Host: Dan Kennedy

Dan: [00:00:03] Welcome to The Moth. I'm Dan Kennedy. And here at The Moth, we're fortunate enough to hear stories from all over the world. Some of these stories come from people whose lives have been affected by HIV and AIDS. 

Unfortunately, it's a disease that has killed 35 million people. Many of us have all lost friends and loved ones during the time when the diagnosis was essentially a terminal one. But as time went on and advances were made, it's also become a disease that is preventable and can be treated. 

For example, in parts of the world, it costs just 30 cents a day for a life-saving pill that can keep a pregnant woman living with HIV healthy and prevent the disease from being passed on to her unborn baby. 

To commemorate World AIDS Day, December 1st, we'd like to take the time to listen to some stories about this epidemic, but we want to do something about it too. So, on this week's episode of The Moth Podcast, we're teaming up with RED, the organization with the goal of a world where no baby is born with HIV. So, let's get to the stories. 

Our first story comes to us from a Mainstage event we held in San Francisco just a couple of years ago. It was a great night and theme was Twist of Fate. Here's a story from Anya Rymer, live at The Moth. 

[applause] 

Anya: [00:01:21] In 1993, I was 24 years old and I was living in San Francisco. I remember walking through the Mission District on this gorgeous day in mid-July. It was sunny, and I remember walking past Mission Dolores and then walking past a sea of sunbathers in Dolores Park. I was on my way to an appointment. 

I was a junior in college at the time and I was just entering a new relationship. It had been a while since I had been in a relationship, so I needed to just get a routine HIV test. Afterward, my boyfriend at the time was going to pick me up on his motorcycle, we were going to grab a burrito, and hang out in Dolores Park, catch some sun and then he was going to drop me off at my restaurant job later. 

So, now, I'm at the clinic and I'm sitting in the counseling room across from the test counselor and she asked if I was ready to hear my results. And I said yes. She looked down at her results, and then she looked up at me and she said, “Your test came back HIV positive.” And I said, “What?” And she repeated it. She said, “Your test came back HIV positive.” I probably asked her to repeat it a few more times, because that was not what I was expecting to hear that day. 

All of a sudden, my heart just started pounding. I could hear the pounding in my head and it was drowning her out. She was handing me brochures. I could see her mouth moving, but I just wasn't getting what she was saying. I just started panicking. I remember thinking, does this mean I'm not going to be able to finish college? And then, I thought about being a mom one day. And then, I flashed to this thought of, do I get to be a grandmother one day? 

My mom was a grandmother at the time. We're Jewish. The Yiddish word for grandmother is bubbe. My mom was such a good bubbe. I think my 24-year-old self-logged away in the back of my mind that one day I would be such a good bubbe too. So, I was just panicking about this news and everything running through my head. I left the clinic with my brochures, and I remember coming out into a very different day. 

And that boyfriend at the time came and picked me up, and I told him what I just learned. He did the right thing. He gave me a hug and he listened. And then, I asked if he could just drive me straight to my sister's house, because I needed to tell a family member. And he did. He dropped me off and he took off. And now, I'm in my sister's living room and I'm sitting across from her on the couch and I told her, I said, “I just found out that I'm HIV positive.” And she started to cry. That's when I started to cry for the first time that day. It's like, she gave me permission. 

My sister is 17 years older than me, and I remember her saying something like, “I never thought that I might lose my baby sister before me.” As you can imagine, that was so hard to hear. But it really hit me. This was serious. This was the early 1990s and this was in the middle of the AIDS epidemic. There was no silver lining on this news. At the time, people were dying of AIDS and there were no promising medications around. Maybe I had 5 to 10 years left, but I was just dealt a really heavy blow. 

And then I thought, oh, now, I have to deal a heavy blow to my parents. I didn't want to do that. I didn't want to hurt them, I didn't want to disappoint them and let them down, but I knew I needed their support. So, we drove over to my parents’ house and I sat in their living room on the couch. And in tears, I told them my news and we cried together. They were amazing in their support. 

