Who have been your mentors? Who do you look up to and why?
Elizabeth Glaser. She put a nongay face on the disease, showing the general populace that the disease doesn't pick on any particular group. Ryan White, because of his courage and honesty in speaking out as a child who "just wanted to be like everyone else." Also my father, for his guidance, wisdom and strength of character.
What made you decide to speak out publicly about your HIV status?
Well, to be honest, I decided to speak out publicly about my HIV status because there are too many African Americans dying from this disease. I went public to say "AIDS is alive and well in the community, so stop sticking your head in the dirt."
What do you think is unique about your story?
I'm an African-American male who served in the military as a leader of men and women. I'm speaking out for veterans who have served their country and have been infected with HIV. When the military started testing for HIV, I was the testing coordinator for a unit of 500. There were several people in my company whose test results came back "questionable," including me.
What do you think is unique about the audiences you try to reach when you speak out?
Too many communities are led by fear and ignorance, and this is especially true in African-American communities. There's been a change in recent years, because most ministers blocked us out until around five years ago. Now they're starting to let us come in and talk with the congregation. This is good, because for too long ministers didn't know how to talk with their parishioners about HIV/AIDS and people were mistreated. This is changing. Ministers are getting training, not only to work with people who are infected, but also with people who are affected. HIV-positive people and their families are getting educated and being treated with compassion.
What's the best thing about sharing your story with others?
The best thing about sharing my story with others is just standing up and saying, "I am somebody, and I am not ashamed" and also, "There is life after this diagnosis, and there is hope." And to those who are HIV-negative, telling them, "You don't want to wear these shoes."
What's the worst thing?
The worst thing is that people are not heeding the message, and they are dying needlessly. You just keep trying, and you hope you make a dent in the wall for those who will hear.
What do your relatives feel about you speaking out?
My relatives are 100 percent behind me -- they want to be educated.
I want to say something about my parents. Concerning my sexual orientation, when I came home from Vietnam and decided I had to come out to my father, I was scared of how he'd respond. I took him to a park, because then if he was going to do anything he'd have to do it in public, you know? Before I even opened my mouth, he said, "Son, God gave you to me, and nothing's gonna take you away from me." I told him, "Your son's gay," and he said, "Your point is?"
So when they learned about my diagnosis, they did not say, "I don't know you." They said, "What do you want us to do, besides keep loving you?" They spoke out whenever they heard prejudice against HIV-positive people or gay people.
What does your partner/spouse feel about you speaking out? Has he spoken out in any way as well?
I've been with my spouse, Jim, for 12 years. Jim has a family, and his wife and I are best friends. His sons are my stepsons. He realized his orientation and left home before we met, but when we got serious, I met his family and they were very warm to me. His sons said, "Just don't give Dad that disease," and I promised I wouldn't -- that was unique. But when I got sick, I was overwhelmed by their generosity. They've been a positive in my life.
What have you learned since you began speaking openly about your HIV status -- about yourself? About HIV? About other people either with or without HIV? How has speaking out helped you, and how have you changed as a result?
Speaking out makes me more confident about my life. I would wear a neon sign if I thought it would help, because, really, what can you do to me? Early on, I grew strong through knowledge. I wanted to learn how to live with this disease. Now I try to pass that strength on to others.
Can you describe your feelings when you were first diagnosed? Did you feel differently a few months down the road? How long do you think it takes to really process the diagnosis?
Total fear and shock. As I said before, I was tested through the military testing system, while I was testing coordinator for my unit. People came through in groups, got their blood drawn, and went away. My test was one of the ones that came back questionable. The doctor said, "Your test is positive; you've got four months to live. Gather up your stuff; you're gonna die," while my commander and I just stood there with our mouths wide open. They sent us to Georgia for confirmatory testing, and lots of people had come up positive. There was no compassion from the Army medical staff.
Because of the time frame, people were dying right and left. I figured I was going to die, too, but after four months passed I said, "Well, I'm still here, so I've got to start paying attention."
