This Positive Life: An Interview With Oliver W. Martin III
When Oliver W. Martin III was diagnosed in 1986 with HIV, then called GRID (gay-related immunodeficiency disease), he wasn't alone -- his younger brother was diagnosed at the same time. But for a decade, the two of them told almost no one. "We didn't want to put [our family] through living with the thought that we were going to be dead in a week," says Oliver. Only when effective HIV treatment made a longer life with HIV a possibility, did they share their diagnoses with most members of their large, tightly-knit family.
Since that time, Oliver's been a staunch advocate for HIV prevention and sexuality education in faith communities. He's the founder and chief executive of Conscious Contact of New York, Inc., and the general secretary for the New York City Faith in Action for HIV/AIDS Prevention, Care and Education Coalition. This summer, at the 2011 National HIV Prevention Conference, he'll conduct a roundtable on building collaborative, inclusive faith and secular community partnerships.
Oliver and I spoke in July 2008; I caught up with him recently, and the updates he's given to his story appear in the form of editor's notes below.
Oliver, welcome to This Positive Life.
Thank you so much for joining us today. Can you start by describing how you found out you were HIV positive?
During the mid-1980s, when they started talking about GRID, I thought, "Maybe I should just go and get a physical." That is when I found out I was HIV positive -- or, had GRID, as they were calling it in that moment. They were just changing over to AIDS and HIV.
That was in 1986, so it was the early days. How old were you then?
I was 23 or 24.
What was the first thing that you thought when you found out you were HIV positive, or had GRID?
I was quite frightened, because this was back in the day when people were just dying left and right. I had some friends that were quite ill, so I just assumed, "Oh, man, I guess I will be next." Then my brother took a test too, because we went together, and he tested positive also. It was just a very frightening time for both of us.
How old was your brother at the time he tested positive?
Four years younger than me, so 19 or 20. We were both quite frightened; and we were just happy that we had each other to talk to, because this was a time when no one knew anything about this disease.
Did you have a sense at the time that you were at risk for HIV? Did that have anything to do with your going to get tested?
To a certain extent, because it was at the same time that ACT UP [AIDS Coalition to Unleash Power] had just started and was fairly visible. A piece in one of the national magazines had come out and it kind of frightened us, because it was really just talking about gay men and Haitians being at risk, and we just thought, "Maybe we should take a test, just to see what that's about."
Are you and your brother both gay?
I would say that we're both bisexuals. Or sexual. [Laughs.] There are different labels; we didn't really grow up with them, but we've come to try to work with them a little bit. I would say that we are both probably bisexual.
We're brothers, and we're also good friends, so we both knew the crowds we were both running around with. You know, it's a whole crowd thing. Let's all go get a physical and see if we're okay, since we did have some friends that were ill. We still didn't know what that was about at that time.
About how long did that initial feeling of fear and not knowing last?
For me, it really lasted probably a decade. Because after I found out that I had this disease, it was then a matter of, "Well, what do we do with it or not do with it?" In my case, and that of my brother's, it was "not do with it," because we had some misgivings about medication at that time. It just seemed that everything was so experimental; and we weren't getting ill, so we just decided not to do anything. But not doing anything gave me a great cause to contemplate my own mortality.
It wasn't until about a decade later, when they started coming out with protease inhibitors and we started talking about HIV and then AIDS, and the differences between the two, that I started to feel more comfortable. There were more people talking about it by then, more organizations working in the field, the government was participating in it through the CDC [U.S. Centers for Disease Control and Prevention] and all our health institutions. It just gave me a different feeling, a different level of comfort, around 1994 or 1995. There was still some fear, but not as fearful.
Looking back to the time around your HIV diagnosis, what do you think put you at risk at the time?
I would say, for myself, it was just unprotected sexual intercourse. It may have been with someone who was an intravenous drug user and I just didn't know it.
So you don't know who specifically you got HIV from?
That I don't know.
What was one of the first things you did that helped you come to terms with your diagnosis?
When I started to be less fearful was when I decided that I would go on the antiretroviral medications.
Can you remember what your first regimen was?
