"The secret to my survival is that I want to live," says HIV/AIDS advocate, mother and long-term HIV survivor Michelle Lopez. Back in 1991, Michelle left behind a partner who beat her and, she would soon learn, knowingly put her at risk for HIV. With nothing but her infant daughter, Michelle set out to find help -- and help did come, in the form of a subway ad for community health services. She sought out the agency, got her HIV diagnosis (and her daughter's) and got right into care and services. For the past 17 years she's been on staff at that very same agency, helping immigrants and women facing similar challenges to the ones she once faced. Michelle is a strong voice for her communities in the fight against HIV/AIDS -- and she's raised her daughter, Raven, to be an advocate just like her. "I love Michelle today, and I can teach other people that," Michelle says in this edition of This Positive Life_. "We have got to start loving us, no matter what: HIV, gay, black, lesbian, Latino. You know, we are somebody."_
This interview took place in late October 2009.
Michelle, let's start at the very beginning. When did you discover you had HIV?
I got diagnosed in 1991. Actually, my daughter was nine months old, a newborn baby. I was living in a domestic violence situation and, one night -- I always tend to say, in fact -- it was one of the worst, but it was one of the best, beatings that I got from the partner that I had. Because he beat some sense into me. I left.
I was living in Brooklyn, and I just got on the train and decided I'm going to get help some how. I started riding the train, switched trains and ended up -- this must have been around, like, 9:30 -- on a No. 2 train in Brooklyn, and I saw this ad on the train. The ad said, "If you, as a woman, are dealing with any kind of substance use issues, domestic violence issues, and you need help, you can call this number." And I got off the train.
Were you with your kid?
Yeah, I had my daughter wrapped in a blanket. We were just riding the trains all night because, again, as I said, I left. I left just hoping that I was going to get help. And help did come.
I had one bottle of milk for her, literally. And her, wrapped in a blanket. She had two diapers. So when I got off the train, that was the fresh change of diaper that I gave her. She hadn't eaten for that morning, because she drank the milk that night.
I called the number and somebody really did answer the phone. I was standing at the corner of Nevins Street and Flatbush Avenue in Brooklyn, and the person who answered the phone for that ad was literally six blocks away from where I was standing. That's how faith and hope are.
I told her what was going on. I went down to the facility. Because when I told her where I was standing, she was just amazed. So she told me, "Come down to the center." At that time they were called Community Family Planning Council. They had a grant in at the time to help women who were underserved -- if you were an undocumented immigrant woman, if you were a woman who needed help.
When I walked in there, after an hour of talking to her -- she was the head nurse -- and telling her the situation that I was living in, one of the things that was offered to me was, "Would you like to take an HIV test, based on the situations that you just explained to us that are going on in your life?" I agreed to take an HIV test that was offered to me that day. I saw a doctor. Because I hadn't seen a doctor since after my daughter was born, because I had no health insurance at that time. I was what we call an undocumented immigrant. So I had no health insurance and I was not seeing the doctor.
Where are you from?
I'm from Trinidad, in the Caribbean. I shared with the nurses, and, as I said, I saw the doctor that day. And unbeknownst to me, because of me not having any health insurance, me not being in the health care system, I was also walking around with gonorrhea. So I had to be treated for gonorrhea that day.
I just went and delved right into getting health care and health services from this community health center. I can tell you proudly today, I'm on the staff of that agency. I've been working there now for the last 17 years as full-time staff, giving back to my community.
So even if you're not documented, you can still get help?
Absolutely. You can get help as an undocumented immigrant. There are no undocumented immigrants. We just don't have the documents that America wants us to have to live here. America knows very much about us. They know about our existence. So we are not undocumented immigrants. I have to make that declaration.
How old were you at this point?
"The population of people that I work with, it's the same pathway that I came from. I am identifying a lot of individuals who are undocumented immigrants, who have been living here in this country, who don't have any health insurance."
I was 24. I had a baby. I have a son, and he's 22. At the time he was 3, going on 4. He pretty much really was not living with me at that time because, again, of the situation that was going on. There was drug use going on in my life. I can say that it was a very unhealthy environment. So I had willingly given my son to be with my parents in the Caribbean. Because there was a lot that was going on in my life where I just needed help.
The organization, one of the first things that they did: I had to be placed in a shelter for battered women, because of the situation. I was bruised. I needed help. And help came to me right away.
