Re-posting this piece from last year, in commemoration of HIV Long-term Survivor Day, which is today, June 5th.
As always, thank you for reading.
We are still here.
A New Normal
Part XIV of an Ongoing Chronicle of the First Fifteen Years of the AIDS Pandemic
by Bruce Ward
One Sunday, about fifteen years ago, I was visiting my then eighty-five-year-old father in Massachusetts. We were sitting at his kitchen table, and each of us was silently filling our 7-day pill organizers, top for A.M., bottom for P.M.
That’s when I realized that, at age forty-six, I had been sorting pills much longer than my eighty-five-year-old father. In fact, the process of sorting pills had become completely normalized.
Over the years, I have continually had to adjust to a “new normal.”
I was diagnosed with what then was called HTLV-111, in 1986. This was ten years before the pharmaceutical treatment we all know now as the protease inhibitor “cocktail” changed the course of the epidemic, in 1996.
My T-cell count, at the time the marker for viral progression, was 217. A normal T-cell count is 500–1500.
I was living in New York City, and had already been working as an AIDS educator when I received my diagnosis in ’86. And it was my nature to take the bull by the horns and take immediate action.
Of course, there was little to be done at that time. I found a prominent doctor in the West Village who had a primarily gay practice, and was now steeped in all things AIDS.
There were a few experimental treatments that worked in separating the virus from healthy T cells, but only under the microscope.
One such treatment was only obtainable through an underground AIDS guerrilla group, the PWA (People with AIDS) Coalition. It was called egg lipids. So, in 1986, I took the subway to their makeshift office downtown and purchased a huge jar of this viscous, peanut-butter-like concoction, paid them a lot of money, and brought it to my tiny fifth-floor walkup studio apartment in what was then the seedy area known as Hell’s Kitchen.
What you would do is scoop the substance into individual ice cubes, freeze the tray, and, in the morning, pop out one of the cubes, let it melt, and then spread it on a piece of toast, and eat it.
Although the egg lipids did nothing to increase my T cells, I continued to do my daily routine, and, in fact, went to purchase a second jar at the PWA Coalition. And left it on the subway. I probably cried on the street when I realized it. And never purchased it again.
Around the same time that I was diagnosed in ’86 and taking the egg lipids, the first pharmaceutical drug was released into the market: AZT. I was working as an educator for the New York City Health Department AIDS hotline, and TIME Magazine came into our offices to photograph the operators for the breaking story. And so my photo appeared, twice—phone receiver to ear, a head full of curly brown hair—on the inside cover of TIME, and again, larger, accompanying the story, under the headline: “A Ray of Hope in the Fight Against AIDS.” I was the unwitting face of hope.
Two years later, in 1988, I began taking AZT, myself. It signified a new marker for me. Now it was serious. I held that tiny blue and white pill, imprinted with a unicorn—the symbol of Burroughs-Wellcome pharmaceuticals—in my hand. I took a breath and swallowed it. Little did I know that I would still be swallowing antivirals, every day, for the next thirty-six years. And counting.
But then that became the new normal. Until I became anemic. And then a constant plateauing of “new normals” would occur, every year and a half, when I was switched from one antiviral to another.
For the next eight years, I managed to stay just one step ahead of the virus, from AZT to less toxic drugs: ddI, ddC, 3TC, Fuzeon, and then in combinations, that all may have slowed the progression of the virus, but did not stop its inevitable and relentless gobbling up T cells like the PAC-MAN video game.
And then, in 1996, seemingly out of nowhere, came the protease inhibitor cocktail.
For the past twenty years, I have been on the same treatment regimen. I’m not one of those who can just take one pill a day. I’m on what’s called “salvage therapy.“
And the double A.M./P.M. pill organizer became the next adjustment, the new “new normal.”
I still take three antiviral meds, twice a day, for a total of ten pills a day. That’s in addition to the meds for all of the other ailments that I’ve experienced as a consequence of living with the virus for so long, like checking off items on a grocery list: two lymphomas and chemos, a heart attack, six stents, both hips replaced, high blood pressure, neuropathy, diabetes, depression, and chronic fatigue. And pills and injections for all of them.
I have estimated that I’ve ingested approximately 100,000 antiviral pills, since that first AZT tablet, thirty-three years ago.
I am basically held together by duct tape and Elmer’s glue. And the miracles of modern medicine.
Some research has stated that the typical long-term survivor is 13.3 years older than our biological age. So I’d like to think that I’m not doing too badly for a 76.6 year old man. (I am, in actuality, 63.)
I’m always adjusting to a new “new normal.” It’s the only way to stay afloat.
So, I continue to sort my pills, every Sunday—just as I did with my dad, at that kitchen table, fifteen years ago.
Because we all—all of us—learn to adjust to new normals, throughout our lives. And I want to stick around long enough to see what the next one will look like.
This is the daily pill box that I fill every Sunday evening.
This is the story of how it got that way.
Part XIV of “Years of Living Precariously”, my ongoing column in A&U Magazine, chronicling my experiences during the early years of the AIDS epidemic. This is the text version of the oral “storytelling” event that I posted here in June. As always, thank you for reading.
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