How did you find out you were HIV positive?
I got tested because someone that I was having a sexual relationship with died from the AIDS virus. His brother actually had run into me in downtown Brooklyn and gave me this news. But that was not the person who actually infected me.
My daughter, Raven, was born in June 1990 -- I had her tested at the age of 18 months. When her results came back positive, I had had no kind of sexual relationship then with anyone but her dad from the time I got pregnant with her until the time she was born. I decided, "Well, let me go contact him," under the impression that I might have infected him. It was not until I notified him that both his daughter and I had tested positive that he blatantly said to me, "Ain't life a bitch. You know how long I have been living with this?" He found out, incidentally, when I was four month's pregnant that he had contracted the HIV virus and never told me anything.
I really have to say that, back in 1991, it was very hard for African-American men to come forward. We were both active users of cocaine. He was my cocaine partner. I think it was not in an atmosphere or a situation that was feasible for him to tell me.
We were both victims of systems. In my pregnancy, I had health insurance. I was working in a very well-known, prominent hospital, and I think that because I was in that category of "private insurance," even though I was enrolled in a high-risk clinic because of my drug use, I was never offered an HIV test. I could have made use of the AZT regimen that was available to pregnant women at that time and protected my daughter from the virus. That's why I said we were victims of systems that failed us.
How did your feelings about living with HIV change over time?
When I was first diagnosed, every bit of fear came into me because I am an immigrant -- not an American citizen. I did not have a green card at that time. I was also being severely battered in a household with someone who was another drug abuser. So I was just under the impression that "Oh, my God, they're going to take my kids away from me. These kids are American citizens. They're going to take my kids away from me and they're going to deport me." So it was major fear.
It changed over time. The organization where I got tested and got into supportive services did a wonderful job ensuring that no part of my care would be linked to the Immigration and Naturalization Services -- from legal services to housing support to family counseling. It's what I call "the menu" -- when you get diagnosed, if you have access to these services, it tends to give you a better perspective: "I can fight this. I can do this." The other part was, I was introduced to a community of people who were living with the virus. And I gotta say, in fact, that it was gay white men that I befriended. And also, I attended this conference that the New York State AIDS Institute had.
So I had an opportunity to meet other people who were living with the virus, who were having a very hard time because, back then, what did we have? But they were learning about medications and services, and funding was now being allocated, and it was these people that gave me hope. That gave me support. It made it easier for me.
How long do you think it takes to process a diagnosis?
It could take one day ... it could take 10 years. I still have my days. You know, I'm very hopeful, I keep talking about how blessed and fortunate I am. But I still have days because society has -- We are ostracized. We are discriminated against. We are stigmatized.
And I have my days that I say, "My gosh, if I didn't have this disease, what would have made things better? Would it have been better? Would it have been worse?" But I have it, and what's keeping me going is, I am doing something about it. And I always say there are hundreds and hundreds of Michelle Lopezes that are still out there today.
I came from a very difficult childhood. I'm an incest survivor, and I truly believe these are factors that came into my life from my childhood and I think this is the outcome. But, again, I am very fortunate that I have the opportunity to do something about it.
What advice would you give someone who has just found out they are positive?
To not segregate themselves, and to seek out and find a community of us who are living with it and doing something about it. Because we are a family and we need as much as we can to keep this family growing. We still need representation of those of us infected to be within the decision-making. When you talk about HIV and AIDS affecting blacks and Latinos and immigrants -- if you look at all of us, we already have some kind of strike against us, and now HIV comes into the picture. So those of us who are infected, we gotta do double the work. Each of us can teach a newly diagnosed person out there something to give them that hope and that menu of survival. We must pass it on.
What conditions in your life put you at risk for getting infected?
My immigrant status, my drug use. You know, I always tend to say, "Oh, I didn't do crack. I wasn't a crack head." I used to sniff cocaine. I used to transport drugs for drug dealers, and that was my method of survival. I did engage in sex work for a period of time where it was in like an escort capacity. So I always felt like, "Oh, I did it in a much better class." But you know what? An addict is an addict. A sex worker is a sex worker. And so I think I just choose these comfort zones so as not to deal with this whole notion of "I am better than" or "I am somebody." Because no matter what, when I was homeless, when I was out there using myself up, nobody was better than me.
