by Mark Segal
During the height of the epidemic, I was watching TV at home one night and a show on PBS got my attention. It was called, simply, Plague. It explored various plagues throughout history. For me, the one takeaway from the show was that most plagues last about twenty-five years. So I began to hope that by 2005 or 2006 we’d be at the end of AIDS.
Soon after watching that show, the AIDS drama hit home in a very personal way. There had to have been some clue to the change in my partner of twenty years, that guy who always joked that he wanted me for my potential to make money, but I hadn’t noticed. One night at dinner he said with a tentative smile, “There’s something I have to tell you.” It wasn’t long before he began to cry and told me he “has it.” I knew exactly what “it” was. Stunned, sitting there frozen, the seconds seemed like an eternity until it finally sank in. We embraced, and I whispered in his ear, “We’ll get through this.” Even with this painful disclosure hovering in my mind, I knew we were going to somehow make it through.
That night, the answers to the questions I asked were not reassuring; he said that I was the seventh person he had told. What? He explained he hadn’t known how I’d react. That was hurtful. After twenty years, he didn’t know me!
While I was attempting to stay calm for his sake, inside I was torn apart. Was our twenty-year relationship just a show? I was furious and began to believe that I had somehow let him down. Had I also failed the community? I don’t believe I’ve ever had so much anger inside but I couldn’t allow it to explode. There was no sleep for me that lonely night.
This was also the night before I was scheduled to host Mayor John Street on his first venture into a skeptical LGBT community. Though Street hadn’t been our ally while serving on the city council, he was making a public statement of his switch to now supporting LGBT rights by having a full-scale tour of the William Way LGBT Community Center, with press in tow. I knew that by leading this tour, I’d be ridiculed by some in the community, but I also knew that Street, as mayor, could make a difference. It was important that I be focused that night. I had twenty-four hours to get my head straight, but the hurt remained palpable. My partner had told six other people of his condition before me, and chose the night before a major press event to share the news.
* * *
The tour was somehow going really well, and after taking in several rooms and having a demonstration of the computer-learning center, we came to the ballroom. At that point, acting out of pure impulse, I asked the executive director of the community center to continue the tour without me, saying that I’d catch up later. I pulled the hand of someone who I knew could help, and the two of us stayed behind while the press junket moved on. In an empty ballroom I looked at Jane Shull and blurted out, “He has AIDS, what should I do?”
Jane, president of Philadelphia Fight and cochair of AIDS Awareness Day, was a strong woman, politically smart, and one of the most knowledgeable people on the subject. She shot me a nice smile and said: “Let’s finish this up, and we’ll get to it.”
As the tour continued, questions wound around in my head. Questions I hadn’t asked or thought to ask. How did it happen? What was his viral load? How do we tell his parents and my nephew Jeffrey, who was living with us? Should we tell him at all? What should I prepare myself for? What care procedures will I need to learn? The questions never stopped, but somehow no one noticed. I went on talking to people, discussing the evening and how the mayor could help us as a community. I was on autopilot, which was my fallback position when overwhelmed.
After the tour was over Jane took me aside and said, “Have you cried yet?” This sounded so strange, but Jane knew what she was talking about; she had been through this many times before. In a flash I realized that I hadn’t, and then the watershed began.
As the city’s foremost expert on the subject, Jane knew that there were a number of issues to deal with, both medical and psychological, regarding our relationship. Her next question was one that hadn’t even occurred to me: “Do you want to continue the relationship?” How could I not continue the relationship? Me, I’d deal with it like I did with everything else that had been tossed my way.
In short order, my partner and I became clients of Philadelphia Fight. At our first visit, the counselor asked me, “Have you been tested yet?”
That hadn’t dawned on me either. I scheduled a test with Karam Mounzer, one of the doctors who dedicated his life to help fight AIDS. Getting tested wasn’t a new experience for me, but this was different, as the closest person to me now had the disease. The test was negative.
When it became public knowledge that my partner was HIV positive, things went from bad to worse. While most friends were supportive, a number urged me to leave him, saying things like, “Do you realize he’s put your life in jeopardy?” It also spurred on friends to tell me what they knew about him, most of which I had earlier refused to believe, chalking it up to idle gossip. It soon became apparent that he had a secret life I had no knowledge of.
He needed more than what Philadelphia Fight could offer; as the months went on his drinking became worse, and friends told me to wake up and confront my denials. Instead, I did what many people do—blame myself—all the while not realizing what was happening around me. He would openly hurl insults my way, giving venom to a previously humorous line of his—“I always told you the only reason I married you was for your potential to make money.” He now told me that it was the only reason he had stayed with me. He bragged about his recent infidelities and reminded me of past ones that I had forgiven or tried to forget. He began to confess all facets of his life, a life alien to me, and to viciously ridicule my person. A friend told me I was in an abusive relationship. It broke me, and then rage set in when I discovered that little has been studied about abuse among same-sex couples. Anger, depression, and self-doubt took over my life.
