Diagnosed in 1988
I was infected with HIV somewhere between 1977 and 1979, because I seroconverted in late 1979. I was graduating from Rutgers University College and was moving to San Francisco with my partner at the time. He was the one who infected me. I know this because I was monogamous during our entire relationship, until it ended in a horrifying emotional disaster. He was bisexual and a sexaholic, and, unbeknown to me, he was also a hustler. He was twice my age and I trusted him completely.
When I seroconverted, I was taken to Davies Medical Center in San Francisco. I was placed in a ward with dozens of other gay men who had similar symptoms: vomiting, diarrhea, migraines and dehydration. I was given four lumbar punctures to see if I had meningitis but the tests were always negative. I was eventually released after two weeks and recovered.
My emotional crisis came months later when I found out my partner’s true nature. I left San Francisco for my family’s home outside New York City. I watched the news and read the New York Times article about the new ‘gay cancer’, but when the first HIV test became available, I did not take it. I was completely in the dark about my status until 1988. I was generally healthy, but during those long eight years I was always just a bit under the weather. I finally took the test and my worst fears were confirmed.
In those first years of being a ‘walking dead man’ (so I thought), I thought there was no reason to anticipate new movies or TV shows or books, because I would soon be dead. My social life came to an abrupt halt and I became a shut-in except for going to work and the grocery store. Then my best friend in San Francisco died and I knew I needed help to get through this crisis. I began therapy, which did not end until the summer of 2012. It was very hard.
In the early ’90s, I developed scar tissue lumps in my saliva glands. There was a new risky therapy being studied at Mount Sinai Hospital and St. Vincent’s Hospital in New York City. My doctor was able to get me into the study, and I was the second person to have the treatment in the world. It consisted of gamma radiation treatments every day for two weeks. I was still working full time, but my company understood that I was going through radiation treatments and was generous enough to let me leave each day around noon. They even paid for a car service to get me safely home (the risk of collapse was very great, but I never did).
After the two-week treatment, my ‘chipmunk cheeks’ were gone and have never returned. The lumps were a side effect of the HIV—either from the virus itself, or the large doses of AZT I was taking at the time. AZT made me so nauseous, I constantly took Dramamine for the queasiness. The lumps were gone and the therapy was helping me deal with my grief for the loss of my best friend and gave me the ability to wrap my head around my illness. I got out of the house more and soon my life returned to close to normal.
But the meds soon began to fail me and I was switched to a newer regimen as new drugs came on the market. To date, I have been on 13 drug cocktails. The last one has worked for almost four years. That’s a record in my book.
I developed AIDS in the mid ’90s after developing the markers of the specific opportunistic infections. Today, my viral load is undetectable to the best of the present technology, and my T-cell level is over 600—the highest it’s ever been. In those early years, I tried all sorts of alternative medicine: traditional Chinese medicine (various brewed teas) mixed with other treatment; acupuncture; osteopathy in association with chiropractic treatment; intense vitamin and mineral infusions; and others I’m sure I’ve forgotten.
During that time I was well enough to work my full-time job, as well as do graphic art freelance work with ACT-UP and the Heritage of Pride in New York City. I was also as a speaker for Body Positive, an organization that helped those who had just found out they were HIV positive.
Eventually it all wore me down and my primary physician told me I would have to stop and start living a less stressful life, or die, because my body was wearing down too fast for the drugs to work. So, I left New York City and moved to Seattle with my then-partner. We bought a house and had a very codependent life together. He also had AIDS and was retired. I couldn’t find work in my field as an art director but found some part-time work. I had gone on SSDI (Social Security Disability Insurance) in 1996 and as a result, I could not work full-time.
Since then, I have moved three times and acquired the love of my life, an Australian Shepherd, who gives me complete unconditional love. I also rescued a feral cat. They live together in a carved-out harmony just about as you’d expect.
I live a happy life: I write fiction; I read voraciously; I watch old movies (and some new ones); and am amazed that I have outlived three sets of friends (one in San Francisco and two sets in New York City). I do not know if I am luckier, or just well preserved from all the junk food I ate as a child. Whatever the reason, after all I’ve been through (including a quadruple bypass heart surgery at the age of 48), every day that I wake up breathing is a good day.
What three adjectives best describe you?
Creative, loving, positive
What is your greatest achievement?
Finishing my first novel; overcoming chronic depression at the age of 55
What is your greatest regret?
See above: that it took as long as it did
What keeps you up at night?
Concerns over lack of money
If you could change one thing about living with HIV, what would it be?
Not having it
What is the best advice you ever received?
Do not consider your problems to be enormous or overwhelming, because that makes your progress forward impossible.
What person in the HIV/AIDS community do you most admire?
Larry Kramer and Peter Staley
What drives you to do what you do?
To see what’s just around the corner
What is your motto?
Live! Live! Live! from ‘Auntie Mame’
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My pets, everything else is just material goods
If you could be any animal, what would you be?
A black swan
Robert Seth Vorisek