To Be Continued….
Lillibeth Gonzalez, a long-term AIDS survivor, used her pain as a stepping stone into her “golden” years
by Candace Y.A. Montague

Photographed exclusively for A&U by Sean Black

When you see a vivacious woman like Lillibeth Gonzalez smiling, laughing, hugging people, engaging in lively conversations with multiple strangers you may admire how positive she is. You may think that she has the world on a string. And maybe she does. But still waters run deep. A woman like Lillibeth has paid her dues in heartache and tears to get where she is today. She has given until it hurt and has taken more than her share of blows in her lifetime. Yet here she stands self-assured, content, and amazing. Her story is a living testament of how a diagnosis won’t break you when you’re surrounded by love.

When love hurts
Lillibeth Gonzalez is a native New Yorker born to Puerto Rican parents on November 20, 1954. Life for her on the lower East Side of Manhattan was turbulent at times but no doubt an experience that built her fortitude. Her father was an abusive alcoholic. He gave her mother and three siblings a “terrible life,” which meant a lot of transitioning from home to home. In spite of family issues, Lillibeth prevailed. She graduated from high school determined to make a better life for herself. That good life included education, a thriving modeling career and love. Only one of them worked out well. “I went to college and studied management engineering. Then I met a lawyer and he wanted to marry me. He was a very good man. I was like his China doll. But then I fell in love with someone else and things did not work out.” Love “ruined her life.” She grew depressed, quit her eleven-year career as an assistant at Gouvernor Hospital and dropped her modeling career.

Self-medication, the risky practice of attempting to eradicate physical and emotional pain without professional guidance. It’s a natural human reaction to an affliction. When something hurts you try to make it stop. At age twenty-seven, Lillibeth was hurting and she tried to make it stop. She tried with alcohol. She tried with drugs. “That was my therapy from losing my job, my modeling career and not being able to cope with my problems. I didn’t want to have to deal with reality.” The drug use came to a halt in 1983 when she found out that she was pregnant with her son.

Another thing about pain is that it makes you tired. After many years of drug misuse, Lillibeth was tired. She wanted to protect her unborn. She joined a treatment facility and started MMTP (methadone) treatment. It lasted thirty-one years. But then fatigue slipped in again. “Let me tell you something. You can normalize things without even realizing them. I saw a man in the program walking with a cane and I thought ‘oh my God. I don’t want to be like that.’ So about six years ago I was very adamant about getting off the methadone. Thank God today I’m living drug free.”

“I made a bad choice in love”
In 1992 the New York City Department of Health and Mental Hygiene had reported roughly 10,000 AIDS diagnoses in the city. According to the Latino Commission on AIDS by 1995, Latina women in New York City represented thirty-four percent of all New York female AIDS cases. Nearly 7,000 people died from AIDS-related complications in 1992 in New York City. Magic Johnson, a revered NBA legend, stunned the nation when he announced that he was retiring from basketball and had been living with an HIV diagnosis. And although President Bush signed the Americans with Disabilities Act of 1990, which outlawed discrimination against people living with HIV, his relative inertia regarding prevention and treatment added another layer of stigma. Becoming a “long-term survivor” was like a birthday wish.

Lillibeth was all too familiar with the wrath of AIDS in her own family. She lost two brothers and a sister to AIDS-related complications. “My first brother died on April 20, 1988. My second brother died in 1991. And then my sister died on March 17, 2005.”

From the start, she said, “I never thought I would get it. In fact someone called my mom to tell her [one of] my brothers was dying of AIDS while he was incarcerated. When I saw him he was so thin you could see his ribs and the bones on his buttocks. He had thrush. He couldn’t even walk.”

As she tried to move on with life while grieving loss, she met a man. He was an old acquaintance that made her consider dating again. “I saw a friend of mine that I had known for years and I always liked him. He was a bodybuilder and he looked so good and I said ‘okay I’m going to check him out now.’. We were together for about three years and I didn’t know he was HIV-positive already. I didn’t know that he was transmitting the virus purposely. I made a bad choice in love.” She saw a bottle of pills on his dresser one day and asked him what they were for. He said they were vitamins. She believed him. But after visiting her brother in the hospital and noticing the same bottle of pills used to treat thrush in his room she made a crushing connection. “My heart hit the floor.” Her boyfriend died not too long after that. Lillibeth went to get tested.

