The Cure Chronicles: HIV with Maria Mejia.
Maria has been living with HIV for more than thirty years and is an ambassador for National Women and Girls HIV/AIDS Awareness Day, a blogger, an HIV advocate and activist who is dedicated to building awareness about HIV and working to reduce HIV stigma. Maria is also a global ambassador for a non-profit women’s organization called The Well Project, which is working to change the course of the HIV/AIDS pandemic with a comprehensive focus on women and girls.
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Jeff Galvin: Maria, thank you so much for joining us on the Cure Chronicles today.
Maria Mejia: Thank you very much for having me. Like I said, it's an honor to be invited to be able to have a platform so everyone could hear my message of hope.
Jeff Galvin: Well, thank you, it’s really our pleasure and honor to have you here. This show is about you. You've been dealing with an HIV diagnosis for quite a long time and you had a very interesting journey that included a long period of not being treated, and back in those days HIV was a deadly disease frequently. Right, of course it’s not HIV that gets you, but it’s the consequences of AIDS, right?
So how did you avoid that? Were you just lucky? Could you go back to your diagnosis and tell us a little bit about your journey through diagnosis to starting to get on medication and why you did that and and then to today, what it's like dealing with the challenges of suppressing the virus.
Maria Mejia: And being a long-term survivor of 35 years.
Jeff Galvin: Yeah, a long-term survivor, exactly. Yeah, share that with me.
Maria Mejia: For me to get to the diagnosis part when I was a teenager, I have to go to the beginning of my story. There was a consequence for me too, to put me in an environment for me to contract HIV, I really do believe that and I believe that all those things that happen to me were horrible and that, you know, they continue to happen, just obstacles and things in life made me the activist that I am today.
So my first memories are at the age of three sexually molested by an uncle, so obviously I was a child and that the shame that comes with it, I mean obviously I was a survivor of that as well, but that broke that little girl, that little girl that was broken for so long. I also grew up in a very violent and abusive household with my father. My father passed away four years ago and I loved my father and I talk about forgiveness as well, because I do believe that in forgiving we set ourselves free for the chains that you know attach us to the bitterness or hate or anger.
So I hated my father as a child and he didn't sexually molest me, but he was very abusive verbally and emotionally to myself and my mother. You know, I can remember him calling me… that I was going to be nothing but a [___]. You know, I don't even want to say the word, that I was not gonna amount to anything else and I was like four or five years old.
Jeff Galvin: Oh my gosh.
Maria Mejia: I never understood why he would do that, but then further down, many years down the line, I sat down with him now not as that little girl that was extremely scared of him, because he was a, you know, patriarchal extremely conservative Catholic male, and you know, Colombian, and so I went to his childhood and I understood a lot of the things. No, I'm not excusing it. I also have forgiven my uncle, not excusing it either, as a matter of fact he doesn't know I forgave them extra business for myself.
And so growing up in that household that was so violent, at the age of 13 I could not take it anymore, so I was placed with counselors and this and that, and obviously I started acting out in school at the age of 12. By the age of 13 I ran away to the streets and they put me in the foster care system in Miami, Florida.
I was born in Medellin, Colombia, but I was brought at the age of three to the United States by my parents. In the foster care system they tried to sexually abuse me as well and by that time I was around 13. I said “Oh no, I said, “I will not be the prey anymore. I'm going to be the predator.” So I became an extremely violent person. I'm an ex-gang member from a very violent street gang.
But looking back now - and I’ve talked to so many kids that are in trouble that I could relate to - because I'm a very versatile person, I could talk to anyone that has gone through anything in life, from someone that's in prison to people that are in Congress and Senate, and I speak to a lot of human rights activists.
And those kids, as I ran away to the streets, they became my family. They embraced me and I became the girlfriend of the leader of the gang, who passed away from complications of AIDS many years ago. We were all teenagers, we were all from broken homes, and we all have been sexually abused physically or physically abused or emotionally abused.
So I also teach about how we should not judge, and we should not… what my father basically embedded in me, he broke my self-esteem. So when you are told you are nothing or you are told that you're going to end up like your sister; I had a sister that was murdered in Miami, shot seven times in the head and put in the trunk of a car. And he would tell me since I was a child that you're gonna end up just like your sister six feet under.