Two weeks later, I was at my first doctor's appointment. The doctor was explaining to me that a healthy person has between 600-1500 T cells. And we consider anything below 200 T cells to be an AIDS diagnosis. Just a reminder, T cells are the white blood cells that are the defenders of the immune system, essentially. She proceeded to tell me that I had 20 T cells. 

So, two weeks prior I'd found out that I was HIV positive. And then, that day, I found out that I had AIDS. I remember I had to sit back on the table and fortunately my mom was there holding my hand, and I just had to catch my breath, because I really had been dealt a second blow where it felt like I had maybe 5 to 10 years left. Suddenly, it felt like my future came right up to my face and it was a much more immediate death sentence. 

To give you some background, I graduated from high school in San Francisco in the mid-1980s. I went to a very well-respected public college preparatory high school. This was in the very beginning of the AIDS crisis. But at the time, unfortunately, it felt like the gay community was being devastated by AIDS, and it didn't feel like it was hitting the straight community just yet. 

As an example, in high school, I didn't receive sex education, but we weren't receiving HIV education yet. I became sexually active shortly after high school, and I was infected by my second sexual partner. It was someone who I met and fell in love with, and I thought I was equipped with enough information to protect myself and I simply wasn't. The unfortunate thing is, is at the time especially, there was so much stigma around HIV and AIDS that it didn't matter how I got it. People wanted to lump me into a category, was I a victim or a pariah? They just wanted to figure out, how did you get it? Did you get it were you an addict? Were you gay, Were you promiscuous, or were you a victim? 

It was really none of those things, but it doesn't matter. I walked out of that appointment that day. It felt like with a scarlet letter of my own to bear. I remember shortly after that I went to my first acupuncture appointment. This acupuncturist gave me very sage advice. He said, “You're newly diagnosed and I would highly recommend that you stay away from headlines right now, HIV and AIDS related news and statistics.” And he said, “Pay attention to how you feel and do your best to have a positive attitude.” 

I remember thinking, that's good advice, but how do you have a positive attitude when people are dying left and right of AIDS. People I had known had already died. I had some friends who were sick and I had found out that the boyfriend that I was infected by had already died. But I took that advice to heart. It was around that time that I moved back home. My parents invited me to move back home. I had been living with roommates, and I decided to drop out of school, because I didn't see the point. All of my young adult belongings were now in boxes in my parent’s basement. I'm not quite sure if I came home more to die or to hide from the world, because I felt so ashamed. 

Shortly after that, my parents threw me a 25th birthday party. And in my mind, 25 is not one of those milestone birthdays. But there was a big turnout of friends and family at this party. And for me, it felt more like a farewell party than anything else. I remember going to another doctor at a hospital, now a new doctor, and we were discussing my immune system and were discussing how I had a number of symptoms that were common for women with depressed immune systems. I had chronic yeast infections, I had advanced stage HPV, which was precancerous at the time. I was exhausted, completely fatigued and I had been living with less than 10 T cells at that point for a while. I had eight at one point, and I called them The Brady Bunch. [audience chuckles] 

This doctor took out a graph and basically took out some statistics, and she showed me where I was on the spectrum. I was essentially on the death end of the spectrum. She handed me a durable power of attorney form, and she suggested that I take it home and sign it and fill it out. I brought that form home and I got really angry, because I felt like if I sign this form, I'm giving my immune system full permission to just give up. I was in my mid-20s and I wanted that life ahead of me. I wanted that future to stretch out. And I wanted at least to graduate from college. I wanted to have a career and perhaps fall in love and have children one day.

So, that's when I got into this Anya fight mode, and I dug my heels into the ground and I threw that form away in the garbage. I just decided to do my best to have a positive attitude. So, I started going to acupuncture appointments regularly. I was taking Chinese herbs, and I was taking vitamins, I was doing whatever I could holistically, because like I said, there weren't promising medications around. I remember it was around that time that I moved out of the house finally. 

