The first person I sang for like this was Sarah. She was twenty-six. Four months after her oncologist cut a sarcoma from her arm and gave her the all-clear; four months during which she planned her wedding and imagined her future, the cancer was metastasizing. It was in her lungs, in her bones. Everywhere.
I was still working for the church then, and I had begun to understand that in the time we spent with the ill we were imploring God to intervene, to perform a miracle, and we were constantly reminding God, and each other, that God could. No one ever used the word “dying,” even if it was the correct word to use.
In the early stages of Sarah’s illness, she came to the church for prayer—it was a mile west of Houston’s mirrored skyscrapers, not far from where she lived with her husband. We huddled around Sarah in the dark sanctuary, several ministers and many of her friends. We laid our hands on some part of her body—a shoulder, the top of her head—and prayed. When Sarah could no longer walk her husband carried her into the church—her head wrapped in a colorful scarf—where we would repeat the same process. It was December, and as she settled into a chair she said, “Christmas miracle?” and shrugged her shoulders.
At another such gathering one of the ministers told Sarah that God had given him a message about her, that she would become a mother to several children. She was wheelchair bound by then and had been told by her oncologist months earlier that if she survived the cancer, her eggs would be too damaged from chemotherapy to produce a healthy child. The minister didn’t say his mes- sage was a metaphor. He had a Pentecostal background—a tradition that strongly believes in miraculous healings. Though we doubted it was possible we couldn’t help but hope.
There was a song that I sang in church that Sarah liked. Once, when she was too sick to get out of bed, she Skyped into the church service and I could see her face on a laptop screen on the front row, angled so she could see me, too. Her face on the laptop made me nervous, but I sang the song. It was a bluesy gospel song about making it up the mountain, even if you never get there. I tried not to look at her face as I sang, because I knew that if I did I would cry and if I cried I couldn’t sing. I would cry because of all the hope in her face, and because I felt complicit in something that wasn’t helping, not in the way she needed. The healing services—a half dozen of us begging God to heal Sarah, holding doubt at bay just for 30 more minutes, until she was back in her wheelchair, until they were driving home, away from us and from the sense that anything could be done to help her—these gather- ings were themselves a kind of metaphor, but I didn’t know that then. It was only when I was singing that I felt free from the expectations and fear. Hers and my own.
Not long after chemotherapy stopped, hospice was summoned for Sarah, and morphine begun. I had not seen her in a few weeks, so when I arrived to her house, her grey skin, smooth head, and ragged breathing shocked me. I knew she was dying, but maybe I had not accepted myself that the time to plead for miracles had ended.
Sarah’s husband sat next to her in bed, texting; her mother sat in a chair beside the bed, stroking Sarah’s hand. I looked around at the others in the room, some I knew and a few I didn’t. I sat on the bed’s edge, beside Sarah’s mother. I felt out of place, like an intruder.
I rested my hand on Sarah’s bony hand, and recalling the words to that song she liked, I opened my mouth and began. Afterward, when Sarah’s eyes fluttered, her mother told me she was saying thank you.
“Infirmary music,” as it is called, was formalized as a practice by the monks of a Benedictine hermitage called the Abbey of Cluny, in the Bordeaux region of France. Poor monks made dying an art form 800 years before the palliative care movement would spread through Europe to the United States, calling for dignity and care for the terminally ill. The monks’ melismatic chants and hymns were a critical component of monastic medicine—the mysterious blend of the physical and sacred that offered the medieval world the only available relief from plague, leprosy, influenza. These musicians faced the mystery of enduring illness with acceptance and melody.
In the early 1980s, when a translation of a set of 11th-century documents detailing the practices of the monks at Cluny became widely available, Therese Shroeder-Sheker, an accomplished harpist and soprano, began incorporating these practices into her music. She struggled with what to call it. This new work, like that of the monks that preceded her, was intended to aid passage from life to death, but not to cure. In the beginning, she called her practice sacramental midwifery. “Tibetan and Egyptian ancients believed that the state of the consciousness at death determined the afterlife,” Shroeder-Sheker explains. “Music is the ferryman.”
“The singing voice should be purified and refined,” she continues. “Everything about our inner life is made audible when we sing.” This idea haunted me. After I left my job at the church, my inner life seemed nonexistent. I had been fired by a spiritual director for my failure to incorporate prayer and meditation into my daily life. I had no discernible spiritual practice. I had even given up on yoga. The only thing I did with any regularity was sing. But sometimes, I didn’t believe what I was singing—the hymns, the assurances, the promises of a faith I was only lightly tethered to. But sometimes I did believe. I believed athletically, fervently, because what else to do?
