This is Bonnie Goldman reporting for TheBody.com. Welcome Evelyn, to This Positive Life.
Thank you very much. Hopefully, my experience can help many other women who are living with HIV in various communities.
Let's start from the beginning. How did you find out that you are HIV positive?
I found out back in 1993. I was recently married. My husband found out about 2 weeks after our wedding day.
What made him get tested?
Prior to our wedding day, he had not been feeling well for some time. Losing weight, feeling fatigued, he just did not have the energy he was accustomed to having. And I pretty much encouraged him to go and have a physical done, because the last time he had one he was a teenager. He worked in construction and worked out several times a week. Then he just started losing a lot of his muscle mass, and began to feel fatigued.
How old was he at the time?
He was 33 years old.
And how old were you?
I was 29.
This was in New York?
Yes, in upstate New York. I grew up in New York City, born and raised. I lived there the majority of my life. Then I moved to upstate New York and lived there for about 10 years. That's where my husband and I had met.
How long were you married when he started getting sick?
Two weeks after our wedding day.
Wow, so you were spun into a new world.
Absolutely. When you're planning a marriage with someone you love, you think you're beginning the rest of your life -- the second part of your life, I should say. I was looking forward to starting a family, being a wife and spending the rest of my life with someone who I cared for very, very deeply. Just as quickly as he was diagnosed, this curve ball was thrown at us.
At that time, what did you know about HIV?
All that I really knew was what was on the news and in the paper -- it was primarily a gay and an IV [intravenous] drug user disease. We just didn't seem to fit the perceived profile.
Did your husband know how he got infected?
He experimented with steroids at the gym. He worked out three or four times a week. He needed to be physically fit for his job in construction.
So he shared needles with other guys?
That's what we suspect. He used to get his steroids and syringes at the gym. So, where did that come from? We don't know.
As soon as you found out that he had HIV, were you worried about your own health?
Absolutely. Immediately, the doctor that had diagnosed my husband wanted me to come in and get tested. The ironic thing is that I was feeling fine. I was working a full-time job and had no symptoms at all. About two weeks after I was tested, I received a call from my husband. He had just returned from a doctor's appointment and wanted me to come home right away. I thought he received some really bad news at his doctor's appointment. But when I arrived home -- this was back in November of '93 -- that's when he told me that I had tested positive as well.
What was the first thing that you did?
I was in shock. I just couldn't believe it. I did not know what to do. I didn't know who to turn to. I just kept pacing our living room floor. We had barely been married for a month; this is not what you would expect to happen.
In 1993, the only medicines available were Retrovir [zidovudine, AZT] and Videx [didanosine, ddI], so it was a still a fatal time.
It was. It was thought to be pretty fatal and those were the images that we were seeing on the news. People were dying of AIDS -- lying in bed and withering away. We thought, "This can happen to us, or we can both fight it together."
I have a lot of faith and I'm a fighter by nature. So, because I had been feeling well, I thought, "Okay, let's just do what we need to do and embrace the fact that we are living with this illness, and that we are not going to die immediately."
Was your husband as brave as you?
Unfortunately, no. By nature, he was such an outgoing person and enjoyed life, but his whole demeanor just changed, literally overnight. He became very reclusive. He just, pretty much, would sit in his chair. I tried my very best to help get him out of that space, but it didn't work.
Who did you tell in your family about your diagnosis?
Well, interestingly enough, the first person I called was my father. My parents were both living in New York City, in the projects of the Lower East Side of Manhattan. I called my father at work. The reason I did that was because my mom had had open heart surgery, and I knew she was home alone. I did not want to give her the news knowing that she was alone. So I thought the stronger person at this point would be my dad.
And surprisingly, he became extremely emotional. He cried. I'm the youngest of four and as you can imagine, no parent would want this to happen to any one of their children, let alone their youngest, their baby. He had a really, really difficult time just dealing with it.
Did they blame your husband?