I think now that I'm, you know, 49 years old, I have acquired a lot of wisdom. I think that I put myself in a lot of settings to, maybe, have that happen to me, because I went through everything… kidnapping… anything that you could think of as bad, I've been through it, but I actually have survived it.
Jeff Galvin: That'd be another way to build self-esteem, to realize that you're a survivor under very adverse conditions.
Maria Mejia: It took me a long time, because I hated everybody. I hated God. I hated myself. I hated life. I would tell my mother as a child when she was washing the dishes, maybe crying because he had assaulted her or something, how can I kill my father? You know, a child saying that to their mother, that's very hard, but at the same time, I loved my father.
Jeff Galvin: It's hard to not…
Maria Mejia: I forgave him, I forgave him, and he understood, because I am a very direct person and I'm not the type of person that will be, you know, like I respect obviously my elders but I told him right in his face when I was able to talk and communicate, because he didn't let me even express myself or cry as a child, I said “you did this and this and this and this and this”, and he said “No, no, no, it’s not like that” and I was like, “Yes it is like that.”
I was like, “Listen, why don’t you tell me about your childhood?” And that’s kind of like how I came to forgiveness, listening to his experience, and he was also, I think, bipolar and many things, but he also had a lot of wonderful things, because my father was not…
Jeff Galvin: That's remarkable that you could do that, that you could forgive him but it is typically something that is not… well let's say that forgiveness is sometimes a process of self-healing as well, you know.
Maria Mejia: I was basically in the gang from ages 13 to maybe 16, almost 17 years old, and I remember… I saw a lot of things that were a lot of violence. But the person that was my first boyfriend, who was the leader, somehow understood that I didn't belong there, because you see even though I came from violence, coming from a very upper middle class home, ultra conservative catholic family, very conservative, I'm like the more flashy one or whatever, but my foundation was my mother and her teachings her respect, her morals, her dignity and self-respect, and all the things she embedded in me as well, you know, and seeing her example, because she’s the one that taught me to forgive. She was with my father.
Obviously, I told on my father when I went into the foster care system, that he abused me, that he did this. She didn't have the strength as 25 years younger than him to leave with two children, my little brother and myself, so I had to make the decision at the age of 13 where I had enough. I said, “I cannot deal with this anymore.” I had to make the decision for her and I broke the family.
Sometimes I get a little nostalgic and sad, because I think to myself if my father hadn’t been that, and I mean that's not 100% because this can happen to anyone, it doesn't matter. But if I would have been raised in a normal home of love and respect, I most likely would have been already like married with kids and grandkids and been a physician, a lawyer, or whatever I wanted to be because although I was in a street gang and everything, I have many gifts that God has given me.
I am not like an extremist religious person either, but I am a person who does believe in God. I do believe in the teachings of my beliefs of Christ, which is part of my culture, and the teachings of love and forgiveness and all those things that, also like I said, my mother. My mother was my foundation. And also I have a lot of things from my father. He was a great orator and I got that from him. This is natural, you know, he was a natural speaker and he was a very generous man. He was a very, you know, like a charmer, and he had a lot of wonderful things as well. He was generous.
And so I cannot only speak about the bad things, but that environment set me to be in the foster care system, which is horrendous, my story is not the only story of people trying to abuse you in whatever type of way. It happens to a lot of kids and I speak to a lot of them that are in trouble.
Everything that I have gone through in my life has helped me to save many lives. Not only as far as HIV, because like you said, I haven't even talked about HIV.
So my first boyfriend, the leader of the gang, didn't know he had HIV. He was a teenager and he was experimenting with IV drug use and I didn't know that. His mother, his sister, and himself, they passed away many years ago. But he didn’t know he had HIV back then. It was called GRID. I got it in 1988
Jeff Galvin: That's really early, wow. Gay-related immunodeficiency, GRID, right, and it had nothing to do with gay, and that was misleading as well, right, as a straight person you're thinking “Okay, you're safe,” right?
Maria Mejia: Oddly enough, I love to read and I'm self-taught, you know, so I was aware of many things that were going on. So I was aware of HIV and AIDS with Ryan White, which is one of my biggest examples, a little activist that fought so much and a true example and an inspiration. What they did to him was horrendous, and as a child, they didn't have any compassion, the people.
