Perspective
Caring for Lucy
By Therese Zink, M.D., M.P.H.
A girl’s blindness is a red herring for the larger issues affecting her.
After two quick taps on the door, I enter the exam room. It’s a Saturday afternoon at the urgent care clinic, where as the on-call doc, I cover 12-hour shifts on the weekends. A young girl wearing yellow shorts and a striped top is perched on a red plastic chair waiting for me; she chews on her nails. Her mother sits beside her on a too-small chair. Her dark hair is combed but greasy, and her clothes are clean but worn. She smiles when I greet them; her teeth need work.
“How can I help you?” I ask and take a seat next to them at the computer. Another hour and I can head home and get back to planting my vegetable garden, I think to myself.
Lucy (names of patients and identifying information have been altered) stares at her shorts, then looks up at me through a fringe of dark bangs, her green eyes startling against her olive-tinged skin. “Sometimes I can’t see,” she says.
Her mother starts, “It’s been going on for about a month. I wanted to make an appointment with her doctor, but they said she left the clinic.” This helps explain why they’re at urgent care, rather than the clinic that serves this city of 80,000 and the surrounding rural area. I pull up Lucy’s medical record on the computer screen. No labs, no past visits to guide me. My mind races ahead cataloguing the concerns of nausea and vision complaints: diabetes, brain tumor, head injury … what else?
I pat the exam table. “Lucy, climb up here.”
Lucy does not hesitate. She remains stoical as I examine her eyes and tell her to “follow the light” with the fundoscope, which she does without a problem. I cover one wary eye and ask her to count my fingers; she misses a few. I listen to her heart and lungs and palpate her abdomen. All fine. No bruises. I take special care with the neurologic exam. Lucy laughs when I ask her to smile, shut her eyes, and stick out her tongue. After walking heel to toe in her grubby tennis shoes, as if she were on a tight rope, she does a little twirl then sits down next to her mother. “All normal,” I say and probe for more history as my attention flips between Lucy and her mother. “Do your clothes fit the same? Has anyone hurt you? Do you have a bike? Have you fallen?”
Lucy inspects her nails or fingers the hem of her shorts as she answers my questions, “Yes … No … No …No.” Her mother catches my eye then gazes toward Lucy with concern.
“Are you afraid of anything? Anyone?” I ask.
Lucy examines her thumb and picks at the chipped pink polish. Her mother and I wait in silence. Then, still gazing at her lap, Lucy whispers, “Someone has a knife.” I lean in to hear her. “I am afraid of the knife.”
Her mother places her arm around Lucy’s shoulders. “My boyfriend Tom’s ex-wife lives in our complex. They have a 4-year-old kid who’s out of control, a biter and a kicker. The ex tells Lucy that Tom’s a mean man who will hurt her.”
I nod and look directly at Lucy. “Has Tom hurt you, Lucy?”
Lucy continues to stare at her lap, but shakes her head, her short hair flapping. My gut tells me that I’ve found the root of the problem, but I need to rule out the physical causes, which means more tests including reading the eye chart. I explain all this and ask if they have questions. “We’ll talk again after you’re through, OK?”
The mother nods her head. Lucy continues to scrutinize her fingernails.
I find the savviest nurse and ask her to have Lucy read the eye chart. “She may not cooperate, but see what you can find out.” The nurse smiles and nods; I have an ally.
Meanwhile, I see other patients with more straightforward problems: strep throat, a urinary tract infection, a broken finger, a bruised tailbone. In between each visit, I check for Lucy’s lab results. The nurse reports that Lucy intermittently recognized the letters on the eye chart, but identified the colors of the nurse’s smock, the numbers on her watch, and other items on the wall without a mistake.
I face the door to Lucy’s exam room, take a deep breath, tap twice and enter. Lucy’s two sisters and a family friend have joined them. I sit on the stool and show Lucy and her mother the reports, explaining that the lab tests are completely normal. “I’m concerned about your worries, Lucy,” I say. “They might be the cause of your symptoms.” Lucy stares past me, saying nothing. I ask the family friend to take Lucy and her sisters to the waiting room so that I can talk with her mother alone. Lucy slips off her chair and out the door, trailing behind her sisters and the friend. Her mother follows them out of the room with her eyes.
