By Elizabeth Toll, MD
I was surprised to find only seven visits in the record, given Aloys’s place in my consciousness. He became my patient in October 2018, a newly arrived refugee scheduled to begin the screenings, immunizations, and medical exam required to obtain a green card for legal permanent residency in the United States. His Department of State medical records described an accident at age twenty-four, with resulting facial and leg wounds, tobacco use of four cigarettes daily, “heavy alcohol use,” including several unsuccessful inpatient and outpatient rehabilitations, and mental illness. I didn’t know what to expect.
As with all new refugee patients, I scheduled extra time for the visit, creating an opportunity to ask about his life history before addressing medical concerns. The simple act of listening conveys respect and interest in this patient as a person. Refugees offer different levels of detail. Over time, the story deepens.
I recall Aloys’s first visit clearly. His eyes had the empty, distant look of those who have witnessed war firsthand. But there was something more. He seemed to lack emotion. I felt I was sitting with the hollowed -out shell of a human being devoid of human contact, love, and the shared experiences of life. Was this carapace tough or brittle, or perhaps both? “I am so alone,” he stated. “For most of my life I have had no one but myself.” Aloys had a way of making a comment or posing a question in a persistent, perseverating tone that felt like an arrow to the heart. Perhaps this was a survival skill.
Over time, I learned Aloys was one of twelve children born in a village in the Democratic Republic of Congo. At age fourteen he witnessed enemy soldiers shoot and kill his parents, eight of his siblings, and many neighbors. He had no idea what had happened to three sisters who survived the massacre. He fled alone on foot, and for three days travelled past corpses and people dying from wounds, hunger, and exhaustion. Eventually, he crossed into Uganda where he reached a United Nations refugee camp. There he lived for more than twenty years, largely alone, in a tent that only partially protected him from the elements. Food was scarce. The camp was dangerous. He saw others die. He learned to trust in God for his survival.
Early in his twenties Aloys had been in a severe motor vehicle accident involving fatalities. He escaped with a scar along the length of his right cheek that altered his facial expressions, a deformed right earlobe, and ongoing limitations and pain from right hip and lower leg injuries.
During Aloys’s first visit we spoke about alcohol as his medicine for loneliness. He had avoided all drinking since arriving in the US in keeping with a central goal for his new life. “I hope I will make friends in America, so I will no longer be alone.” I shared this hope. We spoke about connecting him with a mental health professional. He was interested.
When he returned a month later, in mid- November, I asked how he was doing.
“I am very frightened. I am cold at night in bed. I have no coat and can only think about how cold I am. How am I going to survive the winter?” Again, I felt an arrow entering my heart. He was clear that cold and not nightmares was preventing sleep; his dreams were about the future. He had enrolled in English classes and was meeting other new immigrants. His fear of freezing to death, however, overshadowed these heartening developments. The worry was intense, confirmed by office screens for anxiety and depression. I suggested trying medication to ease worry and sadness while awaiting his first psychiatry appointment. He agreed.
My reassurances about central heating and warm clothing failed to quell his fear of the cold. I could think of only one way to help. As the visit ended, our interpreter and I looked at each other.
“What size clothing do you think he wears?” I asked.
“Large,” she said.
“Yes,” I agreed. “Men’s Large.”
That evening I found myself in a department store with a pocketful of cash from our clinic’s emergency fund. I wandered through the aisles piling warm socks, long underwear, pajamas, flannel shirts, pants, sweaters, a puffy parka, woolen hat and gloves, and a thick quilt into my shopping cart. I lingered, trying to choose colors and styles that might help Aloys feel attractive and proud but not showy. I felt like a mother outfitting her child for sleepaway camp, imagining discomfort and adventure, and packing love into the cart along with necessary items. I headed to the boot section but decided to wait for Aloys’s foot size. I paid for the clothes and loaded two large bags into my car. The following evening, after work, I drove the short distance to Aloys’s apartment and retrieved the bags from my trunk. He was standing on his back stoop, smoking a cigarette.
“Hello Aloys,” I said.
He extinguished the cigarette and looked me in the eye, glancing at my load. I’m not sure he recognized me.
“Aloys’s doctor,” I said pointing to him and myself. He nodded politely, opened the door, and gestured for me to enter the vestibule. I put down the bags. “For you,” I said, motioning awkwardly from the bags toward him.
He leaned over, peered into the bags, and pulled out a sweater. He looked at me quizzically with those hollow eyes, paused for a moment, then broke into his lopsided smile. “Thank you,” he said in English. His eyes filled with tears, as did mine.
I smiled, shook his hand, and walked out the door, leaving him with the bags. Aloys was ready for the winter. That evening I searched home closets for winter boots no longer being used by my sons and husband.
At his December visit Aloys asked, “Was that you who came to my apartment with the warm clothes?”
I nodded. He said, “Thank you so much. Now I am not afraid of the winter.” He sounded relieved.
I smiled. “Good! How are you sleeping?”
“Very well,” he said, “because now I have a thick blanket to keep me warm.”
“We need to make sure your feet are warm, too,” I responded.
