This Positive Life: An Interview With Esmeralda, Part Two
Table of Contents
- Sick With Stress, Finding Support: Remembering the Aftermath of an HIV Diagnosis
- Citizenship, Travel and Career Changes
- Raising Kids When You're HIV Positive
- An Infant, a Second Pregnancy and a Recent Diagnosis
- A New Baby on the Way
- Family in Mexico
- Finding Love Again
- Keeping Healthy, Switching Doctors
- Living and Working in Diverse Communities
Housewife, widow, single mother, immigrant, HIV positive, housecleaning maid, volunteer and student are just some of the labels Esmeralda has had affixed to her since she was 25 and moved from a village in Mexico to Oakland, Calif. Today, due to her fortitude and unwillingness to orphan her beloved children, the 37-year-old may be labeled a much-loved mother, wife, friend and peer advocate.
This article is part two of a two-part interview with Esmeralda (not her real name). The first part of the interview took place in November 2007. Esmeralda spoke with TheBody.com again in April 2010, shared new perspectives on living with HIV/AIDS and gave us an update on some exciting new developments in her life since her first interview.
Welcome back, Esmeralda, to TheBody.com. Thank you so much for talking with me.
It's great to be back again.
You were diagnosed with HIV in 1998. Is that right?
How old were you then?
I was 25.
How old are you now?
How has your health been since back in 1998?
It's really great. It's perfect. I don't have any complaints at all.
Around the time I was diagnosed, I was not sick with HIV or anything like that, but I was sick and scared by the diagnosis itself. It's terrible. You feel sick. You're like, "I'll get sick from anything." I was thinking it was because of HIV. I was depressed.
Your body was feeling the emotional stress of having just been diagnosed?
Exactly. And wanting to know what exactly this was. At the time, we always thought HIV was a death sentence. Like, "I have a few months, a few days, I don't know how long." It was, more than anything, the stress of that.
Now it's been quite a while and I've learned how to live with HIV and how to deal with all this. So I try to live, and live good -- live normal, more than anything. This isn't going to stop me, you know?
For how long after you were diagnosed did you feel sick with the stress of being diagnosed?
It took me a while, because I wasn't coming out at all. I didn't talk to anybody. I felt like everybody just looked at me and knew what I have. It took me a couple more years to become more normal, in a sense -- to start to live like, "OK, this person knows, this person didn't know" and be OK with that.
Then I started going to support groups and meeting other people with the same problem. I saw people who have had HIV since before there was medicine, and they were alive. Now we have a few more choices, so we can try to live.
Also, I have my children. There was nobody around them, nobody to look after them, so I decided, no matter what, that I have to live a normal life for my children. There's no other way.
It took me a couple of years or more. It's been a while.
How did you find the first support group that you went to?
The social worker at my clinic told me, "We have meetings -- meetings with other people over here." At the beginning, I didn't want to see anybody. But then one day, I decided to go to see what it was. And I just met great people who supported me and my children and hugged me, telling me, "You're not alone." They made me feel great, you know? They made me feel great.
I had been living with some relatives and they had their issues around what I ate, and the dishes I ate off of. It was a little hard to go through that. When I started talking to the women at the support group, they treated me like family and supported me, and they had the same problem. It was incredible.
When you were first interviewed, your job was cleaning houses full time, you were going to school, and you had also started volunteering with WORLD [Women Organized to Respond to Life-Threatening Diseases] in Oakland.
Yes, I was cleaning houses by myself and I was volunteering here at WORLD and at La Clínica de La Raza. Aside from that, I learned a lot going to school. Then I was working on my legal papers over here in the United States and getting my green card, because I'm from Mexico. It took me a while to finish that. That happened in 2008. I got my residency here, so my kids and I were able to spend some time in Mexico. We went over there for about four months. It was great going back to Mexico, and taking my kids over there.
Where did you stay when you went to Mexico?
My parents are in Mexico, so we stayed with them for some time, with a sister, with another sister -- I have two sisters there too. It was a really great experience for my children to go visit their grandparents and their cousins and aunties. They love it. They said, "We want to stay here!"
That was in 2008. Then when I came back, there was an open job at WORLD, one of the agencies that first helped me meet more women with HIV. I'd had a peer advocate over here at WORLD who helped me out with school and finding volunteer jobs, and learning to speak with agencies and providers. Then I got a job at the end of 2008, as a peer advocate over here at WORLD.
I really love it, because it gives me the opportunity to help other women who've just been diagnosed, to tell them I've been there and I passed it, and now I'm here. I love my job. I keep having new clients who just found out they're HIV positive. It's not like, "OK, great," because people keep getting infected, and that's not good. But I'm here to help them, and that makes me feel great.