The population of people that I work with, it's the same pathway that I came from. I am identifying a lot of individuals who are undocumented immigrants, who have been living here in this country, who don't have any health insurance. So through various outreach mechanisms that I know of, the pathways that I used to be in -- emergency rooms, people being discharged from the hospitals -- I have made outreach contacts with providers, who can pick up the phone and call me and say, "Michelle, we have another person ..." Because it's very true today: There are a lot of individuals who are walking around with HIV, and have no idea -- until some of them get very ill, go through the emergency room and now have to be hospitalized.
"I disclose my status, and I talk to people about who I am. It's not about me, but I use my life in the examples: Now I'm in health care. I have 20 years of living with HIV under my belt. I'm _living_. ... I _am_ somebody."
So when they're getting discharged and they have no health insurance, I'm being called. And the agency, Community Healthcare Network, who I work for, we have health insurance that can, right away, get them into health care. We have medical services. We have grant-funded case managers who can help them navigate the different needs, from legal services to housing -- because some of them are homeless. Some of them are living with family members who have no idea that, now, this is AIDS. Because they just got diagnosed as HIV positive but, I can tell you, because of the complications they're hospitalized with, they all have AIDS.
So I'm working with that population. I go out to shelters. I disclose my status, and I talk to people about who I am. It's not about me, but I use my life in the examples: Now I'm in health care. I have 20 years of living with HIV under my belt. I'm living. And I have services. And I have a life today. And I am somebody.
I have got to also work with them in dealing with the stigma and the discrimination that are out there. A lot of immigrants, we face it on a daily basis. So I get them into care and services.
A Video Excerpt From "This Positive Life: An Interview With Michelle Lopez"
Let's back up to when you're just starting out. What was your first feeling when you found out you were HIV positive? Did you know about HIV?
"I knew about HIV a whole lot, but I knew about it because most of my gay friends were dying from this disease. ... I remember these guys saying to me, 'Oh, Michelle, you have nothing to worry about. Thank God you don't have to worry about this.'"
I knew about HIV a whole lot, but I knew about it because most of my gay friends were dying from this disease. So I remember. Because there were times that ... I'm a person that, I love cooking. There are things that you can do that don't have to be financial to help someone. So I used to go to my friends' houses and cook for them, and clean their houses for them. And I remember these guys saying to me, "Oh, Michelle, you have nothing to worry about. Thank God you don't have to worry about this." They used to tell me, "I have AIDS, and I'm dying." Some of them died. I was going to these funerals. So I never knew the affiliation between this disease and women.
So now, here I am, diagnosed. I remember having a case manager assigned to me. And I can tell you, my biggest fear -- and that's all I kept thinking -- was that my kids were going to be taken away from me. I've said this on numerous occasions. It's one of the biggest fears that I was concerned about. I wasn't scared of dying. I really wasn't. My fear was that they were going to come take my kids away from me and deport me, because both my children are American citizens.
How do you think you got infected?
I think -- I know -- I got infected from having unprotected sex. Women are vulnerable, period, to this disease. And I still think today the level of vulnerability is because of the misinformation and mis-education that's out there. This whole thing, talking about who's at risk: We're all at risk. If you're having unprotected sex today, as someone living in society, you are at risk of contracting HIV.
"My vulnerability was because of my immigrant status. I was under this impression that this man, my daughter's father, really did love me ... And after me and him marrying, I would have gotten a green card."
Coming back to this whole vulnerability -- my vulnerability was because of my immigrant status. I was under this impression that this man, my daughter's father, really did love me, and he was going to marry me. And after me and him marrying, I would have gotten a green card.
I never got the green card. But he has HIV.
I put up with a lot. I put up with a whole lot. We are so susceptible, and we become submissive immigrant women. Because we're truthfully believing: "This person who I love, and I'm dedicated to this person, and I'm here, just being all for this person, I really thought the right thing would have come out of it." But I think that's sometimes a fantasy world that some of us get cast into, not realizing.
So he's out there, and that's how I became infected. Now, we have a child. Raven, my daughter, is HIV positive too. I'm not breaching her confidentiality -- she now goes and speaks around the country, talking to young people about them being aware of this disease, and how to prevent it within themselves. Because she didn't have a chance to prevent it.
I have had groups and discussions with women, and I truly believe men still do not have a safe podium from which to tell their status to a woman -- not just men, but I'm using my experience today to talk about where I was at back then. After 20 years of having to deal with this and understanding the impact of this disease, and the impact of what he had to deal with: He was someone who had to go through the penal system, is an African-American man, and had a lot of issues going on in his upbringing.
He never disclosed to me that he was HIV positive. So I gotta tell you: Clearly, within my healing, I have learned to forgive him. Because he was a victim of the system.