No, and that's one of the things that Greg and I said from the very beginning, that HIV already had control over our lives. We were not going to allow it to take any more control by getting us to bicker back and forth: "I got this from you," or "You gave me this." We did not want to go there, because we knew it was not a healthy place to go. We couldn't change the fact that we were both HIV positive. We just had to be strong and work together as a family, as newlyweds, and try to get through this as best as we could.
So, did your husband immediately go to the doctor and try to get treatment?
We both went in together and we saw a very good doctor in upstate New York who was pretty much on the cutting edge in treating people with HIV. And, my husband comes from a family of nurses, so they were a great resource for us. They had recommended a doctor who was recommended to them. We went and we sought treatment; we took AZT and Zerit [stavudine, d4T]. They were the only two medications available to us.
Did you immediately have side effects?
Well, interestingly enough, when I started taking AZT, my T cells increased from 45 to like 335 -- something to that effect. I thought, "Wow, this is just in a matter of a couple of months." I was shocked. But then my T cells immediately just dropped after that.
So your initial T-cell count was 45?
And what was your husband's?
His was 236 I believe.
But he had more symptoms?
Wow. So strange.
It is. At the time, being naive and not knowing as much about the disease as I do now, I thought that, because I had less T cells, I may have given my husband the illness. But since then, I learned that a lot of women, when they're infected, they lose T cells a lot quicker than men do. But I took the blame personally for a while.
What about your circle of friends? How many people did you tell?
I had a couple of really close friends that I talked to. I worked for the Speaker of the New York State Assembly, Sheldon Silver. I immediately spoke to my supervisor, and shared with him, and they all understood. The work that we did for the Assembly was passing legislation that provided services to individuals that were living with HIV and AIDS. I think that being in that role, in that position, and working for the Speaker at that time, was a blessing in disguise. They were all extremely understanding.
So you didn't suffer any discrimination?
Did you ever think that you would go public as you have?
I never thought that in a million years. I moved from New York to California -- I have two brothers in Los Angeles. My health was not well at the time, and I thought, well, I really wanted to experience as much life as possible.
We should back up. What happened that year that made you move?
Prior to my move, I came down with PCP [Pneumocystis pneumonia]. I was very, very ill. I managed to get through that. I was hospitalized for over a week. Then I was sent home and I had a nurse that would come over every day. I was hooked up to an IV. Both my parents drove out from New York City and they spent time with me, taking care of me.
Where was your husband at this point?
My husband passed away eight months after our wedding day.
What did Greg die from?
He died from encephalopathy.
He had a grand mal seizure at home. We had to rush him to the emergency room. We had to call the ambulance and they took him in. He really never quite got out of that. He was extremely disoriented. He couldn't do the work that he was used to, or accustomed to doing, which was his construction work. So, at the time, I was head of the household, living with AIDS at this point, going to work every day, and taking care of my husband when I would come home. If he was in the hospital -- because he was hospitalized at least three times -- I would rush there after work. And working for the Speaker, you work very long hours; it's a very stressful job. But my husband was in the critical care unit and in a comatose state, so I just needed to be there with him.
Were his parents involved?
Yes, everyone was involved. His parents were extremely supportive and his sisters and his brother. They were also extremely saddened and heartbroken.
So where were you when you were dealing with PCP and all alone?
After he died, almost a year to the day of his death, I was planning a gathering for his friends to commemorate Greg and celebrate his life. And as I was doing the planning, I wasn't feeling well. I was extremely fatigued. I was exhausted. I was short of breath. I kept coughing. I didn't know what was going on, but I kept pushing. Pushing myself to the point where I ended up in the hospital. He had died June 5 of 1994 and I came down with PCP June 3 of 1995.
Several years after that, I moved to California and decided to experience as much of life as I possibly could.
Had you changed medications by then?
Oh, I changed medications constantly. I was the type of patient that would exhaust all types of medications that were available. A trial would come out and I would participate in a lottery. I was accepted into a couple of lotteries that they had regarding some of the new meds that were coming out.
So you've always been proactive about your treatment?