Like I said, when people don’t have education, they’re ignorant, and ignorance fuels fear, you know, and that fear could fuel discrimination and stigma, which continues to exist and is the number one thing. Because people are still dying of complications of AIDS, because they don't want to go to the clinic and take their medication, because they're going to see them, because of the stigma, because of the shame. I have so many people that have died throughout these 34 years of me living with this.
Jeff Galvin: Let's talk about that a little bit. So initially, you get it because your partner is using intravenous drugs. He contracts HIV, and then you end up with it. Did you know right away that you had HIV? When did you get diagnosed? What year was that if you could give it some context?
Maria Mejia: At the age of 15, I contracted HIV in 1988. I was 15 years old, but I didn't know. Around the age of almost 16, almost 17, I sat down with my father, who was no longer in the home. You would think, okay, it's time to go back home, he's gone. But it was too late. I was broken already. I didn't want to hear anything; I just wanted to self-destruct. I was full of anger, but I was tired of the streets at that point.
I remember crying, and my father said, "You know what? You don't belong here. You don't belong in the streets. Go back home with your mother and your little brother. I'm going to set you free." It's very hard for someone to set you free from a gang, because there's really no way out of that, so that's why I say a non-active gang member. Respect me.
Jeff Galvin: It also shows you that people in gangs are humans too and have a variety of personalities, including people that are caring and supportive. It sounds like that's what your boyfriend was like. He felt like you had potential for a better future without the gang membership and somehow worked it so that you could have a smooth escape from that. But then, so you're 17 years old, and then when do you find out that you have HIV?
Maria Mejia: I returned back home and told my mom that I wanted to change my life. I had seen the light and wanted to enter a program called Job Corps. By the way, I'm also a blogger and writer, and I plan to write a blog post about Job Corps before the year is over. It’s been many years and I haven’t given them their probs because of the discrimination back then.
Basically, I found out in Job Corps. I went to a social worker and they put me in the Job Corps. It's like a second opportunity place for teens in trouble to start doing a type of vocational education. From there, many go to college and university, and some have PhDs.
The social worker said that they didn't want me to be in Miami, because of my environment, so they sent me to Kentucky. I was about to be 18 years old. The year was 1991, but I was there for only a month.
When all the teens go into Job Corps, they get tested for everything, normal blood panel, pregnancy, HIV, and everything else. I told you, I was knowledgeable about HIV from what I saw on TV, with gay white men in San Francisco. They're strong warriors and fighters for many causes.
Jeff Galvin: So did you get diagnosed because you had a standard panel of tests for Job Corps? Is that what happened?
Maria Mejia: Yeah, exactly. Everyone got tested for the same thing. I remember that we were in a group in a room where they did it. Because I became a tester in the future as well for HIV, because I was told in a very uncompassionate way by a doctor.
I remember I knew more than anyone about HIV, but I never thought it would happen to me.
Jeff Galvin: You didn't know I had it.
Maria Mejia: No.
Jeff Galvin: That’s amazing, so you knew a lot about HIV, but you still didn’t know you had it and you probably didn’t realize that you were at risk from your history.
Because then it was a gay man’s condition and the last thing on a teenager’s mind is that they have HIV, especially in those times. I was healthy and strong. I am a very strong person genetically anyway. HIV has not managed to destroy me.
Jeff Galvin: So how did I find out then? Did they right after the blood test actually call you up on the phone and say, "Hey Maria, did you know you have HIV?"
Maria Mejia: I wish it would have been that sweet, but no. It was on the campus, and I was about to turn 18 years old. My birthday is April 11th, and I found out on April 18th. That was my gift - finding out that I had it. They didn't even say HIV; they just started sending me these little slips to my dorm, because it was a huge campus that had a clinic.
So, I went to my social worker there and said I would like to go to Miami for a week to celebrate my birthday with my family, and they were like, "Okay, but you have to go to the clinic to get discharged." I did get like two or three slips from the clinic saying that we needed to see you in the clinic before this, but I didn't keep them.
Jeff Galvin: That was the first time you paid attention to the slips, and they were like, "You can't go home until you go to the clinic."
Maria Mejia: Well, I had to go because of the slips. I would look at them and tear them up, and I was like, "Why do they want me in the clinic?" I gonna have to go all the way over there and I’m not gonna walk 20 blocks, that's what I thought, and so I had to go. So I went, I didn't think anything.
