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Tell us a little about your life.
I have lived my whole life in Washington, D.C. My partner died three years ago next month. I have no biological children, though I do have a godson whom I've helped raise since birth.
I have an eclectic community, which I love. It is males and females, predominately African American, but I have Latino, white and Asian friends. We always talk about creating heaven on earth, and we do it. I'm not waiting to die to go to heaven. I don't wait for your birthday to let you know I love you. I will give you something just because. I'm really interested in my friends, and I let them know that. We do not operate out of fear or jealousy. We're able to be excited for each other if we accomplish something, like buying a car or a house.
I am a bishop of the Inner Light Ministries, which celebrates at St. Stephen's Episcopal Church in Washington, D.C. I preach what we call "the radical inclusiveness of Jesus Christ" -- seeing Jesus as a radical person who did not differentiate or segregate, who had women and children around him, who touched everyone, from the haves to the have-nots.
What did you want to be when you were a kid?
It's interesting that I ended up in ministry, because that was not on the plate when I was young. In my early years, I wanted to be a sports player, like many kids. I soon discovered, as good as I thought I was, I wasn't going to make pro basketball. So I became a professional watcher. I also studied tae kwon do from the age of 14. I was rated in the top ten in the country in the '70s. So my goal was to become an instructor. I was on the first U.S. team that went to Korea for the world championships and was a silver medalist. Somewhere in the middle of my training, I started practicing yoga, and studying theosophy and spiritual science, which led me into ministry. I was ordained in 1982.
What kind of work have you done?
First, I was a steam fitter -- air-conditioning and heating work. I did construction -- I was in the union, Local 602. Then I went back to school. I studied business and psychology. From there, I managed a club here in the District [of Columbia] called the Club House. It was a large dance club that held about 1,200, but we had no alcohol. The police raided us and never found anything. This policeman looked at me and said, "You've got to be doing something illegal for people to come line up outside like this when you don't have any alcohol." I said, "We're dancing away the frustration of people like you who mess with us all week long." I formed Us Helping Us in 1985, when AIDS was beginning to hit. I have been in ministry and HIV advocacy ever since.
What kind of work did your parents do?
My parents separated when I was very young. My mother worked in the District government, doing mostly office work. My father worked for Amtrak, either as a porter or a cleaner.
Who have been the most influential people in your life?
My mother and grandmother, my martial arts teacher, Master Kim, and my yoga teacher, Harihari Harnande, from India. A couple of schoolteachers really inspired me too. I read Gandhi and Dr. King a lot -- what inspired them to continue.
What do you do in your spare time?
Sleep! No ... I play African drums. It's a way of letting go of everything. I'm actually learning to quilt! I'm making a pattern of my own. I was inspired when I went to a quilt exhibition and then saw this special about the quilting bees, women who have been quilting since they were children, down in North Carolina. I also love different types of music -- jazz, classical. One of my favorite groups is Sweet Honey In the Rock, an a cappella female group.
How did you find out you were HIV positive?
I got tested in 1985 because my partner was having complications, and I was having night sweats, and I knew the signs.
What were your feelings when you were first diagnosed?
Back in the '80s, you were told you had three to five years to live. It was overwhelming, but something in me knew I could beat it.
What advice would you offer someone who has just tested positive?
First, look around and see that people are living well with HIV. Then take your time to educate yourself about the virus, your health, and treatment options -- separate the facts from your fears. Definitely get a basic understanding of what your viral load and T-count are.
I know someone who was ready to go on meds and his CD4 counts were 900, which is as high as a healthy uninfected person's. I said, "What are you going on meds for?" He said his doctor wanted him to, and he agreed out of fear and ignorance. I said, "You need to find someone who specializes in HIV." He asked me to go tell that to his doctor, and I said, "Sure."
The best thing is to talk to other people who have HIV, and find a doctor who is an HIV specialist. And take care of yourself.
What conditions in your life put you at risk for getting infected with HIV?
Back in the early '80s, no one knew what was going on. It was the beginning of the pandemic. We just knew that people were getting sick, usually with pneumonia or Kaposi's sarcoma cancer (KS). At first, people thought it was a gay white man's disease. If you were African American, you didn't pay much attention. But people I knew said, "Listen, if it's a virus, then it doesn't care which race or gender you are."
As for how I got infected -- well, I always hesitate on that, for this reason: People put it in a good or bad category. If I got it by an accidental needle prick, that's good. If I got it through injecting drugs, that's not so good. But I say there is no good or bad category. I got infected through sex. Most of my friends, even back then, said, "But you didn't do anything wrong!" You only need that one time of making contact with HIV to get infected.
