A personal account of surviving 40 years of AIDS

Thursday, July 16, 1981: I’m sitting in my father’s brown recliner waiting for a 60 Minutes-type TV newsmagazine to commence. It’s a few minutes before 10 pm and a soothing breeze seeps through the screen door to my rear left, replacing the day’s oppressive summer heat. It’s cooler here in the Los Angeles suburb of Whittier, California than in the city itself—less concrete and more trees probably helps. 

I’m anxiously waiting to view a segment on sixteen-year-old superstar Brooke Shields, whose latest film, Endless Love, opens tomorrow. Since I’m on summer break between the eighth and ninth grades, Mom and Dad have given me permission to watch television this late on the family room TV set. I’m also experiencing the show in real time since, according to Mom, videocassette recording machines are “too expensive and unnecessary.”

The broadcast kicks off with a gray-haired, male news anchor announcing the episode’s first segment: A report on what’s being called “Gay Cancer.” As he continues speaking, now in voiceover, footage plays of men in San Francisco hospital beds that are covered with large, purplish spots. One patient, identified as a 30-year-old homosexual male, who has skeletal limbs and sunken eyes, looks closer to sixty. Fear surges through my sensory system: I identify as bisexual (deep down I know I’m gay, but haven’t processed this yet), and though still a virgin, I’ve already begun sexual experimentation with other boys. I nervously wonder, can I get Gay Cancer?

The news anchor, still in voiceover, reports that the patients with this mysterious illness have had, “on average, over one thousand sexual partners.” One thousand! Relief sweeps over me and I toss all thoughts of “Gay Cancer” in the dustbin, believing this illness will never touch my life. 

I had no clue what was to come.

On a late-May weekday afternoon in 1991, I just finished reading the breakup letter from my boyfriend of six months, Gregg, written on used stationary (or “recycled paper” as he deemed it). I called Robert, my best friend, as one generally does after being dumped.

“You should hang out with me tonight instead of staying home alone,” Robert suggested. He had a DJ gig that night in a sleazy (my term) gay club in Silver Lake—the predominately queer East Los Angeles neighborhood where Robert lived. I accepted his invitation and drove from Whittier to Silver Lake, which was about a half-hour trip by freeway back then. I arrived at the club to find it unusually busy. 

Part of Robert’s job from the DJ cage, located next to the front door, was to collect a $5 membership fee from the all-male clientele (allowing it to be considered a “gentlemen only” club). The steady flow of patrons quelled all opportunities to chat with Robert. Looking to kill time before business (hopefully) slowed, I sunk into a ratty old couch that I’m grateful not to have gotten bed bugs from, then lit a Marlboro Light, listened to the industrial-dance music Robert was spinning, and watched shadowy figures of men cruising each other. Occasionally a man would stroll under one of the dim amber lights that barely illuminated the club, revealing lustful eyes.

Robert was the first person I’d known to test positive for the AIDS virus. He received his results during the summer of 1987 at age 21. Fortunately, Robert’s health was stable at that moment. Only one person I knew had died from the disease so far: He was the boyfriend of my friend Brandy, who unknowingly infected him in early 1990. Both young men were 23 at the time. I’d tested negative for the virus annually since Robert’s diagnosis. My ex-boyfriend was also HIV-negative, so I did not have antibodies for the AIDS virus while sitting on that ratty couch at age 24.

I relocated to a small patio at the back of the club for fresh air. Gary, an older friend of Robert’s I’d briefly met a few times, was smoking pot and standing in a semi-circle with several men dressed in leather fetish gear. Gary said, “Hi,” and offered me a hit of what looked and smelled like pot in a small glass pipe. I accepted.

Shortly after smoking from the pipe, I’d become disorientated, which was not my experience with marijuana historically. Once, at age 16, I’d smoked a few puffs from a joint at a house party, only to learn afterward it was laced with Angel Dust. When I came to, I found myself being carried outside by two other teenage boys, passing in front of the policemen who’d broken up the party (I can only deduce that European ancestry prevented my arrest).