The doctor I remember was very, very angry. He had his eyes were like, very, like, like he was like, it was horror but anger. "Why didn't you come to the clinic? And we've been sending you slips!" And I responded, because I was 18, "Like I don't know." By that time I felt he was gonna say something, so the first thing that came to my mind was "I have cancer, because I smoke cigarettes." I didn't do drugs, I didn't drink, and I said "I have cancer because I smoke cigarettes."
So he sat me down in a cold room, did not prepare me, was not compassionate. He was a really harsh person in that cool room by myself, with no family around, nothing. He just blurted out, "You have AIDS!"
Jeff Galvin: AIDS?! Oh, he actually, he didn't even say you have HIV, because it's really different, isn't it right? I mean, did you actually have AIDS? Did you have symptoms?
Maria Mejia: He didn’t know because obviously back then there was no medicine and there was no access to treatment.
Jeff Galvin: Oh, so they just assumed like, "Oh, you have a death sentence." He literally told you at the time, the time that he told you, it was a death sentence, and he gave the information to you in that way. I mean, wow, that really, wow, that really does lack compassion, doesn't it?
Maria Mejia: A very ignorant physician. Like, you know, and I talked to many of them that are not only studying medicine, or the HIV specialists or epidemiologists, I love medicine. It's like I'm a doctor with a diploma, really. I read a lot, that's what I did. I was compulsively trying to get my hands on information.
Jeff Galvin: I've got to tell you that I've never heard a story that cold about how people know.
Maria Mejia: It was horrible.
Jeff Galvin: Yeah. That's the worst I've ever heard. I've heard people hear that they found out they had cancer that way, that it was in a very cold clinical way with no empathy, right? But this is the first time ever, you know? That's the first time I've heard that.
Now, I'm sure it happens all the time, right? It's just the people that I've talked to. I bet you that your experience is actually more characteristic of finding out something like that around that time, especially in the Deep South, right? You're in Kentucky, right?
Maria Mejia: Yeah, Kentucky.
Jeff Galvin: How strange.
Maria Mejia: But that is not an excuse.
Jeff Galvin: Oh no, I'm not excusing it, but you're saying that… Think about, like, you are actually telling a story that may be realistic for many people who found out about it around the same time as you, right? That you're actually telling a story that they can identify with, because I've heard a lot of stories where, you know, the people were really supportive. They happened to me in a great environment where when they found out they had HIV, they had a whole community around them that was going to help them through it, including the doctors, the clinic, and all that stuff. You don't get that. You got the exact opposite in the spectrum, and it's important for people to know that some people have had to go through that.
Maria Mejia: When you are a physician, because I work with a lot of scientists and physicians, right? But they take an oath and you have to have compassion and empathy as a physician. I know everyone is like it is something normal for them to see death. I mean, I myself have a lot of physicians in my own family, and they're a little cold, you know, but he first of all shouldn't have never told me I have AIDS because he didn't test me for my CD4 count, which is an immediate check for where it’s at.
Jeff Galvin: AIDS is just the consequences of HIV, HIV is just a virus, and AIDS takes a while to develop, so he actually gave you a diagnosis that was well in advance of the information that he had.
Maria Mejia: Yeah, exactly. That's like me telling a person that - because I'm in remission of cancer as well, by the way, I've also fought that - and, uh, that's like me telling a person with cancer, without testing certain things, "You have metastasis."
Jeff Galvin: That's right. That's right. And they say it so coldly too, that's just remarkable, but it sometimes happens. That's unusual with doctors, but sometimes it happens.
Maria Mejia: If that happens in these times, which they do sometimes happen in other countries and places, that doctor will get fired, I’ll make sure that physician will be fired.
Jeff Galvin: So, at this point, though, now you know that you have HIV. You've actually been told you have AIDS. You must be in shock. So, did they prescribe you some meds right away? Meds didn't even exist at the time, right?
Maria Mejia: One medicine called AZT, which was an extremely high-toxic medication that was chemotherapy for cancer that actually was removed as chemotherapy to treat cancer patients because of the toxicity.
So, he tells me I have AIDS. I remember I didn't cry. I didn't get angry. I just put my head down. I was in shock, like you said, and I said, "I'm never gonna get married. I'm never gonna have kids. My life is over."