How has HIV changed you?
I've always lived pretty boldly, with a strong and positive outlook. For me, HIV makes me make every day count. But HIV, like any fatal illness, makes you stop and evaluate where you are, what you have accomplished, what you still need to do.
When did you first realize that you were an African American?
I was raised with a strong sense of being African American. My mother, uncles and family were proud to be African Americans. It was never about hating another race -- it was about being proud of yours. My mother, who had a high school education, was always one to point out African-American accomplishments. Racism back then was very strong. She would always have us walk tall, and when we were talking to people, look them straight in the eye. When we were kids, she'd say, "Remember, you're Omi's child; you can do anything." (Omi was her first name.) When people would ask me, "Why do you think you can do that?" I would say, "Because I'm Omi's child." It gave me a lot of pride.
To what extent have you experienced racism in your life? How have you learned to deal with it?
Very much, especially when I was younger. My mother prepared us for it, and said, "Just expect it and know it's going to happen, but don't let it stop you."
In high school I had a white geography teacher. One day he said, "Do you know why African Americans have larger butts than white men?" And we all looked at him like, "What?" He said, "Because you came from the ape, and white people are more evolved, so the structure of the body is different in whites than in blacks." I just got up and walked right to the principal's office, and said, "We have a problem." Half the class had walked out into the hall. The teacher got suspended, because all the students were in an uproar, and people's parents were calling. He was trying to explain his way out of it. It was messy.
And I will never forget the summer when I was 19 years old. I was walking with a friend downtown, trying to get a job. A white policeman stopped us on a curb full of people and goes, "Hold it right there." My friend and I were looking around like, "Who is he talking to?" He said, "Nigger, you." It was like, "Did he just call me a nigger?" We looked at him and my friend and I stepped out into the street to stop traffic. I said, "I don't know what's going on, but please somebody witness this, because he's about to hurt us." He called "Officer in trouble." Police came from everywhere. They had us on the ground, in handcuffs, and thrown in the police van. We kept asking, "What did we do?" They never answered us. At the station, when they were booking us, I said, "Can somebody tell us, what did we do? Are we under arrest? We've been fingerprinted, what's going on?" They said, "You have the right to remain silent," and read us our rights. Finally they came up with "You fit the description of somebody."
When we were walking out of that precinct, a police car rolled up beside us, very slowly. I stopped and closed my eyes because I could feel myself getting angry, but my mother always said, "Don't fight 'em back." I said, "Can I help you?" And he said, "You're being smart." They got out of the car, and I pulled everything out of my pockets and leaned up against the car. He said, "So where you comin' from?" I said, "Jail." He said, "Are you being smart?" I gave him the paper and said, "Here it is." You can understand, at 19, what that was doing to my head.
Some racism is blatant -- some is subtle. But I was blessed by being in sports and martial arts, which put me around a lot of tolerant people. And my mother used to say, "You are as good as anyone."
What is the biggest challenge facing African Americans today in terms of HIV?
Part of it is still taking the stigma out of it. In some areas of the country, it is still access to medications. But overall it's battling the internalized oppression of African Americans. In this country we think racism, sexism, homophobia, and all the other "isms" have in some way disappeared, which is a lie. It's not an even playing field.
I know this from a personal experience. I was wearing my coat and scarf over my clerical collar, and I got on the elevator with a white woman. Her body language really changed -- she grabbed her purse a little closer. I could tell that she still didn't trust me. Here I am, with a degree in divinity and an honorary degree and all, and that attitude still follows me. Then I opened up my scarf and coat, and she spoke to me.
What HIV risk factors are of special concern to African Americans?
I don't think you can compartmentalize it like that. You have to give a person a reason to live. When I work with a group, I ask them, "What is your vision? Where do you want to be?" If people feel like, "I'm going to be dead soon, so why worry about using a condom?" or "Nobody wants to touch me," or "I'm ashamed of being HIV positive because I am a gay man or I've used drugs." If they don't have a healthy outlook on life in the beginning, HIV is just another part of the burden. I think HIV needs to be looked at as part of a person's whole life.
Are there any specific aspects of African American culture or identity that give you strength?
Being with family is really important. That extended black family structure helps. Religion plays an important part. But even as a minister, I have to say, the black church started a lot of judgmental attitudes toward people with HIV. In the beginning, the messages in churches were: "This is a sin, you're going to go to hell, you need to repent." Back then, my message was always, "Tell me, when did Jesus ever ask somebody, 'How did you get sick?'" He never did. It's a lot better now, because organizations like Balm in Gilead [an African-American AIDS organization promoting HIV awareness in faith-based communities worldwide] are working with churches to get them past the fear and homophobia. There are churches that have the attitude, "If you have AIDS you can come, but you are going to have to repent and confess that you are no longer a homosexual before you can have services here." What kind of message is that? The church has to own that they damaged people's self-esteem and say publicly, "We gotta let that go. We're sorry. We made a mistake." But some don't want to.
