This article from This Positive Life by Warren Tong first appeared on TheBody.com here.
How did you find your HIV physician?
The vaccine program that I've been talking about at Vanderbilt, they're really connected with Nashville CARES. As a small business owner, I'd really supported all the events that the organization does every year; I've always been involved in that. I didn't ever think that I'd be a client.
I went over there, and they gave me a list of people; and then I just called around. And I found a doctor. It's been amazing. I think that the physician is kind, is warm, and is also very knowledgeable.
Little things: They said that there's more studies going on about just the neuroscience kind of stuff that goes on with your brain right after you get HIV. I remember during that amount of time, through January and half of February, that there were times I couldn't even remember conversations that I just had. And so there was a short-term memory kind of loss. My physician was able to talk to me about that. Because that's an area where more research is being done. She's always traveling to these conferences, and that sort of thing.
It's been awesome. I have a fantastic doctor! She's understanding, patient, informative, motivating and the best choice for me for treatment. At one of the visits -- you know, when I got to 550 -- I was really aching to discuss treatment. Based on the current numbers, I have made the personal decision not to begin medication -- however, I am also involved in a couple clinical trials that allow me to have access monthly to my viral load and CD4 numbers. Based on this participation and the volume of real-time numbers, I am comfortable making the decision to choose a path that is right for me.
But my hope is that they come out with like a once-a-week kind of pill at some point, because I'm absolutely terrible, even about taking a multivitamin every day. So I've been trying to do better. My physician has given me an exercise, to try to take a multivitamin every day at the same time. She's trying to prep me for when I have to start taking meds. But I'm just hoping that the longer that we wait, as long as my health is OK, or stable, that something new will come out.
How do you think you'll deal with adherence, once you do start treatment?
One thing that I have been real honest about, with all my physicians, is that I am a drinker. I like to have drinks when I go out a couple times a week. I've always been nervous that if I'm supposed to take a pill at 11 and I'm out till 3, whether I'm going to remember when I get home, or when that has to happen. I know there's tons of different little options, and different ways to do it.
But it's just going to be a commitment, once I'm at a position where I need to take medication. I've always been like that. I've never wanted to take any kind of medicine unless I just absolutely had to. But once I'm at that point that I'm going to have to, then it's just going to be a change of priorities. Then I'm just going to make it happen. So I'll probably use every one of those tools.
What do you do to keep healthy?
I eat healthy. I was smoking a pack of cigarettes a day. I've really cut back those. I'm not like a Nazi about it, where I won't ever have a cigarette. I'll have one if I'm out with somebody. But that was really an important discussion with my physician -- that I needed to quit smoking. So that was something that I did. And we discussed openly about me and my drinking. Then they were looking at my blood, and my liver, and making sure everything with that is fine.
Also, knowing when to say no. If I'm tired -- and there were times that, within that six-month period, I was just kind of tired, and worn out from life. Before I was infected, I would just keep going and keep going. I wouldn't really take care of myself in that way. Now I've really learned how to say no. So if I can't do something, or if I just don't feel like it, for whatever reason, then it's a no.
I know everyone says exercising is important. But I'm not someone that is ever going to go to a gym; it's just always awkward for me to go to a gym. So I'll run. Or it's little things. Like, I live on the fifth floor of my condo, and so I don't take the elevator. I do the stairs.
I don't know if that answers your question. But there's no magic thing, I guess. That's what I'm doing. And I feel good. So . . .
That's good. Little tips here and there always help.
Well, I also think that a lot of what I've gone through is mental, you know? I decided how I was going to attack this disease. I decided how I was going to tell people. And I did it on my terms. Little things used to really bother me. I'm one of those people where everything can bother me. But since January 2012 I just don't let that stuff bother me, you know? If I can't change it then I can't worry about it. So I think that's part of it, too.
I've stayed really connected with things that really encourage me. I love Steve Jobs, so I was reading his book and his quotes. Getting involved with other people online through social media, just talking to them or checking up on them, and that sort of thing -- kind of investing, virtually through the Internet, in some other people's lives, to just check up on them and see how they're doing. It kind of took the focus a little bit off me and made it more about, you know, this is a crusade for everyone that is going through this.
A large part of the reason why I feel I'm doing OK is the way that I just decided to think about things and be positive. I've always laughed when everybody says, "Stay positive," because I'm always, like "Well, I am positive." But now I just said it!
