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This article is part one 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.
Losing a Partner to Advanced HIV
This is Erika Nelson, reporting for TheBody.com. Welcome to This Positive Life. I'm here today with 35-year-old Esmeralda, who lives in Berkeley, Calif., with her husband and two HIV-negative children. Esmeralda has been living with HIV for several years. She works full time as a housekeeper and studies English in school. Esmeralda, welcome to This Positive Life.
Home: Oakland, Calif.
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.
Can you tell our readers and listeners about your personal history with HIV? How did you find out you were positive?
I want to start my story with my husband. We loved each other and we decided to be together. I decided to be with this person for the rest of my life. Everything was going fine. After I had my first baby, my husband started getting sick. He was feeling a little bit sick, not really sick. When he ran or exercised, he couldn't get enough air to breathe. Later he started having diarrhea, and those kinds of things. At that time, I was living in Mexico.
He went to the doctor and they checked him, did some tests. He took the HIV test, and it came back negative. They told him that he had an infection in his lungs. He started taking some medicine for that, and we thought it would be OK.
But the medicine didn't work -- he didn't get much better at all. In fact, he started getting more sick. He wasn't able to run or anything like that, because it was hard for him to breathe.
He and his brother, one day, decided to go to a different doctor. He went to a big city, to another hospital, to find more opinions of what was going on with him. He left one day, Thursday, in the morning. He took a change of clothes, because they said, "Maybe we will stay till tomorrow, or maybe we will come back today. Depends." They went to the hospital, where they gave him the tests. They told his brother, "Actually, he's really sick. He has to stay in the hospital."
He stayed in the hospital, and they tested him for everything, to find what was going on. They found out he had AIDS -- really, really advanced AIDS. They said, "There's nothing to do, because it's really advanced and we don't have medicine at all for this. It's really advanced in his brain."
They told his brother, but they didn't tell him. His brother told them, "Don't tell him right now. Do whatever you can to keep him alive."
They bought two kinds of medicine, pills. They are really, really, really expensive in Mexico. They started with those two pills, but they said there was no chance. They didn't tell him the diagnosis. They didn't want to make him worried or depressed.
In Mexico, at that time, if you had HIV/AIDS, you died.
They never told him the results, and he died. By Sunday, he was dead, in the morning.
I was unable to be in the hospital, because I was feeding my baby and she was really small, and they said, "You cannot come with the baby in the hospital." It was a little bit far, and they told me to stay away.
"They didn't tell me, either, what was going on. They told me, 'He's OK. Just pray a lot for everything to be OK with him.' Even the day he died, they didn't tell me he was dead and they're bringing him back in a box."
They didn't tell me, either, what was going on. They told me, "He's OK. Just pray a lot for everything to be OK with him." Even the day he died, they didn't tell me he was dead and they're bringing him back in a box.
Everybody started getting ready, getting together. I was asking, "What's going on?" Nobody told me anything. Instead they said, "Oh, just be strong, because he's coming back. We're bringing him back now. But just pray because only God can do something." They didn't tell me he was dead already.
I was so scared. I was in really, really bad condition at that time. To see everybody getting together, everybody coming from over here, from America -- because most of his family, his sisters, are over here -- I knew there was something else.
I didn't find out till he arrived a dead body.
How did you react when they brought him back?
I was really, really crazy. I was so ... "What did you guys do?" Because he got up, walked out of his house, with his bag, telling me, "Maybe I'll see you in the evening." And they brought him back dead.
He was sick, but he never stopped working or anything like that. He didn't look like he was dying. He kept doing what he needed to do. He was sick, but he didn't stop.
I was saying to his brother, "You took him to make him better, and look. You killed him!"
I was really upset, like, out of my mind. Why did this happen? How did this happen? It's really hard to express, because it's really, really intense.
How long do you think he had had HIV before he finally went to the hospital?
I think he had it for a long time, because he had been over here for five years, in America. Then he went back [to Mexico] and that's when we got together.
Do you have any idea how he got HIV? Do you think he got it while he was in the United States?
Yeah, I think so, because the doctors said he'd had it for more than five or 10 years. The virus doesn't go through so quick. They said he'd had it for a long time.
"I didn't have the chance to ask him, 'Do you think somebody gave it to you? Do you have any idea how you got it?'"
I didn't have the chance to ask him, "Do you think somebody gave it to you? Do you have any idea how you got it?" I didn't have that chance or the opportunity to ask questions.