I've always been. I think a lot of that has to do with my advocacy work, working for the Speaker, and growing up in the streets of New York City, in the Lower East Side. Living in the projects made you learn how to fight your way through certain situations. So, I think that's kind of in my blood, even today.
Tell me more about California.
My first stop was L.A., which to me was a bit stressful. I lived there for about two years. Then I decided to move out to the desert area -- the Palm Springs, Calif., area. That move really changed my life. I met someone who I had a lot in common with several years after my husband had passed away.
I had disclosed my illness to Steve. I figured there's one of two roads he can choose: Run and head for the hills, or be there by my side and support me. Steve chose to stick by my side. He's learned a lot about the illness. He's negative. He's been tested several times. Now we live together in beautiful Palm Springs, Calif. And he's been a huge support. I don't know how I would have made it without him. He's a genuinely special person. And I think that Greg, in his own special way, brought the two of us together.
How did you guys meet?
We met at Rosarito Beach in Mexico. I was living in L.A. at the time, and I went there with my brother and his friends. We went out to Rock and Roll Taco. I just wanted to have fun. I was dancing and then I couldn't find my brother; I'm like, "Where's my brother?"
And as I was looking around the dance floor, this very tall, handsome gentleman came up to me and asked me to dance. At first, I was going to say no, because I needed to just physically see where my brother was. But then I thought, he would never leave me, so we danced and then we danced some more. And we talked. And we exchanged phone numbers and it just so happened that he was staying at the same condominium complex where my brother and I were staying. So the next day, when I got up to walk the dog, I saw Steve taking his bike off the truck.
How long ago was that?
This was back in 1999.
So you've been together ever since. Wow.
Yeah. At first, we did the long distance thing. I worked for a nonprofit called Crystal Stairs; I was their public policy associate. So, on a weekly basis, I would travel a lot to Sacramento and Washington, D.C. It took a toll on me.
Steve would come out to Los Angeles and visit with me. I would drive down to Palm Springs. It just got to be too much. It got to the point where either we're going to be together, or we're going to end the relationship.
So, how has HIV changed you?
I have a unique and sincere appreciation for life. I used to take things for granted.
I remember driving on the New York State Thruway when I was still living in New York and working for the Speaker. The grass along the Thruway was so beautiful and the sun was shining down on it and it was just glistening. I think that's the first time I actually ever realized nature, and how beautiful nature is. It's about the little things. Also, I have an appreciation for people in general and the values that people bring to a friendship.
Unfortunately, it had to take a tragedy to happen in order for me to get to this point.
I think that I have a purpose in life and I managed to realize what that purpose is. Because of my deep faith, I wanted to help other women. Especially women here in Coachella Valley, which doesn't have the resources that larger metropolitan areas have. I did a lot of research. I became involved in my community, looking for resources. I saw that so many women were just being left behind.
You looked for HIV resources for women living with HIV in Palm Springs and you didn't find anything?
We have HIV doctors here, but there weren't any support groups or support services for women to deal with the issues of how women experience more side effects with medications and how women also experience different challenges when they're dealing with HIV and AIDS. They will put their family first, before they will take care of themselves. They will do for others before they will take care of themselves.
So you started an organization?
Yes, I started Working Wonders in 2000.
Steve, my boyfriend, was the one who planted the seed in my brain. I remember at first I thought, "What, are you crazy?! I wouldn't know the first thing to do. I never started a nonprofit before. This is not in my scope of expertise." But I did a lot of research and just seeing the lack of services for women, particularly here in Coachella Valley, it really empowered me to do more for women. It was unfair. I understand that more men are impacted by the illness, but just because the numbers of women aren't as high, that does not mean that they do not deserve a place of their own.
So you found it very gratifying to help women who didn't have the resources that you did. I mean, you clearly had a lot of support and resources. But so many women with HIV don't.
Exactly, exactly. We are the first AIDS service organization here in Coachella Valley for women. We provide services. It started actually at my kitchen table, and I ran it from there for the first two years.