Sam’s wife Debra called me. I had been friendly with their daughter for a few years, but Debra was all business. She had a list of songs, familiar hymns—a playlist from Sam’s life, spent mostly in East Texas. “Do you know ‘Blood on the Saddle’?” she asked. I wished that I did but I had to admit, no. The other songs she requested I knew for the most part. And I promised to learn the ones I didn’t know because her husband was dying, and though I knew Sam and Debra only remotely, it seemed the least I could do.
“Is this something you get paid for, honey?” Debra asked.
“No, Miss Debra. Just tell me when to come.”
When I arrived to Sam and Debra’s house, a tidy, red brick in one of those gated communities that doesn’t have a gate, just two huge fountains like reverse waterfalls, I’d been following their youngest daughter’s car without realizing it. I had been riding her tail for a few blocks, uncertain where I was going. Each treeless, twisting cul-de-sac looked the same to me.
I pulled up to the house and got out of my car and it was chilly, unusual for Houston even in February. I pushed open Sam and Debra’s front door and stepped into the tiled entryway.
Sam’s hospital bed was set up in the living room, straight ahead. He was still heavy, a big guy. Maybe puffed up from the ALS medication. But he looked nothing like the other dying people I’d attended to. He was conscious, and smiling behind his oxygen mask. There were a half dozen people circled around him. Some holding cups of coffee, some plates of food.
On the phone a few days before, when Debra had asked about payment and given me the list of songs, she explained that Sam had decided it was time to go. Using a dry erase board, he’d indicated “D-I-E S-O-O-N” by directing his eyes to each letter, stopping and starting again, until his message was clear. Sam’s daughter asked me to keep this information to myself because she worried that some of their more religious family members might cry “Assisted suicide!” Sam had been living with ALS for four years, and what started as a twitch in his hands, then breathless exhaustion, had progressed to total loss of voluntary and involuntary muscle use. Without the breathing machine Sam couldn’t breath on his own. Dying meant simply removing the breathing machine, filling his body with anti-anxiety medication, and waiting.
By the time the hospice team arrived, I had been with Sam’s family for five hours, making small talk with the personal health aid, warming coffee in the microwave, picking at a plate of salad. Every 30 minutes or so, when things became quiet, I would begin another round of hymn singing. All the while Sam smiled—at his brother and sisters, at his daughters, his friends—and when he caught my eye, at me, too. It was the only muscle control he had left. He smiled and smiled, like a martyr facing the firing squad.
Sam’s sister told me he had been dreaming lately. “Mama and Daddy were calling to him on the road,” she said, “and he went running to them.” Sam hadn’t been able to walk unaided in three years. Sam’s dream revealed an important part of his belief system, and I suppose, of mine: that the faithful, having passed over into death, would be restored in their bodies and met by their long-dead relatives. Every tear would be dried, and every affliction healed. I knew this because I’d spent ten years singing about it. But in that moment I was struck by the thought, what if this is bullshit? What if instead of his Mama and Daddy Sam met black sleep, nothingness, death, after they removed the breathing machine?
We cleared out of the living room to let the hospice doctor examine Sam. The doctor said, “Hearing is perfect,” and for some reason that’s all I heard him say. All the while Sam smiled—at his brother and sisters, at his daughters, his friends—and when he caught my eye, at me, too. It was the only muscle control he had left. I remembered reading that somewhere, also, that hearing is the last sense to go.
Before the hospice nurse moved Sam into the bedroom, she and I chatted over cups of coffee. She was a thin woman with gray hair and blue eyes. “Once, I had a non-verbal patient who was Jewish,” she said, eyebrows rising into the soft flesh of her forehead. “He only had a few hours left. At one point I whispered into his ear and said, ‘I believe Jesus Christ is the Messiah your people are waiting for!’” My own eyebrows shot up. I thought about my Jewish father, who had been recently diagnosed with colon cancer. I thought about how it would make him feel to hear a claim like this in his last moments, paralyzed by illness and unable to respond. I looked over at Miss Debra. She looked tired. I said nothing.
