Great grandpa Saul Matelson was a family physician living in Brooklyn, New York. He did it all: mended bones, delivered babies and treated infections. In 1983, at the age of 77, he underwent surgery to repair a colonic perforation and required a blood transfusion. Unbeknownst to him, it was infected with the human immunodeficiency virus (HIV).
Five years later, Saul presented to the hospital with profound diarrhea and painful mouth sores. Upon arrival to visit their father, my grandmother and her sisters were surprised to see that he had been placed in isolation. Confused and frightened, the Matelson sisters stood outside Saul’s room while an infectious disease doctor told them that their father had acquired immunodeficiency syndrome (AIDS).
All four were horrified to learn that Saul had a “gay man’s disease” and decided not to tell him or anyone else. They fed him a number of lies, including that he was just suffering from a cold and would eventually recover as well as that he was bitten by a mosquito on a trip to South America, contracting an untreatable disease. Saul’s daughters rarely brought him to see doctors, and physicians never made home visits. So he knew whatever was wrong must have been incurable. He was convinced it was cancer.
But something didn’t add up. Families of cancer patients don’t regard their loved ones with disgust. Despite Saul’s pained, lonely eyes, my grandmother feared his “dirty blood” and avoided coming in contact with him. She refused to use the bathroom in his apartment or kiss him ‘hello’ and ‘goodbye,’ a decision she now lives to regret.
Long before I knew this story, I began inadvertently building a career in a field deeply connected to Saul. As a child, I became interested in physician “microbe hunters” in novels and on television. Throughout high school and college, I pursued volunteer opportunities to study infectious diseases and eventually earned a Master of Public Health in infectious disease epidemiology. Unsurprisingly, my passion manifested itself in medical school with infectious disease research and electives. Among my peers, I am the “infectious disease girl.”
Through all of these experiences, my grandmother resisted my passion, unabashedly voicing her disapproval. “Ain’t there anything else you’re interested in?” she would ask in her thick Brooklyn accent. “I don’t want you around those needles!” The reason behind her disapproval remained a mystery to me. It bothered me though, and I repeatedly found myself on the defense about my aspirations. I always thought that having a granddaughter studying to be a doctor would satisfy my Jewish grandmother’s pride. But she seemed disappointed.
I finally learned the truth about Saul during my second year of medical school. As we sat in the car on the way to dinner — grandma, grandpa, mom and I — she attacked my passion for infectious diseases yet again. Until suddenly, grandma spit it out. As the story rolled off her tongue, I could barely catch my breath. I wanted to travel back in time to be with my family during this tragedy as someone who could properly explain Saul’s diagnosis. I wanted to break down the barriers they constructed between their love for Saul and his disease. As I sat in the backseat, it dawned on me that I was unknowingly training to be a physician who could have treated Saul.
I’m grateful that we now live in a world where the science of HIV transmission is better understood, increasingly chipping away at social stigmatization. Graduating medical school amidst a terrifying coronavirus pandemic, I recognize that I am about to enter the health care workforce during my generation’s version of the “HIV scare.” We must carry over important lessons from one pandemic to the next.
Before Saul was sick, it was a tradition that the sisters would kiss their father ‘hello’ and ‘goodbye’ when he left for and came home from work. When he retired in South Florida, this practice continued when they visited his oceanside apartment. One day, they just stopped. It would be naïve to think that this went unnoticed by Saul, whose career depended on recognizing patterns that point toward diagnoses. In infectious diseases, isolation becomes both the greatest tool and the most punishing weapon. In the HIV pandemic, Great Grandpa Saul died isolated from his family, who viewed him as a walking fomite. They feared his disease and “protected” themselves from contagion. AIDS may have been the direct cause of Saul’s death, but the abandonment by his family resulted in a critical insult to his human spirit.
There are miles differentiating the circumstances of social distancing between HIV and COVID-19, but the effects remain similar. Today, my grandparents are older than Saul was when distanced from his family. Now during the coronavirus pandemic, they too are isolated. This time it’s not because they are the fomites, but because I might be. Those big enveloping hugs that grandma lives for and kisses from grandpa will likely become a thing of the past.
As we enter a new world that discourages contact with the aging population, Great Grandpa Saul’s story reminds us that we cannot let them go through this alone. Call your grandparents, parents and elderly loved ones every day. Give them some form of human connection that inspires them to look forward to every new sunrise. While we all practice social distancing for their protection, it is they who most bear the burden of loneliness during the coronavirus pandemic.
Soon I will start an internal medicine residency at Columbia-New York Presbyterian Hospital and move back to the city where great grandpa Saul flourished as a physician. Now the same city is unrecognizable following the outbreak of COVID-19. My grandmother’s worst fears of me being exposed to infectious dangers are coming true. During our daily quarantine video chats, she never fails to warn me of the number of COVID-19 cases in New York. From these conversations loaded with concern in my grandma’s voice, I realize now that my career choice never disappointed her. Rather, it worried her.
We’ve come a long way as a family scarred by HIV’s worldwide devastation. I’ve taught my grandmother about HIV transmission and personal protective equipment. She listens to me when I say that she should not leave the house right now. In return, I collect her list of groceries and drop them off at her home in South Florida. We sit at least six feet apart on the driveway, my grandparents on folding chairs in the shade of their garage. After talking for an hour or so, I remind them to wash their hands when they go back inside. When we video chat over dinner later that evening, they say that my visit was the best part of their day. Then, they inevitably ask for the hundredth time when I plan to head up to New York. “Make sure you have a mask!” grandma so helpfully reminds me.
At this point, it’s clear from our conversations that my grandmother accepts that infectious diseases are my passion and future career. And on my end, I’ve accepted that some things will never change. A worried grandmother will still always be a grandmother.
Image credit: Courtesy of the author Samantha Greissman.