And I remember that there was not even a pamphlet that he could give me. There was nothing. And that it was just a cold gray room.
So, the dean of Job Corps - I guess they contacted them, there weren’t any cell phones - he came all the way where I was. Obviously I was distraught, I was still a teenager, a little kid. And I remember walking with him. He walked me through the campus to my dorm, and he says, "You know, Maria, you don't have to leave Job Corps if you don't want to. We have another kid here that has HIV and we’re giving him AZT."
And I said, "No, thank you, but I want to go home and die." I don't want to stay, you know, because it's a death sentence. People were dropping like, like flies, and that's the reality of it.
Jeff Galvin: That's really interesting, though, but that dean was really ahead of his time, right? You know, a lot of people were just too scared to even be around people that have been diagnosed with HIV. So he walks you across the campus, and he says to you, "Look, you still have choices. Uh, you could stay here. We already have one person that's here being treated with AZT, and you can stay in Job Corps or stay on the campus or whatever." I mean, that is at least a little bit of light, a little bit of a light within a very dark kind of environment where the doctor did it all wrong and the dean turned out to be a little bit ahead of his time and actually show you some love, right? Wow.
Maria Mejia: So, you know, obviously, I don't want to stay. I wanted to go. So then I had to go into the dorm, and I went into the room. There were four girls there, like two bunk beds in each room. I remember one of my roommates was crying, and I asked what was wrong. She said, "I'm pregnant," and she was crying. I hugged her, and you know, she was scared because of her parents, and I said, "Oh my God," and I started crying too, for her, not for myself yet, and she goes, "Why are you crying?" I said, "Because I have AIDS," and she was like, "What?" And I said, "Yeah," and then she goes, "I'm so sorry," and she hugged me again.
Which I gave her that thing that you thought about about my childhood and your childhood. "Okay I'm pregnant, but she has AIDS. She's gonna die." You know, that's what you thought, death.
Jeff Galvin: Oh I mean everything's relative, isn't it? We all have challenges, but I think what's remarkable about that is in a world that could totally misunderstand HIV and AIDS at the time, and even in a situation where it was completely incurable, she turned around and gave you a hug and gave you some sympathy and some empathy and some support, once again, like a point of light within the darkness. I think that's a wonderful part of your story, but at the same time, I see overall, this is a really tough time.
Jeff Galvin: So, you head home. It sounds like you forego the AZT.
Maria Mejia: Well, I said I wanted to leave, to come back home to Miami. I went to the social worker, and they were getting me tickets. It took three days, and during those three days, I was kind of crying, but I had to make that walk after this girl told me I had to get on the phone and call my mother and tell her that I had AIDS, and that was very difficult.
Like I said, my mom has been my example of strength as well, and she's crying, but she won’t do it in front of me, because that will kill me, you know, that would destroy me. She has never cried in front of me. She said, "Don't worry about it. Come home. In my heart, I know that you're going to be okay. Just come home." My mom is very compassionate, like an angel, and a strong, very strong woman.
Jeff Galvin: It sounds like she gave you a lot of sort of things to hold on to even through your youth.
Maria Mejia: I think so.
Jeff Galvin: Even though you weren't living with her, she had given you some kind of like blocks of morality and spirituality that gave you anchor points that helped you survive your childhood. And then it turns out she's stronger than you realize too, you know, but you took a chance, right? You picked up the phone and you told her over the phone what the story was, and she came through for you again. That's another touching element of this story.
Maria Mejia: I think that would have probably been that way, because I know a lot of people that have been rejected by their family, but that's not my mother. My mother is a very compassionate, loving human being, and like I said, even though my father and her were separated, obviously, she was there until his death. Like she was there to accompany him in the hospital, and like she is my example so far.
Like I've been an activist for 24 years. A lot of the highlights now when I have interviews all over the world and stuff, they highlight my mother a lot, because she is really my foundation. And so I went back to Miami and she sat me down. That's when the kind of like the soul stigma started, because of the ignorance that was going on. We decided to go back to Colombia and that became… it was even worse in Columbia. I mean, we had no social media. I didn't know anyone with HIV. There was no information. There was nothing.
