March 1, 2011
When Wanda was diagnosed with HIV in 1995, she was completely shocked; she thought she had always practiced safer sex. Like many people who are newly diagnosed, fear began to take over. But instead of letting that fear consume her, she educated herself about HIV and eventually became an activist lobbying in Albany, N.Y., on behalf of people living with HIV/AIDS. This mother of one talks about the loneliness of being positive and working in corporate America, the importance of securing housing for people living with HIV/AIDS, and why the AIDS community can never give up hope.
Welcome to This Positive Life. I am here today with Wanda Hernandez. Wanda, Welcome to This Positive Life.
Thank you Kellee and welcome to my home.
It's so lovely and thank you for having me. Let's start by describing how you found out that you were HIV-positive.
I was diagnosed in 1995. I became ill because I am asthmatic and I had a high fever that just would not go away. This happened six months from having had sexual contact with someone who either didn't know or didn't care about his quality of life. I found out after being hospitalized and having every test in the book, that I was positive.
How old were you then?
I was 35.
What had you known about HIV before you were diagnosed?
Before I was diagnosed, I knew about protection and people being able to lead a normal life. About the medications that were out and basically, I was somewhat about HIV educated before I found out that I was positive.
When you heard the words, "Wanda you are positive," what did you think?
Like every other person who is newly diagnosed, I was devastated, like, "Wow, my life is over." But my life isn't over. I found that out, through my education. I decided to fight back, get educated and find out all the things that I need to know in order to survive. Because you could lead a normal life -- I have learned for the past 16 years. I tell people: Don't give up, because there is life after HIV.
So let's go back to that day that you tested positive. You said you were devastated. Walk me through those moments. Were you like, "When should I start treatment?" Or were you like, "Oh my God, I have to get out of here."
I felt more like the "Oh my God, this cannot be happening to me." I mean, I was such a cautious person. But you always think that "This is not going to happen to me." But, it wasn't about the diagnosis; it was more the way it was presented to me when it was given to me. I found it to be a little bit harder because of how it was presented to me.
Actually, I got my diagnosis at a facility that is supposed to be Catholic oriented and the one person whose job it was to give my diagnosis, I didn't feel was too professional about it.
You didn't think he was compassionate at all?
No, not the way he presented it.
So, after that incident, where did you go to get care?
Well, I didn't go there, but I did go and get a second opinion. It's always important to get a second opinion because mistakes do occur. So I went to, unfortunately Southview Clinic where Senator Espada -- of course that is his clinic. But there as well, yes I found out that the diagnosis was correct, I was put on medication right away. Unfortunately, I didn't know at the time that you could hold off on the medication -- it's a choice you take -- but being that I was new at it and did not know what to do and was depending on my doctor and her advice, I started on the meds right away.
I've been, today until 2011, I have always been at a level considered 100 percent healthy, my CD4 count has always been over 1000 and I have always been undetectable.
So has that been the first HIV test you had ever had?
When I was first diagnosed, yes. When I got the second test, of course that was the second time. Same year of course, but that had been the only one. I didn't feel that I was at risk, which I guess was a big mistake because even of course in our sexual orientation, or what you do, you always use your protection, but things can occur no matter what.
Did you didn't think you were at risk?
Not that I didn't think that I wasn't at-risk , more like I didn't think it was going to happen to me because I was extra careful.
So how do you think you knew how you became positive?
I know exactly how I became positive -- it was sexually transmitted. There was protection, it was actually someone I trusted and gave the chance to have something to do with. And I feel that the mistake when the person might have taken the condom, or took it the next level by deciding that he was going to remove the condom and not put it back and not let me know. And things happen in less than a second and that's how it goes.
And so, you did ever confront him after you were diagnosed?
No, I didn't confront the person because I felt that the person didn't really care about his quality of life. He should have known better than to remove the protection. And I didn't trust this person with my information, and I was a brand new case, I didn't know what to expect.
I did actually run into this person, unfortunately, twice, and I was like, "Wow, this world is so big and I just run into this person." But when I did run into that person, that person wanted to pursue a relationship, not knowing of my diagnoses or my status. But I was really so disgusted, so no I never approached him or told him what the deal was.
And why do you think it was him?
I know what I do and who I was with. And it was six months after the fact of me being with him.
And you never told him?
I never told him. I just needed to learn more for myself about what it was. I didn't think he was a person to talk to at the time. And I just felt so uncomfortable and disgusted by him, that I didn't even want to look at the person.
And so how did you even deal with disclosing to your family?
