, heading to the children’s museum or playground or bringing tourists to the iconic needle in the sky. Their dad is hungry, so he peels off to peruse the menu of greasy gourmet burgers, poutine doused in thick sauce, a grilled cheese dripping in butter for the kids. I veer the little ones to the centerpiece, the electric train. Every winter it’s set up in the center house, a pretend village sprinkled with snow and Christmas cheer. I never noticed the details before. My children now old enough to pause, stand still in wonder long enough for me to explore. Tiny figurines placed carefully, carrying wrapped boxes, firewood, bundled babies in their arms. My four year old’s excitement builds as the train speeds toward his face pressed against the plexiglass. It’s a wistful display of a bygone time but, modern boy though he is, the old fashioned train still holds charm.

***

My older brother had a train table growing up: handmade, wood, painted a mossy green. Tracks laid down across the entire span, chin level to my 8-year-old peering eyes. I remember a tunnel, trains traversing through a plastic snow topped mountain pass. The contraption took up most of his large bedroom, meant to be a downstairs family room or den. There was an opening in the middle. We’d climb under and pop up in the center as if underground moles. He conducted the whole display, detailed greenery sprouting on the landscape. I’d watch in wonder as the trains sped by.

***

My grandfather had a train computer game he liked to play. When we’d visit his tidy rambler in a well-to-do suburb in the early 2000’s we’d sit in his den, this octogenarian navigating down the pixelated tracks on his desktop monitor, clicking keys to make the trains whistle and stop. It wasn’t the most entertaining way to spend our time with this beloved elder of the family, but we indulged him and his enthusiasm for the simple program. He took computer lessons in his last decade of life, he traveled the world, he went sky diving when he turned 80, showing up on my parents’ front porch proudly wearing a t-shirt and holding a VHS tape record of the tandem free fall as proof. He must’ve always loved trains too. I like to picture him as a little boy, nose pressed to the glass at Christmastime, as a teen piecing together the intricate parts of a model train, placing the finished product triumphantly on winding tracks.

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Narrative Medicine

Narrative Medicine Monday: To Seize, To Grasp

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Writer Heather Kirn Lanier describes her daughter’s seizures in “To Seize, To Grasp.” Lanier begins the flash essay outlining her infant daughter’s first seizure: “not the worst one, although it brought the biggest shock.” Lanier relays what it’s like to be thrust into the medical world and terminology of a new diagnosis: “New traumas gift new glossaries. Words become boxes into which you can pack the pain.” She achingly describes the pain of watching her child seize, unable to do anything but wait: “But of course he could only do what I could do, which was inject medicine and wait.” Lanier closes the piece with her daughter’s worst seizure, which was not the longest. What was it that made this last one so frightening for Lanier? Can you relate to grasping onto that which can be lost at any second?

Writing Prompt: Have you been suddenly thrust into the medical world because of your own illness or a loved one’s diagnosis? What was it like to learn a new vocabulary and way of interacting with the medical system? What did you find most challenging or surprising? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Air Hunger

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The narrator visits her mother in the hospital in “Air Hunger,” a striking short essay found in University of Virginia’s narrative medicine journal Hospital Drive. 

Two months have passed since she last saw her mother, but in the interim the narrator notes her mother has “become a patient.” The details the writer shares give us a glimpse into how her mother’s illness has changed her over time. Her mother barely touches the lunch tray beside her hospital bed: “She picks at her food, but it’s air that she’s hungry for.” The narrator wants to ask her mom how she feels, but already knows the answer: “I can see what I see, I can hear what I hear.”

Writing Prompt: Have you witnessed a loved one’s deterioration of health over time? What was it like to see them in one light and weeks or months later note a dramatic change? Do you remember a moment when they became, either to themselves, to you or to others, “a patient?” Write for 10 minutes. 

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Narrative Medicine

Narrative Medicine Monday: The Last Heartbeat

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Cortney Davis’ “The Last Heartbeat” explores her competing identities as daughter and nurse at her dying mother’s bedside. Davis opens the poem as she holds her mother’s hand, counting her last heartbeats, witnessing her last breath. She ends with greater questions of life and soul as she walks with a friend through a cemetery.

Writing Prompt: If you’ve been at the bedside of a loved one as they died, what do you remember most? What have you forgotten? What about at the bedside of a terminal patient? Did this experience prompt greater questions about the soul? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: What You Don’t Know

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Today’s Narrative Medicine Monday is a bit different in that I’m posting an excerpt from a radio show rather than a sample of poetry or prose. Stories of medicine, health and illness are found in all types of art, including written form, oral stories, music and visual mediums.

This American Life is a prolific radio show that covers widely varied topics in a heartfelt, honest and often humorous way. Each show has a theme and this past week’s episode was titled “In Defense of Ignorance.” In the first act, “What You Don’t Know,” writer and producer Lulu Wang tells her family story of deciding to keep test results of the most dire news from her grandmother. Her family’s Chinese heritage influences the stance they take in keeping her grandmother in the dark about her terminal diagnosis. Wang, raised mostly in America and very close to her grandmother, doesn’t agree with this position but, at her family’s request, complies. 

Wang’s family story brings up issues of bioethics, cultural norms and how bad news affects health and illness. How might cultural norms influence the very standards of bioethics in a particular case? Do you agree with the family decision to keep the grandmother in the dark about her terminal diagnosis? Why or why not? Do you think her grandmother actually knew all along? Spoiler alert: Do you think not telling Wang’s grandmother contributed to her surviving despite her dire diagnosis? Wang mentions the Chinese belief of the connection between the mind and body. What are your thoughts on this connection?

Writing Prompt: Think about your own family dynamics and cultural norms. How do you think this has shaped your own views on health and illness? Can you think of a time this construct specifically influenced your medical decision making? Alternatively, think about the connection between the mind and body. Do you think one influences the other? How? If you had a terminal diagnosis, would you want to know? Why or why not? Write for ten minutes. 

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