And she sat me down and she says, "You cannot tell anyone, your family or friends, that you have HIV, because they will discriminate." She didn’t do it because she was ashamed, she did it to protect me, but it was hard for 10 years.
Jeff Galvin: Basically they won't understand, and you don't, you know, you can't educate them, so you have to keep it secret.
Maria Mejia: I’m glad I taught them, but you know, they're very Catholic, very judgmental, very, you know, and uh, even ignorance, you know, but I taught them, I educated them throughout those years.
Jeff Galvin: So, you said you were open with your family then?
Maria Mejia: No. My mom and I came up with a condition, I call it a condition, a human condition.
Jeff Galvin: Yeah. So, basically, you presented it in a different way, so you didn't have to deal with the stigma.
Maria Mejia: Yeah. For the first 10 years, they thought I had leukemia, because we came up with either lupus or leukemia. Let's go for leukemia, because I was gonna die, that was the reality.
So we went back home to Colombia to my grandparents' house, and believe it or not, for those 10 years I was there, I was put there for a reason. That's a chapter of my book. I have a book called "From a Warrior's Passion in Pain," and I became a caregiver of my grandparents, and I gave them the most beautiful last years of their life.
I mean, they were my children, I didn't have children, but they became my like my children. I would bathe them, I would clothe them, I would change their diapers, I would like dress them up like in their times, you know, with the gloves and I mean like, you know, I would play with them like they were my like little dolls. I would put on their music, which is tango music, and you know, all those beautiful things. I love the elderly.
Jeff Galvin: It was actually a good part of your life in a way.
Maria Mejia: That's actually when I became, like that's what I call my spiritual transformation, because I no longer hated God, or I started loving myself. I saw that I was worthy, not like my father said that I wasn't. I was worthy, and I saw that I had like a mission to or I had this thing in need of helping others. I didn't have to do that. It came naturally. I wanted to.
Jeff Galvin: I think we all have that inside, actually. That can be very fulfilling too, to serve, to help other people. Yes, it really is.
Jeff Galvin: Well, look, if you don't mind, I'm going to shift a little bit here because I want to know what it's like now. Okay, so you know you are, I assume you're on antiretroviral therapy, you're suppressing the virus. Is it suppressed to the point that you're undetectable?
Maria Mejia: Absolutely. As I said, for the first 10 years in Colombia, I had no medication, so I did have some family there that are physicians that I disclosed to towards the end. They tested my T-cell scores, because we didn't even have a viral load count, which is what monitors how much virus we have in our blood.
Jeff Galvin: Right.
Maria Mejia: And we didn't have that. So, they told me, you know, you're in the red line. A normal person has from 600 to 1,500 T cells, which is a part of our immune system. It's not all our immune system, but that is a very important part of our immune system to help us with different things like viruses and bacteria and things.
So I said, "What do you mean I'm in the red line?" He goes, "You need to go back to the United States" - I needed to get on treatment - "because there's better treatment there. You have 39 T cells." I went down to 39!
Jeff Galvin: Oh, so what you're talking about is your CD4 count, it sounds like. So you had a CD4 count of 39. Yeah, that's devastating.
Maria Mejia: That’s AIDS. Because you see, AIDS has a lot of stigma, the word. A lot of people say ignorant things. I educate them because language matters. For example, to say "oh, you caught AIDS" or "you know you have AIDS." No, it's like I explained it this way, very simple. It's like my task, it's just like a cancer. Their immune system goes super extremely down and they get complications like they die on pneumonia. It's never really dying of AIDS. AIDS is the acquired immune deficiency syndrome, it’s a syndrome, basically when your T cells go below 200, you get that diagnosis.
Jeff Galvin: You're getting into that zone. So, you came back to the United States, how many years since you started treatment? How many years have you been fully suppressed now?
Maria Mejia: I came back in the year 2001. They retested me again. I remember the late doctor. He said, "Maria, how do you feel?" and I said, "Well, I feel like a candle is withering away." Because I was still strong and I wasn't hospitalized or anything. I was still walking like, you know, I'm looking like this.
Jeff Galvin: Not any symptoms yet. That's amazing.
Maria Mejia: I was starting to. Like thrombocytopenia, which is extremely low platelets in my blood and I guess spontaneous hemorrhages. I mean, it could have gotten even worse. I even had an extremely low platelets that the doctors were in shock why I wasn't just bleeding out of my eyes, ears, nose, everything.
