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Dan Kennedy
As we approach the end of the year, I'm thinking about the next. Next year is the year I finally make my Spanish better than my 9 year old's. Rosetta Stone is the most trusted language learning program available on desktop or as an app, and it truly immerses you in the language that you want to learn. I can't wait to use Rosetta Stone and finally speak better than my 9 year old who's been learning Spanish in his own way. Rosetta Stone is the trusted expert for 30 years with millions of users and 25 languages offered. Speaking Spanish, French, Italian, German, Korean, I could go on fast language acquisition. Rosetta Stone immerses you in many ways. There are no English translations, so you can really learn to speak, listen and think in that language. Start the new year off with a resolution you can reach today. The Moth listeners can take advantage of this Rosetta Stones lifetime membership for 50% off, visit rosettastone.com moth that's 50% off. Unlimited access to 25 language courses for the rest of your Life. Redeem your 50% off at rosettastone.com moth today the Apple Watch Series 10 is here. It has the biggest display ever. It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist whether you're running, swimming or sleeping. And it's the fastest charging Apple Watch, getting you 8 hours of charge in just 15 minutes. The Apple Watch Series 10 available for the first time in glossy jet black aluminum compared to previous generations. IPhone XS are later required charge time and actual results will vary.
Anya Reimer
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, and 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 the theme was Twist of Fate. Here's a story from Anya Reimer live at the MOF.
In 1993, I was 24 years old and I was living in San Francisco. And 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 and 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 and it had been a while since I had been in a relationship, so, so I needed to just get a routine HIV test. And 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, you, test came back HIV positive. And I probably asked her to repeat it a few more times because that was not what I was expecting to hear that day. And I just, all of a sudden my heart just started pounding and I could hear the pounding in my head and it was drowning her out and she was handing me brochures and I could see her mouth moving, but I just wasn't getting what she was saying and I just started panicking and 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? And my mom was a grandmother at the time and we're Jewish and the Yiddish word for grandmother is bubby. And my mom was such a good bubby. And I think I just, my 24 year old self logged away in the back of my mind that one day I would be such a good bubby too. So I was just panicking about this news and just everything running through my head and 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, and 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. And that's when I started to cry for the first time that day. It's like she gave me permission. And 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. And as you can imagine, that was so hard to hear. But it really hit me. This was serious. This was the early 90s, and this was in the middle of the AIDS epidemic, and there was no silver lining on this news. And you know, at the time, people were dying of aids and there were no promising medications around, and Maybe I had five 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. And 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. And they were amazing in their support. Two weeks later, I was at my first doctor's appointment, and the doctor was explaining to me that a healthy person has between 600 and 1,500 T cells, and we consider anything below 200 T cells to be an AIDS diagnosis. And just a reminder, T cells are the white blood cells that are the defenders of the immune system, essentially. And 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. And 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 five 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-80s and I went to a very well respected public college preparatory high school. And this was in the very beginning of the AIDS crisis. But at the time it truly felt like, 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. And 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. And the unfortunate thing 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? And they just kind of 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? And I was really none of those things, but it doesn't matter. But I walked out of that appointment that day. It felt like a scarlet letter of my own to bear. I remember shortly after that I went to my first acupuncture appointment. And this acupuncturist gave me very sage advice. He, 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. And I remember thinking, that's good advice, but how do you have a positive attitude when people are dying left and right of aids? And 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. And all of my young adult belongings were now in boxes in my parents basement. And I'm not quite sure if I came home more to do 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 we 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. 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. This doctor took out a graph and basically took out this. Some statistics, and she showed me where I was on the spectrum. And I was essentially on the death end of the spectrum. And she handed me a durable power of attorney form, and she suggested that I take it home and sign it and fill it out. And 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. And 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 just kind of. I got this Anya fight. I got into this Anya fight mode. And I dug my heels into the ground and I threw that form away in the garbage. And I just decided to take, you know, 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. And 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. And my T cells just started shooting up. My immune system started to rebound. I had a spring in my step again. And it was around that time, I remember, that I met this lovely man at Ocean beach, watching the sunset one night. And at the end of our first date, I knew that I needed to disclose my status to him. And 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. 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. And he told me how strong he thought I was and. And how brave he thought I was for having such a positive attitude living with hiv, and he just wanted to get to know me more. So I proceeded to fall in love hard with this guy, and we got married. A year and a half later, we moved out of the city. I started to focus on my career. We bought a house, and in 2005, I gave birth to our son. And in 2009, I gave birth to our daughter. And both are very healthy. They're both HIV negative. And 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, big celebrity, so I wanted to throw a big Celebration of Life party. And it was 20 years since that 25th birthday party, where it felt like everything was wrapping up for me. So I surrounded myself with friends and family at a very kitschy Mexican restaurant, and I got to wear the sombrero, and they blared really loud birthday music on the jukebox. And it was just a great night filled with positive energy. And 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. And I thought you're not supposed to 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. And it took me a few seconds to get over being offended, 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.