My self-esteem also made me submissive to a lot of abuse, and being an immigrant in this country, knowing that I had this strike against me. And still today I cannot get a green card because of a horrible congressional law in Congress called the HIV ban. We must get the United States to lift that ban because it affects immigrants living here. There is still a tremendous amount of work that needs to be done, and I say, "Stay tuned. Because Congress is going to lift that ban and it's going to be Michelle Lopez that is going to lead that campaign. And I'm going to win!"
When you look back, what would you have needed in order not to get infected?
I would have needed an opportunity, for one, to be able as an immigrant to have access to proper schooling. You know, a green card for me -- it plays a significant role in an immigrant person's life. I work, and I support my kids, and I pay my bills, and I'm a law-abiding person. If I had certain resources available to me as a young teenage girl migrating from the Caribbean: I needed family therapy. I needed a therapist to be able to say, "At the age of 16, I was brought to the United States by my aunt because my parents were having a very difficult time with me being rebellious growing up as a teenager." But they never had an opportunity to put a handle on "Why is she doing these things?" They just knew that I was a bad, rude, disruptive kid.
My first trauma came into my life from age seven until 10, when I was sexually molested by my three godbrothers. My parents would take me to a gynecologist to get treated, but had no connect that somebody was molesting this kid. That's why she was coming down with these STDs. That's why she was so rebellious. That's why she kept getting into fights. This is why she attempted suicide three times. They didn't understand what that cry for help was about. So, they sent me to the United States because I got involved with gangs in the Caribbean. They sent me to the belly of the beast! But I didn't join a gang. I just engaged in behaviors so that I could survive. I just wanted to survive.
I share things with my children today. And I let them know of the situations that came into Mommy's life. The things that happened to me, I'm not going to let happen to them.
My mom was an incest survivor. My sisters, they have been molested by other family members also. So certain cycles just had to be broken, and I believe that I have broken that cycle.
How has HIV changed you?
HIV has opened up my eyes to life: It's what you make of it. I took some lemons and I made lemonade. And I made some damn good lemonade! I'm still making that lemonade because, as I get older, as my children get older, my needs have changed and I can't become complacent. I want more for myself. I want more for my community. I want more for my children. This has just made me more of a fighter. I want to continue to let people know that we all can do this together.
And I love the different people that I meet. HIV has made me be more tolerant and more appreciative of who I am, what I have in my life, but also able to share it with another person.
Tell us a little about your life?
We live in the Bronx, in a community that is predominantly Latino, with a population of African Americans. It has an immigrant component also to it. A lot of young people, families, a working-class population. But I don't do much inside -- I go outside of my community to commune. That's why I am doing a search right now to move to Brooklyn. I want to move back to my past neighborhood and I want to be closer to my church.
Where did you grow up?
I grew up in Trinidad.
What did you want to be when you were a kid?
I wanted to be a journalist.
What kinds of work have you done?
Oh, wow! I have worked as a biller, in customer service. I have done babysitting work as a nanny. I have done work in the health field. Oh my God, I have done a lot. But you know what? The work that I always tend to do, now that I sit and I look back, is all people-related. I like working in the public health community sector, giving services to people.
What work did your parents do?
My dad was a longshore foreman, and my mom worked in the court system as a custodian, a civil servant, and even building streets and stuff. Both my parents were very, very hard-working people, and they gave their kids whatever we wanted, my God!
Who are the most influential people in your life, both professionally and personally?
Personally, my spiritual mom and my mother. Professionally, Oprah Winfrey!
Do you consider yourself an AIDS activist? What does that mean to you?
I do consider myself an AIDS activist. Activism means being able to fight for what I know is still needed, or being able also to teach a person what we should be doing as a people; being able to stand up for what we want.
What do you like to do in your spare time?
I love to read. I love going to Broadway shows. I love shopping! I love bike riding -- if I had a better opportunity to be able to purchase a bike, I would do it!
Are you a religious or spiritual person?
I'm a very spiritual person.
Do you attend a church?
Yes, indeed. I am proud of my church, the Court of St. Michael. It is a spiritual Baptist church. We pray to God. But we also do uplift our ancestors and the Orishas, and the deities that have walked the earth. My minister -- the reverend -- is a female.
How does the church address HIV? Do you feel accepted as a person with HIV?
That's how I met my minister, please! She participated in Balm in Gilead's Week of Prayer for the Healing of AIDS. She has provided a tremendous amount of support to individuals who are infected with this disease. It's a humble little church. It's not even one of the big ministries. Her church is in the basement of her house. God, she's an amazing woman. I love her! She has helped me get closer to God. Whew! When I talk about her, I get emotional!
What has been your experience with HIV treatment?
