Father_HIV

My Life as a Dad With HIV

‘My 3-year-old grandson was wiping the sweat off of my face and going, ‘Don’t worry, Poppa. I’ll take care of you.’’

While the first decades of HIV awareness were mostly about positive people fighting for their lives and the prevention of new infections, there’s been relatively little discussion of the experiences of positive men living with the disease ever since — including when those men become fathers.

Their path to fatherhood is numerous. Some, of course, are already fathers when they become positive. Others adopt or use surrogates. Yet more, like Magic Johnson, conceive with their female partners while positive. (Both members of a heterosexual couple can be HIV positive and still conceive and deliver an uninfected baby with proper medication.)

To better understand life as an HIV-positive dad, I recently spoke to three such men:

  • Earl Alexander, 63, lives in Dubuque, Iowa. He has two daughters, Lindsay, 34, and Christine, 32, and published a children’s book called My Dad Has HIV in 1996.
  • Michael Zalnasky (aka Zee Strong), 59, lives in South Florida. He has one daughter, Madison, 28, and two grandchildren — Pierce, 7, and Luca, 5.
  • Joshua Middleton, 29, lives in San Diego. He doesn’t have any children yet but definitely wants some in the near future.

Here’s what they told me…

“My survival was far from guaranteed. All I was hoping for was to see my children graduate from sixth grade.”

Alexander: In 1987, the Red Cross called and told me I was HIV positive. My oldest daughter was in second grade, and my youngest daughter was in kindergarten. Nobody at their school ever talked about HIV because nobody knew anything about it. So the route we took was all about communication. That was most important to us when it came to other kids and their parents and teachers — especially because my daughter Lindsey was bullied about me having HIV, and we had to call parents into the school to talk about it. I was also a substitute teacher in the school system, and people attempted to force me out because of my status.

All of which is to say that there were lots of people who were totally ignorant, dumb and sad. They didn’t want anything to do with me, which was okay — it just told me about how little they understood AIDS. My goal then became to teach people that HIV is everyone’s issue. And so, over the last 25 years, I’ve probably spoken to thousands of people at hundreds of schools all over the Midwest and elsewhere in the country. In South Dakota, I had a little boy come up and say he wanted to talk to me. He was in second grade, and he said, “My, my my…” before breaking out into tears. Then he finished, “My dad has AIDS, too.” All I could do was throw my arms around him and tell him, “I love you.”

And, of course, I wrote the book, My Dad Has HIV, with a couple of other teachers. I dedicated it to Lindsey and all the children like that little boy in South Dakota whose lives have been touched by HIV and AIDS. It talks about some of the science and how you become ill. Stuff like, “A cold is caused by a virus and so is the flu and chickenpox. You can get them from touching. But these viruses can be treated to go away. The one my dad has is called HIV. It never goes away.” At the same time, it also explains how HIV cannot be found in tears, sweat or saliva.

A lot of it is about Lindsey’s fears as well. There’s one page where she’s sitting in a chair petting her cat and saying, “I was afraid to tell my teachers and friends that my dad has HIV. Will they still play with me at recess? Would anybody ever be my friend? Would my dad die? I was scared.”

Back then, my survival was far from guaranteed. All I was hoping for was to see both of my children graduate from sixth grade. Yet, here I am 34 years later. My viral load is undetectable, with less than 10 copies of HIV. Twelve years ago, I had more than 140,000 copies. And of the original support group I began, I’m the only one left out of 20 people. Meanwhile, my wife Jan, who I was married to for over 35 years, died from colon cancer eight years ago. I certainly didn’t think I’d be the surviving one in our marriage.

Now I live with my new wife Angie, who I married three years ago, and get to spend time with my grandchildren. I was there for the birth of my daughter’s twin boys just this past April. It was an absolute blessing.

As I age, I could just cry all day because I got to see my daughters graduate from sixth grade, 12th grade and college as well as walk them down the aisle and see babies born. I get to be there and hold my grandsons as they grow up. As my daughter says in the book, “I want my dad to be there as I grow up.” Luckily, that’s absolutely been the case.

“My 3-year-old grandson was wiping the sweat off of my face and going, ‘Don’t worry, Poppa. I’ll take care of you.’”

Zalnasky: I was diagnosed in 2014, as a heterosexual man, a father of one and a grandfather of two. The culture at large still thinks HIV is a gay disease that only affects gay men. But that’s not the case. I did have some bisexual experiences in the 1980s, but they don’t coincide with the timeline of me getting sick.

At the hospital, they told me I carried HIV in my system for about eight years. For about six years, I thought I had throat cancer because I was having voice problems. I was so scared to find out I had throat cancer, because I’d see these commercials with people with holes in their throats, and there was no way I wanted that for myself. I thought, I’ll just die. As a result, I went several years without receiving any type of medical treatment whatsoever.

Because of that reluctance, HIV festered in my body — from HIV to AIDS and all the opportunistic infections it brings with it (cytomegalovirus, PCP pneumonia, candida-esophagitis). In short, I was a train wreck.