Anya Reimer is a native Northern Californian and considers her proudest accomplishments to be two 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, Ania is incredibly grateful for the direction her path has taken. Next up is a story from Lepiana Mosawan. Lepiana 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 Lepiana Mossawan.
Lefjana Mosuwan
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 cock 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 is 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 counsellor. 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. And 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 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 threw 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 you or I. 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 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 will establish a revolution against stigma because I realized 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.
Anya Reimer
Lefjana Mosuwan is a 30 year old Lesotho man who lives in Lesotho, Southern Africa. He's currently a volunteer at Sesoto 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 co founder and the Secretary General of Key Affected Populations alliance of Lesotho, an advocacy movement which 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.
Dan Kennedy
Dan Kennedy is the author of the books Loser Goes First, Rock On An American Spirit. He's also a regular host and performer.
Anya Reimer
With the Moth Podcast production by Timothy Lou Lee. The Moth Podcast is presented by prx, the Public Radio Exchange, helping make public radio more public. @prx.org.
Podcast Summary: World AIDS Day – Anya Reimer & Lepheana Mosooane
Released on November 28, 2017, The Moth’s World AIDS Day episode delves into personal narratives that illuminate the profound impact of HIV and AIDS. Hosted by The Moth, the episode features two compelling stories from Anya Reimer and Lepheana Mosooane, each offering unique perspectives on living with, reacting to, and overcoming the challenges posed by HIV/AIDS.
As World AIDS Day approaches, The Moth podcast honors the occasion by sharing heartfelt and transformative stories from individuals whose lives have been deeply affected by HIV and AIDS. This episode features Anya Reimer and Lepheana Mosooane, whose narratives traverse themes of diagnosis, stigma, resilience, and activism, offering listeners both poignant reflections and inspiring journeys of triumph.
Initial Diagnosis and Emotional Turmoil (02:59 – 05:30)
Anya Reimer begins her story by transporting listeners to the summer of 1993 in San Francisco’s vibrant Mission District. At 24 years old and navigating a new romantic relationship, Anya decided it was time for a routine HIV test. She shares the precise moment when the test counselor delivers life-altering news:
“Your test came back HIV positive.”
— Anya Reimer [03:15]
The initial shock is overwhelming. Anya describes her physical and emotional reactions, emphasizing the immediate panic and fear of an uncertain future. She vividly recalls grappling with questions like, “Does this mean I'm not going to be able to finish college?” and visions of motherhood slipping away, highlighted by her poignant reflection:
“Do I get to be a grandmother one day?”
— Anya Reimer [04:00]
Confronting AIDS and Stigmatization (05:30 – 09:45)
Just two weeks after her HIV diagnosis, Anya faces a second devastating blow: an AIDS diagnosis indicated by a critically low T cell count of 20. She recounts the moment her doctor explained the gravity of her condition:
“I had to sit back on the table and ... I had [only] five to 10 years left.”