Let's talk about your work. What kind of work do you do?
I'm a talent agent. I own a talent agency in Nashville. I deal with actors and hosts, children and their parents, for television, film, commercials, music videos, print jobs, that kind of thing.
How did you become involved in HIV? You mentioned doing prevention work before your diagnosis. How did you become involved in HIV activism?
Someone doing outreach about the HIV vaccine program approached me at an event at a bar. I really wanted to do it. Before that, there was a well-known female impersonator in town that passed away, and her name was Bianca. Mark Middleton was his name, and the personality was Bianca.
But she was HIV-positive and she was very, very vocal about prevention and the disease. When she passed away, I got my company involved with her memorial. Doing that really got me connected with people that were very sincere and honest and hardworking, when it came to activism and awareness. That's kind of how it started.
And then at one of those events, I saw information about the vaccine study. They said that they needed HIV-negative people that had sex with guys. And in my way, I was thinking, oh, this is so fantastic. This is my way to give back. So I got involved with the study.
From there I started doing some outreaches with them, looking for other volunteers. But I'm actually really glad that I got involved with the vaccine. I want to say this, because some people may wonder: With the HIV vaccine being studied, obviously, it's not a live virus. There's zero chance to get HIV from the vaccine. The way that I got HIV, even though I was in the vaccine study, was because I was exposed to it.
But once I got involved with that, and then Nashville CARES, and helping them raise funds and that sort of thing, I really fell in love with it. Whether people think that it's God or another power or whatever, I really think that it was orchestrated at the right time. Because I really got passionate about it at the same time that it happened to me.
I'd thought I was invincible. Other people have told me that, specifically: "Josh, we never thought this would happen to you. If it can happen to you, then it can happen to me." And that's kind of been their attitude -- which was surprising at first. But when I sat back and thought about it, it's absolutely true. I felt invincible. And so all of that year that I was involved in prevention and activism and that kind of stuff, it really prepared me to be able to tell my story and, now, raise money.
The last couple months I've been involved with some amazing fundraising people. And I'm proud. We've raised a lot of money in the past couple months for Nashville CARES.
Do you ever get sick of thinking or talking about HIV, or do you think you will?
I think I did. I went through a month in the beginning, to be honest, where every week I was doing something related to HIV or awareness or a doctor's office or something. And so in May of last year I kind of got a little tired. And so I just kind of stepped back a little bit. I didn't post any blog, and kind of stayed off Twitter, and even my Facebook.
Now, looking back at that, it was fine for me. It was a little selfish, I guess. What I'm doing is -- and what we're talking about, all of us -- is so much bigger than any individual person or any of our individual stories. We've just got to keep going and keep talking about it. Because the more we talk about it, the easier it becomes to be talked about.
What do you think are the biggest issues that need fixing in HIV today?
One, I think that HIV is not a "one disease fits all." I think there are regional things to think about. I think that people that live out West, in San Francisco, potentially deal with different issues than someone with HIV in Tennessee. I think that that needs to be approached.
After the pastor wrote me that unpleasant email, it really started making me think, why in the South are we having an epidemic, but we also have the highest number of churches? So there's a tremendous opportunity that is being missed in churches with a captive crowd, if you say, to talk about HIV or STDs [sexually transmitted diseases], or any of that. Some churches are against contraceptives or prevention, I guess. My church that I grew up in wasn't. They were OK with birth control and condoms. But they never talked about sex or disease, or any of that.
And so I think the first thing is to look regionally, maybe, at potential issues. And that's what I've been kind of looking at. I can't speak for anyone else in the country, except, you know, Nashville, or the South, really. Here, the stigma is very strong, still. And I was nervous about that.
Because we're not talking about it enough, in my opinion, in the South -- HIV and prevention and even early on in schools, besides mixed in with every other STD that you can get -- what I think that it's doing is that it's making it harder to talk about later. When I was growing up, I don't really ever remember talking about HIV or STDs, beyond the one day in health class.
And the way to combat stigma: I was sitting in a group therapy, right after I was infected. Maybe I was a little bit green, and maybe the gentlemen that were in there who have had HIV for years, maybe they were a little bit jaded. But in that group therapy that I was in we talked about stigma. And they kept bringing up stigma, that it's so terrible and hard.