I felt ready to move back in with roommates, and I decided to go back to school. I took school one semester at a time until I graduated. And then, promising medication came around. People were talking about combination cocktail therapy, and now I was on three medications that I was doing really well on. My T cells just started shooting up, my immune system started to rebound, I had a spring in my step again. It was around that time, I remember, that I met this lovely man at Ocean Beach, watching the sunset one night. 

At the end of our first date, I knew that I needed to disclose my status to him. I still held that shame and I felt I wanted to get to know him I really liked him and I didn't want to be rejected. I didn't want him to go running in the other direction. What do you say? It's like, I have the fucking plague, you know? 

So, I took a deep breath and I told him that I was HIV positive. And he surprised me. He smiled and he said something like, “Wow.” He told me how strong he thought I was and how brave he thought I was for having such a positive attitude, living with HIV. He just wanted to get to know me more. So, I proceeded to fall in love hard with this guy. We got married a year and a half later. [audience applause] 

We moved out of the city. I started to focus on my career. We bought a house. In 2005, I gave birth to our son. [audience applause] And in 2009, I gave birth to our daughter. [audience applause] Both are very healthy. They're both HIV negative. We followed very specific protocol in order for them to not be infected. So, now comes my 45th birthday party, and I wanted to throw a big celebration. [audience cheers and applause] 

So, I wanted to throw a big celebration of life party. It was 20 years since that 25th birthday party and where it felt like everything was wrapping up for me. So, I surrounded myself with friends and family at a very kitschy Mexican restaurant. I got to wear the sombrero. They blared really loud birthday music on the jukebox. It was just a great night filled with positive energy. 

At the end of the night, I'm dancing with my daughter in front of the jukebox. We're having a good time. And this older server walks up to me and he leans in and he says, “That's so lovely that you're dancing with your granddaughter.” [audience laughter] And I thought, you're not supposed to say that to someone on their birthday. It's like the opposite of what you're supposed to say. 

But I very politely explained that this was my daughter. It took me a few seconds to get over being offended. [audience laughter] But I thought to myself, Anya, you have no reason to be offended. You're dancing with your daughter. And then I thought, and one day you might be right back here actually dancing with your granddaughter. Thank you. 

[cheers and applause] 

Dan: [00:14:58] Anya Rymer is a native Northern Californian, and considers her proudest accomplishments to be too healthy and amazing children, being married to her best friend for 20 years and living life off the sidelines. She's a marketing and operations consultant who champions the work of entrepreneurs and small businesses. She's also a food writer, photographer and an obsessive foodie. Infected with HIV at 21, diagnosed with AIDS at 24, Anya is healthy and living life to the fullest today at 48. Knowing how many people have lost their lives and beloveds to AIDS, Anya is incredibly grateful for the direction her path has taken. 

Next up is a story from Lepheana Mosooane. Lepheana crafted this story with us over three days in one of our Moth Community workshops, and then told it at a Moth night at the Market Theater in Johannesburg, South Africa, last year. The theme of the night was Beneath the Armor. Here's Lepheana Mosooane. 

[applause] 

Lepheana: [00:16:04] Never judge a man until you have walked miles in his shoes. One day, I was sitting alone in my room drinking my cold beer as usual. Then I got a call from my closest friend. I quickly grabbed the phone from the table. But before I could answer it, I remembered something. He had gone to a local hospital to do a voluntary medical male circumcision. The first thing that came into my mind was pain. I was scared that he was going to tell me how painful it was. Then I said to myself, maybe he's going to tell me something different. So, I decided to pick up the phone. 

He greeted me. And before I knew it, he said, “Dude, I'm HIV positive.” I was shocked. I couldn't believe what I heard. I stared quietly as if I was watching a horror movie. My mind took me back to the days when I was partying with him day and night, to the days when we would sleep on the same bed, and share alcohol and share sex partners. And I said to myself, there's no doubt I'm also HIV positive. But I didn't want to believe it. Then suddenly, I remember that I was on a call. I said to him, “It's okay, we will talk tomorrow” and I dropped the call. 

