GCAB member
My journey into HIV/AIDS began in 1985 as a Buddy Volunteer. Giving respite to families caring for loved ones, men, dying of AIDS in the hospital. We were supposed to “glove-up”: wear biohazard paper uniforms BEFORE going into the hospital rooms. With the buddies’ permission, I’d discard the garb, it looked frightening and was counter intuitive. I’d also bring in the food tray left outside their hospital door. Such was the fear and ignorance. Back in the stone-age, there was one drug: AZT. Since then, the science of managing HIV infection has made game-changing strides, but I digress. After losing my 5th Buddy to AIDS I left the Buddy Program.
The Summer of 1988 I had an Exorcist-like sero-conversion event: when your body is overwhelmed by the virus. Temperature over 104 degrees, literal drenching sweats, projectile vomiting…you get the picture, right?! Two weeks before my 30th birthday while awaiting my much-delayed B.F.A. degree in the mail, I took my HIV test at a local health clinic, under the nom-de-plume “George Herbert Walker Bush”. The intake nurse said, “Oh my! You’re like the 5th GHW Bush!” Just days before my 30th birthday, I’d received my diploma, and I was told I’d tested positive for the HIV virus. I can remember the post-test counselors’ pearl earrings, her navy-blue pants suit and the “Wah-wah-wah” of her voice like the teacher in “Peanuts”. She was giving ME all the encouragement I’d given others. I put my hand up; said, “Thank you.” and took the drizzly, rainy-day path home alone.
As I walked into the apartment, I fell onto my knees keening, “No one will ever love me!” I knew how and who I took HIV from. I say “took” because I knew how NOT to acquire HIV. I didn’t use my common sense nor a condom. Not blaming the guy. It takes two to tango.
A nurse friend [may he rest in peace] encouraged me to enter the Concorde Study for AZT at Ohio State University Hospitals, with Dr. Para. They’d monitor my t-cells and such. Insurance would never know; it was all anonymous. Otherwise, they could cancel my health insurance.
T-cells under 200; several opportunistic infections later; my doctor who had a significant HIV clientele, told me, “Knowing what we know now (1989), you should think about going home and getting your final papers in order. You have about two, maybe three years to live.” F**k. Onto Social Security Disability. So, I came home “to die” and, coining a phrase from “Auntie Mame” [the one with Rosalind Russell. The Lucille Ball version was awful]…”I lived!” But, I digress again.
My body was able to hold on long enough to get early access to the real game changer announced at the Vancouver Conference: protease inhibitors – Crixivan! It worked. I lived. T-cells over 500 and viral load undetectable for 10+ years!!
My volunteer resume is as long as my thin arms. In hopes of possibly meeting a like-minded boyfriend while serving MY Community, I’d volunteered with our local LGBT Center’s “The Living Room” – an HIV/AIDS drop-in center. We had listings of dentists, doctors, funeral homes, etc. Volunteered six years on our Ryan White Planning Council and three associated committees; came out HIV+ to the public in a few newspaper articles and on the TV. Participated in AIDSWatch2002 in Washington D.C.; MSNBC: Summit For A Cure. I’ve received several awards and had dozens of op-ed pieces published. I’m now the Chair for our local ACTG at Case/University Hospitals. I have been blessed to have traveled to Paris, twice; I’d searched for four years and finally located, long-lost family in Budapest, Hungary. Profoundly blessed to have visited twice and stayed in our ancestral village home.
Now, all I want is The Cure and my friends back. I’d stopped counting after 140+ friends/acquaintances died. I am blessed in that I am #stillhere. Single and ready to gently mingle. I’m a sexual abuse, heart attack, Kaposi’s Sarcoma cancer and stroke [t.i.a.] survivor. Like many other long-term survivors, I have acquired a lot of pretty D.P.S. [Dead People’s Sh*t], ahhhh, there’s that gallows humor. I live on a limited/fixed income. I have a cat. Last words advice for those who’ve recently acquired HIV. Breathe, you’re gonna’ live. Write out a Plan for Living and follow it.”
Forever hopeful,
Robert Toth