Later on, after we buried him, they started talking about taking me to the doctor. I had no idea why. Maybe because I was really stressed out. They'd give me pills to make me calm in those days. They didn't tell me what was going on. They said, "We have to take you to the doctor, check you, and maybe the baby." They told me, "Stop feeding the baby breast milk."
It was really, really sad for me, because my baby didn't eat. She'd cry and cry, but she didn't want to take the bottle, because she wasn't used to it. Sometimes I'd see her crying and crying and spitting out the milk. She was hungry, because I didn't breast-feed her for a long time. Sometimes I did feed her. They told me, "Don't feed her your breast milk, because the way you are, you might affect the baby -- because you are really emotional, you might pass it to her."
Nobody told you your husband had HIV, or that you might have it? Or that you might pass it to your baby? They were just giving you vague instructions?
Yes. They told me, but three or four days later. They told me he died from AIDS.
HIV Tests in Mexico and the U.S.
Once you found out that he was positive, and that you might have it, did you then go to the hospital and get tested?
Yes. They took me to the hospital to get some tests in Mexico. In Mexico there's nothing, no education about HIV. I didn't know anything about it. Like, AIDS: You just die. Your diagnosis means you're dead.
I was thinking I was going to die. People have a lot of fear about HIV, or AIDS. Actually, I'd only heard of "AIDS." I'd never heard the name "HIV" before. I'd heard about AIDS, but people don't talk about it too much.
They took blood tests at the hospital and told me, "You have to come back in two weeks." I went back to the city in two weeks, but they didn't give me any receipt, or anything, to go pick up my results. When I went to the hospital, they said, "You cannot come inside the hospital with a baby, because it's dangerous. You have to go somewhere else." They told me, "You don't want to come inside right now, because we just took out a dead body of someone who died from AIDS."
Oh, my God. If those people knew I had come to pick up my results from an AIDS test, they'd want to kill me.
I started walking around the hospital and I found another entrance, and I went inside to try and get the results. But I didn't tell them why I was there. I just said, "I've come to pick up some results." They asked me what it was for: "For diabetes? What is it?"
I didn't tell them, because I was scared to tell anybody. I said, "I don't know. They took some blood and I don't know what it's for. I'm just coming to pick up my results." I didn't pick up any results, and I went back home.
How did you finally find out that you were positive? How long did it take?
I went home and I was alone. I didn't have my family on my side, because I hadn't gotten married. My family is Catholic and I didn't want to get married by religion because my family told me that when you get married in the Catholic Church, it's forever.
I wanted that, but I saw my mom struggle a lot with my dad. It was hard. I said to myself: I don't want to get married till I know the person. I don't want to get married for the religion till I know the person is the one who's going to be good for my whole life. If he's not, I don't want to keep trying to have this person in my life, or get married and stay with this person. If he's not good to me, I don't want to be with this person forever.
For that reason, my entire family stopped speaking to me. They didn't want to know anything about me. They said, "You just get out of the house. You aren't our daughter anymore, because you didn't get married."
"I was thinking I was going to die. People have a lot of fear about HIV, or AIDS. Actually, I'd only heard of 'AIDS.' I'd never heard the name 'HIV' before. I'd heard about AIDS, but people don't talk about it too much."
Did you have a ceremony; it just wasn't Catholic? Or did you not get married at all?
I didn't get married at all. We were going to get married legally, but not in the Church.
Four days after my husband died -- I had been living in the house with him, and all his family was there, they told me I had to move out. My husband was dead, I found out it's possible I have AIDS, and also I have to get out of the house. They told me I had to find another place to stay.
Why did they ask you to leave?
They said in this nice way, "It's going to be really hard to live over here now, by yourself." I had to leave the house, and I had to find a place to stay, with my daughter.
One of my husband's sisters told me to come to America. I didn't want to come, because I wanted to die over there in my country. I wanted to be buried with my husband. She said, "You're alone over there, and we can't help you. Why don't you just come over here so we can help you with the baby?"
One of his brothers said, "I go all the time over there. If you don't want to stay anymore, any time you want to come back, you come with me."
I decided to come. It didn't matter where I lived.
As soon as I came over here, I went to take the test.
The test result came in two weeks, and the test was negative. That was in October.
They said: There's a really big chance you have it; we're going to give you another test soon. They gave me another test at the end of December. They gave me my results on Jan. 2, 1998.
At that point, how long had you had HIV, do you think? What year did you and your husband get together?
We'd been together for two years. I don't know when I got it. In those two years I think it happened.
You said that when your husband got tested earlier, when he first started feeling sick, his test was negative. What do you think that was all about?