That was my only experience smoking pot mixed with another substance prior to Gary’s. I soon passed out in a dark part of the club in Silver Lake, whereupon three men sexually assaulted me. In August, I tested positive for HIV and was told I had a life expectancy of five years. AIDS claimed Gary unexpectedly in July, so I never learned what was in that pipe.

Michael Matson in 1991

Of the three-dozen men with AIDS I came to know, two-thirds of them died prior to the approval of protease inhibitors for the treatment of HIV in late 1995 —including Robert, who died in June that year, two weeks after his 29th birthday. Brandy was one of four others I knew to pass later on. 

Despite being steeped in death, the early 1990s are one of the most remarkable and fondly remembered periods of my life. I moved in with Robert and amassed a circle of friends consisting primarily of creative professionals like myself. Collectively, we were prolific at producing work about HIV/AIDS that was urgent, confrontational, and, most importantly, human. We also shone a spotlight on people in positions of power who turned their backs on HIV/AIDS, treating us as poorly as someone who abandoned their pet dog. Fellowship thrived during the plague years as we were all determined to save the lives of our beloved, as well as our own. People infected with and affected by the virus pooled resources and talent for the greater good, manifesting solutions to navigate the health crisis. 

Organizations emerged in my city, such as Being Alive and AIDS Project Los Angeles, which offered information, support, and assistance. Project Angel Food, which still exists today, provided fresh-cooked meals to homebound PWAs with food prepared and delivered by volunteers. ACT UP and Queer Nation kept pressure on legislators, healthcare providers, the CDC, and the pharmaceutical industry. There were constant fundraising activities in the form of music concerts, dance events, drag shows, and art auctions. The majority of those involved in fundraising donated their services. Never before had an abundance of love, empathy, and humanity crossed my path. Diamonds are formed under heat and pressure, after all.

Our peers taught us to “assume everyone is positive and act accordingly.” Safer sex practices were explained, demonstrated, and utilized (for the most part). There was little discrimination towards people living with HIV and AIDS who entered into serodiscordant relationships, both romantic and sexual. We took turns caring for those too sick to care for themselves, a large number of whom had been abandoned by their families out of fear and ignorance. And the patron saint of AIDS, Dame Elizabeth Taylor, pushed President Reagan in 1987 to address AIDS at length in public for the first time (six years into the plague …ugh!). Additionally, she turned her Bel Air mansion into a “safe house” where experimental drugs were bought and sold after being smuggled in from other countries. Taylor also graced the November 1992 cover of Vanity Fair holding a condom in her impeccably manicured hand. It was a radical act that upset Catholics everywhere. Ha! But dark forces also thrived.

During the twelve years presidents Ronald Reagan and H.W. Bush were in office, scant assistance was provided to battle the virus. To his credit, Bush did sign The Americans with Disabilities Act, protecting people with HIV, but only after being pushed for years by Democrats Senator Edward Kennedy and Congressman Henry Waxman. Unfortunately, Bush also referred to AIDS as “a behavioral disease.” 

There was also North Carolina Senator Jesse Helms, who in 1988 helped pass legislation banning the CDC from funding AIDS programs that “promote, encourage or condone homosexual activities,” legislation that echoed Britain’s Section 28 law. Helms also claimed, without evidence (sound familiar?), that “there is not one single case of AIDS…that cannot be traced in origin to sodomy.” Ignorant, fanatical, and fear-mongering elected officials are nothing new, you see. Nor is publicly calling out these menaces in astonishing ways: To the delight of many (and featured in the excellent 2012 documentary, How to Survive a Plague), AIDS activists created and covered Helms’ home with a 15-foot replica of a condom!

For individuals outside urban areas, fear and wrath could result in harrowing consequences, such as the burning down of residences where families that included a child with AIDS (usually contracted through blood transfusion) resided. Some parents kicked their own children to the curb. My late friend Cory was just fourteen when his parents forced him to fend for himself on the streets of New York because he was gay. His only commodity was his body, which he sold, and likely acquired HIV doing so. 

