I'd like to ask you a few questions about African-American identity and being HIV positive. When did you first realize that you were African American?
[Laughs.] My mother had said about the people that I hung with that weren't people of color, that I would ... find out that there's a difference between me and the people I hang with. I was like, "Oh, OK."
Then I watched something on TV, many years ago. It was on PBS, channel 13, about -- I can't remember the name of it, but it had to do with the Civil Rights movement. It kind of brought it to me. I always knew I was a person of color, but it never really dawned on me until seeing the struggle that people of color went through. I see me. I see color, but I see me.
How old were you when you were watching that program and had that revelation?
I must have been about 10 or 11 years old.
Have you experienced racism? How have you learned to deal with that?
I experience racism in so many ways that I just come to a point now in my life where I don't let it have any power over me. I don't try to acknowledge it. I don't try to feed into it. It can just drag you in some many ways, and I've come too far to let a simple word like "nigger" tear me down and deter me from my goals. But it happens. It's an everyday thing sometimes. Sometimes I don't pay it no mind because it can happen every day if I look for it.
For instance, you give somebody money, and you give them money in their hand. They give you back the change and they put it on the counter. To me that's very disrespectful, and that says a lot. Sometimes I'm on a line to get on a plane or waiting on line for something and someone will just cut right in front of me and turn around and say, "Oh, I'm sorry, were you waiting in line here?" Like I'm invisible. First off, I want to say something derogatory, but no, I don't worry about it.
I say, "Yes, I was standing here. I was waiting in line. You didn't see me?"
"Oh, I didn't even see you."
I'm like, "OK," and I don't even feed into it. It's like being an invisible person, but I don't let it have power over me. I don't let the negativity have power over me.
Do you think racism for you is compounded by being HIV positive and being a gay man?
In certain ways, yes. In certain ways, no. Being a person of color is one thing. Being HIV positive and people knowing that you're positive, some people tend to be real vicious and rude. I had an experience in the hospital where I was born in and [then later] diagnosed in. They treated me in a way that made me think, "Is this because of my status, or is this because of my status and because I'm black?" I didn't even get treated. I just walked out of the hospital. I got information so I could file a complaint. I filed a complaint. I said, "They treated me so bad!" I didn't feel that good, but I just had to get the information and go about my business and get treated somewhere else.
Was that the end of it?
What I did is got onto one of local news stations here and pleaded my case. After that happened, the hospital sent me a letter. "Blah. Blah. Blah." Apologizing. "Blah. Blah. Blah." They were worried I was going to sue them. I said it's not about suing; I'm talking about the principle. That they did this to me, that they did this to somebody else. It doesn't matter about your status -- if they have cancer, diabetes or any other type of illness, they were discriminating. I said, "I'm going to stand up and hold them accountable for what they did." So I did. I got a letter of apology, and that's all I wanted. I moved on.
It's a good way to educate people, too.
What would you say is the biggest challenge facing the black community today, in terms of HIV?
I would say ignorance and lack of education.
What can be done? How can this be changed?
I think people need to try to open their minds up and try to understand. In the black community there seems to be more emphasis on people's sexuality than anything else. If we could just get past people's sexuality, that's a start. Then from there, people open their minds and grasp the information and knowledge: managing your health care, knowing your body, not waiting until the last minute to get tested or to go the hospital. A lot of the black people that I know, especially gay men of color, wait until the last minute, until they're sick, to go to the hospital. By then it's sometimes too late. Some of my friends waited that long and they never made it. They went to the hospital and never came out. [I try to tell people that they should] be able to not wait that long. I tell people to stop being afraid of the doctors and being afraid of the health care system that may help the black community.
Are there any specific aspects of African-American identity or culture that give you strength?
Yes, the family. My family and my faith in my higher power. I could say God. I could say Jesus. I could say Buddha. They're all the same -- my higher power. For me, without faith, without family -- God bless them! -- without them, I wouldn't be talking to you right now. [Laughs.]
What church do you go to? What does your spiritual practice look like?
I was baptized Catholic. I'm currently a member of an Episcopalian church. I don't attend regularly, but I do attend and I do sing in the choir when I go. It's an older congregation, but my family has a lot of history in that church. Three or four generations of our family have been going to the church.
What would you say is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans? If you had an unlimited amount of money to help the black community with HIV, what would you do with it?
