illness – Page 2

Narrative Medicine Monday: The Narrative Messiness of Chronic Illness

October 1, 2018 No Comments

Ellen O’Connell Whittet ponders “The Narrative Messiness of Chronic Illness” in a recent piece in Ploughshares. O’Connell Whittet acknowledges that illness narratives may be challenging to show in scene and that “suffering… doesn’t always have a satisfactory ending.” Yet, she notes that illness memoirs, such as those of Paul Kalanithi, Lucy Grealy, Jean-Dominique Bauby and Porochista Khakpour can be particularly engaging, “turning the story of an ailing body into a work of art.”

Bauby, who suffers from “locked-in syndrome,” tells a grueling story without a tidy ending. O’Connell Whittet grimly concludes one tragedy of his chronic illness narrative is that he “cannot… count on getting well.”

O’Connell Whittet recognizes the importance of defining a diagnosis to Porochista Khakpour in her memoir “Sick.” When Khakpour “laments to her acupuncturist that she is still without a diagnosis, her acupuncturist asks, ‘does it need a name?’ But without a name, Khakpour cannot pinpoint the words she needs to convince us, or herself, of the extent of her suffering.” How important to suffering are the words we use to define illness? Does having a specific diagnosis validate that suffering, to ourselves or to others, in a different way?

O’Connell Whittet recognizes “Khakpour’s refusal to give us order out of illness’s chaos” and eventually determines that “[r]eading accounts of chronic illness allows us to embrace the ambiguity of the body and our experiences within it.”

Writing Prompt: Have you read a chronic illness memoir that turned a “story of an ailing body into a work of art?” Think about a particular part of that book or essay that was most enthralling or enlightening. What did you learn? How did it affect you? Did the structure mimic “illness’s chaos?” Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: The Game of Catch

May 7, 2018 No Comments

Noah Stetzer’s poem “The Game of Catch” is featured in the current issue of the Bellev ue Literary Review as well on Poetry Daily. Stetzer begins by describing an “idyllic” game of catch, then expands his narrative, including idioms and phrases the word catch might conjure up.

As the poem progresses it becomes more intimate, more ominous, a recounting of Stetzer’s own story of “catching” from another: “in my voice, catch my breath, no-it’s when small blue flame/ignites kindling; the kind of catch that’s alone in itself the thing/one avoids…” Stetzer guides the reader through his own experience of catching an illness that, though “unexpected,” also seemed “inevitable” and ultimately leaves us with the idea that this is a game we all play.

Writing Prompt: Take another word commonly used in medicine: treat, contract, mass, inject. Think of all the other ways this word is used, in idioms or otherwise. What is surprising or illustrative about the words we use in illness and health? Alternatively, think of a time you “caught” a disease from another person. Maybe it was a stranger or someone you knew intimately. Did you feel, as Stetzer did, that it was “unexpected” but also “inevitable?” Write for 10 minutes.

Ramblings

Rhythm

April 13, 2018 No Comments

I’ve been out of step, out of commission the past few weeks. I was incredibly ill over Easter weekend, had to cancel family events and it took my body a week to recover. I also was preoccupied with taking the medical board exam this week, a once in a decade test to maintain my license. My usual pattern of writing and blogging fell out of rhythm for the first time in two years.

I’m hoping to refocus, regain some footing now that I have other distractions behind me. Writing is essential to my life, my own self-care and purpose. I’ve been thinking a lot about rhythms of life, what is nourishing and essential, how different stages can be taxing in familiar ways.

Each month this year I’ve focused on a different area of personal growth. April is dedicated to the Sabbath, that sacred space of rest. I’ve always struggled with the concept of Sabbath and today’s nonstop rush of a world feeds into my tendency of devotion to productivity, to my To Do List, to my ambitions. I’m reading Wayne Muller’s “Sabbath“, which is a call to incorporating a rhythm of rest.

This may seem contrary to what I just wrote, about needing to re-establish my focus on writing, on my rigid rhythms. But I don’t think they’re actually incongruous, this need for structure, this necessity of rest. I want to avoid being legalistic about my schedule, but I also find comfort in boundaries, in a steady rhythm. Life brings so much unexpected upheaval. I don’t think it’s disingenuous to find peace in a plan that provides structure, that carves out time for that which is nourishing, which is restful.

