December 3, 2010
Welcome to This Positive Life! We have with us James Bender. In the late '80s, James, a heterosexual former Navy soldier living in rural Mississippi, believed what most Americans thought at that time: HIV was a gay white male disease. But James tested positive in the summer of 1987, and he quickly realized that this epidemic affected everyone. Instead of choosing to live in silence about his status, he decided to speak out and educate his community. This father and AIDS advocate talks candidly to us about the difficulty of being one of the first African-American men to test positive in his county; the stigma and discrimination facing people living with HIV in the South; and why he never grows tired of talking about HIV.
Let's start from the beginning. When did you find out you were HIV positive?
Aug. 15, 1987.
And so when were you tested? Why did you decide to get tested?
Well, I became sick with a fever of 100-plus for about two weeks, and it never would break. So I went to the doctor. And they ran a series of tests on me for about three weeks, and finally, they asked me: Could they do an HIV test?
And what did you say?
"Sure, I guess."
Did you think you were at risk?
I knew something was wrong, but I didn't know what. With the way my body was feeling, I said, "Why not?"
And so you got the results, and they said, "OK, James. You have HIV." What did you think?
Well, the first thing that hit my mind was: "Why me?" But then I thought about it: "Why not me?" Again, I thought about the lifestyle that I lived before. So it made me think.
What were the things that you were doing?
Well, I was very promiscuous. Sex -- I was having unprotected sex with women, and some of them were one-night stands. Some of them, I never saw again.
So you weren't too surprised. So you identify; you're a heterosexual man.
The way that the media talks about HIV, it doesn't necessarily include straight men in that conversation, especially during the time that you tested positive. So did you even think that straight men could even contract HIV?
Well, no. Because, like you were saying, when it was in the early years, they were saying it was a white, gay, male disease. So I knew I wasn't gay; and I wasn't white...
So you thought you were OK.
What did you do after your diagnosis?
Well, I went and took an HIV/AIDS 101 class, educated myself. And then I just started educating people around me.
Were you depressed initially? Sad?
Yeah. I stayed depressed, probably, for a couple months. Then I decided that I'd get educated; I could either fight the disease, or let it take me out. And I decided to fight it.
So were you just scared, "I'm going to die? There's nothing I can do."
No, not really. Getting that diagnosis made me discover my faith, and then I just turned it over to God. It was another three years before I started medication.
So you took AZT?
I took AZT in the '90s. I started in '90 and took it till '95, when it gave me neuropathy so bad.
So when you were diagnosed, who did you disclose to?
Well, no, because I told everybody.
You told everybody. And you lived at this point where? In Mississippi?
I lived in the Deep South, near Hattiesburg, which was a very country-like town. And I was probably one of the first blacks to test positive there. And it was kind of hard at first. But then I had to fight a lot of discrimination and I had a lot of adversity.
In what way? What discrimination did you have to deal with?
I saw how my ancestors felt. But I felt like nobody wanted to be around me. People, when I'd go to their house, you could smell the Clorox. Or, where everybody else got china, I got a paper plate.
They were afraid.
Right. Because they weren't educated, but once I educated them, it changed.
This was '87, Deep South. Stigma central. How did you even have the courage to be able to educate people?
Well, I promised my dad. I told him what had happened and he said, "Well son, [you need to] educate yourself so you can educate others so they won't have to go through what you went through." That was probably the driving force, because I definitely wanted to learn more about it because I was living with it. I needed to know how to take care of myself. When I was diagnosed, they gave me three years. Of course, that was 23 years ago.
How old were you when you were diagnosed?
Twenty-seven. There were others who were diagnosed with me back in those days; but it's only a few of us left now. So it's a blessing to be here this long.
When you told your family, what did they say?
Well, my dad was open. But my mom was, well you know how mothers are. She wanted to know how and why, who, and all of this, which, I didn't know at the time. Four of my sisters out of the five wanted to shun away from me. They didn't want me to talk about it and didn't want people to know. But I had a sister who worked in a hospital with AIDS patients. So she helped me educate the family. And eventually, they came around. Some of them came around four or five years later, but they eventually came around.
So, when you were diagnosed, you were pretty sick.
What's your health been since then?
Oh, it's been great since then. Once I got over the pneumocystis pneumonia I got better. It took me about four or five months to get over the pneumonia, but once I got over the pneumonia and I started gaining more weight, I got a lot better. I started taking better care of myself, getting my rest and I watched what I was eating. At that time, I was eating anything.
Right. Living on a farm, so I was eating good every day. So I started to watch what I was eating. I was always active, so I was always exercising. So it made me get more serious about my exercising. And I changed my lifestyle, because that was a must.
So, now you're still on your medication?
How do you make sure you adhere to your medication?
Well, I set myself on a timer. When I get up in the morning, I take them. I can take the Combivir and Kaletra on an empty stomach. Then I eat my breakfast. Then, before I eat supper, I take them again, or after -- about an hour after I eat supper. So I take them in the morning when I get up, and then at night when I go to bed.