I am a very blessed individual. I'm here because of the mission, that's why I didn't die and I fought. I had two options, either lay down on a bed and die or fight and survive and then thrive, which is what I'm doing now and helping others.
So he said, "Maria, you are dying. If you don't get on treatment, you are going to die. I give you a month to live. And that's, are you ready to take treatment?" And I said, "Yes, doctor, I'm ready."
So he put me on treatment. It was extremely hard for my body to adapt to because back then, the medicine was very toxic.
Jeff Galvin: What sort of side effects did you get from the meds at the time?
Maria Mejia: Oh, I felt like I was dying. I mean, there was a month in bed.
Jeff Galvin: So you felt sick.
Maria Mejia: I felt like my brain was burning, like my veins were on fire.
Jeff Galvin: Oh my gosh!
Maria Mejia: It was horrible. It was not easy, but there were even worse ones in the mid-90s that I didn't have access to. A lot of my friends have a lot of complications because of those meds. We were like the guinea pigs for the people that are diagnosed now, with the injectables, with the medications that are less toxic. I have thousands of emails a week from people who are recently diagnosed or who people who…
Jeff Galvin: They need to understand that even though those side effects are really history, that's no longer the situation today.
Jeff Galvin: So, how long did it take for you to get controlled, and what is it like today?
Maria Mejia: Well, it took four weeks for me to become undetectable.
Jeff Galvin: Wow!
Maria Mejia: That's usually what it takes. That's how good the medicine works. That's why I'm an advocate for treatment.
Jeff Galvin: That’s amazing.
Maria Mejia: I'm one of the first ambassadors for U=U (Undetectable = Untransmittable) with the Prevention Access. We fought the medical community globally to say the truth: when you are virally suppressed, you cannot pass HIV to anyone.
Jeff Galvin: That's an important thing for people to know. That's right.
Maria Mejia: Of course, because the stigma is easier to disclose when you know that you could tell a person that there's science to back it up: I'm not saying it, the scientists and studies that show that undetectable equals untransmittable. We’ve gone so far.
Yes, I recently wrote a blog that was very hard for me to write, which was called "HIV Took Away My Motherhood." In the circumstances that I was in, I didn't want to bring a child into this world. In those times, my child would have died most likely. But people say, "Don't get sad. You know how many young people you've mentored? Those are your children, and your grandparents are your children," which helped me heal a lot, and that is true. But that's something that I'm very well aware of.
Jeff Galvin: Nowadays, if you are well-controlled on antiretrovirals, in modern antiretrovirals, you can have a child, and the chances of passing it to the child are almost zero. You don't have to lose that opportunity for motherhood. For you, it's different.
Maria Mejia: It was still mentally embedded that it shouldn't happen, because this is the consequences, and it was just like something that I blocked myself from doing. Because I had doctors here telling me, "Maria, have a child." I would be like, "No, no, no, no." It was just like…
Jeff Galvin: Even you had a hard time sort of accepting that. Yeah, because this is something we know at this point, right? Yeah, that you can have children, and they will not be HIV positive. And if you're well-controlled, you can have a husband, and you won’t pass it to them.
Maria Mejia: Of course. You can live almost a normal life, and it's so wonderful. I work for like seven new places, but one of them, which is one of the most important places for me, is a women's organization, a women and girls organization called The Well Project, who basically are a group of women from all over the world. I'm one of their global ambassadors and one of the first people that when it started, the organization, because you really look at the research, there's not a lot of organizations for women. So we have very powerful women that empower other women, and they empower their communities.
It has gone so far. Science has gone so far that one of our people, one of our members from The Well Project, her name is CC, she took the risk because of Undetectable=Untransmittable, she's breastfeeding her child. You can breastfeed your child. You won’t transmit HIV to your husband or to your wife, or to whomever. You don't have the burden that I had, because almost all my partners, long-term relationships were HIV negative.
Even though they didn't really care, they said, "you know, we're all going to die from something, I love you," and it was like that. You know, I was really never stigmatized as far as relationships.
Jeff Galvin: That’s good, for relationships it didn’t get in the way.
