A writer reflects on her own mother’s experience with death and dying and argues for the greater recognition of palliative care in the clinical encounter.
Read moreWhat’s the Right Way to Die? And Where? A reflection by poet Kathryn Paul
Can we decide where we should die? A writer and former caregiver reflects on offering comfort during one’s final moments.
Read moreMothers and Daughters: A Reflection on Cancer, Caring and Seeing the Whole Picture by poet Kathryn Paul
—After ‘Macroscopic” by Adela Wu (Spring 2021 Intima)
My mother and I were not close. I knew she wanted us to be, but I couldn’t do it her way. For most of my adult life, I kept my distance, emotionally and physically. We lived on opposite sides of the continent. In her 80’s, the creeping dementia my mother never discussed was overtaken by a cruel and much more terrifying diagnosis: Stage IV ovarian cancer.
Aided by her cancer-free twin sister, Mom endured multiple surgeries and two lengthy and debilitating rounds of chemo. Each time, her cancer came roaring back within weeks. Her surgeon suggested an experimental Round Three. Mercifully, her oncologist suggested hospice at home instead.
During the first year of Mom’s illness, I was trapped by my own cancer treatment, unable to participate in her care. I called daily, spoke with her, spoke with my aunt, asked about her pain, her “tummy trouble,” her ascites, and her white count. I took notes and dictated the questions to ask at her next appointment.
As soon as my doctors cleared me to visit her, I did. I was always on the verge of moving in with her, but never quite needed to do so. I flew back and forth. The more debilitated she became—by her cancer and her dementia—the more often I visited.
Adela Wu’s Studio Art piece “Macroscopic” simply and eloquently captures the changes in how I experienced my mother during those last months and weeks. The simplest things gave her joy: A small dish of ice cream. A pain-free nap on the down-stuffed cushions of her couch. Cuddles with her cats. A bird visiting the feeder outside her window.
Even as her disease spread through her body, even as she faded, my mom seemed to crystallize. She became, ultimately, the Essence of herself. And—just at the end—I finally saw her.
Kathryn Paul
Photo by Andrew Givhan
Kathryn Paul (Kathy) is a survivor of many things, including cancer and downsizing. Her poems have appeared in Rogue Agent, Hospital Drive, The Ekphrastic Review, Lunch Ticket, Stirring: A Literary Collection, Pictures of Poets and Poets Unite! The LiTFUSE @10 Anthology. Her poem “Dementia Waltz” appears in the Spring 2021 Intima.
The Practice of Prolonging Death, a reflection by palliative care physician Chris Schifeling
“Would we rather die too soon or too late?”
The taboo of talking about death combined with a faith in the insomnia of medical technology leads many to err far on the side of dying too late.
Read moreRemembering Fathers: Raspberry Picking, the Silence of Roses, and Taking a Breath: A reflection on two poems by Mark Hammerschick
Memory serves as an anchor in our lives, those brief, isolated moments of awe create a sense of warmth, safety, comfort.
Read moreBe Patient, Listen to your Patient: A Reflection on the Difficulties of Describing a Disease by Suzanne Edison
Suzanne Edison MA, MFA, writes most often about the intersection of illness, healing, medicine and art. She has a child living with Juvenile Myositis. Her chapbook, The Moth Eaten World, was published by Finishing Line Press. Her poem "The Body Lives Its Undoing" appears in the Spring 2018 Intima.
In Rachel Betesh’s poem “Admission Assessment” that appeared in the Fall 2014 Intima, the doctor observes a patient, finding the words to describe both his condition and her understanding of his experiences. She listens well, using precise language. Her first observation is visual, she sees his posture, but almost immediately that awareness is paired with hearing his breathing. She says:
so measured these breaths break: shallow
like rainwater with nowhere to settle:
he parcels air; he can’t give it away.
Breath as a parcel, a package that can’t be given away. Breath is precious and difficult simultaneously. As a reader I am pulled into a field of empathy; the doctor trying to understand her experience of the man. She listens acutely to his “ragged song of breathing.” and “the natural sweetness of the body / reduced to laboring: an immeasurable effort,…”
The doctor listens to what is being said as well as what is not being said. She hears his breathing and his words. He “cradles” his hand, the size of a grapefruit, and says, “now it’s everyplace, / and the air seeps and sings out, out without measure.”
She thinks his words are the most salient reason for hospitalization and should be in her assessment: “now it’s everyplace.”
The doctor is aware that not everything can be seen, that this hand is the most visible aspect of his cancer; but she knows it is in his kidneys as well.
I am reminded of William Osler’s words of wisdom to his medical students at Johns Hopkins, “Listen to your patient, he is telling you the diagnosis.”
What can’t be seen is often true in autoimmune diseases as well. Listening to a patient describe the experience of his or her body might help a doctor find a diagnosis, but not always. My poem, “The Body Lives Its Undoing” (Spring 2018), speaks to this experience. Initially I use the words koyaanisqatsi and uggianaqtu from Native people’s languages that speak directly to a “life out of balance,” to the body “behaving strangely.” Then, I try to enact the feelings of the patient through the sounds of words: cawing, cacophony, clattering; hard ‘c’ sounds that cut, which lead to the image of chaos.
How to let others know the internal feeling of an autoimmune disease. Not only the sounds of feelings, but in images such as “cascading through flames / joints and muscles dragging like a loose muffler on asphalt” that try to portray the feelings of exhaustion and inflammation that come with most autoimmune diseases.
The patient in my poem wants to find balance, knows she is “listing” in a “turbulent sea” with disease, but wants to navigate it with “…my hand on the tiller.”
Listening with eyes, ears and an open heart and mind is what most patients want and need, even if there is no definitive diagnosis, treatment or cure. Hearing their words and giving attention creates empathy, which goes a long way towards healing and helps the patient deal with the ups and downs of a disease.
Suzanne Edison MA, MFA, writes most often about the intersection of illness, healing, medicine and art. She has a child living with Juvenile Myositis. Her chapbook, The Moth Eaten World, was published by Finishing Line Press. She has been awarded grants from Artist Trust; Seattle City Artists, and 4Culture of King County, Seattle. Poems are forthcoming in About Place Journal; Other poetry can be found in: JAMA; SWWIM; What Rough Beast; Bombay Gin; The Naugatuck River Review; The Ekphrastic Review; and in several anthologies including The Healing Art of Writing, Volume One. She is a board member of the Cure JM Foundation and teaches writing workshops at Seattle Children’s Hospital and Richard Hugo House in Seattle. www.seedison.com. Her poem "The Body Lives Its Undoing" appears in the Spring 2018 Intima.