Has it been hard for you to take your medication? In the beginning was it harder? Or were you just, like, "I want to live and I'll just take them."
Well, I knew that I had seen so many people that started on their meds and stopped, and then they didn't make it. So I think that was the adhering part for me. I had a good doctor, and she told me, "If you've got a problem, call me." So that helped.
And some of the meds I did go on didn't agree with me. So I went to her and she'd change it. I didn't stop on my own, though. Because when I started she told me, "Once you stop, you're making your body, uh . . ."
". . . resist the meds." So I listened to her.
How helpful has your doctor been? A lot of people have said that they feel like they don't have any power. Sometimes they feel the doctors don't listen.
No. When I went to my doctor, she told me that she really didn't know a whole lot about HIV, because it was new -- that we could learn together. And that's what we did. We both learned from each other.
Let's go back just a little bit, to 1987. People even now don't want to talk about HIV; but definitely, back then, people didn't like talking about it. You spoke out. What was the reaction from people in your community?
Oh, yeah. I got asked that a lot. Well, even today, people don't believe in HIV. Because they say, "You look so good." I say, "Yeah. That's why I'm telling people. You can look good, and you can feel good, but still be infected." And that's why I tell them they should go get tested -- not only for HIV, but other STDs and high blood pressure, diabetes and high cholesterol. That's why I tell people: "Go to the doctor at least once a year and get a physical, and get a blood test."
And so you started speaking out and started doing AIDS work. What kind of work were you doing? Were you part of an organization back then? Or did you just educate people all on your own?
A little of both. I did some church groups. I was going and talking to church groups, especially young people. And also, during the day, I was a volunteer at the American Red Cross for over 20 years doing HIV/AIDS safety classes.
What were people's responses? Were most of the people receptive to what you were saying?
Some of them were shocked. Some shunned away. Some didn't want to hear it.. But some of the congregations I went to, it had already affected their congregation. Some churches invited me, instead of me having to go and find them.
How has HIV affected your romantic relationships with women?
Well, I think even after I tell them, a lot of them still want me. But I kind of shun away from them now. Because I don't want to cause anyone else to go through what I had to go through, even though there's protection. But I don't trust protection like I did in the early years. Some women could be allergic to the latex, or the reaction that it can cause, or the chances that it may tear or break.
But you are dating? Aren't you? You're engaged.
Right. I'm engaged.
What did she say when you told her that you were positive?
She was very open to it. And she said, "Well, I don't know that much about it, but you can teach me and I'm willing to learn. I don't care about you being positive." And that meant a lot to hear that from her. In the past, a lot of women have told me the same thing and didn't really mean it. They were only out for what they could get.
Over the eight years that we have been together, she has proven that she's there for me. I think that's what helped me -- to get some of the stress off of me and made me feel loved. So that helped a lot.
Did you feel unloved for a little while?
Oh, yeah; probably for about 15 years. I could tell they didn't want me around by their actions, even though they didn't say it. But you could tell by their body signs that they didn't want you there. And you could feel the hostility in the room.
And these were people you were dating or just people in general?
These were people who were supposed to have been my friends.
But you're not friends with them anymore, are you?
Oh, yeah. I didn't hold judgment against them, because I figured one day that they would understand. And now they are starting to come around. They have talked to me years later and said they just didn't know how to deal with it -- HIV was new back then. And remember we are living in a rural town in Mississippi. Like I said, I was the first one in my area to test positive for HIV. Of course, then that came up about three or four, a couple of months later. And then they kind of did open up a little bit.
People were afraid. People still are afraid.
Do you have any children?
Tell me about your child.
I have a daughter who is also positive. We have a great relationship; we talk pretty regularly.
Did you know that you had a daughter before?
No. No. She was about 22 years old when I found out I had a daughter. And I had been positive 21 years. So that's how I . . .
You did the math.
Right, I did the math. But despite not knowing her all these years, she and I have a great relationship. Even though we're miles apart, we still have a great relationship.
Tell me the story behind that. Do you remember her mother?
No. Not at all.
And how did your daughter find out about you?
Through the Web, the Internet. It's a good thing.
And is her mother alive?
She passed away.
She died of complications to AIDS.
When was that?
It had to be in the early '90s.
So a couple of years after you were diagnosed, she passed away, you think?
Yeah, somewhere in there, '91 or '92.
Why did she never tell you about your daughter?
I guess because she didn't know how to -- it was a one-night stand and I wasn't from her town. And like I said: I was a ladies' man. I guess you could say, being an ex-Navy guy. Women like men in uniforms. I don't think she knew she was probably infected herself, either.
So you think you contracted HIV from her?
And so your daughter contacted you. Were you absolutely shocked?
No, because of my lifestyle. Because, you know, I didn't know what I left in these different states or countries, because I was out there.
And so how has she dealt with her diagnosis?
She's done great and I'm proud of her. She works with other young people. And so it makes me feel good to know that she's out there, doing the same kind of work. And we can have not only that bond, but we have a father-daughter bond.
Let's talk about the work that you do. Before you were diagnosed with HIV, you worked. You worked as a . . . ?