I have gone through a learning process where I came from nothing and I am finally beginning to gain something. I have better doctors today. But yet still I know if I compare myself to a gay white man, I can tell you he has better access to specialists, better opportunity to get appointments in a timely manner, better opportunity to have doctors who will work with him and have dialogue with him and be able to give him information he can really put to use. You know, there are certain tests that, as a woman living with HIV today, I should have already had. I haven't. I am nowhere within the range and the reach that many gay white men with HIV have.
Do you have any other illnesses that have complicated your health and your treatment?
I am diagnosed with endometriosis [abnormal growth of tissue outside the uterus, causing chronic pelvic pain] and fibroids. So I live a life walking around in a lot of pain.
Have you been really ill as a result of this or HIV?
Not within the last two years. I think I have gotten better control over it. Also too, I am someone who does have herpes. I get outbreaks. Again, I don't know if it's just that I don't have enough of the knowledge base or preventative care, but there are times when I go, "Oh my God. I'm in so much pain."
What HIV medications have you been on?
I've been on quite a bit of the cocktails. Within the last year I have weaned myself off mental health meds. My spirituality today has played a very large part in how I handle situations, or what I tap into when I begin to feel overwhelmed.
How do you feel about your meds now?
I understand it a lot better today, so I make my treatment choices with the support of my doctor. It's a partnership.
Any persistent side effects from the meds?
From GI discomfort to skin reactions to neurological reactions. Right now, in fact, I deal with a lot of pins and needles running through my arms and the right side of my body.
I had a negative reaction to Crixivan when it first came on the market, and also to Sustiva. I almost had my children taken away from me because I had a neurological reaction to Sustiva and the social worker just had no clue that this was a new drug the woman is taking, and one of the side effects is that it will affect her neurologically. I was put in the psych ward for eight days. Thank God, my children told the social workers, "Ya'll are not taking us nowhere. Mommy's taking new medications and Mommy's going to get better."
She even commended me afterward. She said, "You have opened up my eyes, because we're going to work with other women who will be taking the same drug, and thank you for giving us a chance to really learn about this drug, because we would have taken these kids away from you."
How would you rate your ability to take your meds on schedule?
I am 95 percent compliant.
Do you have any special rituals or preparations that help you remember to take them?
I put my medications right by my makeup because I love makeup! This is a lipstick lesbian!
How did you choose your current doctor?
I chose my doctor based on me getting their professional background, their knowledge base, and their history of treating people with HIV.
How often do you see your doctor?
I see her every three months.
Do you think you are getting the best care possible?
I know my care can be a lot better.
Is your doctor an African American?
No, she's Caucasian.
Do you think an African-American doctor can understand and treat African-American patients better?
We need to have more African-American doctors who specialize in HIV. I have interacted with some African-American doctors who treat people with HIV, and I gotta be honest, they were not nice. Their bedside manners were horrible. There's a class thing that goes on in the African-American community. When you are a "professional," a classist thing comes up.
I interact with doctors of many different backgrounds. I have interacted with many African-American doctors, and they are very classist. They talk down to us. They wouldn't interact with us. But I will tell them in a minute, "Excuse me. Hello! Keep that class stuff. Take it someplace else, because right now when we're at the table, guess what? I am your equal." So, I address it when I see it.
What kind of relationship do you have with your doctor?
I share with her my feelings toward my care and treatment. If I don't understand something, I tell her, "I look to you to explain this to me. So if I come to have a visit with you and you're just sitting here with a piece of paper in front of you, you know, where is my chart?" And if she doesn't have my chart, I question it. "How come you're here providing care for me? Do you remember what we discussed the last time? Do you remember the last blood work? I need to have a copy of that. And I need to be able to discuss this." I want to know everything that she's learned about me. She's going to explain it to me.
Do you have a particular health regimen that helps you stay well?
My mental health and my physical health, they both must be within the same wavelength because I'm not just going to treat the virus. I am not a virus.
How have your relationships with family and friends changed since you were diagnosed?
My relationships with my family have changed tremendously, and all for the good! One, I have educated my family to the extent where my family knows now that if Michelle is around, at some point, we are going to talk about HIV and AIDS. It's part of our family discussion. It has also brought me closer to family members. It all really helps me to embrace and get other people to embrace who we are, and be able to just learn, love, and share.
When did you disclose to them that you are positive?
