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Dispatch from the front lines

Yale Medicine Magazine, 1998 - Summer


In his new book, Yale physician Peter Selwyn describes the early days of the epidemic.

Fresh out of Harvard Medical School in 1981, Peter A. Selwyn, M.D., began his career at the Montefiore Medical Center in the Bronx. As an intern he saw the AIDS epidemic run rampant through a community already challenged by poverty and drug addiction. In Surviving the Fall: The Personal Journey of an AIDS Doctor, published this spring by Yale University Press, Dr. Selwyn describes his experiences, the people he treated and how their lives, and deaths, helped him confront grief in his own life.

Dr. Selwyn, associate professor of medicine and of epidemiology and public health, came to Yale in 1992 as associate director of the Yale AIDS Program. He is the medical director of Leeway, a 30-bed skilled nursing facility for AIDS patients, many of whom are in the late stages of the disease. The center, which opened in October 1995, recently received state health department approval to add 10 beds, which will be geared to the special needs of patients with HIV and co-existing mental illness.

Dr. Selwyn recently received a faculty scholar's award from the Project on Death in America of the Open Society Institute, which is intended to enhance end-of-life care, teaching and research at Yale-New Haven Hospital and Yale School of Medicine.

I have become an “AIDS doctor,” an outcome I never could have anticipated when I graduated from medical school in 1981. I have been involved in the care of more than a thousand patients with HIV infection, and for almost ten years these have been my only patients. I have been fundamentally changed by this experience, and my history is now indelibly linked with the faces and histories of my patients, especially the many hundreds who have died. This story is their story, and mine.

The beginning of the AIDS epidemic in the Bronx in the early 1980s was a time without recent precedent, a time when a fatal blood-borne disease spread, without warning and with grim efficiency through an unsuspecting and vulnerable population. This same insidious pattern was unfolding in Harlem, Brooklyn, and many other poor, inner-city communities in the United States and around the world. In these communities AIDS was affecting poor, minority populations, primarily intravenous drug users, their sexual partners, and children, in addition to gay men. I have long felt that this history and these stories need to be told, to help honor and take notice of all the uncelebrated men, women, and children who lived and died with this unforgiving plague. Statistics have been described as human beings with the tears washed off. In this narrative, I have tried to restore some humanity to the statistics.

This book describes both the first wave of the AIDS epidemic in the Bronx and the gradual process by which I also became aware of my own unfinished business. Absorbed in the pain and losses of my patients and their families, I slowly began to acknowledge the grief that I had carried unknowingly for decades following the sudden death–and apparent suicide–of my father when I was an infant.

Surrounded by dying young parents, I slowly came to understand, for the first time in my life, what it meant to have a father, and to be one. This process of awakening led me to come to terms with my personal history, along with the stigma and the family secrets that it had engendered, and finally, with my own role as a son, as a husband, as a father to two young children, and as a physician. It was, for me, a journey of healing in the midst of the epidemic, a reclaiming of life in the midst of death.

I remember Nelson most vividly, less because we shared the same birthday than for the gentle sweetness of his soul. In our population of methadone program patients, in which the patients with the most extreme personality disorders seemed to require the most attention, Nelson stood out in his sincerity, thoughtfulness, and calm. Unlike many other patients, he had an emotional maturity that enabled him to talk about his fears, concerns, and feelings about the disease without taking refuge in further drug use or other escapes. Sometimes, working with our patient population, it was easy to become overwhelmed with this sea of neediness, and with the feeling that no matter what you did, it would never be enough. Nelson was not like that, and as a result he tended to draw staff to him in a way that made it clear that they were getting as much emotional support and positive energy from him as they were giving in return.

His wife, Marilinda, who accompanied him to all of his medical visits, was also gentle, composed, and a model of grace under pressure. Their only child, Manuel, was 12, and it was clear that his parents had been successful thus far in protecting him from the overriding influence of the street, in their neighborhood not far from Yankee Stadium, south of the Cross-Bronx Expressway. This close-knit family of father, mother, and only child stirred something in me that I did not identify consciously at the time. It was an image of the ideal family that I had never experienced, or had experienced only too briefly before it was erased from my memory.

