Table of Contents
This interview has been altered from its original format. Statements have been re-ordered for clarity, with permission of the interviewee.
How did you find out you were HIV positive?
I had gone in for routine testing at the Montrose Clinic in Houston, where I was working at the time as an HIV case manager, in 1995. I am 44 years old now, and it's been almost 11 years since my diagnosis. I had not prepared myself for a possible positive test result, so, needless to say, I was shocked! It was a difficult adjustment in the beginning, but I think I've adjusted pretty well. It was helpful that I worked in the field and had lots of folks around me giving me information and holding my hand.
How long do you think it takes to process a diagnosis?
I needed a good three years to actively process the diagnosis. Actively processing a diagnosis means finding a good therapist, joining a support group, or talking with family and friends. People should do whatever is comfortable for them, but not talking about it is not an option! If you don't talk to anyone about it, you'll suffer for it.
My diagnosis was especially difficult for me because I worked in HIV services at the time and I had to deal with a lot of self-imposed shame and guilt about "knowing better." It wasn't until I saw a guy on the cover of POZ magazine several years ago talking about getting HIV while working as an HIV prevention counselor that I realized that I didn't have to be ashamed. I've since seen the story of HIV service professionals contracting HIV being told over and over again (just recently here at The Body). Nobody has to feel ashamed.
How did you get HIV?
When people ask me how I got HIV, my usual response is that, "I got it by being a human doing human things." The question implies that you did something bad and therefore deserved to get HIV. People do not usually ask, "How did you get your cancer?" The truth of the matter is that everyone who acquires HIV got it by being human -- period.
How has HIV changed you?
I think living with HIV has made me more focused. I went back to school and got the two master's degrees that I wanted (in social work and public health) at the University of Washington. I also started traveling more internationally and have practically been around the world. My travels have taken me to some very exciting places including Brazil, Botswana, South Africa, Australia, Peru, The Netherlands and Canada. One of my most favorite places to go is Vancouver, British Columbia. I am lucky to live so close to what I consider the most beautiful city in North America. I've even developed a group of friends there. Life is good. I just stopped putting things off. I focus my time and energy on a few friends and avoid people that drain my energy.
What advice would you give someone who has just found out they are positive?
My advice to people who have just been diagnosed is to be good to yourself for a while. If you are getting high and drinking a lot, it's time to stop, because you'll die faster if you don't. Get a good support system together through family, friends or wherever you can find them. Learn as much as you can about the disease.
Tell us a little about your life.
I grew up in a small all-black town called Boley, Oklahoma. It was a great place to grow up, because it provided a sense of safety and racial pride. We were allowed to roam about freely as children, because crime was virtually non-existent and there were always other adults in the community providing a watchful eye. This town started as a racial experiment in the early 1900's and was established to prove that blacks could govern themselves. It was a very successful town, and its unique environment was the source of racial pride. It still exists today.
I am the youngest of three siblings. I have one brother and one sister, and lost another brother when I was younger. I left Boley to attend Oklahoma State University. When I graduated with a bachelor's degree in economics, I moved to Houston, Texas.
I moved to Houston seeking job opportunities and hoping to become part of a large gay and lesbian community to further develop my own sexual identity. I lived in Houston for nine years and eventually moved to Seattle, [Washington], where I reside currently. I was unable to get into graduate programs in Houston, so I moved to Seattle where I was accepted into a graduate program at the University of Washington.
I am currently single and live alone in my newly purchased Seattle condo.
I do not have any children. I am in regular contact with my family by phone, and I try to get to family events (i.e., graduations, holidays, reunions, etc.) as often as possible. I am usually the organizer for family reunions that take place every year.
What do you do for work?
I work as an engagement and adherence specialist for African Americans living with HIV/AIDS at a large public clinic. I also provide consultant services to a local faith-based organization by teaching clinicians and community members skills for providing HIV-related services to African Americans. I serve as vice-chair for the Washington State Governor's Advisory Council on HIV/AIDS. We meet every other month and provide advice to our governor on HIV/AIDS policy matters. I have been serving in this capacity for almost seven years under two different governors.
What do you do in your spare time?
In my spare time, I do remodeling work in my condo, I travel, I bike and I spend time with friends.
Are you a religious or spiritual person? Do you attend a church?
I do not consider myself a religious person, but a spiritual person. I was never able to connect with traditional religions because of the negative messages that so many of them teach. I was led to my current spiritual practices as a result of my own drug and alcohol recovery. I've been clean and sober for over 20 years and learned spiritual practices through 12-Step programs. I've also been exploring Buddhist teachings. I find that spiritual practices need not be elaborate nor guilt based to be effective. I've found so much happiness through my own simplicity, which I never found in any religion.
When did you first realize that you were African American?
The town where I grew up helped to shape my identity as an African American by instilling in me black culture. So, when I left home to attend college, all of a sudden I became a minority because I was at a state university with very few black students.
How have you learned to deal with racism?
Over time, as I became more educated and enlightened, I began to understand racism. I dealt with racism by ignoring it. As I've aged, I deal with racism by continuing to talk about it and point it out when I see it. I also learn to deal with it by associating myself with other enlightened people for support.
I've been working in the field of HIV for almost 15 years now, focusing most of my work on programs for African Americans. It's a terrible injustice that blacks only represent about five percent of the physicians in the U.S. We have good treatments and good prevention methods, but they don't always seem like they are being delivered in an appropriate manner for African Americans. I think having more African Americans in the field is one way to address health disparities, although it has to be a multidimensional approach.
How can we encourage more African Americans to practice HIV medicine?