Can you describe some of the work that WORLD does? Is it common that people start out volunteering there and end up working there as peer advocates?
We have The Lotus Project, which is a project that trains HIV-positive women to become peer advocates, to advocate for themselves and help other women. The way we do it over here, peer advocates work together with the hospitals or with the clinics and with social workers, and we meet the women and make them feel comfortable.
Sometimes they tell us more than they'd tell a social worker or a doctor. They get comfortable with us, because we disclose to them. They say, "You're one of us. You feel what I feel." They open up to you. It's great to help a person to come out, and to tell them, "I've been there and this happened and this happened. You can be just fine." They get to where they say, "OK, if you can do it, I can do it." It's one of the things we do over here at WORLD.
Has working with WORLD helped you to be more open about your HIV status?
Yes, it has. I can tell most people. I don't really go openly in public and go on television with my name and my face. I don't do it, because there's still a lot of stigma around. I do that for my kids, because of the stigma in school, and other kids finding out and saying, "Oh, you're this."
My kids know I'm HIV positive, and sometimes they hear comments about people with HIV. My daughter fights it. She says she comes out to fight it: "If you don't know what you're talking about, just don't talk!" She talks about it, because she knows. My kids will come to groups with me, and they learn about it. But I don't come out really openly to the public, because I don't want my kids to have a hard time at school.
It sounds like your daughter really knows a lot about HIV.
Exactly. The other day she was doing an essay about HIV and medication. I read over it -- it was on the computer where she typed it -- and it was excellent. It was just like the magazine we do over here at WORLD. She learned; she knows what she's talking about. That's great, because that way my children can protect themselves too.
How old is your daughter?
And how old is your other child?
He's 12. They're really close in age, those two.
Are they good friends?
They have good times and bad times. Sometimes they talk like really good friends, talking about music, about movies. Then sometimes you just hear them fighting for no reason!
How did you tell your kids that you were HIV positive? How long have they known?
They were around eight and nine years old, and one day we told them. I thought it was time. I've always been with them. I always took them with me when I went to groups. I always took my pills in front of them. I never hid anything from them. They didn't know what I was taking medicines for, or what the groups were that I went to. Sometimes at the support groups, doctors would explain about HIV, about medicine and things like that. My children would hear, but they never came to me and asked anything about why I went to these groups.
I have a friend who has a child who's HIV positive. They told their family's story on television. My children saw that, and they saw the little friend who used to play with them who's HIV positive, and her mom telling her story. It didn't show on my children's faces, but they recognized. Then we sat with them and talked to them and explained what HIV is, and that you never make anybody feel bad because they have this condition. Then as well, we told them that I have this condition and that their father died from this condition.
One day they started paying more attention when we'd go to the groups or when we'd see something about HIV on TV. They started reading about it and then asking questions more often. They take it great. They have questions, and we answer according to the question they ask. For now, they have no problem with anything having to do with HIV or AIDS.
One of your kids is a teenager and the other is almost a teenager. What's it like having kids of that age, or of at any age, and being HIV positive?
It's hard, believe me. I think it's just like any other person who has to look after them. They become teenagers and sometimes they come with some different attitudes. They think they know a lot. I have to take the time to sit with them and talk to them and calm them down. But I think it's just as normal as a person who doesn't have HIV. I think it's no different at all. Teenagers are at a difficult age, but I don't think HIV makes a difference.
One thing I do is I talk to them more openly and clearly about looking after themselves, taking care of themselves, that HIV could happen to anybody. I think it's easier to tell them, "Take care of yourselves and protect yourselves when your time comes." I think it's a door open there to speak with them.
When you say "when the time comes," do you mean when the time comes for your children to become sexually active?
Exactly. When they grow up, they'll probably think more about HIV, because they know what it is, and they're living with it. Hopefully, they'll probably be more careful and more conscious about it.
You have two children now, but do you want to share your recent news with our readers?
Yes! I have two children and I'm having another child. I'm pregnant -- more than six months already -- so I'll be having a new baby in June. Everybody's excited. My children are really excited. We're all waiting for him. We can't wait for him to come out! [Laughs.]
It's coming up soon too. That's exciting!
When you had your first two children, you didn't know you were HIV positive, is that right?
No, I didn't know. I had my first child, and then a little while later my husband started getting sick. He got sicker and sicker and we didn't know what it was. When he got sicker, his brother took him to the big city -- the capital. They found out that had AIDS and he was really advanced. They said there was nothing to do about it anymore, and he died. He died in the hospital there. I wasn't able to come and stay in the hospital with him. They wouldn't let me come in with my baby -- I was still breastfeeding my little one. When they brought him back, he was dead already in a box. It was really, really hard for me. A really, really difficult time.