I review Lucy’s normal exam and the lab tests again and ask what her mother thinks. She picks at her cuticle, then clears her throat and murmurs, “I’m not surprised.”
I consider where to start. Will the mother be in denial about this boyfriend’s threats? Has he hurt her? Is she able to protect her child? “You have other children,” I say.
And her story begins. It is her and the three children, Lucy is the middle child. Tom does not live in the complex but comes over frequently to visit his child who lives down the hall. “I like the manager at the complex. She’s very helpful. Told me the smartest thing I did was not to let Tom move in with us. I hate to move, but I think it’s the only way to make Lucy feel safe and get Tom out of our lives.”
“Has Tom hurt you or the kids?” I ask.
She shakes her head emphatically and sighs. “I’ve been there, with Lucy’s dad.” I notice the worry lines in her 30-something forehead. “I left Lucy’s dad when she was just a baby. Stayed in the shelter with my two kids.” She knows about orders of protection and is aware of the local domestic violence shelter. “An order of protection will piss Tom off. It’d be easier to move.”
I imagine the hassle of moving three children: clothes, toys, and household items. As we talk, I feel myself sink into the filaments of a spider’s web. Tom has not hit her or the kids but he tells her that she spends too much money on food. “He says when we are together it’ll be different,” she mimics, setting her hand on her hip. “He’ll tell me what to buy, what to cook.” Her voice falters. I hand her a tissue. “I hate to move. It’s a good school system, and the teachers are tuned into Lucy’s needs. She’s had special tutoring.” As we talk, I visualize a moth caught in the sticky strands, struggling to fly out, her wings useless. She tells me about a therapist Lucy saw last year. “But it’s a long drive from where we live now, and gas is pricey.”
What can I offer her? “I think you’re smart not to get more involved with Tom,” I say, knowing how options are rarely clear cut. I listen, realizing this is taking a long time, but I know that my time is all I have to give her. Her caring and competence are evident; I sense her protective judgment about her kids. I tell her that she’s a good mother.
She is quiet for a moment and then says, “Not everyone agrees with you.”
My heart aches for her. If only I could prescribe a pill that fixes her problems, or cut them out like a diseased organ or a cyst and neatly suture the healthy tissue back together. Because they live in a rural county, fewer services are available to them than if they lived in the city. Luckily, they are eligible for Medicaid, which will pay the medical bills and for some counseling. I write down the name of the local food shelf, the hospital social worker, and other resources she has not thought of. “You are doing a good job, doing the best you can for the kids,” I say and hand her the paper with the names and phone numbers.
Lucy and her mother live far enough from my clinic that I will probably never see them again. Despite this, I will carry them both with me. Carry them and continue to care about them. Tonight, I will think about them while I plant green onions. And tomorrow, during my morning run, I will mull over their visit, pounding into the pavement what I could not do. I cannot remove this boyfriend from their lives. I cannot weave the safety net: find them low-income housing, create a good job for Lucy’s mother, connect them with competent child care, locate a good teacher for Lucy, and more. Medical school did not train me to solve the problems of poverty, violence, and rural and urban disparities.
Despite the pain of bearing witness, observing the moth struggling in the spider’s web, sitting by the wounded, there are gifts that come with my work. I see courage and despair in equal measures. Lucy’s mother struggles to care for her kids, her own needs for intimacy in conflict with her desire to create a safe home for herself and her children. I watch soberly and wonder if I would be capable of mustering the same courage.
Yes, the memory of Lucy and her mother will haunt me. I will pray for them, circle them with white light, and hope that Lucy can plant a different garden, one with more opportunities and less struggle than the one her mother tends. I will dream about this green-eyed girl, wonder how her life unfurls. Meeting her reminds me to examine what I don’t want to see in my own life; I draw lessons from what I witness: suffering, despair, compassion, redemption. We are all struggling. I may have more advantages and resources, but sometimes I am the moth caught in the spider’s web. As a fellow human being, there is a measure of guilt in doctoring; I receive more from my patients in humanity than I am ever able to give them. MM
Therese Zink is a professor in the department of family and community medicine at the University of Minnesota.