How do you address the HIV epidemic in your own church?
We do HIV testing right at church, and we put out information and condoms on the tables, but we do it in an age-appropriate way. When it's all adults, I talk very open and frank about it. Most HIV-positive people in my church feel comfortable enough to say it openly. People ask me if we have an AIDS ministry, and I usually say, "No. Just like we don't have a cancer or a lupus or a toenail-hang ministry -- we have a health ministry, and AIDS is part of that."
How have other church leaders reacted to your work?
Most have had a very good response to my work. In the '80s it was a struggle to get into churches. We used to call it "Going in the back door." We tried to get invited to the health ministry's health fair, or to talk to the women's auxiliary, or the pastor. Now many denominations have AIDS ministries. I just got a call to go up to Pennsylvania 'cause they want me to come and speak. It has changed a lot, but we still have some churches to wrestle with.
What is the biggest change you'd like to see in HIV treatment, prevention, or education care for African Americans?
We have to come up with more creative ways of getting information and life-training programs out there. The government has to be willing to put money back into HIV education, and it has to be divided into two categories: people who are newly infected and people who are long-term. I think their needs have been neglected. We have to give them a reason to live, give life-skills training, so they can go back to work. If you're on disability, home all day, you don't have any self-esteem. It's about lifting a person up.
What do you find particularly difficult as an AIDS advocate?
What's most frustrating for me today, as much information and advertisement as we have about HIV, people are still getting infected. Back in the '80s, we understood that people didn't have the information. But today, in 2006, when everyone knows about HIV and people are still getting infected, there's something wrong.
Part of it is the messages are still wrong. When AIDS started to be known as a chronic, manageable disease, it took the urgency out of the prevention message. People became more relaxed and thought, "Well, I can just take some pills, and I'll be okay." I keep reminding people, "This is not a club you're trying to join. People are still dying from this." You can ask any doctor how many people have a virus that is resistant to all the medications. All the doctors can do is watch the energy drain out of their patients because there are no other treatments for them.
How would you grade Bush's performance on fighting HIV?
Very poor. The urgency, in the government too, has gone down. This administration has done a really bad job of fighting the AIDS epidemic. When was the last time you heard this president say the word "HIV" or "AIDS?" There's no feeling from government officials that that there's a need to take action.
You hear them talk about AIDS in Africa. Yes, we should do something for Africa because we have a bad record there. Look at what we've taken out of Africa, and what we've given back. It's important to give aid to Africa, but also to concentrate efforts at home.
We suddenly found billions of dollars to fund the war in Iraq, but we couldn't find $1 billion to put into health care for Americans who need it. Once somebody asked me, "How would you find money for universal health care, where anybody can go to any hospital for free?" I said, "Easy, it would be like a yard sale -- for an aircraft carrier, a B2 bomber. We can raise some money real quick."
What are some of the main myths about HIV that you hear in your community?
We still have people who don't know exactly how you catch HIV. Somebody just told me he went to a family reunion, and he realized they were giving him plastic plates and forks. At first he was offended, but then he took a moment to educate. Actually, it was his mother who went up to them and said, "Listen, if you could catch HIV from using the same dishes, I would have been sick a long time ago. Stop this madness."
Many communities still have this fear because the images in their heads are of an ill person dying with AIDS, with sores all over them, hair falling out. But today, you can't tell who is or isn't HIV positive by looking at them.
But the biggest myth is that there's a cure. Part of it is that the drugs are good -- part of it is that people aren't dying the way they used to. When Magic Johnson -- or his wife -- made the statement that he was "cured," people misinterpreted it. It took a long time for people to realize it wasn't literally true, even though he's come back in the media again and again to say that what he meant was that he was on HIV medication and it had reduced the amount of virus in his blood to undetectable. A lot of people grabbed onto that scientific information and spun it into a belief that there was a cure -- and that if you have the right money, there's a cure out there.
What are your hopes for the next generation of African Americans as they face the risks of HIV?
One, that we become educated enough to truly bring this epidemic to a halt. We have all the information so that the next generation should be clear and free. That's the hope; that's dreaming.
The reality is, as long as people don't have self-worth, they're not going to look after themselves and each other. The great divide in this country now, I would say, is not so much race, as it is class. Look at New Orleans after Hurricane Katrina. Look at Washington, D.C. The Bush administration is creating more divide than ever between the haves and have-nots. If I'm trying to figure out how to pay the rent, how to eat, how to get a promotion, using a condom doesn't come high on the list.