The hospice doctor begged everyone’s pardon and asked us to leave the room while they transferred Sam to his bedroom. After a few minutes the nurse signaled and we followed in. I stood against the bay windows, over an air conditioning vent. A college friend of Sam’s stood beside me, eating cold cuts off of a paper plate.
Earlier Debra told me that Sam wanted me to sing “How Great Thou Art” and “Be Thou My Vision,” both hymns I knew. I studied the words on the song sheet anyway, to give my eyes somewhere to rest, and waited for the signal from Debra to begin singing. Another hospice nurse, a man who looked better suited to a motorcycle jacket than scrubs, affixed a plastic pump to a port in Sam’s abdomen, and attached a large plastic syringe filled with clear liquid. Sam wanted “Amazing Grace” now, Debra indicated, looking at me as a conductor regards the first violin chair.
“The voice is a wild thing,” Willa Cather wrote in The Song of the Lark, and it was a wild thing that came from my throat. It was raw, and not at all refined. It hurt. I won’t say it lightened, or brought relief necessarily, but the air in the room changed when I began to sing. Soon, my voice could not be heard above the other voices. And that seemed right.
Sam’s wife and two daughters, his sister and brothers, all crowded on the king bed, singing, touching his arm, his shoulder, his face. I studied the stainless steel track that had been installed in the ceiling and the long silver hook that extended over the bed. This was for hoisting Sam in and out of the bed, I understood. It was something Debra, not more than 5 feet tall and 120 pounds, had managed alone for two years.
By the time they took Sam off the breathing machine, they were singing “How Great Thou Art” again. Over and over and over, until he stopped breathing, and minutes later, his daughter told me, his heart gave out. “He had a strong heart,” she said.
Shroeder-Sheker is concerned by the presumption that her work is improvisational, feminine, all about feelings, or intuition. This is why she eventually chose the more academic term for her work, one that simply added “music” to “thanatology”—the study of death and dying. “Perhaps I’m not being clear,” she says to an interviewer. “Our clinicians—that’s what we call them—choose melody according to its affect on the body, on the nervous system. For example, harmony, or the harmonic structure of a particular piece, is chosen based on its affects on the circulatory system. Rhythm,” she says, smiling, “or the cessation of rhythm, directly affects the metabolic system.” Shroeder-Sheker also says that she avoids playing songs familiar to the patient because it encourages them to hold on.
One night, after I’d put my daughter to bed and had climbed into bed myself, I told my husband about the twitching under my eye, and in my thumb. I told him about the numbness in my feet. I vigilantly monitored my body for signs of disease, and when I caught myself doing this, I asked ‘What right have I to take this into myself?’ I knew that my symptoms were psychosomatic, yet I had tests, and only then, with an all-clear from my mildly concerned doctor, was I able to let it go. My lack of training made it plausible that I would get overinvolved. I knew that I would take on pain and suffering that wasn’t mine to take. I understood this inability to separate as a kind of failure on my part.
I have come to understand that my work begins when most everyone else’s has ended. I am often asked, as many are, to pray for miracles, for the cancer to be arrested, for heart disease to be reversed. But letting go is also work; it is difficult, layered work. It is what Shroeder-Sheker calls “unbinding.” It is imperfect work, to be sure, but when the calls come, and they do, I still mostly go.
Recently, I was dropping off my daughter for a play date at a friend’s house. The little girl’s father told me that his 45-year-old cousin, who had been battling melanoma for a few years, was in their back bedroom and the girls would have to try to be quiet in that part of the house. His cousin was trying to recover, he said, from a chemo treatment that left her with first-degree burns on the inside and outside of her body. As he explained her condition I knew she did not have much time. I had been watching him, and others, post on Facebook about her. About her spirit and her faith, which, they said, was strong despite the hell her body was going through.
My daughter had spent enough time with this friend and her family for them to feel like friends of mine, too. If I were going to offer to sing, I knew, I needed to do it now. “I’m so sorry,” I said instead. I pushed open the screen door and walked across the leaf-scattered yard to my car.
Cameron Dezen Hammon’s poems and essays have been widely published and she is at work on an essayistic memoir about religious culture shock. As a songwriter, producer, and singer, Cameron has been featured on PBS, performed at the U.S. Open, and released several albums. Her most recent recording, released through Pledge Music, is a feminist reinterpretation of fourteen iconic eighties pop songs originally recorded by men.
“Infirmary Music” originally appeared in Heaven (TLR Fall 2016).