It was amazing. We've been here for eight years now. We also specialize in services for at-risk youth, which is also an underserved population in our community. It's just been amazing, and so rewarding.
Every emotion you can imagine, I have felt through Working Wonders: fear, anxiety, excitement, happiness, sadness. Just every emotion possible, because you have those ups and downs. When you have a new agency moving into an area, of course, people perceive it as competition. But we're not here to be competitive. We're here to provide valuable services to a core set of individuals. These are marginalized people who otherwise don't feel comfortable anywhere else.
You've gotten some of these women to come out?
Oh, yes. We provide case management services. We have groups. We also send kids to camp Heartland. We have an extensive resources and referral network.
Does your organization serve a large Latino population?
Yes. There is a very large Hispanic community. I would say that the majority are Mexicans, Mexicans who work in the fields. We have migrant workers who travel throughout the state. We have a lot of undocumented individuals that we work with. We have a lot of monolingual Spanish-speaking individuals that we work with, and bilingual individuals, as well as individuals who speak English. And just understanding the different culture, because we have first-generation Mexicans who are here. Just respecting their culture. Also respecting the cultures of second, third, fourth generations. So, it's a constant balancing act.
Given your experiences in the Latino community, what needs to be done to address stigma?
More outreach needs to be done. We do go out into the fields and provide education programs. Not just about HIV/AIDS, but about basic health issues. Sometimes it's easier to come in through the back door than the front door. If people see HIV/AIDS, a lot of them just tend to pull back, "It's not me. That's not who I am." So we talk about basic issues, and then we tag HIV and AIDS to the issues, to the particular health issue that we're referring to.
Regarding the MSM [men who have sex with men] community, they have been in this fight for a very long time. They've managed to mobilize and organize a lot earlier. Because their community has been devastated. So, they have a lot of tools that they've created since the beginning of the epidemic. Now that we're seeing more heterosexual individuals, more Hispanics and African Americans, we are doing everything in our power to reach these communities and try to reduce the stigma, and the shame.
Why do you think that is? Do you think it's related to homophobia?
I think part of it has to do with homophobia. I think that some people have the perception that, if you have HIV, you did something wrong. And you deserved it, because you did something wrong. This is the perception. There are lots of families who have disowned their children. So these are a lot of the issues that we work with and deal with on a regular basis. This can happen to anyone though. This is one of the reasons why I thought it was important to tell my story. Share my story. So that communities can see that this can happen to anyone. It impacts everyone. It has no borders. It doesn't matter what color you are. It doesn't matter what socioeconomic background you come from. HIV/AIDS impacts everyone, and everyone needs to be educated on it. We have a lot of seniors, older adults, who are getting infected as well. This is a population who never thought that this would happen to them. But we have a woman in her 80s.
What advice would you give to someone who was recently diagnosed with HIV?
It's going to be challenging. It's going to be hard. Surround yourself with people who love you, who will support you. I have a lot of faith, and that helped me a great deal. Understand that you are living with HIV -- not dying of HIV or AIDS.
One more question. How do you adhere to your meds? What are some tricks for seeing your doctor on time, taking your meds on time, etc.?
It's always challenging, especially because of the side effects. I have my own little routine. I take my meds when I eat dinner. And that's what I do every single day. So, my recommendation is to take your medication when you're less stressed, like when you're at home. If you're working, there's so much going on in the office that it may not be a good time. Breakfast might not be a good time, because you might have to deal with side effects that will impact you throughout the entire day. I tend to take my medications at night, because if I do experience any side effects, I can sleep through them. Just adhere to your medications.
Also, bring a list of questions to your doctor. Because a lot of times you have questions that you forget when you're there. I'm prepared and I'm like, "Okay, these are some of the things I've been experiencing." Also, keep a journal. A journal is always good, especially for those emotional, challenging days. And write. And surround yourself with positive people. Keep the faith, because you can get through this.
What a great interview. Thank you so much.
This transcript has been edited for clarity.