I was stunned at the unusually mild temperature when I stepped outside the front door in the early dawn and made my way to the subway station down the hill. Unlike other winter days of the week when there are huddled, waiting commuters, I found myself alone among a flock of pigeons sounding out their drum-like moans in the silence. The rising morning light pierced the horizon, a slow movement of ascending brilliant colors. Its ever-widening expanse cast the Boston skyline into a dreamy silhouette, softening the harsh edges of steel-and-glass skyscrapers in the distance. Today was Christmas. I was on my way to work as a RN at the dedicated HIV/AIDS unit at the Lemuel Shattuck public hospital for the poor and prisoners overlooking Franklin Park.
Within minutes, I began to hear the familiar rumbling sound of the subway train long before I could see it arrive at the station. Upon arrival, the doors sprung open with a clanking sound, and I was greeted with a gentle smile from an African American conductor. Only one other passenger was seated in the car. Dressed up in her holiday finery, perhaps she was off to an early-morning Christmas service. Greetings of “Merry Christmas” passed in whispered tones among the three of us, as if we did not want to disturb the solemnity of the morning. The rhythmic clacking of the tracks soon drowned out any further conversation and we sat wrapped in the comforting warmth.
As the train suddenly descended into the darkened underground tunnel, my thoughts veered toward Will, one of the patients on the hospital unit. I wondered if Will would still be among us this Christmas morning. When I had left the hospital the previous afternoon, he was in the throes of the bodily struggle at the end of life.
Will was a 37-year-old man: tall, handsome, thin, gaunt, immobile, and in the final stages of AIDS. He had come to the unit 13 days before accompanied by his parents, Elizabeth and Woody, along with a priest friend named John. The presence of his parents was a surprise to me, as it was uncommon to see such parental support among the patients on this unit. The painful sting of stigma was overwhelming at this time. Within a few hours of his admission to the unit, Will had suffered two grand mal seizures, which left his already fatigued body completely spent, utterly exhausted. He was clearly in danger of dying from the seizures’ assault on his fragile body. Elizabeth and Woody, who had traveled from their home in West Virginia, kept an all-night vigil at his side that evening.
More often than not, parents were frequently estranged, alienated from their adult children who were sick and slowly dying on this special hospital unit. The reasons for such painful separations were many. Some rejected their child’s sexuality and cruelly cast them out of the family circle, often with a self-righteous “religious” moralism grounded in fearful fundamentalist ignorance. Some were estranged by years of chronic drug addiction. Many were plagued by the ravages of depression, mental illness, and homelessness bred by rampant, systemic homophobia and a social system of barbaric neglect. Dorothy Day, the founder of the Catholic Worker movement, with whom I lived during her last years in New York, called such neglect “a filthy rotten system.”
All of the painful stories of broken family ties on this AIDS unit were the stories of stigmatization. Dr. Arthur Kleinman, author of The Illness Narratives, writes: “In certain societies, so powerful is the stigma brought to the patient by the culturally marked illness label that it affects all his relationships and may lead to ostracism: leprosy, even more than untouchable caste status in India, is like this; so is AIDS in present-day North America.”
Elizabeth and Woody sat attentively with Will for two days and nights after his grand mal seizures. Each of them took turns staying awake, keeping vigil with his fatigued body and silent spirit. They waited with enduring patience and a spark of hope for their son to regain consciousness. Sometimes they simply kept his mouth moistened with drops of water and swabs of Vaseline. Other times, they assisted us nurses in placing a cooling blanket underneath his feverish body to reduce his temperature and prevent other seizures. They were always willing to help the nurses shift his body weight to prevent bedsores, or to be simply present while he slept. Prayer comforts the troubled spirit, and once I found them reading the Hebrew psalms, those soulful prayers of the heart. On occasion, I found them peacefully asleep in the extended hospital chair trying to catch a quick, merciful nap.
On the third day, Will gradually woke up from his seizure-induced coma and spoke his first groggy word to his mother. “Hello,” he said, slowly turning his dark, protruding eyes to meet Elizabeth’s in a moving moment of recognition. That moment brought tears to my eyes and smiles to his parents’ faces. Then Will called out to his priest friend with a shockingly vigorous, “Hey there, John!” After a two-day vigil of prolonged, at times agonizing silence, this spontaneous eruption of life surprised us all.
Will had made a remarkable recovery from the seizures. He gradually emerged from the coma to speak, eat, enjoy a whirlpool bath, and listen to a holiday piano concert in the solarium with other patients. He even asked his friend Jay to sneak him a cigarette when his parents had gone out to get something to eat! Will got his cigarette and relished every puff with a defiant and delighted sense of satisfaction. It was one among several taboos broken on this unit to bring a bit of joy into the ebbing lives of the sick and dying. Though I had been arrested several times in my life for protesting war, militarism, and nuclear weapons, this was a new form of civil disobedience for me, and I welcomed the chance to break some hospital rules for the sake of a little enjoyment amidst a widening web of suffering.