Oh, yes. Actually, it's still the same regimen as it was at the beginning. It hasn't changed. It's Kaletra [lopinavir/ritonavir], Videx [didanosine, ddI], and Viread [tenofovir].
What had happened to me was, I went for nearly a whole decade without being sick on any level, without having any issues outside of the fact that my T-cell count was low. Outside of that, I didn't have any other issues.
Then I was hospitalized because I got PCP [pneumocystis pneumonia]. That's when I had a consultation with my doctor at the time. We discussed the new medications that were different than AZT [Retrovir, zidovudine]. That's when I said, I'll start with these. As I started with them, my system just started to rebound itself. It took about two years -- up until about 1998 -- until I was feeling fit again. The regimen hasn't changed at all, but my health has been fairly stable.
The only side effect that I've had is a slight case of neuropathy, and on occasion I do have uncontrollable diarrhea, but it's not a daily occurrence. I do take another pill for that, loperamide [Imodium], which seems to help when it's extremely active. I would say maybe once a month I'll go through a couple of days where it's rough.
How have you found the doctors and HIV specialists that you've worked with over the years?
My doctors have been with New York-Presbyterian, The University Hospitals of Columbia and Cornell -- the Rogers Clinic of the Center for Special Studies. It was sort of neat because, living in Manhattan, I had the opportunity to go and visit a couple of different centers in the mid-'90s. I just happened to like this one, and it was fairly new, so it wasn't as crowded.
I went in and I registered. They assigned a doctor to me and she was my doctor for seven years until she moved from that base. Not that much turnover, so that's been pretty good.
What was your relationship like with your past few doctors?
My relationships with doctors have been pretty good because of the training that I've had on learning what to ask, being involved in my own care and being my own advocate. I feel that I've gotten pretty good care because I've been engaged in it.
Let's go back for a moment and talk about your family relationships. You went to get tested with your brother and you both tested positive. That's really huge. He was the first person who knew about your diagnosis?
Yes. We were the first person to know about each other's diagnoses.
Who were the next people that you told?
The next person that I told was probably one of my best friends.
How did you start that conversation?
Well, because it was my best friend, I just told him. [Laughs.] He was one of my friends from growing up. We went to kindergarten through junior high and high school together. He was really a good friend. There were no real secrets between us, so I just told him -- him and his wife, actually, who were just really good friends. I had a small circle of friends, so honesty is just something we had always been a part of.
I would say friends were first. Family was a little different, though. My brother and I decided not to share it with anyone in our family until maybe six or seven years later. We have one younger brother; he's younger than the two of us, and he knew. The three of us knew and we shared it with everybody around 1991, 1992. I have a relatively large family.
How did your younger brother react -- the one who isn't HIV positive, and who knew early on?
We were all fairly close in age, with a six-year span between us. We grew up together in a rural part of Pennsylvania. It wasn't like we had a lot of friends around us. As brothers, we were just pretty open with each other. Our older brothers didn't grow up with us. They were much older than us, so they were out of the house as we were growing up. The three of us were fairly close and we just talked about a lot of stuff. We just told him and he was involved in that, involved in the knowing.
We didn't tell our parents [laughs] and we didn't tell anyone else. I think it was because we were just struggling with how we'd have this conversation, because what anyone saw on the news was people dying. Since neither one of us was having any issues at that moment, we didn't want to put them through living with the thought that we were going to be dead in a week. This was at a time when people were really just dropping off so quickly.
We made a pact that if neither one of us was showing outward signs or getting quite ill quickly, then we wouldn't say anything until that occurred.
What was it that inspired you to tell them the six or seven years after that?
When we had more information on HIV/AIDS it was just an easier conversation to have at that point, because we were much more secure in our own knowledge base.
We had decided on a Saturday that we were going to tell them. I think we did it that Sunday after the football game.
After the football game, you didn't sit them down and say, "Mom, Dad, we have something to tell you" -- you just told them?
Oh, no! Maybe on TV they do that -- "Here, here, I got something that you need to know! This is happening!" -- but not in our family. I think that's just the way our family operates. We would just put it out there and say, "Oh, OK." Pretty calm.