Any tips for those who are newly diagnosed?
Seek understanding. Seek support from trusted friends and family, and start educating yourself about HIV.
If you want to, can you share how you believe you acquired HIV?
Promiscuous sex! We were having a good time back then! No one used condoms, because VD was the worst that could happen to you, and then you just got your bullet [of penicillin] and 14 to 18 days later you could go back out and play.
What do you believe was your biggest risk factor?
Sex. I did the wild thing, you know, and I got caught.
If HIV were a person, animal or object, what would it be? Why?
A chameleon. It has the ability to move without being seen, if you don't pay attention.
What do you think is the biggest problem facing HIV-positive people today?
Ignorance, mostly on the part of other people. We are still viable and visible people, and we can still contribute to society if allowed to do so. But people hide for their own protection. I've met professional, highly regarded people who are hiding, and that's sad because this virus is just a small part of them. Get real! Let people work!
What is the biggest change you'd like to see in HIV care? How about in HIV education?
I want to see continued education for care providers and more compassion. Providers were not as compassionate in the beginning, and that has changed for the better. Doctors are getting better at talking with people in general, and we, too, have begun to educate ourselves and we have to stay on top of that. We have to work with our care providers and say, "Come back down to earth now. Forget that 26-letter word, and talk with me about pain."
When you look into your crystal ball, what do you see in the future for people living with HIV?
More and better meds with fewer side effects, and maybe even a cure. That's the hope of all who are infected or affected. It may not happen in my lifetime, but it'll happen.
How do you maintain a positive outlook?
Let me say this: I am a faith-based person. God kept me here to do this work. Each time I got through a crisis, I figured, "God got me through that, so I must have something to do here. I better pay attention." I believe God's doing what he needs to do through me, and God doesn't make trash. It's true that we don't always act right, mostly because we're afraid and we want to be in power. But I want to empower! And if everyone gets to outlive me, great!
What has been your overall experience with HIV treatment so far?
Well, I was diagnosed right away as (having) full-blown AIDS in 1986, so I never was just HIV-positive. Right now I've tested resistant to all my meds, but I'm not afraid.
We didn't have viral load then, but my first CD4 was below 200. Right now, my CD4 is 152, and my viral load is over 99,000. But I've been there before, and I don't have time to be Chicken Little running around yelling, "The sky is falling! The sky is falling!"
What HIV treatments have you been on, if any? Give dates, CD4 counts and viral load counts, and the toughest side effects you've faced on treatment.
Oh, I've been on just about every drug they have -- AZT [zidovudine, Retrovir], ddI [didanosine, Videx], d4T [stavudine, Zerit], Fuzeon [enfuvirtide, T-20], Sustiva [efavirenz, Stocrin], Crixivan [indinavir], everything. I've had PCP pneumonia five times, and now I'm allergic to Bactrim so I have to do pentamidine every 30 days.
The worst side effects I've had are the puking and the diarrhea, and for a while I had to have transfusions every other week for anemia. I've had weight loss. I had side effects from Sustiva, but I kind of liked it! The trick with that is I took it with a sleep medication -- I'd go to bed dizzy, but then I'd just fall asleep. For a lot of people, it works if you just don't take it until you're going to bed.
How often do you see your doctor? How did you choose your care providers?
Right now I see my doctor once a month for the pentamidine, and every three weeks or so to monitor my counts because of the resistance. There's some new drugs coming out soon, Truvada [tenofovir + FTC] and Aptivus [tipranavir] so we're holding off new treatments for now.
You don't get to choose your providers in the Veterans Affairs (VA) system, but it's free. I had the choice of going with the VA and having everything covered 100 percent under my disability, or going to a civilian facility at cost.
What kind of relationship do you have with your care providers?