One week after Will’s recovery, his temperature suddenly soared to 105.8 degrees, accompanied by rapid respirations and a thunderous pulse of the heart. I placed him on a cooling blanket of circulating water to bring his temperature down as quickly as possible with the help of medication. We all feared another round of seizures and the possibility of a sudden death. Elizabeth and Woody breathed deeply and continued their bedside vigil. Later in the evening as I made my rounds, I came into the room and found Woody fully extended on the chair. He was fast asleep with restful snores. As I sat in the room with Elizabeth, she said it was Woody’s first real sleep since he had come to Boston to be with his son. Will’s breathing slowly calmed along with his pulsing heart rate. So did my fears of more seizures. In these moments of quiet respite, Elizabeth and I shared stories of our own faith journeys. She told me of the loss of a daughter years before and how Will was now alone with one brother. Her face was saddened by the memory of that loss, and by the unspoken but anticipated loss of another son.
While I was writing my notes at the nurses’ station, John called me on the phone. He asked with a note of weary exhaustion and a hint of exasperation, “Michael, how much longer will he live?” It was a common question of family and friends of patients on this unit—a question the mind asks like a recurring mantra, wanting relief and respite from the prolonged and sometimes agonizing suffering witnessed on this hospital unit. It is often an unexpressed prayer in the hearts of loved ones who desire that the suffering simply end.
Because there were only a few medications available at the time, pain control and palliative care become the only “cure” for a chronic illness like HIV/AIDS. In those moments, however many gifts the mind gives us in the age of science, it runs up against impenetrable limitations. It is then that the heart’s emotional intelligence can break through the armor of the mind to reveal gifts—touch, presence, listening, and reverential silence among them. I wanted to give John an answer to his weary question, some small measure of comfort to his broken heart, but there was no answer I could give to the mystery of impending death.
After every shift, I made it a ritual to visit each patient to say goodbye with a word or touch, for no one knew what might transpire in the hours I was not on duty. At the end of my evening shift, I went to say goodbye to Will and his parents. As I stepped into the slightly open door, I observed Will’s mother gently caressing him with maternal affection and moistening his dry lips with a glycerin swab. This gesture of love stopped my footsteps. I was overwhelmed by the profound reality of mercy in that room. The image of mother and son, an embodied image of the pietà, imprinted itself upon my tired body like a prayer. I could only leave with a gesture of farewell acknowledged by Elizabeth without a word. There was no need for words.
John Howard Griffin, the friend and biographer of the Catholic monk and writer Thomas Merton, suffered terrible pain from diabetes and cancer at the end of his life. One source of that pain was likely the result of chemically changing the color of his skin to experience the life of a Black man in the segregated racist south, an experience related in his remarkable book Black Like Me. In an essay called “The Terrain of Physical Pain,” he wrote, “Those who have known pain profoundly are the ones most wary of uttering the clichés about suffering. Experience with the mystery takes one beyond the realm of ideas and produces finally a kind of muteness or at least a reticence to express in words the solace that can only be expressed by an attitude of union with the sufferer.”
On Christmas morning, before I received the night nurses’ report, I wandered down the hall to Will’s room, where I found Elizabeth and Woody keeping vigil. Will could no longer speak. His respiration had changed into the breathing pattern of the dying: the breaths gradually subside, with periods of absence until the final breath. Elizabeth and Woody were clearly tired. Their sleep-deprived faces were drawn, yet revealed a quiet, unspoken peace. Elizabeth broke the silence. “Michael, I need to say that spending Christmas on this hospital unit with Will is a profound spiritual experience for me. That may sound strange to you but it is true.”
No, it wasn’t so strange to me. On this Christmas morning, Christians and people of all good will were celebrating the birth of Jesus of Nazareth in a bed of dry, messy straw among the misty, warm breaths of animals because there was no room for them in the inn. Will’s family was gathered in a small room of a public hospital for the poor. They kept watch with their son, wrapped him in the swaddling clothes of parental love and compassion. They sat quietly in the dawn hours around his bed, surrounded by the intimate sounds of his final breaths, touching him as they waited for his birth into the ultimate mystery of eternal life.
Elizabeth turned to me. In a soft voice, she whispered, “Michael, I never dreamed that we would be sent to a place where there is so much care and love for our son and for us.”
Will drew his final breath a little past noon in the compassionate and merciful presence of his parents, brother, nurses, and friends. It was the only gift I needed to receive on that Christmas day. ♦
Michael Harank is currently a registered nurse working with poor and marginalized patients at a public health clinic in Berkeley, California. He was a conscientious objector during the Vietnam War and began his pilgrimage as a Catholic Worker in New York in 1978, a journey that is ongoing to the present day.