A landscaper. I was in the military for four years, in the Navy.
And so once you were diagnosed, you started doing HIV work. What exactly do you do?
I work for the Campaign to End AIDS, which is AIDS Action in Mississippi. We are a grassroots AIDS advocacy group. We are the voice in the community for people that live with HIV. We go to different state legislatures, city government officials and other government and speak on the behalf of the community. We are their voice. If they're scared to speak out, we go speak for them. We teach them how to go and advocate on their own behalf as well.
And how does working there make you feel?
Well, it makes me feel good to know that I'm helping somebody, or I'm their voice, when that person is scared to speak out.
Do you find that there are a lot of people who are positive in your area that are afraid to speak out?
Oh, yes. I see it quite regularly.
What are some of the reasons that they are so afraid?
The stigma and discrimination that are affiliated with the disease; they don't want to be stereotyped; and they feel that their family may shun away from them, or their friends may not want to be around them. Some of them may be in an abusive relationship, and don't want their partner . . .
. . . to lash out at them.
Do you ever get sick of talking about HIV?
Never. I guess because, like I said earlier, I don't want to see anyone else go through what I went through in the early years, especially with the AZT being the only drug at that time or some of the stigma I experienced. I didn't want to see nobody else go through it.
How many friends have you lost over the years?
Oh, hundreds of them.
How does that make you feel?
Well, it hurts, but then it lets me know I've got more work to do. And I can't give up. The fight must go on.
What are some of the difficulties that you face doing HIV/AIDS work in your area, in Mississippi?
Stigma is the biggest issue. That's the biggest issue -- the stigma and discrimination that goes along with the disease. Even though I'm a heterosexual and tell people that, they don't hear that part. They associate it with being gay. Because when it was first out, it was a gay disease. So they automatically assume that you're gay because you're HIV positive.
Do you think that people don't have sympathy for people who are living with HIV?
No. I think it's just the stigma that people have put around it, the different communities -- especially in faith-based organizations. I see more stigma in the churches and in the school systems than I do anywhere else. But I found out you can get more support out of the community than out of the faith-based community, or out of the school system.
You said that you speak to the state legislature. What are some of the things that policy makers just don't understand about HIV?
A lot of them don't understand that we need more money for drugs, because the drugs are expensive. We need more health care legislation. We need laws that protect us against different kinds of criminal acts of discrimination. Because, especially in Mississippi, we've seen a lot of discrimination. So we push for different legislation, for civil rights because people's civil rights are being violated.
Just this year, we had an incident in one of the county schools, where they didn't want this young lady to bring her date to the prom because they were the same sex. And it stirred up a lot of stink. But I understand they got the issue solved.
Do you think that being HIV positive has made you more accepting of other people?
Oh, yes. It changed my outlook on life. It made me look at people as human beings, and we're all created equally, and that God doesn't love one more than He does the other. And it taught me to be nonjudgmental. Whatever that person does, you still meet them where they are at.
Would you say that prior to having HIV you were homophobic?
Oh, yes. I was very homophobic before, but the Lord opened my eyes. He came to me one night in a dream and said, "I don't love this person no more than I love you. I love all of y'all the same. And one is no more than the other one. We are all my children."
To me, that made me open my eyes up, to see that we're all created equal. No one is worth more than the other one.
In what other ways has HIV changed you?
It opened up my eyes to see that there's more to life than just out there having a good time. And it made me realize that everybody doesn't see you as the person you really are; they're looking at the disease. So it made me open up my eyes and see that the people you'd think would care didn't care. Open up your eyes to let you know you have to be careful, and you have to watch the people you're around, because you don't know what they may try to do. It makes you be more aware of what's going around in your surroundings.
What advice would you give to people who have found out that they're positive?
I would tell them, "I made it. You can make it. It all depends on your attitude." First, you've got to have a positive and a good attitude. And you've got to want to live. And, yes, you're going to have some days where you don't want to do certain things, but do the best you can and educate yourself.
You know, I tell them where they can go to a support group. I can refer them to care. I can refer them to a support service. And then I also tell them what I do. And I tell them, you know, to deal with the denial as quick as they can. The quicker they come out of denial . . . you know, even though they've got the disease, they can still live with it.
What do you think are the biggest issues that we're facing in HIV today?
In Mississippi, housing is one. Stigma, discrimination, and better access to care are some other issues. Because there are a lot of people who are homeless or who do not have access to care. And they are scared to go to the doctors, or scared to go to their local Health Department, fearing that somebody may find out and put the word out, you know.
Afraid they're going to lose their job . . .
Jobs. Yeah. Are they going to lose their spouse? So, discrimination is, I think, or the stigma, is the biggest issue, along with housing.
How long do you see yourself doing this work?
Until the day I die. Because I live and I breathe HIV. I mean, as long as I got breath in my body to fight, I see myself fighting.
And with that, we have to bring this interview to a close. It's been such a pleasure. Thank you for taking the time to speak with me today.
This transcript has been lightly edited for clarity.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.