Susan, age 54 / New York, USA





I guess I don’t even think about it too much anymore. In the first few years? Like, almost 24/7, it was something that was on my mind: am I gonna be around for my kids? I didn’t even think about grandkids at that time. And I always worried that my daughter would have to leave school to take care of her siblings if something happened to me.

It was in 1995 when my husband was hospitalized, very ill, and they had told him to test for HIV. When he tested positive then I had to go in and test, and my kids – I have three children – and when I tested positive, they had to test my children. My middle child tested positive. She was three and a half.

There was no light at the end of the tunnel for a long time. I was working, and I worked for another year after my diagnosis. And I think because I was so isolated and I wasn’t connected with people that I knew I needed to connect with to get more information, to be in a supportive environment,  I wound up leaving my job. I also needed to take care of my daughter.

My husband was extremely ill. When he was diagnosed, he had an AIDS diagnosis – he had 5 T-cells. Yeah! When he told me that I said, “You mean, like, 500, right?” He said, “No.”  And, you know, he died with guilt. It was in 1996 when he passed away. I didn’t understand the illness. I wasn’t even in that forgiving phase. He was a human being and I tried to overlook – but I had a lot of anger, you know? I felt like he gave my daughter a death sentence – I didn’t even care about me. I think if he were still here we could have been friends. I’ve kind of let go of that anger, because it’s not constructive. He didn’t go looking for HIV. He didn’t go to the store to get it. And, you know, life is life. You’ve got to move on, and you have to think positive and do things that are constructive for yourself.

I think what helped me gain a little control is trying to find out as much information as possible, especially with regard to my daughter. I didn’t know anything – I didn’t even know what HIV meant. I really didn’t have time to waste – it was really important that I give my daughter the best care at that time. You’re always thinking about your children; it took me a while to start taking care of myself. You just kind of put on these rose-colored glasses and you say, “Everything else does not even matter anymore. It’s my daughter’s health and my other two children. I need to be here for them.”

I was able to develop a pretty good support network. My best mate, Sam – her kids were going to the same daycare at the time that my kids were going. We became very close – she has really been a major rock in my life. I disclosed to their daycare because I needed to let them know what my daughter’s situation was, that nutrition was very important – that’s one of the things that I learned early on, and I wanted to make sure that that happened for her. And they totally embraced me there. You know, you would think that they would reject you? But these were some really wonderful daycare providers.

A good friend of mine passed away a little over a year ago: his name is John Falconberg, and I think I’m here today because of him. He was a registered nurse. He was able to break down the information for me – because I had no medical background,  I worked in the legal field, and the terminology was very overwhelming for me when I was diagnosed. He was my mentor ‘til he passed away; he was my major person that I counted on with my organization, SMART, which stands for Sisterhood Mobilized for AIDS, HIV Research, and Treatment. He was living with AIDS for over 30 years, and I really depended on him to give me the correct information. And that is what we do at SMART: we’re a place where women and youth living with or affected by HIV and AIDS are able to get the correct information so that they can make choices in their lives. And actually my daughters, Samantha and Christina, started the SMART Youth Program in 2005 because they wanted their own program for youth.

I also was diagnosed with breast cancer in 1999, and that was, like, a real reality check for me. I think I really saw my mortality there. You know, I got over living with HIV, and then I was diagnosed with breast cancer. And my friend John, he said, “Look, you’re going for the cure with that.” He said, “HIV is not curable. This, you can cure.” He said, “You will lose your hair. You will be going through horrible treatment.” And he said, “But there is a light at the end. You will be cured of this.” And he was right, he was absolutely right, because since that time, when I’ve seen my oncologist, she said, “I think you’re cured…?”

In 2007 I suffered a mini-stroke. Like, what am I, a magnet for illnesses?!? I think that’s when I stopped really getting stressed out, overworking myself. And I said, you know what? I’m not going to kill myself for things. You know, I feel good about what I’ve done with SMART – I love SMART, I love the women, I love the youth – but I need to strike that balance. Because I was working 24-7 and that was another wakeup call. Like, uh, time to chill a little bit more.

Everybody’s doing great. My oldest, today is her birthday – she’s turning 26. That’s Samantha. And Christina is 22, she’ll be 23 in November. And my son Joseph is 20. And I’m also a grandmother of two, a “G-ma.” My oldest is married and she has two babies. One is turning three and the other one just turned one. I never thought I would see this day. And I’m enjoying every single day, being with my kids, my grandkids and, you know, just enjoying life. And doing the work, and trying to strike that balance, because it can be pretty overwhelming.

I think that I’m comfortable with me. You know, this illness has – in the beginning it may have defined me. It certainly doesn’t define me now. I think I’ve kind of found my voice over the years. I don’t think I was ever outspoken before this. And it’s been almost 20 years since my diagnosis, and whatever information that I can impart to people, I don’t push it on you, but I come from some degree of experience. I just see myself as a friend, as a mom, as a “G-ma.” I think those are the important things for me. And to be able to uplift other people, because this – especially for women, it really is a diagnosis that weighs them down. And I think when you can be a model, and have that positive attitude, it really goes a long way.