November 8, 2013
Southampton, New York
Positive since 1987
After seeing Perry Halkitis on the cover of POZ’s September 2013 issue, I felt it was time to tell my story. My husband Brian and I are two of the long-term survivors interviewed in his book, The AIDS Generation: Stories of Survival and Resilience. Although I understand his desire not to name any of his subjects, I believe that anonymity can feed into the shame and negative stigma often associated with this disease.
So, let me begin my story. My life was largely defined at birth. I was born gay. I was born an alcoholic/addict. I was also born into an amazing family who has shown me unconditional love and support my entire life. Three other factors would change my life profoundly: 1) testing HIV positive in 1987; 2) getting clean and sober in 1992 and 3) marrying another long-term survivor in 2012.
I grew up with five siblings in a beautiful home in Westhampton Beach, NY. I fought my homosexuality throughout high school but was unable to control my alcoholism and addiction problem. By the time I was 17, I had tried every drug out there and was a regular black-out drinker. I still managed to get into Boston University and graduated in May of 1980.
Before facing the “real world,” I decided to spend one last summer in the Hamptons and worked as a lifeguard on the beach during the day and as a waiter at night. That summer I fell in love with a fellow waiter named Frank. After the third time I told my parents that I was spending the night at Frank’s, my parents sat me down and outed me with a great deal of love and compassion. They told me it was perfectly fine with them if I was gay as they would love me no matter what and they said that if Frank was important to me then they’d like to meet him and that he would be treated like family.
At the end of the summer, Frank and I moved to New York City and things were great. But things started to change in 1981 when young gay men started to die suddenly of an unknown disease. In 1983, we became very close to Eric Sawyer, who later went on to co-found ACT UP. Eric’s partner at the time was sick from what became known as GRID. I believe this was my first exposure to what would soon be known as HIV/AIDS. Frank and I split up towards the end of 1984.
In 1986 Jeff, a roommate from college, moved to Manhattan and we began dating. By this time, I had been to dozens of funerals and even witnessed the death of my dear friend Jay from an AIDS-related illness. Naively, I still believed it was not something that affected me directly.
Then on Valentine’s Day of 1987 everything changed when Jeff’s gift to me was an appointment to get tested for HIV at a clinic in Chelsea. In those days, results took two weeks; our follow up appointment would have been around March 1st.
I turned 30 on March 15th, 1987. Every year Westhampton Beach, the town where I grew up, has a St. Patrick’s Day Parade on the prior Saturday, and that year it fell on my 30th birthday. My brother Billy had decided to put a float in the parade to promote his company and to have me ride on the float as a mermaid. So that’s what I was thinking about when Jeff and I went back to the clinic to get our results.
Jeff went in first and his results came back negative. Since we weren’t practicing safe sex, I expected the same results. My mind was preoccupied with whether I should be a blonde mermaid or a redhead when the nurse came in and told me I was HIV positive.
When I started to cry, the nurse consoled me with these words: “Honey, try not to think of it as a death sentence, you probably have a year to a year and a half before you get sick and die.”
I remember thinking that I would make it to my 30th birthday since it was only two weeks away but that it would probably be my last. And that is the moment I went from a functioning alcoholic/addict to a completely out of control alcoholic/addict.
Six months later, Jeff told me if I didn’t get the help I needed for my addiction, he would leave me. My response was along the lines of, “I’m a dead man walking, why should I stop?” Shortly after that, he left me.
I spent the next five years in total denial, wishing I wasn’t gay, wondering why God would do this to me and all the while drinking and drugging every day unless I was too sick to do so. Then, one day in May of 1992, my gay boss came to my office to tell me he was taking me to see his doctor. By then, my disease had progressed to the point where the doctor told me that not only was I HIV positive, but I also had hepatitis B, cirrhosis of the liver, elevated liver enzymes and all of the signs of some who drank on a daily basis.
When I told my boss, he insisted I take a vacation. I booked a flight to Puerto Rico to visit my best friend, Alan, over a long Memorial Day weekend. On the last night there, after an evening at the gay bars, I ditched my friends and wound up in a crack house, smoking crack and snorting heroin to come down from the crack.
When I came to the next morning—wearing nothing but my underwear—I naively crawled to the only guy left in the room to ask where my stuff was. When my hands touched his cold, hard body, I knew he was dead.
My first thought was of a letter my sister-in-law Leslie had written me saying I was an alcoholic/addict and if I ever wanted the help I needed, she would make sure I got it. Right then I knew she was right. I could have been the one lying there dead. I swore I would never use an illicit drug again.