It sounds like you're all very communicative. How did they react?
I think they were a little frightened. I just remember my Dad's immediate reaction was, "Oh, my goodness!" Basically, I remember him saying, "Well, what are we supposed to do?" What are they supposed to do? "There's nothing for you to do." "Oh ... OK."
Then they wanted to know how we found out. I think my mom was just a little miffed that we didn't tell her sooner, since we had known for a couple of years. But she understood the reason why, because my mother was a nurse and she had seen patients dying of AIDS complications. We just didn't want to put her through all of that.
It was a rare thing in that moment, because we didn't live in New York. We were actually in Pennsylvania, so there weren't as many cases. But there were huge newspaper articles, and a lot of people knew or were connected to someone, because where we were at in Pennsylvania, outside of Pittsburgh, was still a small town. If you saw someone's picture in the paper, it was like everybody knew.
All together, you've gotten some very good responses to telling people about your HIV status. What's the best response that you've ever gotten when you disclosed to someone?
The one that probably surprised me the most was from one of my older aunts. A portion of our family had been living in Puerto Rico, and she was basically the last person living there. When she came back to Pennsylvania around 1999, she knew that I was HIV positive, or living with AIDS, because she was told. It was stunning to me that -- at that time she was 87 years old, or 85 -- she actually understood that we were talking about a disease. She didn't put any qualifiers on it. She seemed to have more information about the disease than I did, because she actually had done some community service at one of the hospitals in the San Juan area, so she was well versed in HIV/AIDS -- more well versed than me and my brother. I was surprised! To this day, she's probably a little more well versed than I am. [Laughs.]
What is the worst response you got when you disclosed?
I think the worst response was no response. That was from some different cousins that I had grown up with who were like, "Oh, OK" -- and then the relationship was never ever the same. Very rarely have we spoken in the last 15 years.
How have your relationships with other family members and friends changed since your HIV diagnosis?
Aside from the three cousins I just haven't spoken with, my relationships really haven't changed with anybody. I think that's because we brought our family (and when I say family, I mean immediate family -- brothers, sisters, nieces, nephews, and great-nieces and -nephews) through the whole HIV/AIDS arena. They're all fairly well educated on all of the issues of HIV/AIDS. They actually -- each one of them -- work, in some way, as a volunteer doing something around HIV/AIDS in the different locations around the country where they live, through church networks and other organizations that they work with. They just help to raise their own awareness.
It sounds like you come from a very supportive family -- and a very big family. You grew up in a small town in rural Pennsylvania?
Yes, a semi-small town. We're an hour from Pittsburgh, so we're close enough to a big town, but everything that's an hour from Pittsburgh becomes a small town. [Laughs.]
Can you tell me more about your background?
All together, I have seven brothers.
No sisters. Our family heritage is African, Spanish, Native American -- or First Nation -- and Dutch. Culturally, I would say most of us would probably consider ourselves African American.
Because of our Spanish roots, we came up through the Caribbean and through Trinidad to Puerto Rico. We actually had a family farm in Puerto Rico up until 1999, when my aunt finally came up here, because she was the last person there.
Are you partnered, or in a relationship now?
I've had a couple of relationships in my 50-plus years on this planet [laughs], but my current relationship is a same-gender loving relationship.
How long have you been with your current partner?
Eleven years. We've known each other for 20-some years, but we've been together as a couple for 11 years. From Pennsylvania, I moved to Chicago before I moved to New York. We worked for the same company; they brought me and a couple of other people from Pennsylvania plus a couple of people from Wisconsin and Ohio together and they put us all in the same place. We all got to meet each other and know each other through working together. Then from that group house I just moved to New York, because I didn't care for working with the company that we'd all started with together.
It sounds like you're open with your family; they know that you're in a same-sex relationship.
Oh, yes. I can't imagine living any other way. [Laughs.] I've always known my sexuality since I was five years old! I think I just come from a family where we consider ourselves sexual creatures. If you're a human being, you're sexual. How that manifests itself is going to be different for everybody. My younger brother, who has since passed away, was bisexual -- I guess that's the word you're supposed to use -- and then all my other brothers are heterosexual.