I think the equipment wasn't working well. Because it was a small city and the technology over there was no good. I think that was what happened.
You think that he had HIV before you guys even met?
Yes, I think so.
When you tested positive in early 1998, what did you do then?
"The first time I came up negative, I could breathe a little bit. When they told me I was positive, I stopped again -- like, living, you know."
The first time I came up negative, I could breathe a little bit. When they told me I was positive, I stopped again -- like, living, you know.
What do you mean? What did you do?
I was just waiting to be dead. I was struggling still, because of my baby. I thought: This baby's going to have it. If I have it, the baby's going to have it.
I was really, really scared for my baby. I was just worried for her. I didn't think about me or anything. I just worried for her, because why did she need to be living with this?
Did you go get your daughter tested at that time?
Yes. They tested her after they found out I was positive, and she came out negative. They said there's a big chance that she doesn't have it, but we want to keep doing the tests.
I was feeling a little bit better for her. But also, I was really, really scared. Because I was thinking, I'm going to die.
Another thing: I found out I was pregnant in that time. In October, when they first gave me my HIV test results, it was negative. Later on, I started feeling like, I have these changes in my body, and I don't know why. My breasts are growing. After I stopped feeding the baby, everything went down. And then my body started coming up again.
They gave me a test for that -- in November, I think -- and they told me, "You're pregnant."
Who was the father of this baby?
My husband, the same person. I got pregnant before he died. In November, I was four months pregnant. I had no idea I was pregnant.
A couple of months later you figured out that you were HIV positive. Then what? Did you start taking medications?
They said, "Your HIV viral load is not high, and your T cells are really high. You're OK, but we have to start giving you medicine to prevent HIV in the baby."
"I started taking the medicine. That's when my fight started -- fighting to be OK. I _needed_ to be OK, I _have_ to be OK, for these kids. Because I'm not leaving these kids alone."
Were you worried about passing HIV on to your second child?
Yes, I was worried. But I was a little more confident that he'd be OK. But I was really worried about my first baby, because I didn't have any treatment and I was breast-feeding the baby for a long time.
Ultimately, both your children are negative, right?
Yes. They both are negative. They told me, "There's a new medicine now. You can drink it, and you can be OK. You can live for five years." I said, "I want to start taking it, because these babies are negative. The longer I can stay with them, looking after them -- it would be helpful for them."
Did you start taking meds after you had the second child?
Yes. I started taking the medicine. That's when my fight started -- fighting to be OK. I needed to be OK, I have to be OK, for these kids. Because I'm not leaving these kids alone.
If I started thinking about dying and leaving those kids -- I'd get really, really sad. I didn't have anybody who could look after them. I couldn't say, OK, I can die in peace, because my kids will be OK with this family. I didn't have that.
Finding Support -- and Finally Processing
What kind of support did you have through this whole time? Did you talk to anybody about being positive? Did you go to a support group, anything like that?
It took me such a long time to do it! I was really scared. I was hiding all the time. I didn't even want people to see me much, because maybe they'd find out. I was really, really hiding for quite a time.
I got a social worker who started talking to me and a nurse from the county who sometimes came to my house and talked to me. Those people started helping me.
They started inviting me to see other people. I thought, I don't want it. I was really, really scared.
My social worker said, "You know, I'm having a party today." It was close to Christmastime, or something like that. She told me, "It's more friends who have what you have, and they want to understand you, and they don't want to judge you. They want to support you. You'll be OK, because it's not somebody else who doesn't understand."
I decided to go to the party that day. I didn't have any ride, and I didn't know how to use public transportation. But I knew where it was, and I told my social worker I'd try to get there. She gave me some tickets to get on a bus to go there. I didn't know how to get the bus, where to get it. What I did was I started walking.
I walked for two hours. I got to a bus station and I called my social worker. I said, "I tried to come, but I don't know how to get the bus. I was walking, but I didn't find the place." I told her where I was and they came to pick me up. I was really close already.
This group of people, they told me, "Oh, I have HIV. I've had it for this much time." They told me how they were doing. I saw really good people who didn't look sick -- who looked OK. I saw another woman who had two children, and she was doing OK.
I started talking to them. They all gave me their phone numbers to talk to them if I needed anything.
They became good friends. Sometimes I talk to them and say, "I don't know what to do. I have this appointment and I don't know how to do it." Some of them came and gave me a ride, and helped me to get to my appointments. Sometimes we just talked.
I started thinking to myself, "I have to be OK. I need to be OK for these kids."