I would really emphasize education and help bring education in the church. If you want to get to some people in the African American community, the church is the main way of doing it. A lot of good things can begin there, and a lot of things cannot be done there. If I had resources, I would emphasize education, education, education.
Do you yourself ever do programming in churches?
Yes, I have.
How has that been? How have you been received?
The first time I spoke in my church this was maybe nine years after I was diagnosed, I finally came to the church. It was World AIDS Day or Balm in Gilead. My mother was singing in one of the churches, and so she said, "Would you mind talking about HIV?"
I said, "Sure."
So I got up there. First I was talking about me. What I went through, blah, blah, blah. That I was HIV positive and yadda, yadda, yadda. I've been positive for this amount of time. What I do in the community. This and that. After I finished with that, you could hear a pin drop. Nobody even budged. [Laughs.] So I went on. I kind of got a little angry. I blasted them, saying how they needed to get involved in the community and how black women [are being affected], the infection rate and this and that. People sitting here twiddling their thumbs is not helping anything. We need to help each other out. We need to educate the community we're in. It's not just young people. It's not just homosexuals. It's not just Latinos. It's black people, white people. It's older people. The congregation there is mainly 65 and older, so that really kind of shook them. Then they all started to move. They all clapped and everything like that. It was a breakthrough for me and for them.
Afterwards they asked me so many questions. I had a poster with me because I did a poster with the Department of Public Health and the Concerned Citizens for Humanity -- HIV Plus Working to Make a Difference. I put a poster there in the church, and they were like, "Wow! You do so much in the community. We didn't know." It opened up another door for people to start the dialogue about HIV and the things that I do. Now my mother has gotten involved in the HIV community and works with people over 50. It worked out pretty good.
Do you think that young people face particular challenges in the black community as far as HIV is concerned?
They do. I even run a youth group called Wise Step in New Haven [Connecticut] in the City Hall every Thursday night. Sometimes we have up to twelve kids, maybe six kids at the least. Those kids, every time I talk to them about HIV/AIDS, they always have a different response. We have different kids that come. The myths that are still out there! There's so much that needs to be done. These kids believe that HIV came from a prostitute in Africa. When I hear that I'm like, "Wow." I'm reeducating them about what's going on, giving them the facts. Then they run them back to me. There are so many myths and there's so much peer pressure. There's so much misinformation about STDs [sexually transmitted diseases] and HIV. It really scares me.
The kids that come to the youth group, they're really on point about modes of transmission and things, but I'm always drilling them about this stuff over and over again. They're appreciative. I've had kids come and show me what they know. I'm so proud of my kids. You should see what my kids do.
I always emphasize their self-worth. You've got to respect your body. You can't depend on somebody to protect your body. There are people out there -- you don't know what they got. They might not even know what they have. You need to be responsible for your own body and your own well-being. That's what I'm always pounding into their head. They're getting it. Slowly but surely, they're getting it.
As you're working with these young people, what are your fears and hopes for the next generation of African-American youth as they face the risk of HIV?
My fear is that they're going to forget about their self-worth and put their life into anybody's hands. My hope is that they understand how much they're worth, and how important it is not to just have sex with anybody. When you have sex with one person and they had sex with ten people, you had sex with just about the whole block. I want them to realize that they're worth something and that there is more to life then sleeping around.
How did you come to understand the importance of educating yourself around healthcare as related to HIV?
I was educating myself to get the best health care I could get. I had a couple of problems with health care providers. I went through at least five doctors before I found the best health care providers, but that's just me ... wanting to get the best care.
Why did you go through five health care providers before you found you found your present provider?
Well, the doctor I had when I was first diagnosed told me I had three months to live and that's the way the cookie crumbles. I said, "You're telling me I have three months to live and that's what that is and there's nothing you can do for me and that's the way the cookie crumbles!" I really got upset, and I ... kind of blew up at him and told him, "I'm going to prove you wrong!"
And I did, because I'm still here. It's almost 20 years later. Actually, 12 years later, after I got diagnosed from him. From there I was still seeing him two years later. He was diagnosed with cancer. He turned around and he came to me and he apologized to me because he was in a spot; he wasn't well with his own self and he didn't mean to reflect that on me, project that on me. I said, "I knew there was something going on. That it wasn't just me, that I was diagnosed with AIDS and I had three months to live and that's the way the cookie crumbles." From there I moved on to a couple of other doctors that really didn't have good bedside manners. They just felt like they were God, telling me what to do and how to do it. They could only help me when I tell them. I tried to tell them everything I possibly can, being a patient. They told me I don't know my own body. I said, "OK, enough of you. I'm moving right along."