Is the state of HIV treatment any better than that of HIV prevention?
In the early days it was poor. Now, because of programs in major cities, like Washington D.C., the treatment is good -- there's been a lot of advocacy work to make sure it's here. But in rural areas, you still have a problem. I met a nurse who works in rural Pennsylvania who told me, "I drive five miles to go see this one, three miles to see that one, and 10 miles to that one." I said, "Why don't you just have a central place?" She said, "You need to understand: Here, everybody knows everybody, and everybody's scared to say it." So there's still stigma. In rural areas they're fighting to get funding for care and services, because the way they need to do things is very different -- it doesn't fit the urban cookie-cutter mold.
What has been your experience with HIV treatment?
I've been hospitalized three times. In the beginning, I thought that my good treatment was standard. Finally somebody said, "Rainey, no. It's because of who you are. When your name showed up, there were so many people hand-walking your files through. That's how you got through so fast." And I said, "Are you sure?" They said, "We're positive."
As far as the drugs themselves, I have been pretty blessed. There have been a couple I could not deal with, which caused diarrhea or rashes. I take a holistic approach to HIV. My doctors know that I will come off meds when I need to. Two years ago, I just said, "Nope." I started back at the end of last year.
Do you have a particular health regimen that helps you stay well?
Yes, it's important. I take the stress out of my life. I joke, "Everything I do has a T-cell value. If the meter reads more than five T-cells, I can't do it -- it's too big a sacrifice." I keep a sense of humor about this. I eat right, exercise. I don't smoke; I drink occasionally, usually a glass of wine.
How did you choose your doctor?
I interviewed him. I started getting referrals several years ago, when I needed a new doctor. When I choose a doctor, I want to know if we're on the same page because I use different methods -- acupuncture, massage, herbs and vitamins. I want them to understand these too. My doctor and I have a very open communication. I tell him everything I'm doing, he tells me why he's doing what he's doing, and we juggle it out. Everything comes down to me making the final decision. He told me, "If all my people were as conscious about this as you, I wouldn't have any problems."
I believe you have to be proactive. It's your health. One of the things HIV has done is changed the doctor-patient relationship from "I'm the doctor, I'm going to tell you what to do" to people asking, "Why are we doing that?"
Is your doctor African American?
Do you feel African-American doctors understand African-American patients better?
Not necessarily. Sometimes it makes you feel more comfortable to relate to another African American who's familiar with things in the community. But I had a doctor 10 years ago who was white and Jewish, and we had a great time, laughed and joked. He took a very holistic approach to things -- he wanted to know who you were, and took the time to talk to you.
Do you participate in an AIDS organization? Has it been helpful in improving your health?
I founded Us Helping Us in 1985. It's still one of the largest AIDS organizations in Washington, D.C. I don't do particular work with them at this time. I go in for special occasions. I help different organizations when they call me, and I work through my church.
How have your relationships with family and friends changed since you were diagnosed?
My relationships are good. I didn't hide anything. I told them when I found out, when I was in the hospital. It's important to build a support system around you before you get sick. If you got sick right now, you should know you could call one person, and they know everybody to call. Don't assume family and friends will not love you. Most of the time, you will be quite surprised -- they come around and are there for you. If they're not, it's better to find out while you're healthy, than when you're ill. I tell people, "Take the power out of a secret: Tell it."
How do you decide whether to disclose your HIV status to someone?
I think you have to look at each person you tell on an individual basis: How important is that person in your life, how close are they to you? I'm a public person, so I've told it in magazines, newspapers, on TV. But that's not for everybody. Even when I speak to people now, I still sometimes get a little nervous. It's still like having to come out again when I'm standing in front of people saying I'm HIV positive. You have to begin to find those one or two whom you can tell, so it takes some of the anxiety out of it. If it's a really close person, you need to tell it, get it out of the way, and have faith that they can handle it.
What is the best response you have ever gotten from telling someone?
The best responses were times when I was ill. People showed up that I didn't expect to, just to be with me. I've been blessed with that. I've had people drive hundreds of miles to see me. I've been home and a friend came to me and said, "I want a set of keys to your house." And I said, "For what?" He said, "So that I can get in." And he just took over, and I sat back and laughed.
Also, I've had people come to say thank you because they've heard me speak, or watched me go through it.
What is the worst response?
The worst responses were in early days when people got judgmental. I knew they were just venting, and I was able to stand there and let them get it out of their system, which most people have a hard time doing.
