How have your relationships with family and friends changed since you were diagnosed?
I have always had a very caring and loving family throughout my entire life. When I was in a position to disclose to them about my HIV status, they offered any kind of help that was needed. And I thought that was pretty good after having seen so many people get kicked to the curb after disclosing.
As for my sexual orientation -- yes and no. There's a member of my family, a sister, where if you tell her anything, it's like you've told everyone, and that conversation took place sometime in the early 80s. Even though I lived a lifestyle then that was not very open to them, they knew. It was not until probably just recently, with the relationship that I'm in now, that it became extremely open and obvious to them. My partner and I purchased this home together. And recently a power of attorney and a will was put together and copies were distributed to a couple of members of the family, so I believe they all know now that it is what it is, and there's nothing we can do about it!
My family has always taken a back-seat approach to my recovery: "When he's good and ready, he'll come around." And when I was getting ready, they were there.
How do you decide whether or not to disclose your HIV status to someone?
My attitude toward disclosing is "on a need to know" basis. The stigma is still there. Do I help to dispel that stigma? Yes, no, I don't know. People have attitudes, and they'll have them no matter what you say or do, and I don't do much to change their attitudes.
Why did you agree to do this interview with The Body but request anonymity?
I don't want to have to deal with all the stigma. And for a very personal, practical reason: I'm writing a book about my experiences -- the sex, drugs and rock and roll, AIDS recovery -- and I feel more comfortable being anonymous when I tell my stories until the book comes out with my real name.
Did you have any trouble with your HIV status while you were incarcerated?
For me, the attitude was quite tolerant, but it's all about who you are. I would fight, so that made all the difference in the world. Even though I wasn't the biggest or the strongest, I didn't mind getting my ass whupped. People think differently when they're messing with a guy who doesn't mind getting his ass whupped: "Wait -- he'll fight back, and he might end up getting the good of me a little bit, so I don't mess with him."
I believe the statistics here in Illinois are that something like 2 percent of incarcerated people are HIV-positive but that 60 percent engage in sexual behavior. So I think some guys inside the penal system live with that fear that, "Yeah, there's a chance that I may be too, so who am I to put anybody else down when I'm too afraid to take the test myself?"
What are the best and the worst responses you have ever gotten from disclosing to someone?
Well, nobody ever threw a party for me, but probably the best response I ever got in a dating situation was to hear someone say, "Oh, I'm glad you told me. So am I!"
I've only had one negative situation, some time ago. I was living in an apartment and one of the guys I was attending school with came by and was interested in becoming my roommate. It wasn't until I disclosed my HIV status that his decision to move in just totally changed. And he didn't have the nerve to tell me it was because of my HIV status until I pushed for the reason. That was in 1998, but it was the first time I feel I had ever been rejected due to my HIV status, and it hurt me a lot.
Where do you go for support?
Having a large family, I'm surrounded by love. I have a 75-year-old sister who, if I want to feel loved, all I do is surround myself with her. Family and friends and coworkers are very important to me as far as getting that love. Having one-on-one conversations with people, to be sincere and honest, helps a whole lot.
How has your sex life changed since you become positive?
I've never experienced rejection from potential sex partners because of HIV. I was 30 when I was diagnosed. I lived 10 years in a denial cocoon, and so for 10 years in my mind I was not HIV positive. I just kept thinking, "OK, they're going to come out with a shot that's going to get rid of it," -- well, they didn't and they haven't yet.
I think in '91 and '92, when I first went on meds, the reality that I was really HIV positive hit me the hardest. I went through maybe 35 to 40 days of mental debate whether or not I was even going to start meds, because that would mean I truly had HIV, and I wasn't ready for that.
I think I began to take a different approach to living with HIV as far as my relationships, because now I had HIV meds in the house, people coming over -- "Do I leave them out? Do I put them up?" -- those kinds of decisions had to be made. I think at that time I was still hiding my meds the majority of the time.
Do you have a policy about if or when you tell a sex partner that you are positive?
Well, yes and no. My policy is that I don't want to do anything to anyone that I wouldn't want done to me, and that causes me to not do a lot of things. I'm sort of grateful now that I'm in a monogamous relationship and don't have to worry about dating anymore. Actually, I kind of violated the Illinois law and I did not disclose -- I just protected myself and those I was having sex with.
Do you feel that if you practice safe sex, it is necessary to tell a sex partner that you are positive?
Once again: yes and no. I think each person that's HIV positive has a moral as well as a legal obligations to inform the person you're having sex with that you're HIV positive, and when you violate that what you've done is rob that person of their right to choose whether or not to have sex with you. And that's wrong.
But the reality is that two people get together and it's an extremely horny and heated situation, and there may not be time to sit down and have that two-hour discussion about HIV and AIDS -- it's a zip-zam-thank-you-ma'am.
Certainly, for every decision we make come consequences and repercussions, and that's something I always have to think about. It's not as easy for me living a life of sobriety to do something like that, because you begin to add to the list of things for which I'll eventually have to make amends, and I'm not trying to add to the list because my life is full of 15 years of things I have to make amends for.
What books, movies, music or TV shows have had a big influence on you?
Definitely W. Clement Stone's book, Success Through a Positive Mental Attitude. Really my reading is along fictional lines. I love John Grisham's books! They're so real, and you get so lost in the characters and you're right there with them. Those thrillers are a way to kind of escape from reality.
What's the greatest adventure you've ever had?
Having my home built! First, in my wildest mind, I never thought I'd be a first-time homeowner at 50 years old. Then to just see it built from the ground up and fight with the construction company to make sure everything got done the way it was supposed to get done. Having this home built for me was certainly an adventure, and I have 200 pictures to show for it, from the time they laid the foundation to the time it was completed. I have no idea what I'm going to do with all these pictures now!
If you were granted one wish, what would it be?
I guess it would be to see everyone living extremely peacefully and getting along in the real world.
Is there anything else you'd like The Body's readers to know about you?
You opened a lot of the cans and a lot of worms came out! More than anything, anyone who's perhaps just diagnosed would want to know that living with HIV is nothing like it was some 15 or 20 years ago, as long as a person does what they need to do and seeks medical care and maintains the best mental attitude around HIV/AIDS.