Lakewood, OH
Positive since 1988

I became involved with HIV/AIDS as a buddy volunteer in Columbus, Ohio in 1985. I gave respite to caregivers of people living with AIDS who were hospital-bound. In those days—at least in the Midwest—we had to “gown-up” before going into a room. We had to wear a hair net, gown, rubber gloves, foot covers and a mask. It must have been very frightening for the people and their families. Food trays were routinely left at the hospital doors. We (myself and/or family members) were left to feed the individual in need. After I lost my fifth client, I took a step back from buddy volunteering.

In the summer of 1988, I had a very dramatic seroconversion event (when the body fights HIV and goes from being HIV negative to HIV positive). I knew what “night sweats” and projectile vomiting felt like. It was frightening. I also “knew” I was HIV positive. As I lay in my wet-with-sweat bed, I thought back. I knew who and how I became HIV positive.

I got my HIV test results under the name G.H.W. Bush at a local free clinic. I remember the lady telling me I was HIV positive; I remember hating her little pearl earrings, the navy blazer she was wearing and the small, unkempt room. Her post-counseling talk was rather like the teacher in Peanuts cartoon: “wah-wah-wah-wah-wah.” I sat numb in the office. Then I silently walked the long, rainy path by the river to my home.

Luckily, I knew a nurse in Ohio State’s University Hospital. I was enrolled in the Concord study for AZT. I soon got what I’d call the “AZT bitchiness.”

I moved home to Cleveland in 1992 to be with my family. I developed a Kaposi’s Sarcoma (KS) lesion on my back. The doctor did a biopsy to confirm it. I had 21 T cells and I now had AIDS. It appeared my “you’ve maybe got two good years” talk from the clinic doctor was about to become true.

I was very ill and was losing weight. I needed help doing daily activities and I was on disability. Then through my doctor at the Cleveland Clinic, the drug Crixivan became available to me. The “Lazarus Effect” was profound. My T cells soared. I was recovering.

I decided I had to do something to give back to my community. I volunteered at our local LGBT Center’s Living Room, an HIV/AIDS drop-in place. I brought back the House Calls program: Doctors, social workers, dentists, pharma reps, etc. would talk about what’s new in HIV/AIDS treatments and side effects over dinner (the free food literally got many people to the treatment table). It added a sense of community.

A few years later, I re-invented myself and became involved with the local Ryan White Title One HIV Services Planning Council. I also became more vested in being a partner with my doctor in my HIV care. We made medication decisions together.

I also became involved with the Ohio AIDS Coalition’s Healing Weekend events. These events were for people living with HIV/AIDS to meet one another, relax and learn new strategies in medication, adherence, food choices and preparation and how to avoid or deal with side effects. It was also a time to just talk with other people living with the virus. This was especially important to those who were living in the rural parts of Ohio.

I also attended a few AIDSWatch events in Washington, D.C. where we’d lobby Senators and Representatives that would take the time to listen to us. The late Rep. Stephanie Tubbs-Jones from Cleveland was one such leader. She was a powerhouse and a force to be reckoned with. She is missed.

In addition, I sat on the Capacity Building Initiative for our local AIDS taskforce in Cleveland. After our local HIV Council became a consortium, I took a step back from my HIV/AIDS volunteer work. I became involved with our local gay men’s chorus (I had no idea I could sing). For five years or so, I was the public relations chair and sang baritone. It gave me great pleasure. When you’re singing, there’s no time to think about HIV. The chorus gave me the chance to sing on-stage with the Cleveland Jazz Orchestra, Michael Fienstein in The Palace Theater, at Playhouse Square with Bernadette Peters and in Cleveland’s opulent Severance Hall with Linda Eder. I even got to meet Armistead Maupin! I have since bowed off stage. I met and lost too many friends.

I am in the process yet again of another re-invention. After all, I’d like to give back what I can while I can. For now, I’m taking care of myself—after a mini-stroke, a car accident, a mugging at gunpoint and a heart attack—I feel I’ve earned it. But I’m still very much open to something new in HIV/AIDS. I continue. I thrive. I am alive and loving the snow.

What three adjectives best describe you?
Survivor, thriver, activist

What is your greatest achievement?
Staying alive 23 years longer than expected and turning 55! Woo-hoo!

What is your greatest regret?
Not loving when love was given

What keeps you up at night?
What am I going to do next!

If you could change one thing about living with HIV, what would it be?
Not have it. Failing that, having no stigma related to HIV/AIDS—especially within the gay community

What is the best advice you ever received?
Think positive thoughts!

What person in the HIV/AIDS community do you most admire?
David Feldt, may he rest in peace

What drives you to do what you do?
I’m still here for a reason—and I’m still waiting for ‘the memo’ (you are here to do x-y-z)

What is your motto?
F**K them if they can’t take a joke. And I’m here for the day of the cure!

If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My cat

If you could be any animal, what would you be? And why?
A cat. Because who doesn’t love to pet a sweet, furry animal that purrs?