He knew. He did admit to me later down the road. We don't speak today because he's very hateful toward me, because I have talked publicly about how he is the person who I knew I contracted the virus from. When he found out that he was HIV positive, I was already into my fifth or sixth month of being pregnant.
We had separated. Remember, I was living in the shelter. He never told me that he was positive so I could have had an opportunity, even so, to be counseled, and to talk about how systems and how situations put me even more at the risk. Now here I am today, living with HIV, and I'm raising a child who is HIV positive, and it could have been prevented. During my pregnancy, if I was counseled and offered HIV testing, absolutely, I would have done it. I was never tested during my pregnancy.
I knew after she was nine months old, as a newborn baby. So I did breast-feed her. What are we told during prenatal care? What is the best thing for your babies? Pregnant women were not getting the HIV education we have today in New York State.
Those of us who are positive: Our stories are not just a story to tell, looking for sympathy. It's an educational piece. Our experiences are what have made it better and safer today for people who are negative to know why it's important for them to know their HIV status.
We have very, very common ground with people who are negative. People judge us. Some people think that we deserve this. Some people think, "Oh, they caused that themselves." No. You sit and you speak to someone who is HIV positive -- what you're doing right now -- and you listen to our story. People should hear it. If people hear what we are saying, they can see where the common threads are, with us and them. They can learn from our experiences to protect themselves: knowing their status; getting tested today; and having access to care and treatment.
It's very unusual for someone who was diagnosed in 1991 to have survived this long. It was the dark days, before there was HIV treatment available.
It was the very dark, grim days. In 1996, I came down with AIDS. Some people say full-blown AIDS. Look, AIDS is AIDS. If you got AIDS, you got AIDS. OK?
I had T cells of 84. My T cells today are 1,028. I have an undetectable viral load: less than 50. And how did that happen? That just shouldn't happen overnight. Coming from an AIDS diagnosis, I was very fearful. I had PCP -- [pneumocystis] pneumonia. I had oral hairy leukoplakia, which is one of the complications related to AIDS.
And here I am today. I'm pretty healthy. But I have to admit, there are complications that I'm still dealing with because of my having a compromised immune system. I just came out of the hospital, having rectal surgery. How many women do we know who can talk about: "These are the complications that I'm living with"?
I share the things that I go through because those of us who are living with this disease have got to pay attention. Because it's not just about getting our CD4 count to a high number, and our viral load undetectable. That's the crux of us helping our immune system be able to fight this virus. But because of our immune system being damaged throughout the course of HIV, there are some complications that we are now diagnosed with. Some of it is undiagnosed.
I have another virus that is causing some of the complications that I have now. I have been diagnosed with HPV [human papillomavirus]. I found out I'm HPV positive. HPV is something that travels in a woman's body, so the doctor diagnosed it vaginally. But I'm a person who, as a child, was sexually molested by my three godbrothers. So I had HPV before I was even diagnosed with HIV.
We really don't know how to treat HPV. But I think we can treat the person, if we do better screenings and a little better monitoring. You know, I think my doctor probably could have gotten a notion way ahead, instead of me having to deal with a rectal abscess. They had to go and cut this abscess, drain this abscess.
I'm not conceited, but I'm a gorgeous woman. I'm a beautiful woman. But this virus that's in my body -- there are days you don't want to deal with its ugly side. You don't. So don't get carried away that you can just pop a pill today, or you can take some medication, and it's fine.
I remember having to take over 26 pills in one day. What I take today for my regimen is three pills, once a day. My daughter takes one pill, once a day. Now, we have come a long way. And I'm grateful. But we cannot take things for granted.
How long have you been on HIV treatment?
I've been on HIV treatment since I got diagnosed.
Were you on AZT [Retrovir, zidovudine]?
I took the AZT. Oh, my God. And what AZT did to me ... I can tell you today: I have clients, I have friends, who take AZT. But AZT back then is not AZT today.
We have learned so much. I was one of the individuals that became severely anemic on AZT. I had toxicities where black and blue blotches would just break out on my skin. I mean, my body ached, my bones literally would hurt. Because when I was given AZT, it was 1,200 milligrams. And I was doing that four times a day.
For a lot of us, AZT did harm us, because of the toxicity. But today, AZT is not the same dose. It's not 1,200 milligrams. We have learned. Some of us had to die. Some of us had to die for some of us to live.
So I know whose backs I'm standing on today.
What do you think is the secret to your survival?
"The secret to my survival is not a secret. The secret to my survival is that I _want_ to live. I have gotten access to care and treatment. I have support from my friends. I have support from my family. Disclosure is not an issue in my life. ... I'm not ashamed."
