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It was 1990 on the Northern California coast. The golden sun made autumn feel like summer for someone coming from fall in Upstate New York. A minivan filled with children arrived at the airport and took me directly to a playground. The kids did not react or seem excited about their new nanny. At the end of that first long day, I fed everyone dinner, changed diapers, and gave baths. I was covered in spit-up and exposed to all kinds of body fluids without any instructions on how to stay safe from the virus that causes AIDS. There were boxes of gloves around that no one seemed to use. Instead, I had to trust what I saw: that people hugging, feeding, and bathing children – just as everyone hugs, feeds, and bathes children – were not a risk for acquiring HIV, a disease with a death sentence. Sitting in a damp basement apartment that night, another young volunteer explained HIV to me and which of the children were eligible for lifesaving medication and which were not. I did not sleep that night. Instead, I watched the slugs make their way across my bedroom floor, thinking about an escape plan. I discovered this volunteer position after college: caring for children with HIV and AIDS at a lay monastery 1 on a remote Christmas tree farm. With no internet or cellphones, I scheduled weekly phone calls with my boyfriend, Mark, who was home in New York caring for his father with amyotrophic lateral sclerosis. We wrote letters between calls, and when he was not writing about the Red Sox, he talked about his father's rapid deterioration. I don't think it occurred to us back then that we were both caring for the dying when we were so young ourselves. Work on the farm started well before the kids woke up, and I gave the morning medications. Maria, a 5-year-old with a heart condition, epilepsy, AIDS, and diabetes, needed twice-daily glucose checks and insulin injections. She was abandoned in a New York City hospital and could not walk or eat solid food, communicating mostly through tantrums. I learned how to restrain and poke her while not getting a needle stick myself. Maria shared a room with Sheryl, a bright and extremely agile 4-year-old with HIV who had the street smarts of a much older child. Sheryl once climbed to the top of a bookcase and drank an entire bottle of her sister's zidovudine (AZT), the only medication approved to treat HIV at the time, because she knew they had the same disease and did not understand why they weren't giving her the same medicine. 'I needed that whole bottle! I don't want to die', she explained matter-of-factly. Penny was a darling 2-year-old girl who had the tell-tale neurological signs of babies with in-utero HIV infection, suffering from cerebral palsy, disseminated shingles, intractable diarrhea, and fungal and bacterial infections that, at the time, I knew nothing about. I did know she was steadily declining from the day I arrived. She was toddling through the pumpkin patch in September, but by Thanksgiving, she was most comfortable experiencing the world from high up in her mama's cozy backpack. She was ineligible for the two study medications available at that time because she was too sick, something that was hard to wrap my head around. By Christmas, Penny could not sleep through the night. It was a busy and magical time of year. By day, I was making wreaths and preparing trees for shipping across the country, cooking meals, milking cows, and dressing little giggling bodies. I pushed swings, kissed boo-boos, and we sang all day. Late at night, after the house was quiet with sleep, small cries, from the chronic pain of AIDS and the weeping wounds of never-ending shingles, would tiptoe down the hall and wake me. When it was my night to care for little Penny, I would walk to her room and pull a wide awake, sweet, two-year-old from her crib and take her down to the quiet of the living room – 3 a.m., 4 a.m., 5 a.m., we would rock in the old brown armchair and I would sing her favorites, softly, so as not to wake the others. Those early morning hours singing 'Rainbow Connection' over and over changed my heart. Those sweet, soul-filled hours in the drafty night air, with a feverish child resting on my heart, led me to a career in nursing and would have a ripple effect on families affected by HIV for years to come. Mark's father died at home in early April. After he called me with the news, I flew to New York to be with him, leaving Penny and her family during a precarious time. When I returned, I called from the airport and was surprised to learn that Penny had died while I was away. I returned to a family in deep mourning. They asked me to bury Penny, as they did not want