How did you choose your current doctor?
The current doctor that I have, I was referred to ... through a nurse practitioner who was with me for a couple of years and ended up moving on. She referred me to this specialist to give me the best care, God forbid, because when it comes to me and doctors, I'm my own doctor. I believe the doctor is the doctor, but the doctor only can do so much. He'll only treat me the best when I tell him how my body feels, what my body is like. I don't know if I explained that right.
No, that makes sense. I assume you are seeing an HIV specialist now.
How has that been? Do you feel like you're getting the best possible care now?
When I first met him, he was one of those doctors that came off like, "I know everything and I'm God."
I had to say, "Whoa!" I had to give him a piece of me, and then we came to a middle ground there. We work good with each other.
Do you feel like you're an equal partner in your medical care?
That's great. Would you be willing to share the name of the doctor or the name of the hospital or clinic you go to for our readers?
The doctor's name is Dr. David Mobo, and the clinic that he is affiliated with is Bridgeport Community Health Center.
Thank you. How has your health been? It's been a while since you were diagnosed. When you were diagnosed your T cells were really, really low. What happened after that? Did you get on meds? Did you bounce right back?
After I was diagnosed and I came out of the hospital I immediately went on meds, like the salvage therapy. I was taking a ton of meds, a ton of them. Fortunately, I did pretty well with the meds I was taking.
I had some problems because when I first started taking them they were trying to give me Retrovir [zidovudine, AZT], and I did not want to take AZT. I did not want to take it at all.
Because of my partner's passing -- at that time when he was passing, the only drug available was AZT. The more he took it, the worse he got. That was just my observation. I may have been wrong, but that was just my observation, that it didn't really help him. He may have been too far gone. It just didn't seem like it helped him any. Then there's the saying in the black community that AZT is made to kill black people. Between that and everything else and not knowing what the drug was or how it worked, there was a lot of fear, and I was kind of really against it. I fought that for maybe a couple of months, until somebody told me: either you take it, or your other option is you just die. That kind of ... made it real to me. I took it under duress, but I took it. After a while something new came out so they changed my regimen. I was on a real strict regimen for a good six years before I changed my meds again.
So when you got out of the hospital, they put you on salvage therapy, you were taking a whole lot of pills. Salvage usually describes someone who is resistant to a whole lot of HIV meds. Was that your case? Were you diagnosed with a resistant strain of HIV?
Not that I know of, but I know that I had full-blown AIDS. I shouldn't have used the term salvage. They had to give me a high dose of medicine to make sure to bring my stats up to par, to try to save me, put it that way.
So I was taking Norvir [ritonavir]. I was taking, my God, six 100 mg pills of Norvir twice a day. I can't even remember. I think that all together I was taking 26, 27 pills a day.
Yeah. [Laughing.] It was a lot. That doesn't even include the stuff for nausea and the stuff like that. That diarrhea. Ugh! That was my best friend, me and my commode. Really, they gave me a lot of pills, and as they changed my pills, my regimen got smaller and smaller and smaller. As the pills started coming out and the new therapies started coming along, I was taking less and less. Now I'm down to four pills a day.
What are you taking?
Well, let's see. I'm still taking one Norvir once a day and I take ... Goodness, I'm drawing blanks.
That's OK. You can always let me know later. Do you know what your CD4 count and your viral load count are now?
My CD4 count is 900, and my viral load count is under 50, which is undetectable.
Thank you. I worked hard.
You mentioned that at one point you went on a treatment interruption. What was that all about?
I went on a treatment interruption because my doctor and I were at odds over changing my meds. I kind of felt toxic in my body. I just needed a break. The doctor said, "No, no, no. Keep on taking them."
I said, "I know my body. I'll take the rap for it all. I'll take the consequence for it, but I need to detox my body for a minute." I could just feel my body was not feeling right. I always depend on my body to tell me what's going on, so with that I stopped taking my regimen for about two months. Then they came up with a new therapy, and I'm back on track again.