Healthcare itself was a precarious obstacle course. I hid my infection from health insurers because, if they discovered I was HIV-positive, coverage would end immediately, and then no other insurance provider would cover me either. So, I went to The Los Angeles Gay & Lesbian Center in Hollywood for all of my HIV medical needs. And I never let doctors outside of The Center take a blood sample. Ever! (Bless President Obama for the ACA, which eliminated lifetime spending caps and preexisting-condition clauses. This legislation saved my life, as did Senator John McCain’s thumbs down vote against repealing the ACA.) 

After the introduction and distribution of protease inhibitors in late 1995, the health of many PWAs rebounded. A once muscular friend I ran into earlier that year had become as skeletal as the 30-year-old homosexual man I recalled from the 1981 “Gay Cancer” segment. I feared that meeting would be our last. But protease inhibitors not only saved his life, the treatment allowed him to regain his previous beefcake status. Sadly though, after 15 years in the trenches battling AIDS, existential quandaries emerged for many of those returning from death’s door. 

Some people with HIV had cashed-in life insurance policies. Others sold their homes for funds to live on and pay for healthcare. Extended life and improved health were the greatest gifts reclaimed from the battle, but how does one re-enter society after having arranged their own funeral? And guilt took root as survivors questioned why we were spared while hundreds of thousands were not.  

I spent a large chunk of the following decade navigating this new reality. Since I was infected before finishing college, I’d never developed a career plan or financial strategy. When one is told they’ll die before 30, why bother? And dating as an infected person in the late 1990s was nothing like it had been pre-protease. 

After returning to the singles scene, I decided to be candid about my HIV status from the get go, preferring not to waste time on someone who couldn’t deal. Shockingly, that turned out to be everyone I met for a coffee date. The response was generally akin to: “I’m at a pivotal point in my career and life and just can’t risk my health.” So I gave up dating indefinitely. Then I got sick.

While working and living in Manhattan during 2006, my T cell count rapidly dropped to 300. New York was too much for my immune system, so I returned to L.A. Hepatitis B, shingles, oozing skin infections, and back surgery followed. 

In May of 2012, I quit my online editor job due to constant pain from Myofascial Pain Syndrome, bilateral lymphedema, neuropathy, and the back surgery that had failed. I needed a cane to walk and I began having panic attacks from dreading the degree of pain I’d wake to each day. After beating HIV for more than two decades, the virus now seemed determined to cross the finish line before me. It took several years, and the help of many selfless friends (thank you Andi, Chilly, Joe, Rick, Tina, Wayne, and especially Mark, as well as everyone who donated to the GoFundMe page so I could afford rent). Luckily, my health improved notably by 2016.

In March of 2017, my father had a heart attack after surviving four bouts of cancer. He was also caring for my mother, who had dementia. I returned to Whittier and took over as caregiver. My only sibling avoided this role. He wasn’t equipped with a skill set for handling the dying process. Experience with both the triumphs and horrors of the AIDS pandemic trained me to help usher my parents from this life to the next with absolution, dignity, and love. Before he died, I overheard a phone conversation of my father’s; he told the person on the other end that my caregiving was “a Godsend,” which is likely the greatest compliment I’ll ever receive.

The final year of my parents’ lives (they died three months apart in 2018) is now the most extraordinary and cherished period of my life. Spending so much time with them at the end was an honor and a gift, as was, repaying in some small way, the unconditional love they’d always provided me—something too many LGBTQ+ people haven’t experienced. And I would’ve never been able to care for my parents successfully without everything my peers taught me during one of the darkest periods of the late 20th century. Flowers bloom in manure, you know.

It’s now 2021 and, my dear, I’m still here! Not only did I survive the AIDS pandemic, but COVID-19 as well. Of all the things I’d imagined could occur in the future, living through a second pandemic was not one of them (if I must experience a third, I’d request zombies; at least you can see and hear them). 

After surviving an accident in January resulting in a broken femur and a near-fatal staph infection acquired through a hospital IV, my teenage idol, Brooke Shields concluded, “I don’t think adversity builds character, I think it reveals character.” 

Since life and adversity will be forever intertwined, a time will come for everyone’s character to be revealed. I believe that, if we allow it, the majority of these characters will be indomitable and fueled by love. 

Michael Matson is a writer and visual artist whose work has appeared in various publications, including The AdvocateNewsweek, and Out. His viral load is undetectable. @matsyland