When did your brother pass away?
Six years ago. I don't like to guess why some of us are surviving and why some of us are not. Why he's not, I just don't know, but his body just gave out. The drugs stopped working for him at a certain point, and that's just the way that is.
Different people react to different things in very different ways, even if they're close.
Yes, even if you're in the same family. I've talked about that with other people who have siblings that were HIV positive, how we're still alive and they're not. It's not that they did anything that much different than we did, so we just don't know the answer to that.
How has your family handled your brother's passing, knowing that you also have HIV?
I think that the last decade has been a little rougher, because both of our parents are gone now. My brother was the last person in our immediate family that passed away. I think that because we're a fairly close group of people, and we know that death is inevitable for all of us, I think our faith just lets that be what it's supposed to be. We just go on from there.
Would you consider yourself a religious or spiritual person?
I would consider myself a person of faith. [Laughs.] The religion I belong to allows me to come to it as my full self. I belong to a religious denomination called United Church of Christ. I can be a member there exactly as who I am. There's no "don't tell" business going on in that religion or that denomination. [Editor's note: In 2009, Oliver was elected board president for the United Church of Christ's National HIV and AIDS Network (UCAN, Inc.).]
The religion itself is Christianity. I do follow the teachings of Jesus Christ, but then I also like the teachings of Buddha, Muhammad and some other people, too. A little bit of everything, but my ultimate would probably be Jesus Christ, for myself.
That's great, that this denomination is really open to people living with HIV and people of a variety of different identities.
I think it's probably like a lot of societies. Some people struggle with it. Some people are not struggling with it. But there's a medium in there, and this is a fairly safe space. We do have a whole HIV/AIDS ministry at Riverside Church in New York City.
What do you think is the greatest challenge that African-American communities face with regards to HIV/AIDS?
I think that stigma is still a major factor. I think that miseducation about the disease is still a factor. I think those are the two biggest factors. I would say the third factor is that we do know that there are real ways to prevent HIV for yourself as an individual, but I don't think that we teach prevention well enough.
What do you think is the source of that stigma, or the source of that miseducation, in the African-American community specifically?
I think because our African-American community is a smaller construct of the larger community of the United States, and, unfortunately, for several decades we had no national strategy for HIV and AIDS -- although we exported strategies to other countries, we went so long without having one of our own! [Laughs.] To me, there's a whole disconnect for us as an entire community and that only gets magnified when you start to go into smaller minority groups.
I think that in a lot of minority groups -- I'll stick with African American because I work there a little bit more -- we still have some other issues of poverty that impact our ability to do good prevention education.
I don't like to use the word "racism," since I am a believer that we belong to one race -- it's called the human race -- but there's a difference in colorization, which is a little bit different than race itself. There is such a thing as "colorism." I think that sometimes opportunities for medication may be a little non-forthcoming to certain groups. African-American groups may not have the access to them that we do in the larger group, or as easy access, I should say.
Sticking with talking about African-American communities, can you talk a little bit about your experience being a bisexual, or non-heterosexual, man living in the African-American community?
Yes, I can. It's really just terminology, but sometimes, as we're all finding out, words are quite important.
There was a collective group. For a while we were known as homosexuals, if we can use that word. Somewhere along the line came a concept, or a word, called "gay," which encompassed men who sleep with men to a certain extent. But "gay" seems to have its own culture. Even now, someone will ask me, "Are you gay?" and I think to myself, "Well, I use different terminology. I say I'm in a same-gender loving relationship."
I'm a man who sleeps with men, although that doesn't mean that in 10 years, if my partner were to pass away, I might not find a new partner and she might be a female. I don't know how that fits into the word "gay," so that's one of those things where there's not another word for it.
I think what happens in a lot of African-American cultures is there's an impression of what "gay" is; and it may not be the exact same thing as what is lived out day to day. There are some people in African-American cultures of faith that I taught, who are heterosexual, whose whole concept of what gay was was what they saw in a parade that was televised. Then there are some who thought that there were no black people who were gay.
