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.
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.
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.
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.
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.
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.
As I struggle with how best to respond to recent events, one thing has become clear to me: narrative matters. People’s stories matter. Words and how they are presented in written and spoken form matter. I am just a mother, just a doctor, just a writer. My daily life consists of changing diapers, getting my kids to school, managing diabetes in my patients, picking up scattered toys, treating depression, doing laundry, writing blog posts, weathering tantrums, listening to the news. It’s mundane. It’s commonplace. It feels insignificant beyond my family, beyond my little corner of the world. But recently I’m seized by the enormity of the need to respond, of the urgency to do something. It feels as if we’re ushering in one of those times: a time that tests our resolve, our character, our unity, our faith. What can one person do?
I remind myself: I am a mother, I am a doctor, I am a writer. I am a citizen of this nation and of this world. My words matter. My stories matter. My voice matters. And so does yours. This is what the world needs: our stories. I am the daughter of an immigrant and a person who welcomed a young Iraqi refugee family into her home. This family, made up of brave, intelligent, hardworking people, left behind what remained of their home, of their family and friends to come here to build a better life for their children. Their story matters. And if you sat with this father, who wants to pursue graduate level studies in the U.S., who cares about what food he eats and laughs easily and plays soccer on a grassy park lawn on a summer day with his son, maybe his story would change your perspective and mitigate your fear.
So we must start here, with our stories. Share your story. Listen to one another. Narrative is needed to break down walls and build bridges of empathy; stories are required to combat fear and xenophobia. Words matter. Truth matters. Listen to words, discern truth, share stories. This is the antidote to being paralyzed by indifference, it is the cure to saturation with propaganda, it is the remedy to “alternative facts.” Narrative is the answer to the call of such a time as this.
When rotating through the Intensive Care Unit in medical school or residency, one of the most significant skills learned, in addition to adjusting mechanical ventilation settings and how to run a code, is how to conduct a “family conference”. This is where loved ones, preferably including the patient’s designated medical decision proxy, gather to discuss the patient’s status, prognosis and treatment plan. As these patients are severely, sometimes suddenly, ill, these can be very challenging conversations.
In “Family Summons” Amy Cowan illustrates how she was surprised to have a patient’s family gather in the middle of the night, wanting to speak with her as their family patriarch’s physician. Her piece highlights how important it is to listen and extract the true identity of the patient, the life they lived beyond the ICU. Establishing this portrait can help inform the care team as well as free the family members to make decisions in line with what their loved one would want.
Writing Prompt: Have you ever attended or conducted an important medical family conference? How was it run? If not, can you imagine what questions you might ask to best get to know the patient? Think about if you were the patient in the ICU; who would you want to gather on your behalf and what might they say when asked about you and your life, what’s important to you? Write for ten minutes.