I decided to disclose my HIV status because I was just so angry at seeing what discrimination and being stigmatized has done to us as a community. I said, "I'm just not going to take it anymore!" Oprah Winfrey did a show with me back in 1996. I did a show with Ricki Lake. I was just featured in Marie Claire magazine. And it's like, I'm mainstream. We need to have HIV and AIDS again mainstream because it is here and it has not gone away.
When I receive the negative responses, guess what? I brush it off. No matter what, now until the day that I close my eyes and I depart this earth, there are going to be ignorant people, arrogant people. I always say to people, "Whatever you think about me is none of my business."
What is the best response you have ever gotten from telling someone?
That I have given them a chance to save their lives. I will continue to save lives.
What is the worst response?
Someone tried to make me get deported. It was, for me, being rejected by someone whom I had a deep interest in. But again, that was the best thing that could happen because I found out after that she was a piece of work!
How has your sex life changed since you became positive?
It has become exotic! I have learned to eroticize my sex and sexuality. I disclose to people when I meet them and I give them a chance to make a choice. I teach them. I teach them how to enjoy sex, and we do it safely. Honey, I teach people stuff they never thought!
Have you faced rejection from potential sex partners?
No. That's the thing -- it's not what you do, it's how you go about it.
Do you have a policy about if or when you tell a sex partner that you are positive?
If I have a notion that you have some kind of interest in me, I let you know. I want to be able to give somebody a choice if they want to be with me because I'm a public figure! I'm out there.
Even my last partner. I met her at a club, and we're hanging out and she's kicking it with me, and then she says, "You know, let's go outside, I want to talk to you." So we get outside and I said, "Two things I want you to know. I'm a public figure. You might walk down the street and pick up a paper or a magazine and you might see me." And she's like, "Oh, really?" I said, "Well, it's because of the life that I live and the work that I do." She's like, "What?" I said, "I am someone living with the AIDS virus." And her response was, "Well, I guess there won't be no eating for me." I said, "Well, okay darling, we'll take care of that later on down the road." Just like that. And we were together for seven years.
Do you feel that if you practice safe sex, it is necessary to tell a sex partner that you are positive?
Yes indeed. Even if you practice safe sex. Because HIV is so stigmatized -- you could be just seen going into a building that provides services for people who are HIV positive and somebody would assume that you are infected. So you've gotta be able to give this person every bit of opportunity to make a decision for themselves.
Did you make any New Year's resolutions?
No. I'm just trying to lose some weight and move.
What books, movies, music or TV shows have had a big influence on you?
Movies: Imitation of Life.
Books: Maya Angelou. Autobiographies, also. It gives a better understanding of people who have gone through the struggle and how they went about it. It keeps me knowing that I gotta continue wanting more and wanting better.
And music, oh my God, jazz music, because you know, jazz is that thing that I feel to the core. It can be smooth. It can be calm.
There is a flower that inspires me also. The lotus grows through murky, dirty water and comes up to the top. It's one of the most beautiful flowers. I see myself as that metaphor.
What's the greatest adventure you've ever had?
The biggest adventure I've ever had was going back to Trinidad and picking up my son, because I was told by my lawyer, "If you leave the United States and go to Trinidad, you will not be able to re-enter." This is when I was newly diagnosed. My aunts were actually taking care of my son. And I learned that they were not giving him the best of care, so I packed a bag and spoke to my doctor and gave him my mother's address in Trinidad, where I was going to go. I said, "Look, if I don't get to come back to the United States, ya'll are going to have to find a way to get medications to my daughter." And I went down to Trinidad, got my son, and came right back to the United States. It was me and God. I was on a mission, honey, and mission was accomplished.
If you were granted one wish, what would it be?
I wish to see an end to greed and suffering. There's a lot of suffering going on in a lot of ways. Poverty is suffering, abuse is suffering, racism is suffering. Just to end suffering.
Anything else you'd like The Body's readers to know about you?
I'm a good person. I mean no malice toward anyone. I say to my son, "I don't have enemies -- I just have people who don't understand me."
|MICHELLE'S MEDICAL UPDATES|
|CD4+ Count (May 2008): 874 Viral Load (May 2008): < 50|
|Current regimen (May 2008): Reyataz (atazanavir) + Norvir (ritonavir) + Truvada (tenofovir/FTC) once daily -- she has been on this regimen since 2004, and it works very well for her|
Michelle Lopez can be reached via e-mail at firstname.lastname@example.org.
In 2005, Michelle was one of 73 people in the United States who received an HIV Leadership Award from The Body. We interviewed each of the award recipients; click here to read the transcript.
Talk to women about HIV at The Body's Community Center.