Then there's the procreation piece. There are people who truly believe that if you can't procreate, then there must be something wrong with it.
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The procreation piece goes back to what people say about the Bible and homosexuality, or non-heterosexuality, being an abomination and all that rigmarole. Do you face any of this in your church?
Oh, of course you do! If you're in a church, of course you do! There are Christians on every side of the interpretation of the Bible. The reason I said "if you're in a church" is that, to me, that denotes that you're talking about using the Bible as your guidepost.
There are many on different sides of the interpretation of the entire book. For me, coming up through faith, I was brought up in the Quaker way. The Quaker way was to use the book as a guidebook, but you were supposed to have some conversations about what certain things mean, because what it might mean to me -- what I'm reading -- would not necessarily be the same thing as for the person next to me. But in a lot of other Christian settings, that's not the way that book has been introduced to people. Therefore, people come up with all kinds of different interpretations that are true to them and authentic to them.
Everyone's entitled to their interpretation, whatever that is. But at the end of all of it -- and this is still Christianity for me -- there are three things that we're really asked to do, three articles that we're asked to do as Christians: loving your neighbor as yourself, loving creation, and doing unto others as you'd have them do unto you. I don't want to go into the whole litany, but those are the three things that our leader has said that we're to do.
I always say if those three things are being done, then the rest of it doesn't matter. I apply that to HIV/AIDS, because there's a whole piece about feeding the hungry, clothing the naked, and doing good works for folks. You can fight all day about what you believe interpretations are, but if you're not involved in care at that level, the rest of it, for me, doesn't matter. That's how I look at it.
Going back to relationships, specifically your relationship with your partner: Is your partner HIV positive also?
No, he's HIV negative. There's a name for that kind of relationship, I can't remember what it's called.
A magnetic couple: one positive, one negative?
Serodiscordant or something?
Yes! A serodiscordant couple. How has your sex life changed since you found out you were positive?
It hasn't. He knew that going in, but we know how to protect ourselves. It's been working for more than a decade, so we've been doing the agreed-upon prevention methods if we're having sexual intercourse.
How did having HIV affect your relationships before you were with your current partner?
For me, for that whole period of time after my diagnosis, I wasn't as active. More or less, anyone I was dating needed to know before we were having sex anyway. That was just a cardinal rule.
It was funny because it sort of gave me that group of individuals that, once you told them, were like, "Oh, I don't know if I can do that." It really also let me know that they weren't the person for me anyway.
How do you decide whether to disclose your HIV status, whether it's someone you're just meeting or a potential partner?
That's actually always a good question. What I do is I decide if it's necessary. My first line of defense is: We're all people living with HIV/AIDS -- everybody is, because we live on the planet, so we're always living with HIV/AIDS somewhere around us. The other real question is: Are you infected or affected? I usually leave the conversation there.
I don't disclose that much unless it's really going to be helpful for that person to know. Everyone always asks me, "Oh, you seem to work so much in HIV/AIDS, are you living with HIV/AIDS?" I just say, "We all are." [Laughs.] Then I just give them that whole answer, and then if they really need to know, I'll know in that moment.
Switching gears a bit: You founded an HIV/AIDS organization, but what were you doing before you were diagnosed? You were pretty young, but what sort of work did you do?
Actually, that's what had brought me to New York. I worked in the banking industry. I just did administrative work, and I did that up until I went into my own self-imposed retirement in 1996. I had applied for social security, and that was in the days when people were saying, "Oh, you better apply before they say no." So I did. They actually said yes! [Laughs.] Right away! So I thought, "OK, this will work for a little while."
This was around the time when I had gotten ill, too, so it gave me some time to reflect on what I wanted to do next. I realized that I could probably go back to work full time if I wanted to do that. I really had a conversation with myself and realized that I don't necessarily want to do that. It's not that I just want to sit and watch television all day, or go and take trips and things like that. My next thought was, "What could I do?" The thing that came to me was just being of service to other people living with HIV/AIDS and/or the people that are advocates for them. Is there something in that area I can do? That's how I founded the group that we started.
