Ron, age 50 / District of Columbia, USA

 

AIDS2016_Ron_50

 

 

I was a closeted gay man working in international development. I had been a Peace Corps volunteer and was going to school for public health, but taking short contracts to pay for school. I was living and working in Mali, in West Africa. This was the year 1994. I needed to have a resident permit in order to continue some work I was doing on a child survival project.

I went to a little clinic run by a French NGO and I had my HIV test. At that time it was a little less compassionate than I think I would have imagined it would be, and they kind of abruptly gave me my status and told me, “Well, yes. We checked it twice. It’s true.” You know, when I sort of asked incredulously, “Is this the case?” It was not the best of experiences. I think it was before we started getting a little bit smarter and supportive about the way we gave the information to folks.  And, so, yeah – that was when life changed.

After my diagnosis, I was then about 26 years old and I thought, well, I had another six months of my contact work in Mali, what do I do? Luckily my work permit was not denied, so I did have the ability to stay there and finish up my work. There were no real treatment options at that time. After several months – I think about maybe four or five months later – I started developing signs of Kaposi sarcoma. Physically the virus was really making itself known, so I had to leave and go back home to the States.

Though I’m from Boston, I wasn’t sure I wanted to go back home to family at this point. Don’t forget, friends were dying of AIDS – there was not the options to really live. So I decided to go a place that I knew had a supportive community healthcare clinic and where I thought I could get a job if I needed to work to pay for whatever I needed to pay for.

I went to D.C. and found great health support in managing my Kaposi sarcoma and getting chemotherapy for it, and was able to get some work. And about six to eight months later some of the great new clinical trials with HIV-combination treatment were just getting started, a stroke of fabulous luck on my part. I was able to get enrolled in treatment and within the course of a year, my health turned dramatically around, and out of pure gratefulness I started working in HIV as an activist, and I’ve been working in it globally ever since. Yeah. It’s been quite a journey since those days.

Eventually I felt I could accept the support and compassion of friends and family – ’cause there’s a lot you go through in accepting that you’re HIV positive, it took me a while to want to rely on family support. And so when I did it was good, and that certainly has been a foundation, you know, feeling loved and feeling accepted. I think a lot of us who are HIV-positive when we’re young, we don’t think we’re gonna get that automatically, or when we’re homosexual and young and HIV positive. Fortunately, I overcame that hurdle. That foundation has certainly gotten me through.

But for me, I have been, since then, a real part of the AIDS movement in different ways, and that has also been hugely important to me, to be part of different communities of people around the world who are doing this work. Since those days I have worked, and learned, and tried to build, and network, and share learning with other groups of people living with HIV around the world, and those are really my community of people. I firmly believe in the power of peer support amongst other people living with HIV, and so I have my touchstone friends and colleagues, both in Washington, D.C. and those I network with in other parts of the world, and we keep in touch with each other. And it’s not always about HIV, but that fundamental thing we have in common – long-term survival – it’s important to our relationships. Yeah. And we continue to this day to collaborate and share and remark occasionally to each other, “Wow! We’re still here.”

I didn’t think I would be alive, you know? Every decade of life is a miracle and an amazing journey. I have yet to encounter any physical challenges. I’m aware of what they might be but I have weathered a few opportunistic issues related to HIV in my lifetime, and I think I still have enough fight in me to get past whatever the next one might be.

I still have, you know, varied complications or switch-ups in medications, partly because I started treatment at a pretty advanced, sick state, but my health is awesome at age 50. I’m very happy. I’m constantly grateful and blessed that things are still going from here. I’m not afraid of it anymore, I don’t think. I’m not afraid of getting sick again. If that happens, I think I can get through it. But yeah, so far, knock wood, everything’s cool. Yeah.

It’s really a lot less now about HIV and it’s just about coming to terms with the other health issues we all face getting to be the age of 50, like heart issues and some of the other geriatric issues that we’ll get into over the next 10 to 15 years. It’s kinda cool! I’m actually looking forward to, um, not having other health issues, but being able to think through other issues as challenges. I think moving into my future years, I don’t think HIV is gonna be the predominant barrier. I don’t have anything else major to deal with other than just the routine aches and pains you feel after every few years of getting older.

I would say probably all the way until I hit 40, having gone through a couple of years where I thought I’d be dead in a few months – and was actually advised by different clinicians, “You need to plan your end of life stage” – it was hard for me to do long-term planning. Then age 40 hit and I thought, “Well, you know, I’m here.” The doctor told me, “Quit your bitching. You’re gonna be here for a while.” And I’ve learned to do that more. I can long-range think, and I feel more in charge of my health. I don’t feel that I have to rely on doctors. I don’t know, it’s a different mindset that I’m in now.

I saw a lot of people die when I was younger. I saw a lot of people die here in Africa when I was older. Recently had the death of my dad. I’ve become, through different learnings and meditations, a little bit more Zen about life and death than I was at age 26. Not so much afraid of it, and I think it’s why I just – I don’t know. I try to put more into every day than maybe a lot of other people do, but I don’t think that I’m afraid of anything physical, or even death at this point. It will happen. It happens to all of us. I fear more issues that would happen to the people I care about and love, because I do rely, more and more in life, on the support and love of friends and family.

I take pills every day, so you can’t not think about it every night, taking medication before going to bed. It’s on my mind all the time, and I work in HIV. What I do need – and I’ve been better about in the past couple of years, and friends and I talk about this – is getting away from HIV a little bit. Because when you work in and live in it, it does become overwhelming. So I need to take holidays and breaks from work and even from other friends living with HIV, just to get out of the space, because there’s so much to do, and so much to support, and so much to learn still, and advance. When you’re sort of an activist at heart, you have to force yourself to take a break from it.

I’m stable economically, health-wise, career-wise, great family foundation. So I’m not wanting. I’m just happy to have the luxury of being calm and at peace, and comfortable, I suppose. I don’t feel burdened or overwhelmed by anything particularly in life. I know it sounds kind of sloppy, but I just, I feel mostly blessed. I’m an overly optimistic person – not in a naïve way, I don’t think I’m naïve about it, but I’m constantly teased by friends and colleagues about that. But I think it’s been my pudding for success, you know?

Right now there’s a lot of joy – I think this happens with people around my age, at least the friends I know around my age – a lot of joy in seeing the youth in my life growing up. Nieces, nephews, adopted sort-of godkids, you know, supporting them through just basic 101 living. It’s awesome.

I’m really fortunate in my life, and I think part of it’s working in HIV. I’ve always been able to be openly gay, openly HIV-positive. I’ve never really felt the need to temper what I say to people, or who I am. I don’t – I haven’t really felt personally stigmatized, and I’m really fortunate and blessed in that. Part of it is the privilege of, um, whether it’s white privilege, or male privilege, or all of that – or U.S./Western privilege that I know that I have.

But interesting enough, one of the things that I most focus on is stigma reduction. We have a stigma action network that we’ve organized; it’s this global network that brings organizations all together to understand the basic research on stigma and programs that counter it, from the creative arts to the clinical settings. And I think the experience and stories of people who are facing stigma, I think, are facing it not just for HIV, but are facing it for classism, misogyny, homophobia, racism, all of that, and those are sort of layered on top of what is the basic HIV stigma.

I think I have another good ten years of work in me, and then I just want to retire and write. I’ve been keeping a diary for about 13 years now. Sometimes it’s a lot, every day, and sometimes just a little, sometimes just a photo added up. But I wanna reflect back on life a little bit more in detail than I have time to sometimes and write about what’s happened to me in my life, and share stories of people who have come and gone in my life as well. So, yeah. Tell stories. Like my granddad used to.