Getting more African Americans to practice HIV medicine has to start with the medical schools. They need programs to attract black students and provide them with the funding to attend medical school. Once there, they can expose them to different medical specialties, including infectious diseases.
What is the biggest challenge facing African Americans today in terms of HIV?
The biggest challenges facing African Americans today in terms of HIV include poverty, racism and denial. These are formidable challenges that really have nothing to do with HIV. Additionally, the local challenge is that the majority of HIV cases are among gay white men, which overshadows the disproportionate impact [of HIV] on African Americans. There are only a few black folks that serve on the local HIV boards and committees, and I have often been the only black person at the table. I get frustrated sometimes because I get the impression that no one is paying me any attention. Despite my frustrations, I keep doing it because I am able to see how my work really does make a difference.
What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?
My fear for the next generation of African Americans as they face the risks of HIV is that they will become complacent. Many are growing up in a good time where we have good treatments for HIV. They have missed the opportunity to see their friends and family dropping like flies to this disease. That's a good thing, that they don't have to witness that, but not seeing it can also make you complacent. I hope that the next generation can stay motivated to demand the services and resources that our community desperately needs.
What do you think about our government's response to HIV? How would you grade its performance?
I am very disappointed by the Bush Administration's lack of support for HIV. [President Bush] gives the impression that he's more concerned about HIV in other countries, but he hasn't really done much there either. I'd give him a D. Congress deserves a D for stalling on the Ryan White [CARE] Act reauthorization.
How has your health been since you were diagnosed?
My health has been excellent since my diagnosis in 1995. I haven't had any HIV-related illnesses. I was living a fairly healthy lifestyle before my diagnosis, and it continues today. I started HIV medications about six months after diagnosis and took them for about five years. Then I was off for about four years. Now, for the last year, I've been back on -- what I think is -- my third combination.
What medications are you taking now?
What motivated you to stop and restart your medications?
I started medications early, because the belief was to "hit early and hit hard." All along, my CD4s had been pretty steady and my viral load had been undetectable. So, I asked my doctor, "How do we know that my immune system is not keeping the virus at bay?" I hadn't really been off of medications since I was infected. [He answered] that the only way to know was to stop taking medications. So I did, with his guidance. I restarted four years later, because my percentages were trending downward.
How did you choose your current doctor?
I'm a part of an HMO [health maintenance organization], and I requested the HIV specialist as my primary care provider. Working in the field of HIV affords me the opportunity to have firsthand knowledge about HIV specialists.
Do you think you are getting the best care possible?
I feel like I get the care I need. I think my doctor has gone to bat for me to get the medications that I need, since HMOs have formularies.
Is your doctor an African American?
My first HIV specialist was black, but that was back in Houston. My current doctor is white. I feel like we are partners in terms of making medical decisions.
Do you have a particular health regimen that helps you stay well?
In addition to HIV medications, I take multivitamins and see a naturopathic physician on occasion. I go to the gym regularly and see a psychotherapist when I need to.
How have your relationships with family and friends changed since you were diagnosed?
I've come out about my HIV to just about everyone in my immediate family. My family has been very supportive, and not much has really changed in my relationship with them. My mom asks occasionally about my health; since I haven't really had any health problems associated with my HIV, there just hasn't been too much to discuss other than medications, T cells, and viral loads. All of my closest friends know about my HIV status, and they are all very supportive.
How do you decide whether to disclose your HIV status to someone?
I don't consider my HIV status a secret, and I've talked about it publicly before. I don't talk about it much professionally because I work with people with HIV, and I want to keep the focus on them and not me. The people I work with are a lot worse off than I am, and I want to give them as much of my attention as possible because, for many, I am the only person that they can talk to about their HIV. It's a terribly isolating disease in the black community.
How are you better off than the people you work with?
I'm better off because I'm educated, which affords me a good job; with that comes medical insurance and housing. Most of the patients that I work with do not have those things. They have access to care but many are not housed, which makes accessing care a challenge.
You said that HIV is an isolating disease for African Americans. Why?
HIV is an isolating disease for African Americans because of the stigma. I believe that black people are more tied together as a community because of cultural similarities, and to escape racism. You do not want to be disassociated from your community, because that is where you get support. So, to be stigmatized because of your HIV, you risk being disassociated and that can be isolating. Black people have so many other issues to deal with that adding HIV to the mix is challenging.
How has your sex life changed since you become positive?
One of the most difficult things about living with HIV is dating. No one likes to feel rejected. In the beginning, there were a lot of guys that never called me back after I disclosed my HIV status to them. It hurt a lot, but I was able to put it into perspective once I realized that, before I had HIV, guys wouldn't date me because of my race, or the way I combed my hair! I disclose to anyone with whom I plan on being sexually active. Dating other HIV-positive guys is a preference since it makes things less complicated, but I don't limit myself that way.
What are the best and worst responses you've gotten from telling someone your HIV status?
I can't really remember the responses that I've gotten over the years, but my last relationship was with an HIV-negative person. I guess that was a good response, since [my HIV status] didn't matter to him.
Will you make any New Year's resolutions?
I rarely make New Year's resolutions, because my motivation to change a habit or behavior does not always come precisely at the beginning of each year.
What was the greatest adventure you ever had?
The greatest adventure I've ever had was traveling to Botswana. I already knew that blacks are capable of self-governing because of where I grew up, but it was just nice to see it on a larger scale ... and to be so close to those diamond mines.
If you were granted one wish, what would it be?
My only wish is to find a cure for AIDS and to make it available equally throughout the world. OK, that's two wishes.
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