Light and Shadows: On Care and Loss

Sarah Roth //

It is Tuesday morning in Florida, and I guide my mother into the shower. I’m dancing around with towels and soaps and leaning against her red walker, which slides away from me. She is weeks into Hospice care, and years into experimental treatment for ovarian cancer. She closes her eyes and smiles as the water falls onto her hair. She loves the feeling of being lathered and warm. As the sun rises, light slants through the windows of her bathroom and onto the floor. When she is dressed, I wake up my father, and we help my mother to the car. She asks if we can go to the Wildflower Café after the appointment. We say, of course, and she reaches to hold my hand from the passenger seat. As we drive to the oncologist’s office, we talk about other things we can do: take the long way home, stop by the beach, and roll down the windows. We are still adding to the list when we arrive.  

My mother and I divide up her Hospice bags: two nondescript fanny packs holding morphine, liquids, and nutrition. Artifacts of the land of the critically ill, they are contraband here in the clinic. We drape them over our shoulders like purses. My father draws her cane from the car, and I hold onto her as we stand in the grass. The three of us walk to my mother’s final doctor’s appointment. 

For the last five years, my mother’s cancer has lived “at the cusp of clinic and sensation.” Since her diagnosis, discovered in the midst of a routine surgery, she has followed the rise and fall of disease through blood draws and imaging scans. Through CA-125 tests, she learned if tumors were lysing; radiology showed them as bright spots marking her belly. “Illness that never bothered to announce itself to the sense radiates in screen life,” Anne Boyer writes in The Undying. “Radiology turns a person made of feelings and flesh into a patient made of light and shadows.” My parents followed the data with cycles of chemotherapy, each one adding something newer and stranger to her regimen. In recent months, though, my mother’s most experimental treatment began to falter. First, her numbers rose. Then, symptoms began to show, appearing as slowness and weakness and pain. A blockage formed in the colon, and she was given an emergency surgery. Another blockage formed in her small intestine, and she was no longer allowed to eat. Accoutrements grew around her, bags and canes and broths. Her world constricted to the neighborhood, and then to the back porch, and then to the bed.  

When her pain became too much, Hospice entered the scene, with nurses and chaplains and pamphlets. They brought tests and logics of their own. They brought morphine. They explained that she can’t treat the cancer anymore. “Qua-li-ty-of-life,” they said. 

She ushers my sister and I close and whispers to us. 

“Don’t tell them the truth,” she says. “That I’m going to keep fighting.”    

For weeks, we are in a limbo. We sit on the back porch, reading as she rests in a recliner. It is springtime, and the backyard is alive with blue jays. She receives care from Hospice, and, as they increase her morphine dosage, she begins to move in and out of sleep. At first it is subtle, a quick dream interrupting a conversation. Soon, the medication creeps into her language, her expressions, and her grip on the day and night. She begins to have visions of birds in the kitchen, nuts piling up at her feet. 

Still, she persists. 

“We’re using Hospice for the pain,” she assures us. “We’ll let them go at the right time.” 

She keeps down Pedialyte until she can’t any longer. She is given IV nutrition. The bags of liquid stack on a shelf in the refrigerator. Hospice lowers her nutrition to the bare minimum, and then to less than the minimum, and they raise her dosage. Meanwhile, she becomes smaller and smaller. Every day, I bring home a new kind of popsicle. 

The Hospice team allows us to slip out the door and drive to the appointment. My mother has made herself beautiful and alive. She has painted her lips red. She has asked me to blow-dry her hair. She has wrapped herself in an oversized sweater. As we enter the clinic, she turns to me, back straight. “How do I look?” she asks. 

“Remarkably well,” I say. 

My mother’s doctor is a lean man in his fifties with a lilting voice. He wears a skinny tie under his short white coat. He moves around the clinical exam room for several minutes. He washes his hands and leafs through my mother’s file before sitting down. When he finally settles, he sits across from us, facing us as we three sit in chairs reserved for family of patients. He appears startled to see how thin she has become; a tremor passes through him when he looks at her. So you want to continue treatment, he says, sweetly. He wants to know why she isn’t getting the nutrition she needs, and why her potassium levels are so low. As he speaks, my mother looks at him with intensity. She nods along, and I think she is about to speak. But as she opens her mouth, morphine and exhaustion sneak into her expression. She turns inward. Her eyes begin to drop, and I feel her weight against my side. 

Skinny Minnie,” he says. “Who is responsible for this?” 

My mother, who always has something to say, is silent.

The moment that passes is quick but heavy. The doctor turns to my father, kneading his chin with his fingers, and then to me. My father murmurs that she is doing palliative now. I whisper that Hospice is starving her, looking him in the eye. I wish I could dive into this moment, stop it, feel it, and twist it in the air like a knife. I want her to wake up, to say something. To say, I’m here because I want more treatment

“You’re just too skinny,” he says, reaching for her hand. “I don’t want to be the one to kill you.” 

No. I feel a heat in my chest, a static hum in my ears. 

“This is the last thing I want to say,” he says. “I’ve talked with my wife about this and this is the last thing I want to say.” His eyes fill with tears. He leans towards my mother, looking at his feet, at his knees, up to her. She inclines toward him, a dreamy expression on her face. 

“No more treatment,” he says.  

The doctor is the first to leave the room, and then my father. Then it is just us, my mother and I, alone in the quiet exam room. The sounds of the corridor outside are in another world. She startles when I place my hand on her shoulder, waking up, and I help her stand. I pick up one fanny pack, and then the other. She walks to the sink, extends a hand to a Purell bottle, and then hesitates. 

“It doesn’t matter,” she says.

As we walk through the waiting room, the women in their seats edge away from us, hold their breath. They avert their eyes, as if they are frightened by the realness and nearness of death. 

*

Back in the car, we take the long way home. When we pass the water’s edge of the causeway, though, the café and the view of the water, my mother is asleep again. My father is silent. From the backseat, I hold onto her hand.  

*

In the months that follow, I often think of this morning. It is one moment among many in the long, full, and final week of my mother’s life. But it lingers with me, an instance in which everything that care has been—sustenance, matter, and trust in numbers—turns. When, in the summer, I pursue exploratory research for my dissertation, I do not search for grief as an object of study, but it finds me as I navigate the crosshairs of loss. I find myself turning to ethnography and poetry that revolves around the untimely death of a loved one, telling it recursively through a cast of revolving voices. And memoir of loss given voice from the perspective of a woman’s child, at once removed and bound up in the mother’s treatment. Meanwhile, memories of this time continue to emerge, and they mingle with my observations in fieldnotes and journals. Where can I find the words to express a complex sense of care and loss, enmeshed at this moment of turning? In this series, “Light and Shadows,” I will explore this question, through my home disciplines—anthropology and literature—and through the texture of memories that emerge, unbidden, in flashes. 

Works Cited

Boyer, Anne. The Undying. New York: Farrar, Strous, and Giroux, 2019. 

Rieff, David. Swimming in a Sea of Death. New York: Simon and Schuster, 2008. 

Rosaldo, Renato. The Day of Shelly’s Death: The Poetry and Ethnography of Grief. Durham and London: Duke University Press, 2013.

Image Credit

“A young nun digging a grave while another nun sits nearby.” Process print after J.E. Millais, 1858-1859. Wellcome Collection.

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