The secret to my survival is not a secret. The secret to my survival is that I want to live. I have gotten access to care and treatment. I have support from my friends. I have support from my family. Disclosure is not an issue in my life. I have disclosed. I'm not ashamed. I'm not embarrassed.
The main piece of resource in my life is my spirituality. God is in charge of my life. And he has me here for a purpose. He uses the doctors and the health care system, and the people around me, as interceptors to facilitate that. But my belief is, I'm here for a purpose, and I'm going to continue to serve that purpose until He's ready to bring me home to my final place with Him. That's my belief.
How is it having a daughter who's HIV positive? Do you worry about her all the time?
Oh, my God. Constantly. But I worry in a healthy way. I don't worry to the point where it keeps her stagnated. I don't worry to the point where I'm unhappy. I mean, I have good days, and I have bad days. But my good days are so good, they outdo the bad.
I get up and I smile. And the first thing I do in the morning: Whew, I'm alive. I'm happy. And I make the best of my days. I create my own joys. I don't depend on someone to make me happy. I know what it is that can make me happy. I have control in my life today. I'm no longer being abused. I'm no longer being traumatized. I'm no longer in a domestic violence situation. I have control in my life today, where I make decisions.
How open is Raven with her friends?
Raven is very open. Raven is as open as her mom. That's how I raised her. We are not going to be ashamed. We are not going to be embarrassed. I mean, we don't walk around with a sign on our forehead that we're HIV positive. There are teaching, learning moments. Those moments may come as discrimination. Those moments may come as somebody being arrogant. Those moments may come as somebody making a statement that is just so ridiculous. Right away, it's, "That's how you feel? Well, let me tell you something." We use that as an opportunity to educate.
How has it been with her schools?
It has been a lot better today with her schools. She had horrible experiences as a child, growing up, because I did disclose to the school. I choose to disclose because I know my rights, and I know my daughter's rights. So I did inform the school, when she was much younger. Because she had to be on medications during the day, and these are medications that I want them to administer to her the right way. So I did let the school know.
From the teachers to the administrators in the school, they discriminated against her. Raven wasn't allowed to go on school trips. There was a teacher who put on gloves and a mask to teach Raven. Why would you do that? Is Raven having sex with you? Is Raven sharing needles with you? Is Raven lactating so she's going to breast-feed you? No, none of the above.
"One of the outcomes is that Raven really had a very difficult time being schooled as a child living with the virus. Because people were more concerned about the virus than with educating this child."
One of the outcomes is that Raven really had a very difficult time being schooled as a child living with the virus. Because people were more concerned about the virus than with educating this child. So she's still, right now, in the process of getting her high school diploma.
Do you think there were other kids who were more closeted about their HIV status?
Absolutely. Oh, my gosh. I knew of the kids. I remember, one time, we went up against the principal in the high school that Raven was at, because we held a press conference to shame him, and let other people know: This principal is allowing kids in his school to throw food at Raven, make fun of Raven. And this is the Board of Ed [New York City Department of Education]. This is your responsibility. In the hours that this child is not with me, you are responsible for my child's well-being. You are responsible.
And he literally said to me, "Well, you caused this. Who told you guys to be so public?"
I will continue. This is why I'm being this public. That's why we held this press conference. And he said to me, "There's no other kid in my school who's positive." I said, "You are so wrong." "Well, however it is, why don't you tell me who they are?" Oh, my. "I'm not breaching their confidentiality because of your arrogance. No. Absolutely not. But there are many other positive kids in this school system."
And these were kids, I can tell you, who had a lot of health complications, because they couldn't take their meds during school. They were so scared. They saw the things that were going on with Raven. I remember some of these kids; their parents called me. They would either see it on the news or they'd read it in a magazine, or they'd see the newspaper. And they would call me. They were like, "Oh, my God. You're so brave but just please, don't let them know about our kids." Because some of them attended the same doctor as my daughter.
I wouldn't do that. But I showed them: "I'm going to fight this fight until the Board of Ed respects our children -- until they give them equal rights."
What gives you the strength to be so public, where most people just can't do it?
I have zero tolerance for stigma. We cannot keep talking about stigma unless we do something about it.
Don't you feel like you're being battered by everybody around you -- by the public school system, by New York City authorities? I mean, you were their test case.
I am their test, and I will continue to be their test, because I know whose got my back. My family's got my back. My God has got my back. My church has got my back. My friends have got my back. I know whose got my back! And I think maybe that's what those of us who are positive need to know, and build. Build that infrastructure of whose got our backs.
"I know whose shoulders I stand on. I know of the people who died to help me, or to give me that opportunity -- the laws that we have today that protect people."
