Snapshots from Hell
How do you transition from being ready to die to ready to live?
For True Stories in Sound at Columbia Journalism School, I interviewed Lillibeth Gonzalez, an incredibly resilient woman who has fought with death for half of her life. But it's not a sad story. It's a lesson I learned from her about how to view your body.
[Zeyi]: This is True Stories in Sound. I’m Zeyi Yang. If you ever came across Lillibeth Gonzalez’s Instagram, it’s no different than most teenagers’ social media account. There are hundreds of
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[Lillibeth Gonzalez]: Selfies.
[Zeyi]: Selfies with friends, selfies with family, selfies of her alone in all different places.
[Lillibeth Gonzalez]: I have seven thousand pictures on my phone. They call me the selfie queen.
[Zeyi]: Lillibeth, or as she likes to be called, Lilli, is 64 years old. You probably don’t refer to many people of her age as selfie queens, but Lilli deserves the crown. She is not tall, always smiling, and keeps a punky short trim haircut. She’s not a grandma yet, but you can tell from the pictures that she will be a badass grandma. She would upload a dozen of photos for one event, but doesn’t usually caption them, except tagging the location or person.
[Lilli:] Because I love memories. Yeah. I love looking back on my pictures and say: oh my god, I remember this day.
[Zeyi]: And for the years before Instagram or smartphone was ever invented? She has a bunch of physical photo books. These photos have chronicled her life, so I met Lilli the other day to go through her collections, and also the stories behind them.
[Lilli:] Alright, so this is when I used to model.
[Zeyi]: Oh wow.
[Lilli:] I was about 22 years old, 23. Wow, that was about 40 years ago.
[Zeyi]: You can probably tell from my reaction. It’s a very impressive photo.
[Lilli:] This picture is me in a bathing suit, with my beautiful slim body, which I don’t have now. Everyone says, I look like Marlene Dietrich.
[Zeyi]: She does. In the black-and-white photo, she’s sitting on the studio floor, her legs in stockings, bending one and stretching the other elegantly to the far end. The photo seems almost like a still frame from a Hollywood’s Golden Age movie, and Lilli is the absolute star, just like the famous American actress Marlene Dietrich in the 1930s. I didn’t have much time to continue marveling at it before we turned to the second photo.
[Lilli:] This is 1992, October.
[Zeyi]: Where was it? This is your home?
[Lilli:] This was where I was born and raised, on Norfolk street.
[Zeyi]: In this photo more than a decade later, Lilli still looks great. She is sitting on the bed of her childhood home, where she used to live with her sister and two brothers, and their mother would be just a few blocks away. It was one month before her 37th birthday. But in fact, the year 1992 was marked with something far more serious to Lilli.
MUSIC 1: Cicle Vascule
[Lilli:] I was diagnosed with HIV on June 2nd of 1992. I went to a walk-in clinic. It was around 7 pm. So, when the nurse walked in, she just threw my chart on the table and said: Your test came back positive. And then she walked out and she left me there all alone. You know, I’m standing there, frozen cold. My heart went down to my feet. I couldn’t think. I couldn’t move. I was literally in shock.
[Zeyi]: In those days, HIV was a death sentence. In 1992 alone, more than 30,000 people in the United States died from HIV infections. Lilli knew that well.
[Lilli:] The only thought that went through my mind were: Oh my god, you’re going to die. Because I lost my two brothers to AIDS related complications. And then thereafter I lost my sister. I lost many friends to AIDS. Many, many friends.
[Zeyi]: So, by the time she took that photo, the tragedies in her family had already begun to unfold.
[Lilli:] My first brother died in 1988. He had pneumonia. He would pull his teeth. They would fall right out. My other brother, he died like one year later or less. He was incarcerated. At that time, they were not giving inmates any medication, any treatment for HIV. They would just put them in one room alone. No one wanted to get near them. No one wanted to touch them. I believe he died a very lonely, sad death.
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[Zeyi]: In its early days, AIDS was still called GRID: Gay-Related Immune Deficiency. None of her brothers was gay, but Lilli said they were drug users. She assumed that was the reason they became HIV positive. As for her, she got it from her husband. He concealed his positive status, never wore protection, and lied to her by saying that his AIDS treatment pills were just vitamins. She refuses to name him in this story.
[Lilli:] That’s the man who passed the virus on to me. Cause I really thought it was love. So, I trusted him with my life, completely.
[Zeyi]: And Lilli was devastated by his betrayal. She fell into a cycle of resignation and despair.
[Lilli:] I was living on a day to day basis. I was drinking and doing drugs for a while since before the diagnosis, so I said, no, I’m not gonna change my life. I’m gonna continue. So, I did that for about a year. And that’s when my T cells went down to zero.
[Zeyi]: Which is…really, really bad. She basically had no immune system. Lilli showed me another photo of how that impacted her.
[Lilli:] This was in 1996. It was my son’s birthday. He was twelve years old. That’s when I was looking really terrible.
[Zeyi]: This was just four years after the last photo, where I can still see the beautiful model who has “wow”ed me. But in this one, she has so many wrinkles on her face as if she has aged incredibly fast. I later learned that those were not wrinkles. They were facial fat losses caused by HIV and also the medications Lilli started to take then.
[Lilli:] You can look at someone, and you can tell that person had HIV. Because the medications would change your skin tone. So, my skin tone was grey. My face was all sucked in. You could see the bone features on my face. Then I had wasting syndrome. I was like 96 pounds. And you don’t have any strength to walk around. So, people will look at you and know.
