Pandemics Old and New

By Katherine Santana

Originally published in Touchstones Fall 2020

I’ve heard people say that things will never be the same—that COVID-19 has made us more aware of how disease complicates relationships and the stigma attached to illness. For me, however, none of these notions are new. They have been constant throughout my life.

*

My father was a tall, handsome man with a serene elegance that naturally drew others, like my mother, to him. But he could also be withdrawn, reserved—an enigma to many who knew him. When he passed away, family and friends shared a sense of mystery that shrouded his life.

One of the few things that pulled him out of that reserve, however, was his distaste for fast food. Vegetables and grains formed the basis of his meals. He prepared each meal with the attention he believed food, the thing that nourished our bodies, deserved, and was always quick to deliver a lecture on the nutritional value of a home-cooked meal. When my mother speaks of him, even now, she praises his cooking.

*

In the years leading up to 1981, doctors and other health professionals began to take notice of a strange influx of cases concerning otherwise healthy young white males suddenly and inexplicably succumbing to spontaneous auto-immune deficiencies. These cases were mainly recorded in New York and California. By 1981, that mysterious illness began to gain notoriety.

Sadly, in its early days, the disease was so unknown and so mystifying, no one knew exactly how one caught it or how to prevent it. People only knew the stigmatized notions of this strange disease, believing that by engaging in drug use, homosexuality, or promiscuous behavior the chances of contracting it were higher. Still, even those who were involved in these activities thought of this disease as a distant threat. 

*

Six years later, in November 1987, the month and year I was born, journalist Randy Shilts’ book about the early years of the HIV/AIDS epidemic, And the Band Played on: Politics, People and the AIDS Epidemic, was published. In it he says, referring to the first highly publicized AIDS-related death, “[Rock Hudson’s] diagnosis became a demarcation that would separate the history of America before AIDS from the history that came after.” AIDS would change America forever and affect my life in ways I’d yet to know. 

*

In 1995, years after my parents divorced, they remained amicable, and my brother and I would visit my father every other weekend. During these visits, my father remained the same man he had always been: elusive. He’d make my brother and me breakfast in the mornings, go to his job in the corner bodega, popping in now and then to make sure we were all right. In the evenings, when he’d get back home, he’d cook us something delicious to eat, listen to music, and sometimes invite a friend or two over. They’d play cards and chat about life’s happenings. When his friends left and the dishes in his small galley kitchen were cleaned, we’d settle down for bed with our usual routine: taking baths, brushing our teeth, and storytelling, which was really just my father reading aloud facts he found interesting from the previous year’s almanac. During story time, when his voice and the cricket’s chirp outside were the only things that filled the air, he’d complain of abdominal pain while pressing his hands down on his belly. He did this so much that I have it permanently etched into my memory. I can see his big brown, veined hands putting the almanac down on the bed, then shaping into a triangle and pressing down into his abdomen. His brow would furrow, and he’d let out a sharp, frustrated “Coño!” 

*

From its inception, AIDS was a stigmatized disease. Individuals suffering from it were shunned from hospitals, schools, workplaces, effectively cutting them off from all of society. Even families and friends were (and still are) afraid of and repelled by the person carrying AIDS or its preliminary virus, HIV.
 
*

By March of 1996, my brother and I stopped visiting our father. He had abruptly moved to Florida for a couple of months and then to the Dominican Republic. There were rumors that he was ill and could no longer sustain himself. His first move to Florida was an attempt to be closer to family; his subsequent move to the Dominican Republic was an attempt to stay alive. My uncle in the Dominican Republic was a doctor and owned a hospital there. 
Back in New Jersey, I heard my mother talk in hushed tones into the phone about my father’s condition. She said things like, “I can’t believe it,” and “I told him his lifestyle would catch up to him.” After weeks of hearing my mother speak secretly of my father’s condition and several phone conversations with our father, it became urgent that my brother and I fly out to the Dominican Republic because “he might die soon.” My father was deteriorating fast. He had become skeletal and sunken-eyed. Or so I heard. 

*

I can’t say I wholly understood my father’s condition or the implications of his disease to my life or his or anyone’s. All I knew was that my brother and I were flying out to see him before we couldn’t see him anymore. We were taken directly from the airport to see my father at the hospital in the capital, Santo Domingo. He was in a room on the uppermost level of the hospital in a quiet hallway catty-corner to a room labeled the Newborn Nursery. I became giddy at the idea of seeing newborns. But I wondered, too, if I could show excitement or joy at a moment like this. I wasn’t sure. So, my brother and I timidly peeked through the glass window at the babies as we walked to my father’s room. At the end of a long hallway, there was a waiting room adjacent to my father’s actual room, and as we passed through, I could hear the ramblings of a television set. There, on a hospital bed, lay my father. White sheets partially covered him. He turned his head slowly and painstakingly toward us, and I saw his familiar but gaunt appearance I had heard described. Despite his attempt to smile, I remained unconvinced he was the father I’d known. He had never been more distant than he was then. 