Because -- and again, that's why I said it early on -- I know whose shoulders I stand on. I know of the people who died to help me, or to give me that opportunity -- the laws that we have today that protect people. As an immigrant, now, I can go back to my country, and I can tell you: The work that I have gotten involved with ... Because I didn't just sit back in my household. I joined coalitions. I joined groups with gay white men, who taught me so much. I joined groups with black gay men, who said, "We are somebody. And they're going to respect us, no matter what. It's not about our sexuality, you know? It's about who we are as a person."
And these are the things that I saw. If we come together in numbers, what we can do. I'm ready to go back to Trinidad and help my country. Because the people in the Caribbean ... Where we are at today here in the United States, the people in the Caribbean are back there, 20 years ago. And I have got to help them. That's my people.
It's exciting for me. I'm ecstatic. I really am! The pain that I felt, and the stigma that I have had to deal with, and the discrimination I've gone through: It's not in vain. It's not in vain. There are still other people who have to deal with what I've dealt with.
So when it comes my way today, I'm like, "Whoo. I've got this. I've got this. You're not going to break me down. I am somebody."
I love Michelle today, and I can teach other people that. We have got to start loving us, no matter what: HIV, gay, black, lesbian, Latino. You know, we are somebody.
Were you always like this?
I've always been a deviant! My mom will tell people, "My God! I remember when ..." "You know," she says, "you're just so different." I say, "You made me. [Laughs.] You and Daddy did this!"
They instilled something. They instilled good values in me. And my parents, when they found out -- it was not until I got into therapy. I said, "I'm going to live with HIV." That's a big part of my healing. I got into mental health therapy. I'm not just healthy physically; I'm healthy mentally. When I shared with my parents the story of my sexual abuse, they had no idea. I was being sexually molested from the age of 7 until I was 10 years old. And they knew nothing about this.
So when I shared that with them, it helped them to understand some of the behavior they saw that I carried on with as a teenager. I was acting out because I was crying for help, but I didn't know how to ask for help. A lot of us don't know how to ask for help.
The mental health issue is so taboo and stigmatized, especially amongst people of color. People think that because somebody refers us to a mental health provider: "Oh, they're crazy. People who are HIV positive are crazy." We are not crazy. We have traumatic things that have gone on in our lives. And HIV is the podium, now, where we are at. So guess what? Use this podium to get the help. We can finally get some help.
There are still a lot of us who are not accessing the health care system -- because we have no health insurance. There are still a lot of gaps. But hold my hand, and guess what? I got some places that I could lead you through; you're going to get some help. So that's what I do. That's what I enjoy doing. That's what helps me go. That's what keeps me going -- knowing that I can help another person. There's so much work out there still that needs to be done.
"This person that you're seeing here, this secure person that you're seeing here; this just didn't happen overnight. I had to build trust with certain people. And I did that."
This didn't just happen overnight. This person that you're seeing here, this secure person that you're seeing here; this just didn't happen overnight. I had to build trust with certain people. And I did that.
With the help of mental health care and other things, you got stronger?
Yes. I got stronger. Because I had to clear out. I had to dump. I'm clean today from drug use. I was using to cope. I was using because that's what behavior is: Behavior is what we know.
My first drug of choice was alcohol. I was a teenage alcoholic, and my parents didn't even know. They had no idea. They just knew, "Why you want a drink?" You know, in Trinidad, rum. They said, "Why you drinking rum? Michelle, 13-year-olds don't drink alcohol." Nobody knew this 13-year-old was having to deal with the pain of knowing what her three godbrothers did to her.
I was 15 when I attempted suicide three different times. And the third time, I almost died. I was in a coma. When I finally came to, a priest was standing over me and telling me: [whispers] "If you die, you're not going to go to Heaven. Nobody's going to bury you." I mean, that's what a priest was saying to me! My God!
This was in Trinidad?
This was in Trinidad, yes. That's the kind of stuff I had to deal with. There are still other Michelle Lopezes who are out there, who are having to deal with that.
"I _have_ a degree behind my name: my life experiences."
You want to find them, and help them?
Yeah, I do. We meet people where they're at. I wish I can meet them. And that's why today, now, I appeal to anyone for us to help our young people. Because we could stop the damage. We could stop the damaged adults that we have in society today. We could stop it in the young people.
It didn't just start from an HIV diagnosis. And I know where it started from. So that's the group. I pay attention to this, when I see young people acting out. I do not have a degree behind my name, but I have a degree behind my name: my life experiences. I do.
Wow. Well, thank you so much, Michelle, for sharing your story.