How my nephew Jeffrey made it through this time I’ll never understand. As I write this, I’m full of sorrow for putting him through it and realize how much he loves me to have stuck by my side all these years. Some of my friends were not so loyal. To them, I now apologize. I apologize to all my friends whom I didn’t believe.
The end came the day I picked him up from yet another stint at rehab. I believe it was his seventh time. We got home and before dinner he already had a glass of wine in his hand. Denial had ended. Calmly I spoke the words, “It’s either the wine or me.”
He threw the wine at me and was out the door. Later that night, Jane Shull called to tell me that he was at one of her fundraisers, drinking and happily telling people that we were through. She asked if it was true. The answer was yes. It would be great if I could say that life went on, but for me, after a nearly twenty-year relationship, it felt like life was over.
I was about to see bottom, thinking that I’d failed myself and the community too. I could no longer claim that we’d have a normal, long-lasting relationship like some of our straight counterparts, like my mom and dad. In hindsight, I know that every relationship, no matter what kind, is different. But I felt that I had something to prove, from my early days of activism; seeing my parents’ and their friends’ happy marriages . . . until the end, so happy.
Friends tried to help pull me out, but I built a brick wall around myself. Instead of going to the office, I’d spend days holed up in my house on the Jersey Shore, which I had bought a few years prior. Jim Austin had been correct: I could earn a living as a publisher. It became real to me in 1994, eighteen years after the first issue. We had steadily picked up advertisers and circulation climbed. I had wanted to rent a house at the Jersey Shore for the summer and didn’t know if I could afford it, even with others sharing the cost, so I called my accountant and asked if I could do it. I essentially pleaded with him that I needed some time off. He laughed and explained that for the money it would take for a summer rental I could make a down payment on a house and it would serve me well each year with taxes. He also suggested that I give myself a raise, and for the first time in my life I ac
tually felt middle class. Walking into the house for the first time, I felt great pride. Things were beginning to get a little easier, to the point that I was able to purchase a house—rather, a shell of a house—in what was becoming a gentrified neighborhood. Indeed, I gentrified it, as the first non–African American on the block. It had one of these bathtubs with the four legs, but one of the legs was missing so when you took a shower it sometimes felt like you were surfing. It actually fell through the ceiling at one point, and we then used it in the kitchen. And when the dining room ceiling plaster started dropping one day, we covered it with egg cartons. The house was falling apart, but it was mine.
But now, after the breakup, I used that house as a place where I could drink in excess and take various prescription drugs for sleeping or depression. I wouldn’t even answer the door when my friends Larry Furman and Dennis Cook, who had a house at the Shore a few blocks from mine, came by to check on me. Soon it didn’t matter which pill it was or how many. I’d come undone.
It was Pattie Tihey, our editor, and Rick Lombardo, my assistant, who kept PGN afloat during that time, as I was useless to the publication. Convinced that my ex-partner’s problems were my fault, I had taken an emotional beating and internalized his scathing remarks.
* * *
I stayed in that fog for over a year, until one day Pattie stormed into my office and said she’d had enough. “This has gone on too long. You have responsibilities. This publication which you founded supports fourteen people and their families.” She then added, in understanding some of what I was feeling, “That is success!”
Get up and get on with it was the message I received.
Patti urged me to get help; she even suggested several psychologists. As always, she was prepared, and her words about supporting fourteen people became my new guiding light.
Seeing a psychologist set me at ease. “Tell me about your last twenty-five years.”
Thinking for a minute, I said blankly, “Death, suicides, AIDS, the breakup.”
She looked at me for a few moments, remarked at my lack of emotion, and then asked whether anything positive had happened. There was nothing in my mind. Empty. Then she had me tell the full story, sparing no detail.
My last twenty-five years had included my mother’s death from kidney disease, Grandmom’s Alzheimer’s and ultimate death, Uncle Stanley’s gambling and death, the suicides of my friends Jan Sergienko (after a gang rape), my friend Carol (after sexual abuse from her husband), my friend Michael (after becoming fed up with medical treatments and watching his own deterioration from AIDS), and my former sales manager and close friend Sally Tyer (who after a bad business deal shot herself in the head). Then there were the AIDS deaths, chief among them my friend Bill Way, and the numerous funerals that were left for me to plan. Then there was my failure as a partner. All relayed in a stream-of-consciousness monotone.
She had one more question: “Did you ever cry?”
I took a long pause before I replied, “We had a demonstration at the city council where we disrupted the session and I took over the president’s desk, tossing the papers in the air. The police were called in and it became rough. Several of our members were hurt. The TV reporters rushed me and there were tears coming down my cheeks. In an emotional state, I said on camera that our people are being hurt. Later, a few friends told me sternly that I should never cry during an interview, that it was unmanly.”
She didn’t judge me, instead asking me to keep relating my life story. Soon I was in tears, hysterical uncontrollable tears; surprisingly, so was she.
Afterward, she stated the obvious: “You need to get in touch with your emotions and stop covering them up.” She also encouraged me to meet with a pharmacologist.