a stranger to do what they felt was a sacred task. Her funeral was held in a small white chapel on a hill overlooking the farm. After the service, family and friends shared a meal down by the farmhouse while I stayed up on the hill in the hot afternoon sun, and shovel by shovel, I buried her tiny coffin alone. Several hours later, I made it down the hill, just in time to prepare supper for everyone. Late one night, a few weeks after the funeral, under the starlit California sky, I scooped up the children, and we piled on the swings in our pajamas and loudly sang, 'Someday we'll find it, the rainbow connection, the lovers, the dreamers and me…'. The silence following Penny's death was all-encompassing, and they needed to know it was ok to be loud again. That summer, I left the farm and moved to San Francisco and continued to work in maternal HIV, supporting the landmark 076 trial that discovered that AZT use in pregnancy and as prophylaxis in infants significantly reduces HIV transmission to newborns 2. This was the first of many lifesaving studies I would work on in the coming years. Mark and I were married a year after both his father and Penny died, and by then, it was clear that caring for families affected by HIV would be the north star that would guide our major life decisions. I studied HIV at Yale and became a Pediatric Nurse Practitioner and later a Nurse-Midwife. Many children with HIV born in the early days did not make it to adulthood, but the ones that did are now in their 30s and 40s with miraculous second-chance stories. They find themselves navigating stigma, disclosure, sex, and parenting. Many struggle with engaging in care, taking medicine, managing mental health, finishing school, and keeping jobs. Recently, I learned that Ellie, a young woman, I cared for since she was 11, died. Ellie loved dancing and baseball and, unfortunately, shared her brain with coccidioidomycosis. She was born with HIV around the same time Penny died. Through tears, her aunt explained, 'We never thought Ellie would live past five. Even still, we are stunned to lose her just a few months before her 30th birthday. We had the biggest party planned'. There are many reasons to celebrate our strides in HIV research, like long-acting therapy, Undetectable=Untransmittable, and pre-exposure prophylaxis, yet our work is not done. Forty years in, and AIDS remains the leading cause of death for younger women (15–49 years) globally 3. Stunningly, every 2 minutes, a young woman (15–24 years) acquires HIV 3, and in 2022 130 000 infants and young children, like Penny, acquired HIV with 84 000 HIV-related deaths occurring worldwide 4. Furthermore, almost half of US youth with HIV (13–24 years) are undiagnosed, and those in care are less likely than adults to have an undetectable HIV viral load 5. The goal to 'End the HIV Epidemic' by 2030 6 is unlikely to be met, especially for those at higher risk. Furthermore, the COVID-19 pandemic has set us back in testing, treatment, and prevention 7. Although it is critical to address HIV decriminalization, youth-friendly HIV education, and parental consent as a barrier to testing and treatment 3, threats to global funding for HIV treatment and prevention persist 8,9. We need to focus on mitigating the HIV provider and nursing shortage by implementing HIV education in primary care medical and advanced practice nursing programs 10. Looking back, it is hard to imagine becoming anything but a nurse. It was extraordinary to be surrounded by redwoods, making butter from Brown Swiss milking cows, and caring for children with HIV during the dawn of the epidemic. Back on the farm, a chapel bell kept time. It rang four times a day, calling the monks to walk up the hill to pray for both rain and a cure. Sometimes, I can still hear the bell softly ringing, calling them to early morning lauds, followed by midday meditations and evening vespers. Finally, compline, the last prayer of the day, sometimes prayed in private and often sung with a small child nestled in your lap. Acknowledgements I would like to acknowledge the McGovern Center for Humanities and Ethics Writers Fellowship, the Starcross Community, the patients and families impacted by HIV and AIDS whom I have cared for over the years, and my family who is just as much part of this story as the people I have cared for. The families in this essay gave permission to be included in this publication, however their names were changed to protect their privacy. Funding: Special thanks to The Sumner Roy Kates Charitable Trust for supporting my work in the McGovern Center Writers Fellowship. Conflicts of interest There are no conflicts of interest.
Emily Barr (Thu,) studied this question.