Our interpreter interrupted. “Someone came to Aloys’s door and left a pair of boots for him. They are very good boots, nice and warm,” she said. Aloys wants to know if it was you who brought them.”
I said it was not.
“We don’t know who did that, but he is very grateful.”
I imagined another arrow piercing the heart of another “parent” who then took on the boot problem. I felt relieved. Someone else was in the support network. “Let it snow,” I said to our interpreter. “Aloys is ready.” She smiled and nodded.
I continued to see him every month or two as we moved through his immunizations and screenings. We treated a stool parasite, and his chronic belly pain disappeared. The low-dose antidepressant worked almost immediately. We connected him with a psychiatrist who added a mild sleeping aid. “I am happier,” he said. It was palpable. He smiled more often, and his eyes had a bit of light. The empty shell was beginning to fill. In April he declared, “My mind and body are better.” He was proud to have survived the winter and confessed that he’d assumed “All the trees needed to be cut for firewood, but now I see they are going into buds and leaves.” He had a new worry. “I can’t find work. I am afraid I will die of hunger.” The clock was running out on the eight-month stipend new refugees receive from the federal government.
By August Aloys had a job cleaning hotel rooms and was relieved and proud to be drawing a paycheck. Classes were continuing, and he was using English more in his daily life. In November he spoke of friends at work and school. He was communicating regularly with a woman back in the refugee camp in Uganda and wondering how he might bring her here. He smiled. “I am getting an education. I am working. I have friends. I am happy now. I love my life.” I congratulated him.
In December, Aloys was sleeping well after tiring workdays. I asked about alcohol. “Doctor, I have one or two beers only after work. Then I can relax.” I asked if alcohol was ever feeling like a problem, like in the camp. He said no. I wanted to believe him. And there were no emergency room records, accidents, or injuries. There were no police reports or stories from his community, at least none that I heard. I hoped the human connections and having work had diminished his dependence on alcohol.
I last saw Aloys in early March. The pandemic was just beginning. I was wearing a mask. As the visit ended, he asked, “Why do they give you doctors and nurses masks and gloves but not me who works in a hotel and rides the bus? Are you more important than I am?” Another arrow. I left the room and filled a large mailing envelope with gloves and masks. His face opened into that distinctive smile.
“You are very important to us,” I said. “Take good care of yourself. We want you to stay healthy.” We reviewed COVID-19 precautions.
And that was the last I saw him. Late in July, as I ended a visit with another Congolese patient, we spoke about her community in the pandemic. Implementing health recommendations had been challenging because refugees were reluctant to avoid gatherings so vital to their social support.
I asked if any Congolese had succumbed to the virus, and she replied, “One person.”
“Who?” I asked, dreading this might be one of my patients.
“Aloys _.” My heart sank.
“No,” I cried out in anguish. “No. No. No. Life was just starting to open up for him. What happened?”
She said he had fallen ill with a respiratory illness and had been feeling short of breath. He may have been drinking heavily at the time. He tried to call the hospital to say he was having trouble breathing. The call failed to reach anyone. When his roommate came home several hours later, Aloys was lying dead in the front hall. The medical examiner had determined the cause of death to be COVID-19.
“Was there a funeral?” I asked.
“Yes, “ she replied. “The Congolese community held a funeral.” I wished I’d known.
One of the most painful lessons of our profession is that luck is not distributed equally in this world. We strive to compensate by addressing all kinds of problems, empathizing with patients’ challenges, and offering comfort. This proves particularly hard for patients without families, like Aloys, because of the tendency to slide into the role of next of kin. As such, I have struggled to reconcile his agonizing story with the flame of life he rekindled and his lonely, tragic death. I recall his haunting eyes and questions, the friendships that were beginning to refill his well, and the distance between the large village family of his childhood and the lonely rural New England graveyard of his eternity.
Dear Aloys, I wish we could have had one more visit, so I could tell you how I admire you – your strength and courage in surviving unfathomable loss, speaking about fear, moving to a new land, learning English, making friends, and succeeding at your job. You survived two winters! You were living for the future and thinking about how to make a life with the woman you love. How I wish you could have lived far into the future and learned more about happiness and dreams. Mostly, though, I want you to know that you were a good person and a beloved one. You were loved at the beginning of your life by your mother and father and your brothers and sisters. And you were loved at the end by your community and by me, your medical mother. Your life had meaning.
Elizabeth (Betsy) Toll, MD, is Professor of Pediatrics and Medicine, The Warren Alpert Medical School of Brown University, and a member of the GHHS Advisory Council. Since 1997, I have been fortunate to practice and teach primary care at Brown’s Medicine-Pediatrics residency clinic. Our patients range from newborns to nonagenarians and hail from every socioeconomic background and corner of the earth, including many immigrants and refugees. They have been extraordinary teachers of the human condition.
Across my life I have been drawn to writing and other creative activities to process and understand difficult experiences. I believe I write about medicine for two reasons. First, I want to find a way to reflect about the lessons and stories of my patients. And, as medicine moves increasingly toward administrative and technology-driven outcomes, I have written to advocate for the protection and promotion of healing relationships and humanism in our profession.