Jesse, age 59 / Ellicot City, Maryland, USA

AIDS2016_Jesse (2)


I was aware that I was likely positive. My late partner died of AIDS in 1985, and I am very certain that I had a transmission in about September of 1982 because I had a sexual encounter with my partner and the immediate biological response was a classic transmission response. And those symptoms were so shocking because they are typical flu-like symptoms and they’re usually pretty dramatic, but it wasn’t flu season. So going backwards, I am absolutely certain that that was when my transmission occurred. And then, of course, he died three years later.

Going through the experience of my late partner’s death from AIDS was pretty transformative. I’m a lawyer by background, and because of that experience I became very committed to the HIV response. I got to be involved early on as a sort of legal expert in the Philadelphia area about HIV/AIDS and the rights of both employers and employees, because I’m a labor lawyer by background. I discovered that having that legal basis was useful for the rest of the community, and then I became involved, both on the faith side and in the CBO side, in HIV. I was on the first Episcopal task force in the Diocese of Pennsylvania, I was doing all this work as a lawyer representing city government around HIV, and I was there at the founding of Action AIDS. All of that was happening in that late 1980s time frame, when I was finally diagnosed. The response was growing and my personal engagement and sense of responsibility for the growth of that response just grew and grew and grew.

My doctor thought that, given my history, it was time for me to document that I actually had HIV because he was concerned that if we didn’t get the documentation, I couldn’t start doing whatever was necessary to take good care of my health. I really do credit Dr. John Turner in Philadelphia, who said, “Let’s just verify that you, in fact, do have the virus, and if you do, then we’re going to move forward, and you’re going to live.” And that is what he said: “I’m going to take care of you. And you’re going to live.” Bless the soul of Dr. John Turner. I credit Dr. Turner for instilling in me that I needed to be on this road for staying healthy. Routine viral load test, and even getting on an early regimen. – that, in 1989 or ’90, was really pretty surprising. So I learned pretty early how important it was to literally be a partner with your care provider. That was the root of my own personal health.

And then, of course, the advocacy community and the treatment and care and support community provided emotional and political impetus to take care of myself. You have to have the personal commitment to stay well, but you realize that it’s also about being who you are as a person in the community. The political and activist aspects of HIV really do become almost braided as part of your identity as a person living with HIV, at least for me and, I think, others in my age cohort.

I have to say that the faith community that I come from, which is the Episcopal community, was in the forefront of accepting people with HIV and welcoming them into the church, and that is really the third part of this braid of health and wellness, knowing that I could be pretty open about my HIV status, or at least be open with other people of faith who also had my HIV status or were concerned about people with HIV. That sense of spirituality and having a faith basis, combined with political activism and the desire to take care of your own health, those three really do work together, and they’re pretty powerful.

I still have a extremely ferocious medical provider. The doctor that I have, at Johns Hopkins in Baltimore, is ferocious about taking care of my health, but he can only do it if I’m in partnership with him. And since I turned 50, that partnership has become even more important. I had one of the leading HIV researchers in the country as my doctor – I had to be recommended for him to take me on – and after about a year or two with him, I said to him, “Doctor, I’m a black gay man over 50. I think there are some other things for us to think about besides just HIV.” He was actually quite surprised that somebody had the nerve to say that to him. I was like, “So?!?” And he realized that even his expertise wasn’t broad enough to take care of everything that I might be facing, so he referred me to someone else, and that has been transformative. He looks at my kidney, my liver, and the impact of the ARVs on me as I’m aging. All of that is really useful.

This doctor has a deep, deep well of knowledge. He stays very current on treatment options. He can balance all of these different combinations to try to tailor the best one for me given what I have already taken in the past and might be resistant to, and given the potential impact of some of the different treatment regimens on my liver and my kidney, and also on my brain. I have to really honor how hard he’s working, to make sure that I do my part, so I’ve got to make sure that I get my lab work done well in advance so he has the most current information when I’m sitting right there in front of him. Then you can actually contemplate, okay, these are all the things you’re taking, not just your ARVs, but for cholesterol, gout, whatever else you’ve got. He can look at how all of those are interacting together to keep you healthy, or what needs to be changed. And with electronic medical records, especially if you’re in an integrated system, he can communicate with others in your system to say, “You know, I think that this drug that he’s on might be having an interaction with this drug that I’m prescribing. Can we now communicate about all this?”

I just had – oh, my goodness! As I’m aging, I’ve just had all of that happen just this year. I had to have a kidney biopsy – that’s not something that you think about in your 30s because you don’t need it in your 30s, but I needed it at 59. And the communication between all of my doctors was amazing – bless them all, they really did come together. When my kidney specialist, about to do a kidney biopsy, sits down in my pre-op right before going in for the surgery and says, “So, I want to make sure that we’re talking about your ARVs.” Amazing! Because he realized that the intersectionality of all of this had a true impact on what he was about to do. The biopsy turned out to be negative, but it was a pretty scary event.

I think that the main challenge in everyday life is feeling secure about the future. People living with HIV – at least for me – the long-term financial impact is a big worry. When I got my private disability insurance plan, back before blood testing was the norm for insurance companies, I felt like I had just slid in under the wire. But no one suggested the possibility of even thinking about long-term care. And now that I’m getting older and with my own father in assisted living, I’m like, well, how is that gonna be an affordable option for me if I don’t have long-term care insurance? And now it’s literally impossible to get it. And I think I am not the only one who’s facing that reality of, like, “Oh, my gosh! How am I really going to get through the next 20 or 25 years, financially?” That’s the biggest worry.

My current thoughts are, better elect the right president. Because the Social Security system and the Medicare system? Those are the things that will be the pillars of financial security for the future, even for those of us who might have our own private resources. No matter how big your 401k is, or your savings account, it still might not be enough. And these other bedrocks of Medicare and Social Security, which we do believe are entitlements for being an aging American, they damn well better be there when I need them, especially as a person with HIV.

I’m lucky to have a partnership – we’ve been legally married for eight years and together for soon to be 28 years. Having a partner or spouse who is as concerned about your health and well-being as you should be is probably one of the greatest gifts. And I have to say, marriage equality has been a great gift, because it makes that relationship not only emotional, but legal. So that’s a great foundation for survival. His commitment to my health and well-being, and my commitment to his – as a discordant couple, we’ve been very clear about making sure that the other is healthy. When I tell people that I’m in a discordant couple for over 20 years, and they said, “Well, how do we do that?” I tell them, “That’s none of your business. That’s between the two of us.”

In your 50s, you’re concerned about getting to your 70s, and what is the pathway forward, socially, romantically, and financially. Who’s going to be there to take care of us? Especially since so many of us were not in the era where marriage and adoption were real options. And so, not having our own children, as we have been the children of our parents, that question really does plague us. Who’s going to be there to take care of us? If not our peers – we can’t rely on nieces and nephews and brothers and sisters. Our brothers and sisters are in our same age group, and it’s not a burden that you want to put on nieces and nephews. So who, besides us, will take care of us?

The truth is, this is a conversation I have with my peers all the time, and none of us are making particularly great plans. Those who are more financially stable are making the best plans they can, and those who are a little less financially prepared are operating on faith and hope. And those of us who are in between are doing both. We’re trying to make the best plans we can and operating on faith and hope.

This is not the last chapter, but it might be the last chapter in this part of the book. Some of the most interesting and amazing novels – and I’m reading one right now – are in parts. Part one, part two, and part three. This part of my life might be the last chapter of part two. Part three is yet to come.