When we buried him, the family told me what he died from. It was really, really shocking for me. Like, "How is this happening? What is this?" Even though I didn't have any tests done or anything like that, I was sure I had HIV. I was feeling sick already from it. About four months later, I found out I was pregnant. That was a really difficult time too because I thought, "If I have this infection, how am I going to look after my children?" I thought my children were going to become sick too. I stopped breastfeeding my baby.
When I found out that I was pregnant, I thought, "Now what am I going to do? I have HIV. My daughter probably has HIV already. And I'm having a baby with HIV." I was just ready to die. I just wanted to die, in those moments. It was just too much. I just couldn't live with this.
I was in Mexico, and family from my husband's side said, "Maybe you should come over here. We can help you with the baby. At least if you get sick, we can help you over here." I didn't have any support from anybody, so I decided to come over here.
I came over here to California. That's when I found out I was pregnant, and my sister-in-law said, "We should arrange for you to have an abortion." I didn't like the idea. I said, "If the baby's sick or whatever, it's going to die anyway. I'm dying myself. What's the point of having an abortion?"
I went to the doctor, and they gave me my HIV-positive test results and then said, "Your baby can come out fine if you start taking this medicine." So I started taking medicines to protect the baby from getting HIV. But still, I worried about my daughter because I breastfed her. She was already one year old, so we took her for a test too and it came back negative. They said, "She's one year old and the test is negative. There's a great chance that she doesn't have HIV. If we have another test done, when she's a year and a half old, and that test comes back negative, that means she's fine." That gave me a lot of hope.
Everything turned out fine. Both my children are negative. Both are great. Both are healthy and both are big now. Both are troublemakers.
Now I'm having a baby consciously. It's going to be fine. I have two fine already. This can be fine and I've been looking after myself and everything. I've been taking care. So this baby's going to come fine too. It's great. I'm not that worried or that scared anymore because I know it's going to come out OK. It's going to be OK. I do everything I have to do to be fine.
What do you have to do? Are you taking different medications now that you're pregnant than you were before?
It's the same medication. It's different medication from my last baby, but I've been on this medication for seven, eight years.
What regimen are you taking?
I'm taking Epzicom [abacavir/3TC, Kivexa], Reyataz [atazanavir] and Norvir [ritonavir]. The doctor said I don't have to change.
I talked to my doctor before I got pregnant. I said, "Me and my husband want to have a baby." The doctor said, "Fine, you can go ahead. We don't have to change the medications that you're taking right now. This medication is fine. It's the medication we give when a woman wants to get pregnant or when a woman is pregnant. It doesn't affect the baby, and it's medication to protect the baby too." And it's working.
Is there anything that you wish you'd known when you were younger and raising young children that you know now, as you go into raising this new little baby?
There are a lot of things you learn along the way. It's amazing, the stuff you can learn. When I had my first baby, I panicked, you know? Now I know a lot more stuff, like the baby can listen from your stomach if you talk to him. When he's born, you can talk to him and read to him. I didn't know all that before!
I was really scared at that time, having a baby and being HIV positive. Now I have decided to have baby and I have HIV. It's really different.
Do you have any advice for an HIV-positive woman who might want to have a baby?
Just go to the doctor, tell him "I want to have a baby," and get ready! Don't be afraid. Babies can be great! I'm having a baby, and many of my clients say, "Oh, I want to have a baby." Also, I have many clients who were pregnant who had the babies already, and they're healthy.
I just went to a C-section [Caesarean section] last August. The baby's really beautiful now! The woman asked me to be with her while she had the C-section. I was the one with her taking pictures, with her and the baby. That was a great experience for me. It was amazing, and the baby's perfect.
It's no different having a baby as an HIV-positive person than having a baby as an HIV-negative person. The baby can come out fine. I have a few other clients who are having babies and also I have many who come to me and ask me, "I want to have a baby. How do you do it?" I advise them to just talk to the doctor. If you're undetectable, if you're fine with your medicines, just talk to your doctor and say, "I want to get pregnant," and get pregnant. Have a baby, and have a great life.
You mentioned you were in Mexico in 2008 and you were hanging out with your parents and your aunts and uncles. Have they come around to being more supportive of you, now that you're married? Do they know that you're HIV positive? What's been your relationship with them around HIV?
When my partner died, I left and I didn't really have contact with them. I stopped calling them, and they couldn't find me. Then I met a person over here and got married again, and I didn't tell them. I'd talk to them every weekend. I'd give my parents a call, to see how they're doing. Then when I get a boyfriend, I didn't tell them. But my sister -- she lives here now -- she told them.