— Anya Reimer [08:20]
During the early 90s, AIDS was largely misunderstood, often associated with the gay community, leaving individuals like Anya feeling isolated and miscategorized. She reflects on the pervasive stigma:
“They just kind of wanted to figure out, how did you get it? ... I was really none of those things, but I walked out of that appointment feeling like a scarlet letter.”
— Anya Reimer [10:05]
The Struggle for Acceptance and Hope (09:45 – 13:30)
Anya details her internal battle against despair, including her refusal to sign a “durable power of attorney” form that symbolized surrendering to her illness. Instead, she channels her determination into holistic health practices, attending acupuncture sessions, and maintaining a positive outlook despite the bleak medical prognosis.
Her narrative takes a hopeful turn as she slowly rebuilds her life:
“I started going to acupuncture appointments regularly ... I took this Anya fight mode.”
— Anya Reimer [12:00]
Reclaiming Life and Building a Future (13:30 – 16:36)
With the advent of combination therapy in the mid-90s, Anya’s health begins to improve dramatically. Her T cell count rebounds, allowing her to regain energy and optimism. She meets her future husband, shares her HIV status with him honestly, and finds unwavering support and love:
“He surprised me. He smiled and said ... he just wanted to get to know me more.”
— Anya Reimer [14:50]
Anya’s story culminates in a celebration of life, marking 20 years since her initial diagnosis with a joyous birthday party surrounded by friends and family. She highlights the importance of community and support in overcoming adversity:
“One day, you might be right back here actually dancing with your granddaughter.”
— Anya Reimer [16:00]
Key Takeaways from Anya’s Story
A Shocking Revelation and Initial Response (17:42 – 20:30)
Lepheana Mosooane shares a transformative experience triggered by a phone call from his closest friend, who disclosed his HIV-positive status. Initially paralyzed by fear and rooted in childhood misconceptions, Lepheana reflects on the stigma ingrained in him:
“A HIV positive person is not a person ... they need to be kept away from society.”
— Lepheana Mosooane [18:15]
The revelation challenges Lepheana’s preconceived notions, forcing him to confront his internalized biases and the true nature of his friendship.
Confronting and Overcoming Internalized Stigma (20:30 – 23:45)
Meeting his friend, Lepheana resolves to treat him with the same humanity as before, recognizing that his friend remains unchanged despite his HIV status:
“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.”
— Lepheana Mosooane [21:30]
This encounter sparks a personal transformation, motivating Lepheana to address his own fears and misconceptions about HIV.
The Courage to Test and Advocate (23:45 – 25:39)
Driven by his friend's courage, Lepheana decides to undergo an HIV test himself. The process is fraught with anxiety, but the outcome is a pivotal moment in his life:
“I was HIV negative ... I wanted to tell the whole world that I'm HIV negative. ... I made a pledge that every HIV program that I work on, I will establish a revolution against stigma.”
— Lepheana Mosooane [24:50]
Understanding that stigma contributes significantly to the suffering caused by HIV/AIDS, Lepheana dedicates himself to activism, aiming to dismantle societal prejudices and support those living with the virus.
Key Takeaways from Lepheana’s Story
The World AIDS Day episode of The Moth podcast offers profound insights into the lived experiences of individuals affected by HIV/AIDS. Anya Reimer’s story of resilience and triumph over adversity, coupled with Lepheana Mosooane’s journey from stigma to advocacy, underscores the multifaceted challenges and triumphs within the HIV/AIDS community. Together, these narratives illuminate the enduring human spirit and the ongoing need to combat stigma, support those affected, and celebrate the victories achieved in the fight against HIV/AIDS.
Notable Quotes:
Anya Reimer:
Lepheana Mosooane:
These poignant declarations encapsulate the core messages of the episode, emphasizing empathy, understanding, and the critical role of societal attitudes in shaping the experiences of those living with HIV/AIDS.
For more stories and support initiatives, visit themoth.org and red.org. Together, we can continue to share, understand, and combat the challenges posed by HIV/AIDS.