What are your thoughts on rest? What rhythms of life do you find helpful or limiting? I will continue to explore this idea of Sabbath, but also return to my rhythms of writing in the hope that I’ll find peace both in learning to rest and in work that brings me fulfillment.

Narrative Medicine

Narrative Medicine Monday: Of Mothers and Monkeys

February 19, 2018 No Comments

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.

Narrative Medicine

Narrative Medicine Monday: Order

January 22, 2018 No Comments

Writer and nurse Catherine Klatzer organizes it all in her poem “Order.” I like that it is written in second person, puts the reader in the space of the patient who is “so civilized / so well-behaved.” I can relate to the narrator, finding comfort in gathering forms and ensuring everything is in order, even in documenting the pain. I can sense the absurd tension in deciding if the papers should be sequenced in chronological or reverse chronological order. The poem hints that there is a kind of respite, however ill-conceived, in controlling what we can control even when there exists an “an impossible rupture.”

Writing Prompt: Have you ever felt that “something is tearing, ripping open” yet you moved forward with assembling order to your life, to your medical records? How is ordering what is tangible helpful when we are bombarded by the chaos of illness? Alternatively, consider medical records. If you’re a provider, what is different about working with electronic records versus paper charts? As a patient, how do you compile your medical records? Are they neat and organized? Is there a sense of confusion or comfort when you read them? Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: Air Hunger

October 30, 2017 No Comments

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.

Narrative Medicine

Narrative Medicine Monday: Wernicke-Korsakoff

August 14, 2017 No Comments

Poet and medical student Sarah Shirley describes an evolving interaction with a patient in “Wernicke-Korsakoff.” The patient initially finds complaint with everything: “the too soft too hard bed, the lunch that came with only one spoon though clearly two spoons were required.” Shirley struggles to connect with the disgruntled patient, who clearly wants nothing to do with her as an intrusive medical student.

Throughout my medical training and career I’ve encountered patients, like in “Wernicke-Korsakoff,” where “everything is thrown back.” They were angry at their disease, angry at the medical providers, angry at the system, angry at the world. At times, I’ve been one of those patients myself. There’s no doubt health and illness affect our mood. Many of those who are suffering build a shell to cocoon themselves off from the damaging world. Often they are rightfully skeptical of a medical system that has many failings. Shirley finally breaks through to her patient in the end, after searching for the right connecting point.

Writing Prompt: Think about a time you were sick. How did being ill affect your mood and interactions with others? Were you inclined to cling to others for support or did you find yourself “raging against the world?” Perhaps you experienced both. What about a time when you were caring for someone who was sick? Did they allow you to connect with them right away or was it a struggle? Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: An Expert in Fear

July 24, 2017 No Comments

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.

Narrative Medicine

Narrative Medicine Monday: How We Wrestle Is Who We Are

May 15, 2017 No Comments

Writer Brian Doyle’s son is unexpectedly born with a heart defect. Doyle reflects, a decade later, about his memory of this diagnosis and subsequent surgeries in “How We Wrestle Is Who We Are.” He describes the heartbreaking clarity of that time, “thinking that his operations would either work or not and he would either live or die.” Faced with the potentially catastrophic outcomes of the situation, Doyle also asks himself some difficult, honest, heartrending questions. Do you agree with Doyle’s assertion that “what we want to be is never what we are?”

Writing Prompt: Consider a time when a loved one or patient was gravely ill. What thoughts and questions did you wrestle with? Consider writing a letter, as if to a friend or to yourself, about your struggle. Write for 10 minutes.

Narrative Medicine

Narrative Medicine Monday: Reprieve

April 3, 2017 No Comments

In his poem “Reprieve,” Jeffrey Harrison writes about the several months following a cancerous brain tumor removal. Everyone is able to take a breath while the patient resumes his daily activities. Although it seemed “a miracle almost,” they “all still wondered how long it would last.” The narrator questions if this time period felt like an “afterlife” to the patient. I like how the narrator lists the simple daily tasks the patient was able to resume, giving us a glimpse into his life and what he had been missing because his illness.

Have you or a loved one had a serious illness that, for a time, seemed resolved? How did you feel when the treatment worked? If the illness recurred, how did you look back on that time period?

Writing prompt: Think about a time when you, a patient or a loved one was well following a serious illness. Were you able to trust in that period of wellness? Were you always wondering if the illness might come back? If so, how did that undercurrent of worry limit you? How did it feel to grow strong again or resume your daily activities? Write for 10 minutes.