Positive since 2012
The gray storm clouds of HIV/AIDS first appeared on the horizon of my life in 1976. I was a 20-year-old breaking into the gay lifestyle. I had come out at 15 in a small North Central Oklahoma town, which had been the only home I’d known until I left to attend college.
College life in Oklahoma City was foreign yet exciting. There were gay clubs and openly gay people. It had everything my small, quiet hometown didn’t. Up until then, I’d not had role models. I hadn’t known anyone who was openly gay—I had to figure things out on my own. In the big city, my eyes were opened to a new world of dancing until 2 a.m. and sex until dawn.
After my second year of college, my savings were depleted. I was forced to leave college. I decided to travel. I wanted to see the country. I ended up in Long Beach, California. I settled with a roommate in a small apartment in a predominantly gay neighborhood. I made friends quickly, mostly because I was young and considered “fresh meat.”
The most popular of the neighbors were a gay couple at the end of the street. They had been together for a number of years. One partner was a handsome nurse at a hospital, and the other was a smoking-hot, burly truck driver. They hosted weekly barbecues, dinner parties and Sunday brunches at their home. Everyone loved them. They were the life of the party.
One Sunday afternoon, as we were cleaning up after one of their brunches, the truck driver excused himself to take a nap. His partner was a little concerned. The truck driver rarely took naps, but he had just returned in the early morning hours after driving his truck from San Francisco.
By evening, word circulated around the neighborhood that the truck driver had become ill, and his partner had taken him to the hospital. The next morning, our landlord and upstairs neighbor informed us that the truck driver was back at home. The hospital refused to admit him because they did not know what kind of illness he had, and they did not have the means to quarantine. He was sent home in the care of his nurse partner. A doctor would check on him daily through house visits.
Monday afternoon, the truck driver was bedridden, too weak to get in and out of the bed. A hospital bed was delivered, courtesy of the hospital. The neighbors made a schedule to take turns to care for our neighbor.
On Tuesday, he was put on IVs because he was unable to keep food down. Overnight, his physical appearance had transformed into that of a man twice his age.
At least one of the neighbors was by his side 24/7. We literally watched this man disappear before our eyes. As the hours passed, more and more of his once-burly build would vanish.
Protective face masks, latex gloves and hospital gowns were required to enter the bedroom. Doctors feared that whatever he had might be contagious.
Friday, less than a week from when our neighbor went to lie down because he was tired, he left us. Grief and fear gripped us all. What kind of illness was this? Would we get it too? The widowed partner demanded answers from the doctor, but the doctor had no answers, only questions.
A few weeks later, the lease on the apartment was due. My roommate had accepted a job offer in Los Angeles and would be moving out. The overall mood of the neighborhood had become too somber and depressing. I packed my things and boarded a bus bound for Oklahoma.
Over the next eight years, the mysterious illness I witnessed in California would be identified as the “gay flu.” It was eventually renamed the “gay cancer,” but then it became known as GRID (gay-related immune deficiency). And finally, HIV (human immunodeficiency virus), and the advanced stage of HIV was named AIDS (acquired immune deficiency syndrome). I remained distanced from this new illness, since in my small North Central Oklahoma hometown we felt we were immune from the virus.
The big city was calling me. I relocated to Austin, Texas, on Valentine’s Day in 1984. It was everything I’d dreamed it would be. I made new friends quickly and had the time of my life. Without warning, in 1985, AIDS struck Austin with a vengeance. Over the next two years, I lost 34 of my newfound friends to the AIDS epidemic.
The news reported that AIDS was a “gay disease,” so I waited for it to take me too. Years passed, and I had not been stricken. The guilt of “Why not me?” that I’d felt during the first couple of years after losing so many friends slowly dissipated, as did my fear of contracting AIDS.
In 2012, I developed the flu. It hung on. At times, I was too sick to work. As a result, I found it difficult to keep jobs. The sicker I got, the further I fell behind on bills and my mortgage. In November of that year, I lost my condo of 20 years in foreclosure. My sister invited me to come stay with her in an Austin suburb. On November 29, I was weak and ill. I checked myself into the hospital. I collapsed before completing the intake paperwork.
Two days later, I awoke confused and dazed in a hospital room, tethered by plastic hoses connected to medical machines surrounding my hospital bed. A doctor diagnosed me with advanced Stage 3 HIV (AIDS) on, of all days, World AIDS Day.
It’s been over four years since my original diagnosis. I’ve been in and out of hospitals with a number of HIV-related complications. I’ve got a great infectious disease doctor. But through it all, I discovered myself and found a purpose to live. For two years now, I’ve been a local grassroots HIV/AIDS advocate. I live an open and transparent life to publicly exemplify the reality of living with HIV/AIDS. I’m a living and breathing example that HIV is not a life sentence. Locally, I publicly speak out on HIV education and advocate for improved quality of life for people living with HIV.
What three adjectives best describe you?
Positive. Driven. Compassionate.
What is your greatest achievement?
Living through the AIDS epidemic, which prepared me to pursue a calling to advocate for improving the quality of life for people living with HIV.
What is your greatest regret?
I regret that it took 35 years for me to realize my purpose in life. I wasted all those years when I could have possibly made a difference.
What keeps you up at night?
I hurt for those who’ve given up on life because of an HIV diagnosis. They’ve died inside, existing like zombies as they wait for death. I want to make them understand their lives are not over.
If you could change one thing about living with HIV, what would it be?
Internal stigma. That a positive diagnosis is not the end of life.
What is the best advice you ever received?
Never give up. There is always an answer.
What person in the HIV/AIDS community do you most admire?
Prentiss Douthit, ride director of the Hill Country Ride for AIDS, which is an annual fundraiser benefiting 10 local AIDS service organizations.
What drives you to do what you do?
A core strength from somewhere deep inside. A drive to help others find their inner strength.
What is your motto?
To be the human embodiment and a positive voice for HIV/AIDS.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
If you could be any animal, what would you be? And why?
A unicorn. It’s magical, beautiful and embodies hope and childlike wonderment.