Conscious Contact of New York, Inc., came about because we saw some gaps in service, around 1998. Because I wasn't working full time, it gave me the ability to work with both the City and State Departments of Health and their prevention planning groups. Some of the things that I saw as a gap in service weren't intentional. It was just that the government can only do so much, and they can't do advocacy. Advocacy groups can do so much stuff, but they can't do some other things.
It's all about communication. There was a need to be able to share upcoming HIV/AIDS educational events across the state. That's what we did. We assembled a few people and we started just posting an HIV/AIDS event that will happen in your area here or this area there. That's what we did and continue to do.
What has doing that work taught you?
It taught me that there is still a lot of secrecy around HIV/AIDS in certain areas of the state. Once you leave New York City -- once you leave Manhattan, for the most part -- you have certain areas where HIV/AIDS is still very, very quiet. Once you get out of the five boroughs, Yonkers and beyond, Long Island and beyond, it's still extremely quiet in the more suburban areas. Every time there's an event, you'll get a lot of people who will turn out that want to hear more about it, but it's not on the daily news every day.
The way that we designed ourselves, so that we wouldn't have to have a lot of salaries involved, is we decided that we would be more bridge-builders between communities and existing organizations. It's just been interesting to work with youth through Planned Parenthood, and we're finding that HIV/AIDS and other STDs [sexually transmitted diseases] are still on the back burner for most communities in New York state.
We've all, as you say, been living with HIV/AIDS for 30 years now. Why do you think there is still this silence and secrecy and quietness around HIV/AIDS?
Here's my cynical side: It's a billion-dollar industry that does not want to be shut down. Therefore, if you don't teach people how to eradicate the disease, then you'll always have the disease, so people will still have jobs, organizations will still exist. There really is money to be made. Research will still go on.
I liken it to polio. At the height of polio, you had what you have now with research and this and that, but once we found a cure, do you see polio offices open anymore? The whole infrastructure is gone.
When you look at it in dollars and cents, it's a billion-dollar business worldwide. _Multi_billion-dollar business, I could say. If you really had a cure -- and not getting infected is a piece of the cure -- and you put that all together for the next generation, all the businesses related to HIV and AIDS would be gone. That's very cynical, but it's one reason.
How do you explain, then, the fact that there's not as much of that silence in cities, as you mentioned before?
I think because in cities, in the five boroughs, you have a little more autonomy speaking about HIV/AIDS. But when you're in a small town area, the moment you talk about it, then it's you whose face is in the newspaper in that area. There's still all this stigma that's attached to it. It's not just from individuals, it's also from institutions. I think that's another piece as to why it's quiet.
Also, it has been 30 years. Some people just want to move on to other issues.
What do you think are the biggest HIV-related issues that need fixing nowadays?
It comes from all different areas, but I do think that at the core of all of it is education about how the disease is prevented and really implementing the education. I think until we do that, we'll still go around in circles about it all the time. I think that we really have to -- and sometimes I don't even want to say the word "educate" anymore. I want to say, "Implement the education that's already out there."
Use the tools that already exist?
Yes. I'll give you an instance: One of the denominations that I work with -- because I work with denominations outside of my own -- they were having their youth summer camp, which draws around 7,000 youth. This is an evangelical denomination. They called us in to help them because this was the first year that they're going to have workshops for the youth -- and when I say youth, I'm talking 13 to 18 -- on sexuality education, and prevention. They called us in to help them create that. Condom use is one preventative method for those who are engaging in sex. Abstinence is another preventative method. There are all these different methods.
They took a vote to let us do the sexuality education, and to do the prevention method about condoms. But their big fear was that they didn't want the families of the youth that were coming to think they were promoting sex. So they decided that we could give all the prevention materials, but we needed to come up with a package that basically had little slips of paper in it that said, "If you were getting this package at a workshop at your church, a condom would be in it. But at this summer camp, we just have these slips for you."
It's always that compromise. Should you give them all the information, or pieces of the information? Some of the kids that are on the planning committee were livid -- not because they were planning on having sex, but they wanted to have the actual condoms so that they could do live demonstrations so kids would know, their peers would know, what this really is. They basically are now saying, "You adults always don't give us all the information. That's why we get in trouble!"
