What was your linkage to care like once you found out that you were positive?
I had the best doctor, ever, may he rest in peace: Dr. Robert Scott. He passed away in '09. But he told me the first time I went to see him -- because I'd gotten an earlier prognosis from a doctor who was kind of fresh into HIV care, at a general kind of hospital setting, that if I didn't get on some medication really quick because I had a super-virus, that I wasn't going to be here in another year or two. So that was a little scary. My first T cell count was 192; so I was below 200.
So you must have been living with this disease a lot longer than you thought.
Well, no. Because my last negative test was in December '97. So that's why they projected that it was probably a super-virus, because you don't progress from a negative test result to 192 T cells in a year and a half. So they were concerned. That's why he said, "Well, you know, obviously if you've got a virus that's progressed at that rate, you've got to get something done fast."
But I think Dr. Scott approached me from a very different space. He was a same-gender-loving doctor, physician. That was helpful. Because on the other side of the industry there was somebody I could relate to who knew his stuff, but who also talked with me with compassion, who told me there was nothing wrong or bad about sex. He'd always ask me, "You got a boyfriend yet?" And I just did not expect that in a care setting. I expected to encounter some of the same shame and sort of being shameful about situations. And he just totally made it a comfortable place, and really helped build me back up.
Once I had started to feel good about myself again, my health got better. And so that was really; that's a big part of the health piece that I don't think people talk about ... is how when you don't feel good about yourself, you're not going to adhere; you're not going to take your medication on time; you're going to skip doses. You're going to get caught up in other behaviors and cofactors, like alcohol and drug abuse, that make it really challenging.
I think my primary care physician is a big part of why I'm still here. He told me at the first visit; he said, "Let's look at it this way. This is the worst your health is ever going to be." And I believed him. And that's been true. Like, I have not ... that 192 has gone up to as high as 1,200, and is now at 800; so I've never, you know ... And it's because, it's primarily because I believe I'm worth it. There's a lot more work for me to do.
Yeah. So let's talk about your music. Let's talk about some of the books. And let's talk about some of the activism that you've done.
Definitely. Back in, I think it was, 2005, we started what was called Brave Soul Collective, which was a kind of grassroots art ... artists who are using the arts to effect change around HIV/AIDS. And that was already in line with what I'd been doing. I had already been a part of a rap group called DDC, which was a pioneering queer hip-hop group, and so I had already started doing music. My first book, Red Dirt Revival, was kind of the book ... when I put that book together, I didn't expect to be here. This was kind of: this is going to be the book I go out on, and so I'm going to tell everything; I'm going to be honest; I'm going to be transparent; I'm going to talk about the real issues.
I put the book out, and my health got a lot better.
So you had gotten sick during this time?
It was just not ... I hadn't received the results of being certain that the disease was going ... I was taking Crixivan; that drug made me sick. It was improving my stats but I was not feeling well a lot of the time. And so I just wasn't sure. And so I wrote that book in that period of uncertainty.
I had seen my mentors -- Marlon Riggs, Essex Hemphill, all these other men that I admired and was drawn to, late '80s, early '90s -- they were all gone. Like, all of my direct mentors, many of my direct mentors, had passed on from HIV. So I was, in some way, even though I wanted to believe Dr. Scott; I was preparing: well, if I do go out of here, what's the message I want to leave behind?
But that incited a level of bravery with my creative projects that I wouldn't have had. I probably would have been in hiding to some degree. I'd always considered myself fairly out.
Out in what way? As same-gender-loving? Or out as HIV positive?
Same-gender-loving is odd for me, because I'm both-gender-loving. I'm gay identified, but not gay, if that makes sense. I say that because I don't run from the gay label. It's not something I'm ashamed of. But it's also a little dishonest of me. And it brings about a shame about the relationships I've had with women if I just claim to be gay and I don't acknowledge my sexuality. So in more recent years, I've been saying gay identified, or that I'm bisexual.
But, yeah. But even that is sort of a, you know ... how do you go out of one closet and back in another? And so dealing with HIV was, yeah, it was another closet. Do I stay and hide it, or do I decide to just be out and transparent about my status?
But, yeah. The book was ... the book was kind of a tell-all. You know, I remember the day it came out and I just remember being, like, "Wow, it's out there." And people know things that happened to me. I talked about being molested as a kid, which men don't talk about. I talked about domestic violence in my home, and how it implicated family members. My mom, my dad, who've since kind of reconciled around the truth of that story, have been working towards really having a good, honest, real relationship with one another.
But it really took some rough stuff to come out, and let's work through this. So, let's not pretend. Let's do the work. Let's not pretend that certain things didn't happen growing up.
Working with black MSM, what have been some major issues that you've seen around prevention and condom use?
There's a disjunction between the number of people who are infected in the black MSM community and the shame that exists, and the shaming that exists, in the community. For example, that people even still whisper and chat and say negative things about people being sick in a club -- where probably a third of the people are HIV positive ...
So you're saying there's even AIDS phobia within a gay context?
Oh, there's huge AIDS phobia within the black gay culture. And it's ironic because there are so many people who are infected. And oftentimes that AIDS phobia is internalized. So you have people that are positive that are saying negative things about people who are also positive. Because, again, it sort of pushes the speculation maybe away from them.
In being visible and out, it's been good pressure. I think I'm always very cognizant about appearing or looking healthy, so people that follow my little Facebook workouts and the exercise ... that's not just about vanity and, like, I just want to show my pictures. It's like, no; like, I work out. And there is that pressure to present this healthy body that's not Magic Johnson. I'm not Magic Johnson status; I'm Tim'm West. So it's a little bit different. I think people can relate a little more. They connect. I've had positive guys go, "I'm going to start working out again."
And I think that's good. You know, like, taking control over your health and your body, and using it as a motivation to be strong. So I think that's been a good thing, in terms of the way that my family has reacted to it. They're still working through some of the sexuality stuff. Like, you know, I think it's easier when I'm single, and I have been for a few years now. I think when I've been partnered, you know, they have to deal with sexuality in a very different way.
And I think just the connection between ... there's a relationship between the homophobia in the black community and the crisis in the black community. You know, we still fail to talk very honestly about HIV/AIDS. Even my sisters, and women, you know, talking about ... real conversations about sexuality, and bisexuality in men.
I've had conversations with women I've dated: "Don't you just -- shouldn't you just -- pick a side?" I'm like, "That's not the way sexuality works. It's not a pick-a-side issue."
Right. It's a spectrum.
It's a spectrum. And, you know, I had this one woman say to me, "Well, you know, if you're dating me then you have double the options!"
I'm like, "We're in a monogamous dating situation. I didn't think I had any options." You know. But there are a lot of associations, or a lot of conversations about black bisexual men, in particular, as DL, as vampires, as hiding. They're gonna get you! And it's created this big rift between black men and women. You know, men who are often infected, some of whom may have led bisexual lives before, and there's almost like, well, who are they? Like, who are these bad people that we need to get?
Mm-hmm. "We need to snuff them out."
Let's have an honest conversation that not everybody's straight, and not everybody's gay, and that there's a space in between that, that because we're not talking about it honestly, we don't create healthy spaces to work together to get at the epidemic. And that's not the only way people are getting HIV; let's talk about women taking more control over their bodies and protecting themselves first, as opposed to leaving it to the man to protect them. But there are just so many things that need to be opened up.
I'm encouraged by some of the conversations I've had. I'm encouraged that women have started to join the fight. It's a little bit unsettling that it happened more so when they started to see their numbers come up.