Caitlin Kuehn’s essay “Of Mothers and Monkeys” draws parallels between her research work with macaque monkeys and her mother receiving treatment for breast cancer in the same hospital. As her mother starts chemotherapy, Kuehn “rotate[s] between the animal ward and the human ward.”
Kuehn wrestles with the ethical ambiguity faced in animal research. Thinking of her own mother’s reaction to chemotherapy, she darts off to her work in the research lab, wondering “what animal first shared with my mother that sudden fear of a throat closing in… I realize that I—as a student, with very little power but a whole lot of responsibility—am complicit in a moral choice I have still not taken the time to make. Some days it is hard to remind myself that medical research has a purpose. Some days it is as clear as cancer. Some days I just do not know.”
When Kuehn’s mother needs injections to help boost her immune system after suffering from a serious sepsis infection, though Kuehn “could do a subcutaneous injection in the dark,” she becomes “shatteringly nervous” whenever she has to give her mother injections; the familiar activity takes on a different tone.
Kuehn’s mother begins to rely on her to answer medical questions, but Kuehn’s scientific expertise is limited to “what I have learned in my undergraduate science classes, or here at the lab. All of it applicable only to non-human mammals, or else too theoretical to be of any use for as intimate a need as this. I have no good answers.” I was struck by the fact that often, even for those of us who have extensive medical knowledge and training, we still lack “good answers” to those questions posed by suffering loved ones.
Kuehn has a strong reaction when her mother declares that she’s fighting her cancer for Kuehn and her sister: “She’s pushed her will to persevere off onto my sister and me. It’s too much pressure to be somebody else’s reason.” Have you ever been somebody else’s reason for fighting for survival? Did you have the same reaction as Kuehn to that kind of pressure?
Writing Prompt: At one point Kuehn responds to Domingo’s convulsions in the same comforting way she does when her own mother’s throat begins to swell during her chemotherapy: You’re going to be okay. When a patient or loved one has been faced with a particularly challenging moment of illness, is there a mantra you’ve repeated to them? To yourself? Did it help? Write about the situation. Alternatively, reflect on Kuehn’s statement that “death is a condition of life.” Write for 10 minutes.
In Cheryl Strayed’s essay “Heroin/e” she writes about our ways of facing death, dying, grief and the will to live. Strayed loses her mother to cancer and suffers her own descent into addiction. Strayed’s love for her mother is evident and the loss she feels is acute. When her mother first learns of her diagnosis, Strayed recounts them silently entering the restroom, “Each of us locked in separate stalls, weeping. We didn’t say a word.” Strayed describes the numbing of pain and the warping of time for each of them: “The days of my mother’s death, the morphine days, and those that followed, the heroin days, lasted only weeks, months–but each day was an eternity, one stacked up on the other, a cold clarity inside of a deep haze.”
Writing Prompt: What does it feel like, in a physical sense, to suffer from addiction? From grief? Do you think addiction and grief are linked? Why or why not? Think of your own experience or a time you’ve witnessed this in a patient. Write for 10 minutes.
Emma Barnard is a visual artist and researcher focusing on fine art and medicine. Her latest installment, “Primum Non Nocere,” reflects the patient experience. Barnard’s work is influenced by her own interactions with the medical world as a patient and her research into this arena, including Michel Foucault’s term ‘medical gaze,’ used to “denote the dehumanizing medical separation of the patient’s body from the patient’s person or identity.”
I’m interested in Barnard’s method of creating art, where she follows a patient into the exam room and questions them right after, producing a drawing based on their response. She notes that many of the physicians are surprised at the resulting artwork: “During the consultation process patients show little emotion; it’s quite difficult to read how they really feel about the impact of the words spoken during the clinical encounter.”
Barnard also incorporates the physician and surgeon perspectives. Could you relate to her images of a physician’s experience in a busy clinic practice? I could certainly identify with the depiction of others superseding the “self” and various demands of work and home life feeling compartmentalized. Do you agree with the neurosurgeons’ statement that as physicians we view a division between us and patients and that we have to understand this alienation “if we are to find ways to soothe it and become connected to our patients and to the essence of medicine?”
Writing Prompt: As a patient, have you ever experienced Foucault’s ‘medical gaze,’ where you perceived a provider as seeing you only as a body, rather than recognizing your personhood? What did that feel like? As a medical provider, have you ever caught yourself interacting this way with a patient? How can we work to overcome this tendency? Write for 10 minutes.
Student and poet Thomas Nguyen writes of memories and loss in “Erasure.” In his poem Nguyen is instructional, warning how time affects our connection to those we’ve lost: “Accept that time makes things distant, that his absence doesn’t bleed into your memories as much as it used to.” There are only a few significant people in my life who have died, but I can identify with Nguyen who needs to try “harder and harder to remember the last time” he saw his mentor.
Nguyen notes that the patient speaks of his melaonmas as if they were part of his garden: “My dermatologist taught me how to care for them.” Nguyen goes on to contrast this with the green moss on the windows of his home. Do you agree with Nguyen that “life always adds?” Do you find this contention comforting or suffocating, or both?
Writing Prompt: Have you spent time with a loved one or patient who was nearing death? If time has passed, how have your memories of this person been affected? Recall the last time you saw them. Outline the details, like Nguyen’s memory of “neatly-pressed khakis.” Write for 10 minutes.
In “The Permanent,” Amy Burke Valeras takes us back to the 1980s when perming your hair was a thing. In the first half of the poem, Valeras opens up about her struggle with her hair; I could relate. I similarly begged for an ill-advised perm the same year, the same age as the author. I like how Valeras makes her hair a central character of the poem. We battle along with her preteen self as she tries to tame the “frizzy poof.” We can understand when, two decades later, she is told she has cancer but all she can think of is: “My hair!”
Writing Prompt: Think of an every day aspect of your life, of your body, that you took for granted or had a different relationship with until you became ill. Consider level of energy during a bout with the flu, walking with a sprained ankle; maybe you have lost your hair to chemotherapy or a breast to invasive cancer. Write about your relationship with this aspect of your body before you became ill and after. How did things change? Write for 10 minutes.
Author Susan Gubar writes about cancer making her “An Expert in Fear” in her timely essay. She asserts that this anxiety has become more acute in the recent political climate, with debates about major changes to healthcare, Medicaid and insurance coverage in the forefront of our national discourse.
Gubar contends that cancer fears fuel other fears and that cancer patients become “experts in fear.” If you’ve dealt with cancer, has this been your experience? She also highlights the detrimental impact fear can have on our health, and that severe financial distress has been found to be a risk factor for mortality in cancer patients. Gubar feels there is no appropriate word for the dread she experiences today. It is a “fear of fear spiraling into vortexes of stunning trepidation” and has, in fact, become all-pervasive and metastatic.
Writing Prompt: What fears do you harbor related to health and illness? Have you found that the political climate impacts that anxiety? Do you agree with Gubar that fear is pervasive in today’s world? 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.
Allie Gips’ striking poem “Thanksgiving Dinner” profiles her grandparents as they suffer from dementia and recurrent cancer. Gips writes that there is “there is a forgetting that is wrenching and then there is a forgetting that must seem like some kind of forgiveness”. Gips expresses sadness watching her grandfather relive the disappointment at finding the sparkling cider bottle empty again and again. This simple act of recurrent forgetting serves as a rending reminder of the cost of his illness to family gathered at the Thanksgiving dinner table.
Writing Prompt: Have you witnessed someone suffer the effects of dementia? Think of a particular incident, like Gips’ empty bottle, that struck a chord with you, illustrating the defecits. Write for 10 minutes.