As I sat alone quietly in my room, I remember the time when I was six years old, the first time I saw a HIV positive person and it was on TV. I saw a dark, tall skinned man in a dirty hospital and he was grinding his teeth. I said to myself, HIV positive people are not people and they need to be kept away from the society. I never had a HIV positive neighbor. I never had a HIV positive friend. I never had a HIV positive family member. But here is my closest friend, and he's HIV positive. 

The following morning, we met and I told myself that I didn't want to quickly show him that I was going to stigmatize him like I was doing with all innocent HIV positive people. So, I greeted him with a fake smile, as if he was not reading my mind. He grabbed my hand and greeted me. I was shocked, but I could feel the same touch. He was still my friend. I couldn't feel the HIV virus. I could feel that he's still a human being, just like me. We joked, we smiled, we drank together again. He was still my friend. 

The desire of going to the hospital to do a voluntary medical male circumcision kept on burning in my heart. But I was scared to do the HIV test. Then one day, I said to myself, it's now or never. Off I went to the hospital. I remember sitting alone in the counseling room with a counselor. I felt like I was in prison. And the only keys for my freedom were my HIV test results. The counselor kept on demonstrating the HIV test, but my mind was absent. 

I could remember there was a woman in my village and she was selling traditional beer. She was HIV positive. I was all saying to myself, why would people buy beer from a HIV positive woman? My mind took me back to the days when I was a HIV peer educator and I was telling people about stigma. But deep down, I was secretly stigmatizing HIV positive people. I told myself that I could not share food with a HIV positive person. I cannot kiss a HIV positive person. But here I was scared to know my HIV test, as if I was working for my team. The counselor said, “Shall we?” I gave her my finger, and she drew some blood and poured it cautiously on the HIV test card. And we waited for some moments.

Every single moment passing, it was as if needles were flowing in my bloodstream. In my life, I have never experienced such long two minutes. I didn't know what I was thinking. But I couldn't imagine facing my father. I couldn't imagine facing my mother and telling them that I'm HIV positive. Because I could see them breaking because of all the trust they had. But then, again, I still felt that I had a chance. Then the counselor said, “Now it's time to look at the results.” 

At that time, my heart was beating like a throbbing engine of a helicopter. I was sweating. I was weak. I wanted to kill myself, but I was powerless. As they say, “Curiosity never killed your eye.” I looked at the results. I couldn't believe what I saw. I was HIV negative. I was excited. I wanted to scream. I wanted to tell the whole world that I'm HIV negative. But then, again, I thought of all those thousands and thousands of men who are scared to know their HIV status because of stigma. 

At that moment, I made a pledge that every HIV program that I work on, I'll establish a revolution against stigma. Because I realize that more than half of people who are killed by HIV AIDS are not killed by the virus, but they're killed by stress and stigma. It's not HIV AIDS that kills. It's stress and stigma. Stigma is in our hearts, and it's for us to make it live or to kill it. Thank you. 

[cheers and applause] 

Dan: [00:24:01] Lepheana Mosooane is a 30-year-old Mosotho man who lives in Lesotho, Southern Africa. He's currently a volunteer at Sesotho Media and Development, and is currently coordinating the Lesotho Film Festival, creating videos and facilitating social issues during community screenings around Lesotho. He's also the cofounder and the Secretary General of Key Affected Populations Alliance of Lesotho, an advocacy movement which advocates for the rights of sex workers and LGBTQ in Lesotho. 

If you'd like to help, RED has a ton of products all available now. And they all support the Global Fund. To learn more about that, you can visit the website red.org. 

That's all for this week on The Moth Podcast. And we here at The Moth mean it in the best sense of the phrase when we say that we hope you have a story-worthy week. 

Mooj: [00:24:55] Dan Kennedy is the author of the books, Loser Goes First, Rock On and American Spirit. He's also a regular host and performer with The Moth.

Dan: [00:25:05] Podcast production by Timothy Lou Ly. The Moth Podcast is presented by PRX, the Public Radio Exchange, helping make public radio more public at prx.org.