Disclosing to my family took me a little while. Of course it was something new. The very first person I told was my sister, who I thought because she is professional, was going to be a certain way. She was in a field; she works with low income people and people in the community, so she knows about these diseases and things that are going on. But it was shocking that my sister actually understood and that it came out of her own mouth to say that people living with HIV/AIDS can lead a normal life. She was the first person, the rest of my family it took me a while to be able to say it to them. And not because I was embarrassed, but because a lot of people are not educated on the subject and refused to get educated on the subject because they felt that it wasn't going to touch home.
It took me two years to tell my mom. And the reason being was because before being diagnosed, I just had lost a brother to asthma, so my mom was kind of still grieving for my older brother, so it took me awhile to tell her. But finally I did and she took it very well. I didn't make it sound like, of course like I said there is life after HIV/AIDS, it's up to the person to continue to fight to live and come out ahead.
You cannot let that take you down. So once I told my mom, I also waited to tell my daughter because when I was diagnosed in 1995, my daughter was only 15. So I told her once she turned 18, which I thought was a better age for her to have a better understanding of the subject. She was very understanding of it as well; of course she doesn't like it when I get arrested for doing actions...
I am sure I wouldn't like my mom getting arrested either.
For a good cause and she is very proud of what I do. I just love what I do with a passion, just because I think we need to step up and fight for more justice in these communities.
Do you think that in communities of color, there is a lot more stigma around HIV/AIDS or an inability to want to talk about it?
I think that stigma has a lot to do with low-income communities and communities of color. Being able to express how you feel, just say listen this is what's up. Society plays a very big role on that. Unfortunately, because of that there should be more leaders and people speaking about the subject. And I think that we would have a better chance at leading the fight.
Where is your family from?
I am one hundred percent black Puerto Rican. I was born and raised in Puerto Rico. I have Tahino heritage. I was actually the type of person who went back and forth from my country and New York. I was educated in both countries. My first few years, Kindergarten, first, second grade in Puerto Rico, to come back to New York for third and fourth grade, high school over there and finally finished college over here.
I love to read, write, and write poetry around societal issues. My passion right now is, besides leading the fight against AIDS, is also someday to write my own personal book, which I am working on right now.
Oh an autobiography! That would be great. There are not that many Latinas writing about HIV from a first-person perspective. I think I know of one.
Yeah, there are not too many. It's my dream.
Well good luck!
So let's talk about disclosure. You disclosed to your mother and she was supportive. Same with your sister. What has it been like to disclose to other people outside of your family?
Sometimes, I just like to sit back and just listen. Sometimes I just can be on a bus or a train and just hear people talking about the subject. I find that is my chance to educate people. Being an open-HIV positive activist in New York City, I take it upon myself to try to challenge that person, find out what they know about the subject, and try to educate them. See if they are willing to be educated, because not everyone is interested in the subject, not until it hits home. But I love educating people and I think that we need more people who are outspoken to speak about the issue.
What are some of the biggest myths that you come across when people talk about HIV? Like "Oh someone spits on me, I might have HIV..."
It's interesting that you asked that. I am going to give a small scenario. One day up in Albany, we had a crew of people lobbying. And this one young kid in the crowd asked one of my colleagues for a cigarette. My colleague says, "I don't have another cigarette." He asks, "Can I have some of the one that you are smoking?" And my friend says, "Sure." After the kid takes two puffs of the cigarette, he decides to tell the guy, "It's not like you have AIDS or anything like that right?" And my friend says to him, "Actually I do have AIDS."
So the kid kind of...puts the cigarette out and it gave us a chance to educate him. And he was willing to listen, which was powerful for us because he was willing to listen. We told him that you don't get it from this, and "How much do you know?" and he told us that he wanted to stay in contact with us to learn more.
How frustrating it is for you that we are 30 years into the epidemic and people don't know things as simple as transmission?
It's very devastating because in this day and age, women can actually give birth and not transmit the virus to the child. People need to know the difference between HIV and AIDS, which is very important. I like to describe it to a lot of people as another type of cancer. Although it's transmittable, but you are looking for a partner and you have to get an understanding of what it is. You have to share with your partner and give that person a choice. Which is the way I am, but of course everyone's character is different. But my personal character, I put things out on the table. That is part of my personality in order to feel comfortable with living with virus.
So you are saying that when you date, that you let people know from the beginning that you are positive?
And not like from the first meeting you are like, "Hi I'm Wanda, and I'm positive." But how do you get to a point where you disclose...
