Valley Stream, New York
Positive since 1990

I became infected in 1985 from a partner who I met shortly before the HIV test came out. He didn’t know he was positive and had no symptoms. I had just divorced and my ex-husband had been my first and only sex partner. I had heard about HIV/AIDS through the media but didn’t think I needed to worry about it. At the time, HIV was still primarily in the gay and IV drug user populations. I was neither so when I decided to be sexually active with this man, we didn’t use condoms.

As time went on it became known that people could have HIV and be asymptomatic for many years. My boyfriend had used IV drugs in the past and I knew about that. When it became known that HIV could occur in the heterosexual population I became worried. The test was available but I was afraid to take it. No meds, no cure—HIV was very much a death sentence.

I tried to put it out of my mind cause I felt good. My relationship with him lasted about a year and we broke up.

I always had the fear of HIV in the back of my mind. That first year, I had a horrible flu-like illness and I know now that was when I seroconverted though I didn’t realize what was happening at that time. About five years later I started to get symptoms like fevers, shortness of breath and fatigue. It was the beginning of pneumocystis pneumonia (PCP) but I didn’t know it. My family doctor gave me antibiotics but they weren’t working. I asked him to give me an HIV test but he thought I was crazy and didn’t need it. One week later I was hospitalized because I couldn’t breathe. Again I asked to be tested and they did it while I was in the hospital.

Back then there was not the luxury of a 10-minute test result. I had to wait almost a month to get my results. I managed to survive the pneumonia, which kicked my butt. It was rough but I went back to get my result. The general practioner who was treated me was naive about HIV and told results were no good and wrote down the phone number of the local county hospital and told me to go there. That was the extent of my inadequate HIV counseling.

I had to face it. Something I never thought would happen to me. I had no contact number for my ex-boyfriend so I couldn’t even tell him. My son was only 10 years old at the time and I didn’t want to tell him for fear of traumatizing him. My mom was great. She was with me when I found out and was a great support for me.

At my first primary care visit I had 23 T cells. I didn’t understand how serious that was. My doctor handed me a script for AZT and said, “You have to take this or you’ll die faster.”

I should have researched it more but didn’t. I took the AZT and it didn’t help me at all. I just kept getting one opportunistic infection after another.

When my son was 12 years old, he asked me what was wrong. I didn’t want to tell him but he knew something was terribly wrong because I was always sick and had to quit my job as a letter carrier. He started to cry and I knew it was time to tell him. He cried and asked me questions I could not answer. It hurt so much to see the pain in his face. He didn’t want anyone to know because of the stigma. He said, “Please don’t tell my school.” I respected his wishes but this was affecting his life. He started doing badly in school and gained weight. I felt so bad for him and my mom.

I hit bottom in 1996. I found out I had lymphoma cancer. I thought that was going to be the end. My mom was ready to put me in a nursing home. I couldn’t walk and I was about ready to give up. But something in me knew it was not over. I was determined to live. I wanted to see my son turn 18!

Right around that time, HAART had come out and as soon as I finished chemo, which eradicated my cancer, I began to take the new meds. For the first time in years, I saw the hope I was waiting for. My T cells went up for the first time. I started to feel and look better. Maybe I wasn’t going to die.

Through the years, my support system helped so much. The first support group I attended in 1991 was all men and I was the only woman. But they were so supportive and it helped to have other HIV-positive people to talk with. My family was also there for me. But god was my higher power and helped me to stay strong and hang on just long enough for the new meds. Many of my friends weren’t able to get them and passed too soon. It was sad to make new friends and then lose them to the horrible death that was caused by the complications of AIDS.

In 1998, my health was much better and I decided sharing my story with others as a great way of giving back. I went through so much for what? To just sit on the couch and collect disability? No, that was not my plan. Alison Gertz, a New York City socialite who contracted HIV from unprotected sex in the eighties and had passed away years before was my inspiration. I watched her TV movie while I was in the hospital in 1992. I thought she was so brave to share her story at a time when people didn’t do that. I wanted to help save lives just like she had done.

The local AIDS service organization I used had provided a venue for me to speak in schools. Sharing my story with kids and making them realize that you don’t have to be gay, an IV drug user or promiscuous to get HIV was a good thing to do. And it has been very rewarding for me. My son had been out of school by that time and wasn’t concerned about my public speaking. He was proud of me and very grateful I was still alive.

I saw him turn 18 and now he is 34! I’m blessed!

Through the years, I have continued to be a part of the solution and not the problem by sharing my story. I have been working as a peer educator for Planned Parenthood for 10 years now. We do testimony, street outreach and testing in our van. We currently do outreach to women because that is what the grant from the AIDS Institute requires. Plus that population is being hit hardest at this time.

My health is good now. I have a partner who is negative and is supportive of everything I do. I plan to continue on this mission to stop HIV infections by talking to people and letting then know what happened to me so many years ago does not have to happen to them. I will continue until I no longer can, or until there is a cure!

What three adjectives best describe you?
Kind, strong and determined

What is your greatest achievement?
Surviving AIDS before HAART

What is your greatest regret?
Not spending more quality time with my son when he was younger because of my disease

What keeps you up at night?
Too much thinking about tomorrow and what may or may not happen to me

If you could change one thing about living with HIV, what would it be?
I wish I could make the stigma go away. Then more people would get tested. Stigma causes fear and kills.

What is the best advice you ever received?
To always think positive—no pun intended—and stay close to God because with him all things are possible

What person in the HIV/AIDS community do you most admire?
Alison Gertz

What drives you to do what you do?
I know that HIV is 100 percent preventable if people are educated so I educate them.

What is your motto?
Live, laugh and love

If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My photos

If you could be any animal, what would you be? And why?
I dog. I think they are great pets and friends.