That was the first time I’d ever heard of such a profession. Those two hours with the psychologist were perhaps the best investment in myself I’d ever made. Without her, along with the other key people mentioned above, I’m sure my life would not have had any more chapters. Jane and Dr. Mounzer got me the help I needed, and Pattie and Rick kept the newspaper moving, even hiding the fact that I wasn’t at the wheel.
This story isn’t unique; it was common to many gay couples when one partner was diagnosed with HIV. Like others, it took me years to accept the situation and move forward, and that is another lesson that those of us affected by HIV/AIDS had to learn. PTSS is real.
By that time in the mid-nineties, the pharmaceutical industry was competing to see who could come up with the best regimen of pills, or “cocktails,” to manage the disease. HIV was on the road to being treatable—just like that PBS show had promised—but it couldn’t be cured. Those cocktails did indeed work and they have been improved upon. Now there are pills advertised to prevent a person from acquiring HIV. But there’s no telling what effect these new pills will have on younger people, if they’ll simply forget the lessons we learned and deem themselves invincible. Will we see the return of Fire Island circuit parties—no air of caution and no end to the high? With medical advances in prevention, will those who already have the disease be alienated and forgotten? Even after we’ve gotten through the worst of it, the work of educating people is not over. Not by a long shot.
Chapter 9
Clout
In 1993, Philadelphia magazine named me the resident with “Most Clout” in their annual Best of Philly issue, crowning me above union leaders, corporate heads, and elected officials. By this time I had been in the public eye for nearly twenty-five years. It wasn’t a quick rise, and the clout they attributed to me was garnered out of necessity. Any social justice or civil rights movement needs not only to understand the politics swirling around, but also to have insider clout. Change does not happen without working the system.
One can develop clout from a number of factors, like building coalitions with other communities, organizations, and leaders. Other important facets are the ability to raise funds and deliver votes, and being able to stop a candidate dead in their tracks. And the simple fact is that to get a large program on the boards or to get any sort of legislation passed, you need to be in tune with elected officials, both those who support your issues and those who don’t. Knowing how to navigate the latter may indeed be even more important. One last item is getting the attention of media. Today, that means having an understanding of the power of both traditional and social media.
Two organizations that prove this point and deserve recognition for a job well done are Lambda Legal Defense and Education Fund and Freedom to Marry. They get it. They know how to spend funds wisely and use media to their full advantage. Evan Wolfson, founder of Freedom to Marry and formerly of Lambda Legal Defense and Education Fund, is a community treasure: he is bright and articulate, and understands how to create a message that the public can consume. He has been creative with his approach, and no one can doubt that it has worked. Like many activists, he was ahead of his time and kept to his vision, no matter the opposition in the community—and that has a place in my heart.
The LGBT national all-star team also includes the Human Rights Campaign, which exemplifies the slogan that money and media are the mother’s milk of politics. It takes funds to elect candidates and launch campaigns that change public perception.
Each time I hear a complaint about the lobbying efforts of Human Rights Campaign, it makes me want to hurl. While one might disagree on the issues, HRC is excellent at raising funds and using those funds to lobby, which is simply playing the game, and playing it correctly. You have to be in the game to win it.
Another member of the all-star team is the Victory Fund. Cofounded by Vic Basile in 1991 to support and groom politicians for LGBT equality, and later infused by the incredible energy of Brian Bond, the Victory Fund raises money and teaches people the fundamentals of campaigns. Their efforts have led to scores of victories around the nation. Both Vic and Brian became important members of the Obama administration and have helped shape the path of LGBT issues, providing a blueprint for future administrations to f
ollow. Human Rights Campaign and Victory Fund can take a bow for the work they have done with Barack Obama to make him the most inclusive president in our country’s history.
Along with money and organization, an additional path to clout for our community is to have a mainstream media watchdog, which has largely fallen to the Gay & Lesbian Alliance Against Defamation. GLAAD has had a few bad years but they’re getting back on their feet. The low point for them (and Human Rights Campaign to a lesser extent), and our community in general, was the Chick-fil-A disaster. That campaign will also be a blueprint for gay activists—of what not to do.
The quick story: It was discovered that the Chick-fil-A Foundation was giving money to anti–marriage equality organizations. Some LGBT groups and bloggers went off the rails. The Human Rights Campaign and GLAAD, however, were caught off guard; the LGBT community and the marriage equality bloggers were angry, but they were given no direction from our leaders. They grew frustrated, and many began to ask where HRC and GLAAD stood on the issue and what countermeasures should be taken. With no apparent plan, the organizations simply issued press releases about the facts, without offering any leadership of what to do next.
The LGBT community ultimately had to find its own answer, which entailed a national kiss-in at Chick-fil-A restaurants all across the country. Unfortunately, this resulted in perhaps one of the best business days for Chick-fil-A. Our equality was reduced to kissing, we looked weak and silly, and opponents staged a Chick-fil-A appreciation day, which drove more profits to the chain.