And then I just asked a simple question, but it really was a little bit of an epiphany to me before I released my blog. They said the stigma was so bad. And so my follow-up was, well, what have you guys done to combat it? What have you done to fix it? And almost everyone in the room said that they hadn't told anyone that they had HIV. Again, understand some people -- maybe a majority of people -- can't disclose it. I get it. With me, I could.
What was just an epiphany to me: The only way to attack stigma is to talk about HIV, and to talk about it in its face, and show that it's OK. And so those two things, the regional thing and really just keep on talking about HIV, because by doing that, it will become a little more accepted -- not accepted that you want to get it, or that it's OK that people have HIV, but that it's not a death sentence, and that we're not the scum of the earth because we have HIV.
Could you compare how you felt about having HIV when you were first diagnosed, as opposed to now? How has it changed?
I think it has changed. Right after I found out, I was very scared of what people would think. I knew that it wasn't a death sentence and that I would get on the medicine and that though my life expectancy may be shorter than if I was negative, that I would live a long, great life. But I was scared about if someone would love me, and I was scared about what people would say about me.
Right after that, I made a decision that if someone wouldn't love me romantically because of that, that I was OK with that. And I really meant that. I would rather talk about it, about this disease, and attack the stigma, than worry if someone is going to love me, or want to be with me the rest of my life. Because I will be fine.
But coming now, several months later, I respect and I understand the disease a lot more. So my attitude toward that has changed. The thoughts that have started going through my mind now are, you know, disclosure. Why is disclosing or not a criminal act? My mind has just started going down that road. It's not something that I'm going to focus on, but it's just starting to get into the sub-issues; after you get over the big issue of having HIV, it's just how to live with it, you know? Knowing when or not to disclose, or why people choose not to.
But I'm not scared for my life like I was right after I found out that I was positive.
How do you think having HIV has changed you?
It has made relationships that I have with people, in general, more important. It's humbled me tremendously. I mean, I was a cocky bastard. Last year and before that, I was a talent agent and was cocky, and cared less about people and more about myself. This disease really humbled me. I couldn't think of anything worse than contracting HIV, before I contracted it. That was the worst thing in my mind that could happen to me, as a gay man. And then when it happened, it was very humbling.
It was humbling to know that I had to reach out to people to help me, that I needed to go to a therapist and that I needed some of those services that Nashville CARES has provided, that I have supported for years but never thought I would use. So it was humbling, in that aspect.
The other thing is that -- and I don't know if you've heard this before, or what -- but after I found out that I was HIV positive, it made my life a lot richer. Things that don't matter do not matter. Little things don't make me go crazy like they used to. Relationships mean the world to me. My family: It got me even closer to them. So in a weird way it kind of refocused my life into being better.
It's really hard to explain and put that to words, but my life is totally different, in the way that I look at people and relationships; and how I even look at myself is a lot different. I mean, it took a while for me to really be OK with looking at myself in the mirror right after I found out that I was positive. I'm OK with that now. And I feel good about myself.
What advice would you give to someone else who has just found out they are positive?
If they just found out that they're positive: One, that they are the exact same person they were the hour, the day, the year before they found out that they were positive. That they are still them. Now they just have something that is going to make them choose relationships more carefully and, really, how things are going to be valued.
The one suggestion that I would give is find at least one person that you feel that you can trust, and tell them. Don't try to do this by yourself. Whether it's a therapist, or somebody that truly loves you in this moment. Try to find at least one person to tell that you're positive.
Get online, create an anonymous Twitter account, and find other people like me that are able to talk about it, that you can communicate with, and that it's safe. If you email me anonymously then I'm going to respond. And I won't know who you are but you at least start that chat.
Read TheBody.com. Gosh, I've spent hours on the website. Learn as much as you can about HIV.
But the main thing is that you're still you and that the way that you think about yourself is as important as getting treatment for the disease.
Do you have any closing thoughts, or any takeaway messages you want to relay?
Yeah. First, thank you so much for asking me to just chat with you. Everyone knows their own personal story of the moment they found out that they were positive; and maybe they even have stories like mine, where they know the person that infected them, or that exposed them.
But what you guys are doing is simply amazing. And I know that the three weeks when I was not sure if I was positive or not, I did more research than I'd ever done about HIV. And it's websites like you guys' that I came to, and that I learned the information. And I heard other stories, and I was reading about people. And so, thank you. You know? You helped me tons.
That makes me feel very proud. Thank you for the kind words!
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