It's always a two-sided thing. For me the issue is because I really do HIV prevention under that comprehensive sexuality education piece. Condoms are a very big piece for us. I can go with this because at least I can say we're getting half the job done.
I say to myself, when it comes to sexuality education, I'm not necessarily teaching you how to have sex -- I think you should be surprised and learn on your own -- but I think you should have all the tools so that you have a point of reference. You'll also know what's good for you and what's not good for you, and all these other things.
When it comes to HIV/AIDS education on the sexuality piece underneath that, I think you should be able to see all the preventative tools -- especially women with female condoms -- so that you know what they are, so that when you choose to engage, you also already know how to protect yourself and it's not an issue. I think it's more detrimental for me as an adult -- or even as a human being -- not to give you all the information so you can make your best choice. When I don't do that, I feel like I've let you down.
You're living with HIV, you have been for 25 years now, and you also work in an HIV organization that you founded. Do you ever just want to say, "No HIV today"? Do you ever get sick of talking about HIV and thinking about HIV all the time?
Oh, I talk HIV all the day! It's funny: It's just a part of me. It's always there -- it's never not there -- but I do have fun and do other things. Every once in a while I get fortunate enough to be able to go on a trip or a vacation where I'm not really talking about HIV/AIDS and I'm not expected to, although it will come up because somebody somewhere will ask me what I do, and I'll say, "Well, I work in disease prevention." They'll ask me, "What does that mean?" and I have to tell them. For me it's not so much of a work part, it's more of a human part, so it's just a part of some of the things that I do. It's just as if somebody asked me about faith. I'm not reluctant to tell, because I'm about what I think. It's just a piece of me. But yes: If I didn't have some other things to talk about, it would become rough.
I'm like everybody else: I like to talk about the price of gas and how I can't afford to do certain things anymore. There are other things I do talk about, so it's not always HIV.
Could you compare how you feel about having HIV now to your feelings when you first learned you were HIV positive?
I can still say I wish I didn't have it. That's still true. As I get older, I wish I didn't have it. But because I do and I've come to learn to live with it, it's just one of those things that I have to monitor, and I just have to be honest with myself and take care of myself to the best of my ability.
But I do view it as a disease, and I think maybe that's been the bigger thing for me. I've never viewed it as anything but a disease. For now, it seems not as scary and a little bit more manageable. I don't know what tomorrow will bring with it, but right now it's manageable.
How do you think having HIV has changed you?
I think it's made me more aware of medical issues that other people have that are non-HIV-related. I have a niece who's had some difficulties in her chest area where she's had to have major surgery on both of her breasts. I think I probably was a little bit more compassionate when she was going through that at the age of 20 than I might have been had I not gone through living with HIV. As a man, I think that's always a little difficult for us. [Laughs.] It sounds a little sexist, but I do believe that women are a little more nurturing than we are. Just a tad bit.
In addition to taking your meds, do you do anything else to keep healthy? Do you stick to a special diet?
This is where my doctor probably would like me to work a little bit more. I probably should exercise a little bit more. I always like to say I'm about 20 pounds overweight. I should probably be at around 200 pounds; I stay around 215 pounds.
I actually really haven't changed my eating habits, because whatever I've been doing for all these years, my cholesterol and everything else seems to be fine. I guess I eat enough fruits and vegetables and drink enough water, but I don't really have a plan of action for it. It's just something that I've always continually done in the same way.
Do you know your CD4 count now and your viral load now?
Yes. CD4 count was 540 at the last visit, and viral load is undetectable.
What advice would you give someone who just found out that he or she is HIV positive?
To understand that it's not the end of the world. Confer with specialists who know a little bit about the disease. Think about what's best for you, but be willing to do it in collaboration with doctors. If you find that you don't like the doctor that you're working with, find another one right away. I think those would be the things that I would say to start to work with.
With that, we've got to bring this interview to a close. Thank you so much for talking to me today! It's been an absolute pleasure, Oliver. Thank you so much.
This transcript has been edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.