I was speaking at one event, and a guy stood up and pointed his finger at me like he had a gun, squeezing the trigger, and waved at me to come outside. After I had finished speaking and greeting people, I went outside and stood across the street. My attitude was, I would die standing, but I wouldn't run and hide.
You still have people with negative responses. I've been blessed not to have it much because I'm very clear: If you want to judge me, then let's open up the doors, let's see what you're doing. I believe in the scriptures, which say, "Love God with all your heart, soul, and mind. And love your neighbor as you love yourself." It didn't say love your neighbor if they're HIV negative, or love your neighbor if they're straight. It just says, "Love your neighbor."
Also, a doctor told me in 1990, the first time I was hospitalized, "You will never walk again. You won't see Christmas." I said, "Who told you that?" He said, "That's my professional opinion." "Then I'm safe," I said, "because you can be wrong." He said, "I've seen this a hundred times before." I said, "I'm a hundred and one. I'm the one you haven't seen, and I'm telling you, I will walk." It wasn't easy. I struggled; I forced myself to get up. I had people hold me up, and let me wiggle, but be there to catch me if I fell.
Where do you think you get that strength?
Two places. One, my mother and grandmother were two very determined black women. Two, I started training in martial arts when I was 14 in a very traditional way with a Korean instructor. The mind-set was: You do not let anything defeat you. I studied meditation and yoga, which gave me inner strength to visualize and accomplish my goal. I would visualize myself standing and walking, just like when I was in a martial arts competition I saw myself going through and winning. Every time I stood up or took a step, I would go, "I win." Building that kind of attitude gets you through. And having strong faith is majorly important for me.
Where do you go for support?
I consciously work at having a strong support system around me. Church is part of it. I'm tight with my ministerial staff. People in my congregation, we're very open with each other. I have other friends, even out of state, and once in a while we call and talk to each other. I have one friend who's positive and also a therapist. We call each other up and go to lunch, and talk. Sometimes it's to vent, sometimes just to be in each other's presence.
Also, having a personal connection to God gets me through everything. When I see somebody who's been healed, I know I can be too. I call it obvious God. I tell people, "Look for God everywhere." I'm healed because God loves me, not because God is trying to punish me. That is how I am able to continue the journey, because I know that love will sustain me.
Do you feel accepted as a person with HIV?
How has your sex life changed since you became positive?
I don't know if it changed because I turned positive -- or I got older. No, just kidding. Even as public as I am, I have to go through making sure a person understands that I'm positive.
Do you have a policy about if or when you tell a sex partner that you're positive?
I tell early in the game. I don't believe in "We're going to be safe, and then I'm going to tell you." I like being in relationships -- I'm one of those hopeless romantics. My partner died three years ago, and I've just started dating again. Sex for me is a very small, but important, part of a relationship. I need to find out if I can connect with you emotionally, mentally, and spiritually. Do I like you in the morning? Do I want to go out with you? Those things are important to me before we get to sex.
Do you feel that if you practice safe sex, it's necessary to tell a sex partner that you are positive?
For me, yes. Some people think if it's just casual sex, and you're being safe, you don't really have to tell this person. I think it's a personal call. The most important thing is that you practice safe sex.
Did you make any New Year's resolutions?
No, I try to keep three projects in front of me, but no more. I put my deadlines on getting those three accomplished. They usually have long ranges, like the end of the year. When I finish one, or nearly finish, then I pick up one more.
What's the biggest adventure you've ever had?
I would say meditating in the pyramids of Egypt. And competing in the World Championships in Seoul, Korea, in tae kwon do. I was cocaptain of the team -- that was great. Winning Madison Square Garden, and hearing 20,000 people screaming at me -- that was exciting.
If you were granted one wish, what would it be?
I think my wish would be that all of humanity was able to rise to their highest level and see each other for who we truly are.
What books, movies or TV shows have had a big influence on you?
I am a PBS specialist. I like the Discovery Channel because it wakes you up to different parts of the world. I just finished writing a book!
What's the title?
Right now it is Reclaiming Your Divine Birthright. Hopefully that'll be coming out soon. But other than that, I unplug. When you live an intense life, it's important to make quiet time. I tell people, "Praying is talking to God and meditating is like listening to God -- sometimes you gotta be quiet so you can hear."
Anything else you'd like The Body's readers to know about you?
I enjoy life, I'm curious and I love people. If you love people, you will respect them -- and if you love life, you will protect it. If we learn to take care of our own lives, and be happy, that's going to create joy everywhere we go. Enjoy this life!
For more on Bishop Cheeks' ministry, see www.portofharlem.net/newsinnerlightministries.html.