Thinking of this now, I realize he wore the face of one between two realities: the reality of the living and another one, possibly one only those nearing death are privy to. 

*

Early in the course of the HIV/AIDS epidemic, it was clear that it was a disease that could spread and kill its victims rapidly. This spurred the fear of contagion. I am reminded of that fear as the rapid and rampant spread of COVID-19 makes headline news day after day. 

*

My brother and I rarely spent time with our father while we were in the Dominican Republic. Our aunt told us that the medication our father was on made him irritable, so it was best if we saw him only sparingly. Instead, we would spend our days playing in our grandmother’s garden and visiting cousins or long-time family friends who had known our father as a child. On one occasion, we were taken to a cousin’s birthday party. As we walked around, greeting and meeting never-before-seen uncles, aunts, cousins, and second cousins, we were introduced as “Alberto’s kids.” Each time the same thing would happen. There was a look, then a question, and then a redirecting of the kids around us. At the time, there was an instinctual feeling within me that recognized this odd behavior, but I didn’t grasp the social implications. In fact, it was not until I reflected back as an adult that I understood what was going on in those people’s minds. 

*

When COVID-19 outbreaks first made headline news, some made negative associations between the disease and people of a particular ethnic group, mainly Asians. I was brought back to that moment at my cousin’s party when people in my own family made negative assumptions about me based on fear and ignorance. 

*

The year my father died in a hospital bed in the Dominican Republic, the Center for Disease Control and Prevention reported the first substantial decline in AIDS deaths in the U.S. AIDS-related deaths had a decline of 47% compared to the year prior, 1996. This was hopeful for some, but for my father, it was too late. And although he was gone, the stigma of his disease continued to loom over me. 

*

How does one separate a fear of contagion from prejudice against those infected or even those whom we suspect are infected? How does one use caution while avoiding paralyzing fear? For those with HIV/AIDS, the stigmatization is even greater because of the preconceived notion that somehow they were personally responsible for their condition. If only they hadn’t been sexual deviants or druggies or homosexual or or or… The truth is no one is at fault and all are susceptible. The unsuspecting spouse, the innocent newborn, and the unlucky hospital patient. 

*

I don’t know how my father became infected with HIV/AIDS; like other aspects of his life, the source of his infection will remain a mystery. But I do know the stigma associated with his infection has affected me long after his passing. Even now, as I write this, I’m fearful that I will be looked at differently because my father died of HIV/AIDS.

*

The American Psychological Association defines victim-blaming as a social psychological phenomenon in which individuals or groups attempt to cope with the bad things that have happened to others by assigning blame to the victim of the trauma or tragedy. Victim blaming serves to create psychological distance between the blamer and the victim, may rationalize a failure to intervene if the blamer was a bystander, and creates a psychological defense for the blamer against feelings of vulnerability.

Blaming the victim of a disease like HIV/AIDS harms them and their families. It perpetuates false and negative attitudes toward a thing no one really wishes for. Victim blaming is often about fear—fear that the world isn’t as safe as we think. Most of the time, though, victim blaming is about misinformation—it assumes that somehow the victim caused the misfortune that befell them.

Blaming a particular group of people for the spread of COVID-19 misdirects the real issues that caused COVID-19 to be more prevalent in one group versus another. Issues like crowded living spaces, less access to healthcare, and risking one’s health as an essential worker to maintain employment—all of which are common in impoverished, already marginalized communities. 

*

HIV/AIDS and COVID-19 are surely diseases to fear. However, it is the disease itself we should fear, not the victims. 

*

In recent months, as more and more Americans succumb to or know someone who has contracted COVID-19, and people become more informed, compassion for those suffering with COVID-19 has increased. This makes me incredibly happy. 

Unfortunately, things have not gotten better for HIV/AIDs victims and their families. It is still not a conversation I can comfortably have with others. 

*

For the past twenty-two years, when asked how or what my father died of, I’ve turned a downcast look and said cancer. Ironically, hiding the cause of my father’s death for so many years has perpetuated the very stigma I dislike. The very stigma that has prevented me from demystifying, even slightly, who my father was.