“I went to the Poly Clinic in the East Village to get tested for HIV. That was a devastating experience. The nurse came in and threw my chart on the desk and said, ‘You’re HIV-positive’ and then walked out. She left me there alone. I said oh my God. They were very cold in those days. They thought you deserved to get AIDS. We were the undesirables. If you were HIV-positive you were either a drug abuser or a prostitute. So they treated us very badly. I was just sitting there thinking I don’t want my son to know. I don’t want to die!”

A new home
Being diagnosed in the early 1990s and after seeing two siblings already lose the battle against AIDS, Lillibeth knew she needed help. She came across the then-named Gay Men’s Health Crisis, a multifunctional center where people with HIV and AIDS can find resources, a good meal, and a judgment-free listening ear. “When I was diagnosed I didn’t know of any resources. So my nurse gave me a flier and it was for groups. GMHC was the first organization to open their doors to me twenty-six years ago. After that first group I said, ‘Okay. This is my place.’ GMHC saved my life.” She started volunteering at the center which made it easy to attend groups. One day the workforce coordinator called her and asked if she was interested in working there. It was only a six-month contract to be a receptionist. Lillibeth took the job without hesitation.

A receptionist position led to working with GMHC’s Women’s Institute. Multiple trainings and certifications opened the door for Lillibeth to become a health educator. She gets excited about educating women, specifically Latinas. “I think women are underrepresented in so many ways. We need to focus on women and HIV as far as the virus and as far as the research. They need to do a lot more research for women. It’s very important to get the Latino community involved because they are stigmatized. They’re afraid to get tested due to their religious beliefs and a lot of machoism. Our tradition is ‘you do not discuss your medical issues, especially if you’re HIV-positive.’” Lillibeth is working through those walls daily. She has been at GMHC for twelve years.

Lillibeth’s longtime friend Elder Antionettea Etienne says that her confidence has grown over time. “She was not resilient when I first met her. She was in turmoil. Her mother was sick. Her sister was sick. She had a little boy that she was fighting to keep him. I was fighting with her to stop getting high.” Etienne, a Health Educator/Test Counselor at Iris House in New York, worked on helping Lillibeth to redirect her thinking about her self-worth. “We had to work on her self-esteem. It seemed like any relationship that she entered whether with a male or female they did something negative to her. And she accepted it. So we had to get to the point where she would say, ‘No I’m not accepting your bullshit anymore. You treat me the way I want to be treated.’” Lillibeth also admits that she has grown in her interpersonal relationships. She has found support in friendships with women. “Lillibeth’s been through a lot and she still keeps going because that’s what we do. She’s very important to me. I consider her a sister-—una hermana,” Etienne exclaims.

To be continued…
Although Lillibeth has lost her parents and siblings she still has the love and support of her son and nephew. And she has earned many accolades including being recognized as a part of the Poz 100:Celebrating Women in 2017 and again in 2018 celebrating people 50 and over. As for her AIDS advocacy, she’s simply not done working yet.

In 2018, Lillibeth was given a grant to hold a one-day conference at GMHC to share current research, intervention strategies, activities and ways to increase overall health with a focus on individuals of color who are living with HIV fifty years and beyond. The conference was held in partnership with AIDS Community Research Initiative of America (ACRIA), NMAC, Gilead Sciences and Alzheimer’s Association of America. The one-day conference was so successful she was given a new grant to hold bi-weekly single session groups themed “Thriving at 50 and Beyond.” These groups aimed to reduce social isolation, depression and stigma for anyone living with HIV and who are fifty years of age and above and train participants to understand comorbidities better to improve their overall health outcomes.

What will her next move be? After being active with the U Equals U campaign, Positive Women’s Network–USA and invited to speak at the United States Conference on AIDS, she’s ready for anything. “I still hear comments in regards to HIV. I tell them I’ve been living with AIDS for twenty-six years. They say, ‘What? You’ve been living with AIDS? Shouldn’t you be dead?’ I say ‘No. I’m quite alive. And I will be living for a quite a long time.”

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Candace Y.A. Montague is an award-winning freelance journalist based in Washington, D.C. Her work has been featured in a number of print and online publications including The Washington Post and The Washington City Paper. Follow her on Twitter @urbanbushwoman9.