They never said anything to me about it, but after that they'd ask me how I'm doing and how my partner's doing. So they became fine with it. When we visited them, my husband came with me. They really like him -- even though he doesn't speak Spanish, they don't understand each other, they have a really good connection and they really accept him and they really like him. They're fine with him.
But they don't know that I have HIV. I don't want to tell them because I want them to see me the way I am, healthy and not having health problems, because that's the way I feel. I don't want to give them something to worry about, because I'm doing fine. I just tell them I'm fine. They're old now, 70, 69 years old. If I told them, I'd have to explain many, many things. Sometimes they don't understand, so I just want to leave it like that.
It sounds like, if you tell them you have HIV, they'll just think you're sick, so they may as well just see that you're healthy and not have to imagine that you're sick when you're doing fine?
Exactly. Also, in Mexico, there's a lot of discrimination against people with HIV. It's not easy. I don't talk to anybody over there about it. I can talk, but if a person never wants to understand, why should I argue? Why should I explain to somebody who's never going to understand?
How did you meet your husband, and when did you two get married?
I met him about eight or nine years ago. I was taking my son to school. My husband was working at an elementary school and I was taking my son to pre-school. Almost every day, we'd meet on the way -- we had the same way to go. [Laughs.]
Then one day he said, "Hi, hello." We'd just say "hello" to each other. My son would always see him, and we were on opposite sides of the street one day. My son said, "Let's go, let's go!" I don't want to talk to anybody, but my son says, "Hello!" He screams to the other side so my husband would see him! [Laughs.]
It was about to be May or something -- May or June -- and my husband said, "My semester's about to end. I won't be here anymore." My son goes to a year-round school, but his was about to end, so he approached me and said, " We're won't see each other." We started talking. He asked me for my name and my phone number, maybe to call me sometime.
I wasn't sure about it, so I gave him another name. I wrote down my phone number, but in really bad handwriting, so maybe he wouldn't understand it. He was basically just a person I met on the street, so I wasn't sure.
He called me and I wasn't too good at English at that time, still. I just understood a little bit. I wasn't speaking at all -- just a few words, basic stuff, but not to have a big conversation with somebody. Sometimes he'd call me and say all this stuff in English, and I didn't want to speak too much because I didn't want to expose myself. So he explained in different ways for me to understand.
He became friends with my children. He was able to speak with them because they were in school and they spoke English fine. He became friends with them, and with me. That's the way we met.
It took me a while to tell him I was HIV positive. He started asking me if we could have a relationship. I'd say, "No, I'm not looking for a relationship because I'm just focused on raising my children." He said, "I can help you." I said, "No, I can do it myself." [Laughs.] I didn't want to disclose to him.
So then one day he said to me, "Why are you acting like that?" I explained, "No, I'm not ready. I'm not looking for a relationship. I don't want to have a relationship. I have my children. I need to look after them. I can't have any more children. You're single. You might want to have other children. And that's it." He said, "If you can't have any more, we have two already." I still said no.
Then I started explaining to him, "I have a problem. I have a partner who died. I'm not over it." And then one day I just told him, because he kept calling and my children were getting too close to him, playing with him and asking for him. When he didn't come, when he was busy or didn't call, the children were asking for him. I told him what I have, but I didn't tell him just to stay with me or anything. I thought it would make him leave. Stop the game. So I disclosed to him.
He said, "Why didn't you tell me before? Why didn't you tell me?"
"Because it's something I don't just go and tell anybody, you know?"
"Yeah, but we've known each other for a while."
I said, "Sometimes we can live a life with a person and we never know exactly how this person is going to react to something, so it's better not to expose myself."
He became really supportive of me and said, "This is in the world we have. We have to take care of ourselves, even if we know the person has HIV or we don't know have it. It's part of the world that we have to take care of ourselves." Then we tried to have a relationship together. I was still kind of wanting it, kind of not wanting it. It was still scary, wondering "How can this person accept me with this? He's HIV negative!"
It took a while, but we've been together seven years, living together. It's been great, and he's been supportive of me and my children. He has a really great relationship with my kids. They don't have another father. When they talk to him, they call him by his name; but when they're talking about him with anybody, they always say, "My dad." That's what he's been for them. He never says, "My stepchildren." He always says, "My children." Even now that we're having one child together, he never says it's his first child. He never says that.
He helped tremendously with my children. He's focused on them having a good education. He takes time with them. He has the patience to spend an hour, two hours talking to them, and they listen to him.
