NYC-Feature Story

Twenty Years Living HIV-Positive
An interview with former NYC teen writer Dave Nisbett

By Orubba Almansouri, Natasha Dawkins, Marsha Dupiton, Keenen Freeman, Courtney Smith and Divine Strickland

Twenty years ago, former NYC writer Dave Nisbett contracted HIV at age 15. Back then, the diagnosis still amounted to a death sentence for many. But Nisbett has never let his diagnosis stop him from living his life. He’s a single father to three daughters, and divides his time between being a stay-at-home dad, blogging about his life, and going to college, where he’s double majoring in political science and philosophy. We spoke to him about what it’s been like to live with HIV for so long.

NYC: How did you find out that you had HIV?

Dave Nisbett: When I was 18, in January 1991, I was trying to get into the Marines, and an HIV test was required for entry. My recruiter actually told my grandmother I was positive before he told me. I confronted the recruiter and he said, “You need to get your blood checked. I don’t know what else to tell you.”

NYC: Do you know how you got infected?

Nisbett: I was 15, living in North Carolina with my parents and sister. I had just come out to them as bisexual. My father didn’t take it well, and it was a traumatic experience. There was all this tension in the house and I just wanted to get out.

One Saturday, I took a walk in the park and had an unprotected same-sex encounter with a stranger. I knew about HIV and how to protect myself, but I didn’t think about what I was putting myself at risk for.

Right after the encounter I got anal warts, an STD. At the emergency room, the doctor who treated me didn’t mention anything about HIV. Eventually it went away and I tried to block it out of my mind.

But three years later when the HIV test results came back for the Marines, I knew that was the encounter that had infected me. It was the only unprotected same-sex encounter I’d had.

NYC: What did you do when you found out you were positive?

Nisbett: When I got off the phone with the recruiter, I remember just staring at the phone, like, “What am I gonna do now?” All sorts of thoughts were running through my head about living and dying. At that time there was an ad campaign with the national AIDS hotline number, and since the phone was right there I said, “You know what? Let me just call.” I called and was immediately referred to an adolescent clinic in the Bronx.

My girlfriend at the time was the first person I told after that. She and I were intimate and even though we had protected sex, it was important that I tell her. She was wonderful. She said, “Do you want me to go with you to the clinic?” We went and they explained what the risk factors were. We eventually broke up, but not because of my status.

Then I had a conversation with my grandmother. The family was worried about whether it was safe to have me in the apartment because my sister was pregnant (she and I both lived with my grandmother). The adolescent clinic brought us all in for family counseling and explained what the risks were and weren’t. They did a great job of educating us.

My parents were in North Carolina and I told them over the phone. My dad didn’t show much emotion, but my mom was crying and saying how sorry she was. The following summer she came up to New York and I remember her being really cautious around me. One day I had just gone to the bathroom and I saw her secretly disinfecting the toilet.

NYC: Were you able to get the right treatment for your disease?

Nisbett: Had I not made that phone call right away and gotten the referral to the adolescent clinic at Montefiore Medical Center in the Bronx, I think my life would have turned out differently. In 1991 it was only the second adolescent HIV clinic in the country. The support services that they have there, I couldn’t ask for more.

It wasn’t until 2003 that my immune system started to decline enough for me to be diagnosed with AIDS and have to go on medication, leave my job and go on disability. So for 12 years I was doing my thing—I had a career as a case manager for other HIV-affected families, got married and had kids.

I’ve been on the same treatment regimen since 2004. I get side effects like upset stomach; I have to eat before I take the medicine. But it’s the fatigue that gets me most of the time. I take four to five pills once a day. It’s intense because if I take it at 11:00 a.m., I have to maintain that. If 11 a.m. the next day comes and I don’t take my medicine, the HIV virus will say, “There’s no medicine here, let’s cause some havoc.” That’s how your viral load rises and your T cell count declines.

NYC: How did you have three children and keep them HIV-free?

Nisbett: When I met my wife in 1997 (we’ve since separated), I told her immediately that I was bisexual and HIV-positive. We just fell in love; it was such a soul-mate thing. After we’d been together for about four or five months we started to talk about having kids.

My doctor said, “That’s really risky.” But I’ve always had a low viral load and a high T cell count, which suggests that at any given time there isn’t a lot of HIV in my blood and semen. It was an intense decision to make, but we stopped having protected sex to conceive, and as soon as we found out she was pregnant we went back to protected sex.

It’s a crazy thing to say, but she was willing to risk becoming infected for us to have a family together. She had to take three HIV tests during both pregnancies (she already had our oldest daughter from a previous relationship) and then another right before delivery to make sure she wasn’t infected. All those tests came back negative. If she had become infected, they would have given her medication to prevent the baby from being infected during childbirth.

NYC: Did you tell your daughters about your disease?

Nisbett: My oldest is 14 and I have a 9-year-old and an 8-year-old. Our relationship is incredible; we talk about everything. I told them the whole story in age-appropriate terms. I told them I’m bisexual almost four years ago. Gradually I started introducing HIV into our conversations and got some books about HIV. Then I told them somebody in our family had HIV, and that I wasn’t going to tell them who it was yet. Almost a year later, in December, 2007, I told them it was me.

They were surprised. My 14-year-old (she was 13 at the time) wanted to know, “Does that mean Mommy is positive? Does that mean we are?” It was really fortunate to be able to say to them that, no, they and Mommy weren’t infected.

It’s an ongoing conversation. I didn’t want to just drop it at the dinner table and say, “OK, don’t ask Daddy about it again.” They see the medicine I take every day. They know there are good days and bad days.

NYC: How do you balance managing your disease and being a single father to three girls?

Nisbett: They’re with me four days a week and with their mom three days a week. They have lots of friends who don’t have fathers in their lives or have the routine that we have. I pick them up from school. We do homework. I cook, I clean. We have dinner together at 5:30.

The only time it’s irregular is when I don’t feel well, physically or emotionally—I also suffer from depression, which I think has been more debilitating to me over the years than the physical symptoms of HIV. When that happens, I take care of responsibilities but then I rest, and they see Daddy’s a little quiet, a little subdued. Before they knew I had HIV and depression it was hard for them to understand why Daddy is up sometimes and down sometimes. Now that they know, they’re able to say, “Daddy’s not feeling well today; let’s just chill out.” I always tell them when they see me down, “Tomorrow’s another day.”

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