We're a team. Treatment through the VA has gotten better. I was only the 51st AIDS case to come through the VA, and some of the staff I see now have been there the whole time. I've had to school some people over the years. I was around for the shoving food under the door at the hospital and the staff wearing space suits and all that, so I've seen it. But I've had four doctors now through the VA that have been excellent, and my present infectious disease doctor is wonderful.
Do you have any health/wellness regimen that you feel helps you keep healthier?
I walk. I used to be a drill sergeant, fitness trainer, run 10 to 20 miles a day, climb mountains. That was then, but I'm still active. I still get good exercise.
Any adherence tips for other people on treatment?
Continue being adherent. Educate yourself about resistance, because missing just a dose or two can advance the virus. We have a peer counselor program at Kansas City Free Health Center, where we educate people starting with HIV 101 and going on up. We talk about the chemical makeup of the virus and the medications, check up with clients over the phone and help them eliminate the causes of missed doses. This is a voluntary program, but our participants experience fewer adherence problems.
If you are single, how has your dating experience been since you were diagnosed with HIV?
I've been with my spouse for 12 years, and before that I had another spouse, Steven, who died. I met Jim while Steven was still alive, through dinner with some friends. The next time I met him, he was volunteering with the Good Samaritan Project and came to pick up Steven's clothes after he died.
Any tips for dating that you can share with other people who are positive?
Disclose first -- just get it out of the way. If they decide to get sexual with you, you say, "This is how we're gonna play."
Where did you grow up?
I was raised in Jacksonville, Fla., all through high school and junior college.
What did you want to be when you were a kid?
Oh, I wanted to be a singer! And I was so impressed by my high school English teacher, who spoke six languages and with so much elegance. I had oratory and debate with her as well and was so impressed. She taught all of us a mantra, which was common for teachers of African-American students in the 1960s: "I am somebody, from the top of my head to the bottom of my feet. I will achieve." She told us, "You are above being a dog or a slave, so treat yourself with dignity and respect."
What kind of work do/did your parents do?
My mother was a homemaker. My father was a short-order cook and then eventually a city laborer. They showed me what it was to be a proud family. My father was a man's man, but he was also gentle and taught me to treat women with respect.
What kinds of work have you done?
I'm a 20-year Vietnam veteran; I retired as sergeant first class. I was a drill sergeant for both male and female units. I received lots of education and training through the military.
What do you like to do in your spare time?
I cook. I love cooking; my dad taught me to cook. I do my own sewing -- I'm self-taught and I do all my own sewing now. I also volunteer as a co-facilitator for the L.I.F.E. Program, which is a satellite of the Shanti Project in California, and I'm a member of the Spirit of Hope Metropolitan Community Church. When I can, I like to travel -- I've been to Holland, Rome, Russia and many other places.
Do you have children?
Jim's sons are my stepsons. Pete is 30 now, and Ted is 28.
Do you have pets?
We have three cats that we got from the rescue about four years ago. Snowball is the dainty one, Pretty Boy is the floppy one who lets you pick him up and Lady Sadie is kind of sometimey with her affections.
Where do you live? Describe your community.
We live in a retirement community. The community itself is very quiet, but it's off a busy street with a strip mall nearby.
If you could live anyplace besides where you live right now, where would you live?
I'd live in Germany. I've had friends there for over 30 years, who I'm visiting this summer.
What's the biggest adventure you've ever had?
When I went mountain climbing in New England.
What are you currently reading? What book or author, if any, has had the biggest impact on you?
One book that's meaningful to me is a daily devotional and self-empowerment book by Iyanla Vanzant.
What kind of music do you like? Which artists do you listen to the most, and who has had the biggest impact on you?
I like old black gospel, some modern gospel and jazz. I came up in the 40s and 50s, and the music of our forefathers spoke to me, all the language of our travels. People didn't write their stories down, so there's a lot of storytelling in the music. And Jim loves classical music! He's a classical music geek!
Anything else you'd like the people reading this article to know about you?
Everything good that has happened, God has made it so. In my life, it seems like everything has been on the positive.
Interview by Laura Jones