Nelson was the first patient for whom I wrote a prescription for AZT, the first week that the drug became available, in spring 1987. I remember carefully writing the words on the prescription, foreseeing that this would be the first of thousands of such prescriptions that I would write. Nelson and I had both been anticipating the arrival of AZT, and indeed for everyone involved in the epidemic at the time this was a momentous event: it represented, for the first time, the possibility that this virus could be treated. Everything that we had done up to then was supportive care. With the advent of AZT, we were at last fighting back at the virus itself, however crudely or ineffectively.

Both of us knew, at the moment I handed him the prescription, that this would probably not be enough to keep him alive much longer, that this was probably going to be, for him, too little too late. Yet for both of us, at that same moment, AIDS suddenly lost a little bit of its terror and mystery.

After doing well on AZT for about six months, Nelson started to fail, first losing weight, then starting to lose his balance and coordination, and then becoming more apathetic and withdrawn. One day, he had a seizure in the clinic and was rushed to the North Central Bronx Hospital emergency room, where a CAT scan revealed a large circular lesion in one of the frontal lobes of his brain. This was likely either cerebral toxoplasmosis or lymphoma but the diagnosis could be made only be performing a brain biopsy. At that time, it was virtually impossible to find surgical consult- ants at our hospital who were willing to perform procedures on AIDS patients, and this case was no exception. In addition, both Nelson and his wife had decided that if he were to become sick again, they would not want further aggressive treatment if the quality of his life would be unlikely to improve. We treated him empirically for a week with medication that would be effective against toxoplasmosis, if that were in fact his diagnosis, but he showed no improvement. His mental status continued to decline, and he began to slip in and out of consciousness.

The last time I saw him, I sat by his bedside and took his hand. He opened his eyes, smiled weakly, said, “Thank you for being here,” and squeezed my hand briefly. Marilinda, who had been sitting nearby, began to cry softly. I talked with her a little while and then watched as she gave him a sponge bath. I had never been to a baptism, but there was something sacred about the way she washed his body with such long, methodical, and loving movements; it seemed as if she knew that this would be the last time she would touch his living body, and that she wanted to linger over it all the more. He died in his sleep that night.

A few months before his final illness, Nelson had told me that he had one unfulfilled wish: to return to Puerto Rico and ride his motorcycle again. He had an old Harley-Davidson, which he had restored from parts and kept stored in a friend's garage on the island. He giggled as he conjured up the image of himself, already beginning to look a little emaciated, racing over hills and around steep mountain bends near his family's home in the central coffee-growing region of Maricao. Not being certain that he could tolerate such a trip, but realizing that it was important for him to go regardless, we arranged for Nelson to have enough medication for several weeks, and local medical backup if he needed it. He sent me a postcard and returned several weeks later, bronzed from the sun and laughing, saying matter-of-factly that there was nothing else he had left to do. (I remember thinking at the time how wonderful it must be to have that feeling.) It was soon after that trip that he began to descend rapidly into his final illness.

I went to Nelson's funeral one rainy evening, at a small funeral parlor in East Harlem. He was lying in an open coffin in a room with red velour walls and dark wooden chairs. I approached the casket, stood and bowed my head for a moment and saw that they had done a nice job preparing him. He was wearing a pressed dark brown suit, hair neatly combed, hands clasped in front holding a rosary. I wondered, as I always do in such situations, where he really was at the moment, and wished him well wherever he was. I turned away from the casket, saw Marilinda, gave her a hug, and then noticed his parents, whom I had briefly met in the hospital. Nelson's father, misty-eyed, pressed my hands clumsily between his and said in Spanish, “Thank you, we will never forget what you did for our son.” These words, spoken to me from a father about his son, touching on death, and remembrance, and love, moved me greatly and reaffirmed for me as I walked out into the night that I had chosen the work I needed to do. I still did not realize how close to home these words would come in my own life, how much they would touch my long-dormant feelings about the loss of my father and his memory. Words from a father about his son, spoken in gratitude to another man's son who had grown up without his father. As I watched this family confront the loss of its father, husband, and son–seeing Nelson's life reflected in relation to his survivors–it stirred something in me that was both numb and painful, something which would eventually lead me back to my childhood history.