It depends on the attraction first of all for me. And I feel that if that person, we are all adults, wants to take it to the next level. It's very important for me to put my cards on the table. It's a choice that you have to give someone. I know that you can go ahead and have sex with someone as long as you use protection, but for me, it's not how it works, unless I give that person a choice. Why? Because protection is never 100 percent. For me, no I just don't meet someone and say, "Hi, I'm Wanda and I am HIV positive." Like I said before, it depends on what the situation is and what the conversation before. It's important for me to put it out there and it's important for more people to take that same route.
Then you will know how that person is really there for you, or not.
How has your dating life been since you tested positive?
It's been like 16 years?
It's been 16 years. I've had my chance at dating. I've had my fair share. I did have this one individual who was actually negative who was always there for me one way or another, but not in the way I wanted it to be. Because he was more secluded about the situation, meaning that in the beginning it was a normal relationship, like dating and coming to pick me up and take me there, go out.
But I think that after a while a person grows out of a relationship -- whether you are an HIV-positive person or not -- it can be just a regular relationship, it happens. But even that this person and I dated for the first three years on a steady basis, after a while he wanted to date other people. You know the game thing, I took it OK, but he still decided to come by and come and hang out.
And so I could say that I was with this person for 15 years. I actually was the one to cut it off; I was tired of the routine of, you know, wanting to have his cake and eat it too.
Dating and having sexual partners, I don't really have a problem with. It's just more, I guess, keeping someone who is worth keeping and being really understanding of your daily life and things to that extent.
Have you come across men who feel that because you are HIV positive that you should be grateful that anyone wants to be with you?
No. I have come across for the first time one who I thought understood and felt that he is a little afraid. But this is the first one in 16 years to react like that. Partner-wise it's just about being able to keep someone who is willing to be there.
So let's talk about your health care and achievements. You said earlier that your CD4s have been relatively high since you were diagnosed, which is great since you have been living with HIV 16 years. What kind of relationship do you have with your doctor?
I have a really awesome doctor. I have been with him almost as long as I have had the virus. I think that, like friends do, sometimes I don't agree with him. But he is the best at what he does. He is the best at treating patients with HIV/AIDS. I am not going to tell his name because I don't want to disclose too much. But, he is awesome. I mean, I have gotten to the point of fighting with him and then he feels so guilty that when he sees me again he gives me a hug. But my relationship with my doctor is really awesome.
In the early days, when you were first diagnosed, did you seek the help of support groups to help you deal with your diagnosis?
It's funny that you ask that. In the beginning I started doing a couple of groups and unfortunately I felt that because at the time I was still working in corporate America and that I was educated, that I felt that -- as you said to compare, it's like stereotyping -- I felt like I was in a totally different environment. I have never used, but not to discriminate, but I had never used hardcore drugs before, so I felt that I was in a totally different group, in a different time zone.
Are you on medication?
I am on medication now and just to give a quick cap of how well medication has advanced in 1995, I started with 18 pills a day. Today I am one pill a day -- which is Atripla. And that's all it takes is one pill a day and I am good to go.
Back in 1995, when you tested positive, it was right before antiretrovirals. How afraid were you that you were going to die?
I was a bit afraid. Coming from a family -- because my family support is not all that great, I hate to say -- I was afraid, "Wow, I'm dead." But I lifted my head up. I have always been a strong independent Latino woman and so, I decided to fight back. And I just ask those who are newly diagnosed and around now still, let us be an example that there is life after HIV/AIDS.
So you said that when you were diagnosed, that you worked in corporate America. And so when did you leave?
I was diagnosed in 1995 and continued to work until 2001.
And what was that like for you?
It was a little difficult for me to not be able to have someone in my corner.
It's OK. Take your time.
Just being able to have someone to talk to at the time within the work environment. I knew that there were people who would talk like, "She lost so much weight." But I guess that God knows who to pick for his tasks. I can only say that I am stronger today and more positive today because of God and he just needs an angel up there, but he isn't ready for me -- he is preparing for me. But it was hard to work in corporate America and not have anyone to talk to because of the discrimination. I have had people tell me that they have lost their jobs because they have disclosed their status. My neighbor right now used to work for the government until she disclosed and she lost her job.
Even though it's totally illegal to do that, it still happens. I think it's important for people to know that there are all of these laws in place, but that doesn't mean that those laws are being enforced. So you left your job in 2001. What have you been doing? I know that you told me earlier that you went back to school and got your degree.