I was in the hospital for a week following my diagnosis. My family knew that I was in the hospital, but nobody knew what was wrong with me. On the 100th day after my diagnosis, I stepped out of the shower and looked at myself in the mirror. My ass cheeks were hanging off of me. I was 109 pounds, walking dead. I grabbed my cell phone and called my daughter. I said, “Madison, I have something I have to tell you. There’s more wrong with me than what you think.”

She said, “Is it your liver?”

I had Hepatitis A when I was a child, and everybody thought that was what was wrong with me. I told her, and she broke down. She goes, “I have to hang up; I’ll call you back.”

A coworker of mine reached out to her and said, “Listen, you either need to come get your father, or you need to get him in care. Because he’s going to die out here in Iowa.” They also created a GoFundMe for me, and within three days, it raised $6,000. I was able to pack up my apartment and move to South Florida so my daughter could take care of me. The day I got here, I asked my grandson if it was okay if I stayed with him for awhile. He was three years old, and he said, “Oh yeah, Poppa, that’s fine. ‘Cause you’re sick, and I have to take care of you.” I’m alive today because of my two grandsons. They and my daughter bent over backwards to take care of me.

Luca, the youngest one, would grab all his Legos and toys, pile them in front of my bed and start nudging me, saying, “Poppa, will you play with me?” When I wouldn’t respond, it turned into, “Poppa, you have to take your meds. It’s meds time.” When I was at my absolute worst — when I hadn’t eaten in five days and had only like four sips of water,  and I was laying there with my head in the garbage can, dry heaving and gushing sweat — he’d stand over the top of me with a towel, patting me on the forehead. He was wiping the sweat off of me and going, “Don’t worry Poppa. I’ll take care of you.”

The next day, I woke up and there were like nine bottles of water on my nightstand. Because that young boy kept bringing me water. My daughter, too, forced me to get out of bed. She took me to GNC and bought $180 worth of products. I started making protein shakes with them, and those shakes enabled me to keep my meds down. And if I was able to keep my meds down, I was able to start getting healthier. My lab work started to improve. My taste buds started to come back.

We all lived together for about four years. I moved out about a year ago. Now I’m in a house with some roommates and doing very well. I take my meds everyday, which Luca still reminds me of. When I first moved out, my daughter even taught him how to talk-to-text, so that he could send me the med reminders in the mornings.

They never turned their backs on me. My sister, meanwhile, told me that when she faces God, God will accept her, because her blood isn’t tainted. My father hasn’t spoken to me in five years. We were best friends so that really hurts. I think it’s in response to me being so public about my diagnosis. He’s in his mid-80s. He came from that generation where they don’t look at things the same way. In his mind, it’s one thing that I have HIV or AIDS, but I didn’t have to go and tell the world about it.

Honestly, it’s all hard, but I also want people to know that it’s not as hard as they might think. Because in a lot of ways, my grandchildren, my daughter and I all live very normal lives.

“Having HIV makes you focus on what’s important in life, and at least for me, having kids is definitely part of that picture.”

Middleton: When you’re HIV positive, there’s still an automatic assumption that kids are off the table. But personally, I really want to be a father. Right now, I’m in a relationship with my partner and he’s negative. We’ve only been together like a year, so there aren’t any immediate plan to have children, but it’s something I hope happens in the near future. Having HIV makes you focus on what’s important in life, and at least for me, having kids is definitely part of that picture.

There are a variety of methods. A guy can become undetectable through medication and go about conceiving kids that way in a straight couple, because “undetectable equals untransmittable.” Or there might be a surrogate mother involved.

But when gay dads have a child through a surrogate, it becomes a whole other struggle. There’s still a lot of stigma. The woman has to consent, of course, but doctors can’t legally tell them it’s a 100 percent chance they’re going to be fine. They can’t put their license on the line by saying that because if something happened, they could be held liable.

The reality is, though, we have to look at real statistics versus theoretical statistics. Is transmission a possibility? Yeah. But so is the possibility that you will get struck by lightning three times in a day. You know what I mean? There’s always going to be a theoretical risk.

Most infectious disease specialists are now pretty savvy when it comes to a heterosexual couple having kids when one of them is positive — whether it’s the mom or the dad. We’ve made a lot of advancements in that regard. I mean, there hasn’t been a kid born positive in the U.S. in forever, just because there’s so much screening now. Even if the person doesn’t take medicine their whole pregnancy, they can receive medicine during labor, and that’s pretty much going to make sure the kid comes out negative.

There’s also, obviously, adoption. My partner’s Deaf, and we’re very involved in the Deaf community. We’ve talked a little bit about adopting, because there’s a lot of people that don’t want to adopt Deaf children. When it comes to the adoption process, though, my HIV status could be looked upon unfavorably, because there’s such a stigma still that you’re going to die or that it means you have a certain lifestyle. I definitely think it would come up during the process and could make or break us getting a kid or not. It would be very disappointing to be denied a child because of that.

Because in the end, HIV is just another layer of who somebody is. It doesn’t dictate the kind of father you’re going to be.