If someone had told me when I sat across from the public health official who told me I was HIV positive in an icky green-colored room back in 1992 that I would someday write a column about what it was like living with this disease, I would have told them they were nuts.
Foremost, I would not have believed that I would be alive in 2011 as a healthy, happy freelance writer for this publication I adore.
Back in 1992, the only medication that was approved for treatment of HIV was AZT. It wasn't a good drug. To say it was ineffective would be an understatement. It did little to actually treat the disease. It made me really sick and it made me horribly anemic.
And so, I went to the best HIV specialist in the Tampa Bay area at the time, Dorrie Norris. I remember my initial meeting with Dorrie where I asked her at 31 years of age if I would live to be 40.
â┚¬Å”Honestly, Greg, I don't pull any punches with my patients,â┚¬Â she told me. â┚¬Å”If you want things sugarcoated you need to find another doctor. My response to that question from my best medical perspective is, â┚¬ËœProbably not.'â┚¬ÂÂ
I was in my early 30s with my whole life ahead of me. I had a wonderful, loving partner at home and I was making $70,000 a year at a great job. But here I was, listening to my doctor telling me I had â┚¬Å”maybe three to five years at most.â┚¬ÂÂ
About the same time my partner also tested positive. We've never figured out who gave it to whom. Does it really matter? At least I had someone who knew and could relate to what I was going through.
Our lives over the next few years became all about living life for the moment. We traveled to Tahiti, Aruba, Costa Rica, and Puerto Rico. We bought all the most expensive furnishings and things we wanted for our home. If we had to pack 40 or 50 years of living into the next three to five, then â┚¬Å”what difference did it makeâ┚¬Â if we charged up huge credit card bills.
We were going to be dead when the bills came due anyway.
I made the decision early on that I was going to keep my status secret from my family and most of my friends. I thought, perhaps rightly so, that I just couldn't deal with the stigma that seemed prevalent at the time. I was an only child and only a few years earlier we had lost my mother to breast cancer. I couldn't face telling my father that his only son and the other survivor of our family was also going to die tragically I surmised that there was no reason to burden him with that knowledge until I got sick. It was a decision that stood until 2009.
No one knew. My dad, the rest of my family, even some of my closest friends didn't know. I carried that knowledge and the burden of dealing with meds, doctors, lab tests, hospital stays and side effects all on my own. In retrospect that probably wasn't a good idea.
I am also a recovering alcoholic.
In mid-2009 I worked as the executive director of St. Pete Pride, an organization I helped found. But my health was not exactly condusive to the rigors of producing a celebration attended by tens of thousands of people.
HIV saps your strength and stamina no matter how good your counts are or how good your health appears to be to outsiders. In the end it proved to be too much for me and I left the organization. That played hard on my psyche and I had a nervous breakdown and a catastrophic relapse where I drank 15 bottles of vodka in 12 days and ended up in the hospital for five days.
I mention this because that experience forced me to take a hard look at a lot of things in my lifeâ┚¬â€Âmy â┚¬Å”secretâ┚¬Â HIV life being one of them. I decided it was time I â┚¬Å”came outâ┚¬Â to family and friends, and I began asking them for help and support. Much of what contributed to that tough summer was the burden of carrying this disease around all by myself. It finally caught up with me. I had to make significant changes in my life or I would drink again. And for me, to drink is to die.
I started with my Quaker congregation. I shook when I did it, but I stood up in Quaker Meeting one beautiful fall morning in 2009 and told my fellowship that I was HIV-positive and I needed their help, especially spiritually. The power of prayer and their on-going commitment to me and my health has since proved invaluable.
That evening at home I picked up the phone and called my father. That was one of the hardest conversations I've ever had. Then more phone calls to other family, then to friends.
The reactions were amazing. There were no judgments at all. Everyone I spoke to said they loved me and asked me how they could help. The love and support demonstrated by everyone blew me away.
Now, I'm coming out to the readers of Watermark. It's a bit daunting, but also exhilarating because now I feel like I can live my life openly without all the secrets and lying.
I wouldn't say my experience makes me an â┚¬Å”expertâ┚¬Â on all things HIV. But I have learned a lot in the almost 20-years of positive living.
It is my hope that by me being so open with this dialog that we continue to bring HIV out of the shadows and into the sunlight of understanding, compassion and hope.