Maria Mejia: For me, because I still have people crying to me, emailing me, sending me messages. It's mostly heterosexual men, which are the most in the closet, because they are afraid to come out to their families, because they're going to be told…
Jeff Galvin: It's double stigma, right? They're heterosexual, but everybody will immediately think they're gay.
Maria Mejia: Immediately.
Jeff Galvin: Yeah, that's right. Yeah, that's so funny. Well, not funny, but I mean, tragic, yeah.
Maria Mejia: It’s horrible actually. They all feel lonely. They all say, "I'm never gonna find someone that loves me," and I say, "Listen, first of all, you disclose to someone" - because I'm kind of harsh in my education. I don't baby them because I come from a time where I fought and I shouldn't even be here. I'm also one of the founders of the largest international support groups in the world with more than 40,000 active members in English and in Spanish. I founded that group many years ago, so basically I did everything that I thought that I would like to have within those times that I had nothing. I didn't have anything, internet, no support groups, no nothing.
I tell them, "Listen, stop. I understand I have to be sometimes a little bit more compassionate, but stop with this thing that your life is over, that your life is over. No, you have good medicine, you get married, you'll go to school, you have access to treatments. You cannot go and disclose to someone ‘Oh, I have HIV’ in a way that is stigmatized."
I tell them there's people that get rejected because they have a child, because of a different religion, or whatever the case may be, so I try to empower them, not baby them, but I recognize it sometimes I have to be a little softer, but sometimes I just don't have patience because I have seen hundreds and hundreds and hundreds of friends of mine that have died, almost a whole generation that was wiped out by this condition.
So, I have, as a long-term survivor, we're a group of people around the world, there's not many of us and we have a lot of special conditions, maybe we have PTSD, we have anxiety, we have depression - I've written a lot about it - and survivor skills, you know. Because I see children dying, I see a grandmother dying, I see and I think "why am I still here?" But now I don't question that. I know why I'm here, I know what my mission is and my purpose, and until I fulfill that mission and purpose that God put me on this earth for, not only with HIV, but all the things that I have done, because I'm very involved in politics and human rights and you know especially with access to health care is a human right.
So, I had to go and fight with Congress and senators and you know I'm very involved in that. My dream is to be a congresswoman, which hopefully I will be one day. Maybe I will be, you know. A lot of people believe that, because I'm very involved. I've already helped pass legislation, you know, for not only for people living with HIV, but for the LGBTQI community, and I'm involved in social justice and racial justice and women's rights, undocumented immigrants. I don't talk about this a lot publicly.
Jeff Galvin: When I think about it, you've taken this incredibly diverse and difficult background, and you've turned it into a series of experiences that are really valuable to other people. I keep hearing you say that people are writing to you, and that sounds like a really good thing. It sounds like you're an amazing resource of experience within this special group of really long-term HIV survivors.
Jeff Galvin: How can people get in touch with you? Do you have a website or something? How do you like to communicate?
Maria Mejia: I am all over social media, including TikTok, Instagram, YouTube, Facebook, and Twitter, with the HIV in the middle because I have no shame, because there is no shame of having this, like I said, and that's why I put it in people's faces.
Jeff Galvin: It's empowering just by itself right there.
Maria Mejia: I'm the only person in the world that has that. If you Google my name, you’ll find a lot of my work, interviews, and things that I have done for communities. Things that people don’t know about that I do because it’s behind the scenes and not paid. I am one of the contacts in the United States for people that are undocumented, not just from Latin American countries, but all over the world, that come here with no access to treatment, and I have the key points in every state, not federally funded by the government, but funded by private donors.
Jeff Galvin: So even people that cannot find…
Maria Mejia: Contact me.
Jeff Galvin: …can contact you and you can connect them with treatment.
Maria Mejia: With a doctor, with medication, with transportation, with labs. I am saving lives. I have saved so many lives by doing this.
Jeff Galvin: I'll tell you, Maria, you are an amazingly energetic person, and with amazing life experience. I really appreciate you sharing it so openly with us today. I think that people can take a lot of strength from you by example, that all of these challenges are survivable, HIV for you just being one of them. It just seems like you're an amazing resource for the community, and I know that everybody listening to this video will really appreciate that as well.
Thank you again so much for joining us today and sharing your story.
Maria Mejia: Thank you very much, and I wish you much love in life.