I feel so blessed. I think I have a perfect life. Great kids. Great partner. I don't think I can ask for anything else.
A question regarding your partner: When you were trying to get pregnant, did you or he have any worries that he would become HIV positive? Did you take any kind of precautions?
We took some precautions. Also, the doctor explained to us that my husband would probably be safe, because I've always been undetectable and my T cells have always been really high, above 800. He's never like, [in a panicky voice] "I might get HIV!" We took care as necessary. But he's not really scared or anything like that.
The doctor said we could use a syringe, and also, we could do it naturally. It depended on me and him. Or more him, you know. The doctor said, "It's safe if you do it normal. So just take it easy. Take care and do it normal."
It sounds like you have a very good relationship with your doctor, because you were able to talk about wanting to have a baby and lots of other things. How did you find your doctor?
I had my same doctor for many years, nine years. I had to switch doctors because when I was doing my paperwork for my green card, it requires you have full coverage insurance. I had to switch to a doctor who took the full insurance that was required. So I went to a hospital and talked to a social worker and said, "I'm looking for a doctor who's a specialist in HIV." She said, "Oh, we have these." I chose a woman on the Web site. When I called, they said, "She's really good, but she's really busy. We have this one and he's a really, really good doctor. Why don't you think about him?" I told them, "You say he's really good? Let's give it a try."
It's been great. I was really scared because I don't like switching doctors. I was with the same one for a while. I met him the first time and he really took the time to talk to me and listen to me and ask questions. It became fine and I like him. I'm happy with him.
It's not easy. I never wanted to switch doctors. When I get one I like, I'll try to keep them. The couple of doctors I had through all the years have been great doctors. They always keep me in good health, so that's great.
How long have you been with this new doctor?
About two years, I believe.
How do you keep healthy besides taking medications? Do you exercise? Do you eat certain things or take vitamins?
Sometimes I take vitamins. Vitamins always help. I just keep a normal life. I'm an active person, so I do exercise. I don't go to the gym, but I walk. I try not to do too much in cars, so I walk a lot. I don't think about it and when it's time to take my medicine, I just throw it in my mouth, drink water and that's it. I don't think what it's for. I just take it and don't think about it as medicine. I don't think about what I have. I just keep healthy and keep working.
I think it's part of being OK with yourself and being happy. Trying to be positive is what it's about.
I'm not thinking about, "Oh I'm sick." I say, "I'm not sick. I'm as normal as anybody."
Where do you live now, and what's the community like around where you live?
I live in Oakland, California. It's a lot of difference kinds of people. Where I live is around a lot of Latino people, Chinese people, black people. It's mixed. It's great to meet every type of person. And I work around people of many different nationalities. You learn a lot. The community where I live has everything -- it has bad and good things, but I always look at the good things.
Can you talk a little bit about your work in Latino communities, and what you think are some of the most important issues that you face in your work that need to be fixed in the Latino community in the U.S.?
We need to teach the women about HIV and how to look after themselves. With Latina women, it's not easy. Sometimes they have legal problems, immigration problems, domestic violence. We need to work around these issues and work with them on how to take care of themselves. Many of them don't speak English. It's hard to find a doctor who speaks their language. That makes it a little bit hard for them -- the language, the culture and all that. I have to work around that. But it's great. I talk to them and show I came out from there and they can be fine and they can be themselves and they can be independent.
To me, it's a great opportunity I have to work with Latinas and help them. One time somebody helped me, and I took it really, really seriously. I take my job really seriously, to help depending on the needs of each person.
How do you think HIV has changed you personally?
I think it makes you more conscious. If I didn't become HIV positive, I think I'd be like anybody else on the street, never learning about HIV, never being aware of it. I never knew anything about it before.
I have a really young client who was just diagnosed about six months ago. She says to me the other day, "You know, now that I'm positive, I see everything. I saw these flyers on the buses and the advertisements on the TV that say, 'Take care of yourself.' I never saw those before. They were always there and I never noticed them."
I think that would've happened to me as well. I'd probably have prejudices like somebody else, because I never would have known what is. I'd probably never have been informed about it. I'm living it right now and I know everything about it. I know what it is. I know how it affects you, how you get it. And before, I never knew this. Nobody told me anything about it. So if I'd never become positive, I'd probably be just ignorant about HIV as anybody else in the street.
Do you have anything else that you want those reading your story to know?
I just want to say, if you are positive, live a positive life and live a good life. If you are negative, please take care of yourself and educate yourself and don't become positive.
Thank you so much. With that we can wrap up this interview, but it's wonderful to speak with you again. Best of luck with everything, and your new baby and your work!
This transcript has been edited for clarity.
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