Like I said before, I decided to fight back and get more educated on the subject and had the pleasure when I was at one of my management groups where I received pantry and legal services, one day I am there and there was this one guy talking about this wonderful organization and how they fight for public policy for people with HIV/AIDS. It's funny, because my friends all say that I have a big mouth and some day it would be good for something. So I got interested in what the guy was saying -- Jared, one of my lead organizers over at Vocal New York.
So I said, "Jared, I am going through the same things that you described. How can I get involved?" And that was it, we clicked. And now I am on the board of directors for Vocal New York, I have done a lot of public speaking and have met a lot of wonderful people. It's my passion. What I do today that keeps me going.
How awesome is it that you can lobby in Albany? What have been some of the reactions to things that you have said?
When I started going to Albany, I found it to be such a blast. But just to know that you get to rub elbows with these politicians who are on T.V. It's awesome. Especially when you have the chance to meet face-to-face with the governor and not for 15 minutes, but for an hour and a half. That was really interesting. And it makes you feel like a celebrity, because a lot of them will recognize you and a lot of them know what type of work you are doing and a lot of them are allies and supporters -- I love it.
And what are some of the big issues -- I know that you were in City Limits, which is a magazine, a newspaper in New York City. You were in it talking about housing. Can you talk about why housing is so important to people living with HIV and how your housing has impacted your life?
Housing is important for people living with HIV because they can't concentrate on their meds. They can't concentrate on going to the doctor. They are constantly worried about where they are going to lay their head at night. For me, I got involved in the fight with Vocal New York, because I am one of those people facing homelessness. After holding two jobs at a time, for years, and investing in a safety net that was supposed to protect people like myself, I feel let down by the government. Them choosing how much you get left with at the end of the day is not fair.
I like to describe this situation as the AHB. For those who don't know what AHB is, it's the "Affordable Housing Bill," that is fighting for the 30 percent housing rent cap, which is supposed to benefit 10,000 people such as myself from becoming homeless. HASA is the only government agency in the city that does not cap rent for us by 30 percent. If we were able to pass this bill, we would be able to save the city and state money; I would be able to hold down my apartment. I would be able to enjoy regular life, like go to a movie and dinner with a friend. Being able to purchase your toiletries and not worry if, juggling whether you should go to this appointment or that appointment because you cannot afford it. There are a lot of things that are associated with housing.
What would you say to the people who say, "Well you did this to yourself, why should I pay for you?" What do you have to say to those people who have such little compassion?
Don't point the finger because what goes around comes around. People should be more open-minded of the topic, but not just that topic, but any topic. Even when those who try to kick down people doing drugs -- that's a disease. It isn't always something that people chose to do. For whatever reason why people do them, but it is a disease. Same with alcoholism. It's not like we choose to live the way that we do. It's just part of life.
Do you ever get sick of talking about or thinking about HIV?
Actually, no I don't. Today, I go out with my head up high. It's funny because the other day I was in Brooklyn, and some ladies actually recognized me from a testimony I gave out at a local collegeIt was overwhelming to me. It felt good to be recognized. So no, I don't feel like I should have my head down. I am doing it for a good cause -- it's important to me.
What has HIV taught you about yourself over the past 16 years?
It has taught me to be strong. It has taught me who your real friends are. It has taught me that it's not an overnight thing; you have to learn to live with it. And that you can have a normal life. Unfortunately those on the outside of the box don't know that because they are petrified, they don't know what to expect. But like I said to people, you may not have HIV, but you could step off the curb and get hit by a car. When it's your time, it's your time.
What advice would you give to people who just found out that they are positive?
My advice to someone who just found out that they are positive is don't give up on yourself. Your voice counts. If you have what it takes to be a leader, then go ahead. You are not alone; there are others out there who are willing to back you up. And I just say, when you speak out about the subject, it empowers you more. It gives you freedom. At least for me it does. I feel like I am one of God's disciples and that I am here to teach.
There is this huge misconception that once you test positive, you can't do anything in life. You can't go to school; you can't live your dreams. And you are someone who is just like, "Oh hell no." Talk to me about that. People remembering to live their dreams.
I think a lot of that negativity is surrounded by the stigma that started back in the '80s. But it also has to do with the individual, whether they're willing to strive and stay afloat. To not give up. I had a friend in 1995, when I was going to groups and he totally gave up. He found out that he was positive and he decided that he wanted to go to back to our country and he went, and within a month, he was gone.
I say to people fight because you don't die overnight -- it depends on the individual.
And with that, we are going to bring this interview to a close. Thank you so much Wanda.
This transcript has been lightly edited for clarity.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.