I was struggling, because the family I was living with, the sister of my husband, she would tell me, "Be careful. The dishes you use, don't leave them everywhere." You know, like that.
I told my social worker about the situation over there. And she helped me. She said, "You want to get out of there?"
I said, "Yeah, because sometimes I have to go out. When I come back, the door has closed. I need to wait till 9, or late, to get inside, because I don't have the key to go inside the house, or to go to the garage. I need to wait." It was a hard time.
She said, "There's a place, it's a shelter, and they have a place right now." She asked me if I wanted to go there.
I went to the shelter. It's more for women, if they have been abused. But they accepted me, because I have children and I had nowhere to stay.
I stayed in the shelter for four months. After that, I found a room that I didn't have to share with anybody. Because in the shelter we had to share with another person. It was a really tough time. It was hard to share a room with another person who you don't know, who has a problem that's different than what I have. It was tough.
"I started getting more angry. And I started learning more. I started learning how HIV can pass to another person."
ut it's when I started getting more angry. And I started learning more. I started learning how HIV can pass to another person.
I saw people treating me good -- like, "You won't pass HIV to me that easy."
When I got out of the shelter, I moved to this room. It was in Oakland.
That's when I found WORLD [Women Organized to Respond to Life-Threatening Diseases]. They helped me a lot, too. I have a peer advocate over there who talks to me, who brought me here, to find more services, and things like that.
How long do you think it took you to process the diagnosis?
More than a year, because I didn't have any support. The place where I was living, they didn't let me process, I think, because they didn't accept too much, and I had to be careful.
I had to think all the time about what I have, and I was scared. After I got out of there and I started learning -- I think that's when I started to process, and started to try to live a normal life. Two years, I believe.
Work and Family Life
What job are you doing?
I clean houses.
You do that full time?
Yeah. And I go to school, too. I go in the evenings.
You're studying English in school, right?
I go on Saturdays, too, to school.
I go twice a week and once on Saturday. My kids are taking a Japanese class on Saturdays, too. They go to class and I go to class.
Do the people that you clean house for know that you're HIV positive?
I just work for them; and also, those people, I almost never see them. I just come clean the house and get out of the house. I have a key. Go inside, clean the house, and get out of the house.
Have you ever experienced any kind of stigma or discrimination at all because you're HIV positive?
I was taken out of the house I was living in with my husband because of that. There was no other reason.
In Mexico, I didn't tell anyone -- I kept it quiet -- but some close people, I think they knew. And they kept their distance.
I remember in Mexico, one neighbor offered me some food, and as I was going to get the plate, she pulled back the plate and she, with her hand, put the pieces of food on my hand. She didn't let me touch the plate.
You talked about not being close with your own family. What about the family of your husband who passed? Are you still not close to them? Do they know your HIV status?
They all know. All his sisters, brothers, they know he died from AIDS, and they know I have it.
Do you ever talk to them?
Once in a while I talk to them. I had been in touch with the mother of my husband. She was nice to me. She loved the kids. She passed away two years ago. I always tell his family where I am, where the kids are, so they can get to know them. I want my kids to know where they came from.
"It's better to find out than not. Because if you find out, you can take care of yourself."
They almost never call them, and they never visit them. What can I do? I always tell them: "You know, the kids are over here. Whenever you want to talk to them, whenever you want to call them, they are here." But if they don't want it, I don't want to force anybody. In July I took the kids to see their grandpa, because he was really sick. And that's the last time we saw them. It's their family. But they don't really call the kids or visit us, at all.
Speaking Out, Helping Others
What do you think has given you the strength to speak out about your HIV?
To prevent and to help. Because I was so closed. I didn't know anything about it. I was really scared when it happened.
To prevent people from getting HIV and encourage people to find out if they have it -- to take the test to find out. It's better to find out than not. Because if you find out, you can take care of yourself.
"Start living a new life. Make it a better life. This can make you think about what kind of life you've been living, and what kind of life you want to have."
Many people I know came to the hospital, really, really sick with AIDS -- really, really advanced -- because they didn't know. They came to the hospital, to the emergency room, and that's when they found out. They had to live, sometimes for months, in the hospital to recover.
What advice would you give somebody who just found out that they were positive?
To just take it and don't stop. Start living a new life. Make it a better life. This can make you think about what kind of life you've been living, and what kind of life you want to have. How you want to live. Because this thing makes you think. And maybe put your feet on the ground.
Esmeralda, thank you so much. It's been a pleasure.
This transcript has been edited for clarity.
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