Instead, for the rest of that summer, I drank around the clock. My father put me on Antabuse, a drug that makes you sick if you drink alcohol. It didn’t even slow me down. My family organized an intervention with our local priest. He told me that my dad’s medical opinion was that if I didn’t stop drinking, I would die in six months. My reply? “Ok, then I’ll die because I can’t stop drinking.” And that’s what the priest told my family. I can still picture the tears rolling down my sweet brother Billy’s cheeks as he stammered, “But we don’t want Jimmy to die!”
One day in August, my best friend Eddie, who was dying of AIDS, took me to see Alison Gertz at her parents’ house on Dune Road. Ali had gone public with her HIV status and became a media sensation because of it. As she lay there that day, dying of AIDS, I found out all she had done. (Ali died shortly after that and her friends went on to start Love Heals, the Alison Gertz Foundation for AIDS Education. For the past 12 years, I have been one of their HIV-positive speakers.)
When we left her house, Eddie turned to me and said, “Isn’t it amazing what she has done with the knowledge of her disease? And look what you’ve done, you’re nothing but a drunk!” I cannot describe how much those words hurt, especially coming from my best friend, but I just couldn’t stop drinking.
Just before Labor Day weekend my former roommate and dear friend Eric called to say he was back in the hospital and needed me to come see him, as he most likely would not make it out of the hospital alive. I flew to San Francisco and walked into SF General Hospital to see yet another man in his early 30s who looked like a 92-year-old corpse.
When we were alone, Eric proceeded to tell me that if I did not get the help I needed, that I would be the next one lying on a death bed and it would have nothing to do with the AIDS and everything to do with the disease of alcoholism. He made me promise that no matter what happened that night that I would get the help I need. The next morning, the nurse woke me in the seat next to his hospital bed to tell me he had passed during the night.
A few days later, I flew back to NYC, packed up my stuff from my apartment and enrolled in outpatient care at Seafield, a drug and alcohol rehab on the street I grew up on. But I continued drinking.
Around the first of October, my friend Alan called from Puerto Rico to say he had tested positive for drugs for the third time at work and had to go to an inpatient rehab. He was able to get a bed at Seafield for Monday, October 5th and was wondering if I would go in with him and if he could spend Sunday night at my parent’s house with me.
On Saturday October 3rd, there was a big party at my parent’s house. The next day, with Alan on his way to New York, I finished off all the alcohol left over from the previous night’s party. When Alan arrived, he took one look at me and said, “Pack your bags, you’re coming with me tomorrow.” And I did just that.
The next Sunday, I had a spiritual awakening in a little chapel on the grounds of the rehab while the Reverend was reading quotes from the bible. A female voice I had never heard before said inside my head, “Jimmy, you never have to drink again.” I knew that voice was not mine but I also knew it was the truth.
For the first time since I tested HIV positive, I cried. I left that rehab a different man. A man living in God’s embrace, equipped with all the tools I need to live a sober life and with the conviction that I could no longer be silent about my diseases.
Since then, I have remained clean and sober and have talked about my diseases every chance I get; through AA and NA, Love Heals and in my blog on TheBody.com. I spread a message of hope for both diseases as well as doing my part to end the negative stigma associated with both diseases. The most important thing I learned in rehab is: "You are as sick as your secrets." So I have no secrets because I have no shame associated with my diseases and believe they were a gift from God to open my eyes and see life for the gift it is.
On 11/11/11, I met my husband Brian, and on Valentine’s Day 2012—exactly 25 years after I tested HIV positive—we got engaged. Brian was another warrior who had survived not just AIDS and alcoholism but had recently survived cancer and was all the stronger and wiser because of it. We married on August 1, 2012 in Southampton and honeymooned in the Galapagos Islands.
In December 2012, we did the annual Southampton Polar Bear Plunge together. I was a mermaid and Brian was Neptune. We spend our time between Southampton, Oyster Bay and NYC.
What three adjectives best describe you?
Positive, sober and gay
What is your greatest achievement?
The realization that without God, I would have achieved nothing. God did for me what I could not do for myself.
What is your greatest regret?
That too many of my friends died before HAART and that so many continue to die from both AIDS and alcoholism/addiction.
What keeps you up at night?
Nothing. I sleep soundly knowing there is a God who watches over all of us.
If you could change one thing about living with HIV, what would it be?
The negative stigma associated with the disease!
What is the best advice you ever received?
Let go and let God. You are as sick as your secrets.
What person in the HIV/AIDS community do you most admire?
Ali Gertz and all of the Love Heals speakers. All the people who had the courage to make a stand and fight for a cure early on when all I could do was drink and do drugs.
What drives you to do what you do?
All of the people who are less fortunate than me, who died of AIDS-related complications and those who suffer from the symptoms and the negative stigma associated with it
What is your motto?
Let go and let God. You are as sick as your secrets so don't have secrets!
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
Assuming my husband Brian was with me, we would each grab one of our dogs.
If you could be any animal, what would you be? And why?
My dogs Scooby or Baxter because we spoil them!
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