[Zeyi]: What’s worse, Lilli herself was even more sensitive to the changes she saw in the mirror.
[Lilli:] Since I was a model, I was always looking perfect. So, when I was diagnosed, I lost everything. And I said, oh my god, I cannot let people see me like this. I went into deep depression. I was home. I was with the shades down. I don’t want light. I don’t want anything.
[Zeyi]: The pills she took at the time were saving her life, but they were also wearing her down.
[Lilli:] I was taking up to 22 pills a day, and I had to be somewhere where there was a garbage can, because I would vomit it immediately. And I had digestive issues, so I needed to be by a restroom. It wasn’t an easy task for me because I literally, literally went through hell and back to get to where I’m at today.
MUSIC 2: Ottol
[Zeyi]: I asked her, what made her change from the resignation, the alcohol and drugs, to such perseverance. The answer was the young boy posing with her in this birthday picture, her son, Chris, standing behind his birthday cake and smiling sweet. But before that happened, she tried to lie to Chris.
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[Lilli:] He would ask me, mom, do you have HIV? But I didn’t want him to know. I didn’t want him to go to school worried is my mom gonna die.
[Zeyi]: But why did he raise that question?
[Lilli:] Because he saw what my brother went through. Because he would see me skinny and lethargic. So he would put two and two together. He was a very smart kid.
[Zeyi]: She kept the secret for two more years, until when Chris was 12, the year of the photo, Lilli got so sick that she couldn’t even move. And that’s when her son said to her:
[Lilli:] “Come here, sit on the sofa, sit right here. You have HIV, right?” He told me, he didn’t ask me. And that’s when I got slapped in the face. And I said, oh God help me live. I need to see my son grow. I wanna see him go to college. I wanna see him getting education. Get married. And thank the lord, I have seen it.
MUSIC 3 Mccarthy
[Zeyi]: That’s really the easy way to put it. In fact, she has undergone three regimens of medications for treating HIV. Each one had enormous side effects, but they kept her alive. Her sister died on March 17, 2005, because of liver failure, a result of being an HIV carrier and not taking any pills. Lilli didn’t know she could survive her mother, the only person in the family without HIV, but she did. She buried her mother, who died at 85, in 2009. At this moment, you might say she’s defeated HIV. Or as she put it, she came back from hell.
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[Zeyi]: But, all of a sudden, Lilli found herself faced with another problem, something she
didn’t know she’d have to face but became more ever-present than the threat of HIV: the problem of getting old.
[Lilli:] The senior moment hit me after my 55th birthday, I would get age spots, doctor would call it age spots. I said, “What do you mean? Age spots? I don’t feel like I’m aging.” (He said,) “Girl, yes, you’re aging and you’re aging with HIV.” So, I said, okay, now this is an issue because I don’t know how to handle this.
[Zeyi]: She has gotten used to live with HIV. It’s already a part of her, a part that she dislikes but no longer fears. Aging, however, is something she’s not prepared for.
[Lilli:] I maintain a very young attitude. People tell me you don’t look like you’re sixty-four. You look like you are forty-five. I said keep me at forty-five, but in reality, I’m twenty-five. Because I do not want to grow old. I fear growing old and lonely. I have my son. I have my friends, I have my co-workers. But there are times when I’m home alone, and I feel socially isolated.
MUSIC 4: Slow Dial
[Zeyi]: This is the battle she’s fighting now, as an individual, but also as the leader of a whole community who are aging with HIV. She’s working full-time in GMHC, a New-York based AIDS advocacy organization, to provide group support for people over 50 years old. She’s representing the first generation of people who find aging more terrifying than HIV and helping them find a way out.
[Lilli:] I go through…everybody goes through that. Especially living with AIDS for 26 years, I live a battle every day. I survive every day and I thrive every day. I look at myself in the mirror and I love myself. I said Lilli, you are resourceful, you’re insightful, you’re intuitive, you are beautiful, you are friendly, everybody loves you, so go out there and have a positive day.
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[Zeyi]: And then, she showed me another photo.
[Lilli:] This was in 2016. I was 61 years old. There. That’s me. I’m looking like myself again. My health is great. My face looks great. My body looks great.
[Zeyi]: It was a Halloween party at GMHC. Lilli is standing in front of a red carpet-style backdrop, posing to the camera, like a professional model. Her hair was short, as is it today, because she’d cut it once it started falling out. And her outfit?
[Lilli:] This outfit is a beautiful gold blouse I have and I’m wearing black tights with it and beige boots. And my mask has pink feathers on it. So here I’m feeling beautiful, to be honest with you.
[Zeyi]: She didn’t feel beautiful when she feared that she looked HIV positive. She didn’t feel beautiful when she discovered herself aging. But I’m glad that she does now. Among the four photos, this is the only one you are able to find on Lilli’s Facebook and Instagram. She continues to collect and preserve all her photos, whether she looked good in it or not. They remind her of the crazy details of what happened in every stage of her life and who accompanied her during that journey. Some of them are still around and supporting her, but some of them cannot. Now she can proudly look back at these pictures, and tell her stories out loud to everyone.
And on the day she told them to me, she added one more photo to her collection.
MUSIC 5: Wingspan
[Lilli:] I’m gonna take a photo saying I was here, I was here today talking about my HIV status and I’m gonna take a photo. Come on.
[Zeyi]: Oh, well, can I be here?
[Lilli:] Yeah, why not? I’m gonna say: at the studio. Okay, thank you.
[Zeyi]: Send me the picture please.
MUSIC 5 OUT
Music in this episode by Blue Dot Sessions.