Hero. A word defined as “a person who is admired or idealized for courage, outstanding achievements, or noble qualities.” A word used during Covid times to define the frontline healthcare workers, including nurses, giving their all to save others.
It was the same one bandied about during the days of the AIDS epidemic, when I began my nursing career.
Jamie waited for me, his visiting nurse, to arrive at his apartment that day before he would let the EMTS take him to the hospital. It would be the last time he would see his home, in his war with the AIDS that ravaged his body.
It was the 1980’s, the height of the AIDS crisis, when the diagnosis was a death sentence. Discovered initially in the US as a rare pneumocystis carinii pneumonia in previously healthy gay men, by the time I graduated nursing school in 1985, there was an 89 percent increase in new AIDS cases compared with 1984. Of the cases up to that time, 51 percent of the adults and 59 percent of the children had died.
I had entered nursing school after four years of college and a baccalaureate degree, after the death of my brother just months before my college graduation. Trying to make sense of the senseless, I was guided to enter a profession where I thought I could do something to make the world a better place. Where every patient I cared for was the brother I had lost.
My first job at a Boston hospital was on a floor that included patients with infectious diseases. AIDS patients. We were masked, gloved, protective gowns on. The outcome then, inevitable, terminal. Patients gaunt, fearful, struggling for each gasp of air. How many times we said goodbye, patients dying, people going home with hospice care to die there.
Heroes we were, caring for these patients, these people looked at by society as untouchables from the stigma of a disease that was just a virus.
Heroes we were, who sometimes, as I did, accidentally stuck myself with a needle from one of those patients. Testing, months of wondering if I had a terminal illness, knowing that I was likely to be unsupported by the hospital and the community if, like some of my colleagues, I became infected. Gloves were rationed then, behind locked cabinets. If you ran out, you had to make do. Much like the measures taken by the healthcare professionals in the early days of this pandemic, repeatedly wearing masks meant to be worn once.
Heroes, who as I did, went to the front lines, to people’s homes. Sometimes wearing PPE, inevitably going to the most dangerous neighborhoods, alone, to care for those people who were isolated by a society only beginning to understand how AIDS was transmitted. Caring for for those patients like Jamie, gaunt and pale, but for the purplish lesions on his face, in his hospital bed in the living room where the Pottery Barn furniture had been pushed to the side to make space. A man who shared my love for music and dancing to disco at clubs, my insatiable love for reading and a longing to visit Paris.
“I think we would have been friends if we hadn’t met like this,” he said. “We should all go to Paris together.”
His partner smiled sadly, nodding his head.
At our next visit, Jamie, who needed the comfort of a compassionate soul, left his home for that last time.
The sadness, as I attended his funeral. This overwhelming exhaustion from knowing then, when no treatment existed for the disease, that no matter what you did, these people that you chose to care for were likely to die.
It wears on you, this. Wears on you in a way that becomes cellular, coloring the moments outside of the care you provide. Wears on you enough that you have to step away from a career that meant everything but now is destroying you.
Heroes. Like the frontline workers now once again overwhelmed again by the spike in Covid cases, a spike that didn’t need to happen. Those frontline workers cheered every night at the beginning of this pandemic, spending time away from their own families, jeopardizing their own safety to care for people ravaged by this mysterious virus.
But then, hope. A vaccination effective against the disease. Masks and handwashing working to stem the spread. A return to a sense of normalcy for a brief time, even for those heroes, who would still be haunted by what they saw and the choices they had to make.
Earlier this year, we returned to the dark days once again. A variant, a mutation, as viruses do. Those same heroes, caring again for the primarily unvaccinated patients filling and overwhelming the healthcare system. Nurses working double shifts, as I did, missing moments with their own families, abused by patients who still think this virus isn’t real, threatened by members of the public, sometimes becoming ill themselves.
The AIDS epidemic began in the early 80s. As of 2018, about 700,000 people have died of HIV/AIDS in the U.S. since the beginning of the HIV epidemic, and nearly 13,000 people with AIDS in the United States die each year. As of August 10th, 2022 a total of 1,030,777 of COVID-19 deaths have been reported in the United States.
In just two years.
The images you see as a nurse, the experiences, stay with you. The overwhelming stress of trying to bear the unbearable leads to the breaking point, much as it did for me years ago. But AIDS had no treatment then, in those early days. We have the technology now to mitigate the spread of this disease of Covid.
Choosing the pathway of a helping profession usually isn’t about the glory. There isn’t much glory or many accolades to it. Like my choice, entering nursing is a personal, often deeply meaningful pathway. The choice to leave it, often heart-wrenching, is sometimes an act of self-preservation.
Hero. It is just a word. The cheers, the cartoon memes mean nothing. The actions people take or don’t to control the spread of this pandemic speak louder than any words ever could.
[I] Boyce Rensberger, “AIDS Cases in 1985 Exceed Total of All Previous Years”, The Washington Post, January 17, 1986, https://www.washingtonpost.com/archive/politics/1986/01/17/aids-cases-in-1985-exceed-total-of-all-previous-years/38c933d7-260c-414b-80f7-0dd282415cc6/
[II] The HIV/AIDS Epidemic in the United States: The Basics, KFF.org, June 7, 2021, https://www.kff.org/hivaids/fact-sheet/the-hivaids-epidemic-in-the-united-states-the-basics/.
[III] Covid Data Tracker Weekly Review, CDC, Accessed August 14th, 2022, https://www.cdc.gov/coronavirus/2019-ncov/covid-data/covidview/index.html