This Positive Life: In the Midwestern U.S., Forming a New Life
August 14, 2012
What happened next? Because, clearly, (a) you have not died, and it's been quite a long time; and (b) it appears that you're no longer of the mindset that your life is going to be dramatically shortened. What did you first do to come to terms with your diagnosis?
I was frightened of people finding out. I hadn't even told my parents yet. So I was driving back and forth to Wichita to get my care. And at that time, there was no medicine available. AZT [Retrovir, zidovudine] hadn't even been approved.
But after a couple of years I realized that things weren't going downhill as fast as I thought they might. I loved the outdoors; I loved doing things in the outdoors. So my best friend and I decided that we would move to Crested Butte, Colo., and be ski lift operators.
It was then, that winter we were up there, that I had a lot of time -- especially when I worked the top lift on the mountain. You sit up there in that shack by yourself for eight hours a day, and you don't talk to anybody, hardly. I really had a lot of time to do a lot of self-reflection.
I realized that I needed to face up to things, and I needed to tell my family. I needed to stand up for myself. So I actually called them, which is not a good way to tell your parents that you're gay, for one, and that you also have HIV.
Now, my mother already knew I was gay, but she had not told my father. I called home in February of '89. I'd been infected then for about four years, at that time. My mother got on the phone, and I asked her to put my dad on the other line. I called, hem-hawing around. I wanted to say, "I have HIV," but I just couldn't get the words out. My mother -- mothers always know -- she interrupted me. She said, "Tommy, you don't have to say anything. I already know."
In my mind, I was thinking, "How can she know?" What I realized after that was that she didn't really know for sure, but she knew something had happened in my life that was very traumatic. Because I was not the type of person to drop out of school. I was not the type of person to sit around with no motivation for a future, and just get a menial job at a bookstore, which is what I'd been doing for three years. She knew that something had happened, and she knew that something had changed in me. And she figured out that it had to be something pretty traumatic, or that wouldn't have happened.
My father was pretty clueless about things. He chimed in and he said, "I don't understand what you're talking about. What do you mean, you already know?" Well, my mom didn't reply to that, but that's what gave me the courage finally to just go ahead and say, "I have HIV."
My dad, [when I was] growing up, was the kind of person who really tried to drill into me what a man was supposed to be, and that boys don't cry. This was the first time in my life I ever heard my father cry, and it was on the phone. He told me to promise him that I would fight, and that I wouldn't give up. I made him that promise.
At the time, I don't think I really knew what that meant, and what that fight was going to be. But I made that commitment to him.
I moved back home shortly after that, and got another job. During that time, they had the first State HIV/AIDS Conference in Oklahoma. And I met a young man named Rob Borders, who was working for the State Department of Health in the HIV service, and was speaking publicly about his HIV infection. Rob and I became friends. He was teaching the courses that the State Health Department taught for HIV counseling and testing, and HIV education. I went through those courses and got certified as a counselor, and as an educator.
About a year after I met Rob, he died. Before he died, I'd started working at the Student Health Center at Oklahoma State University, doing HIV counseling and testing. I did that after I went through the certifications with the Health Department. That was my first job working in the field.
When Rob died, at his funeral there were some other employees from the Health Department there. Rob worked in Oklahoma City, but there was a similar job that had opened up in Tulsa; they asked me if I would be interested. Rob had given me this great inspiration, because he was so brave, speaking out at that time. I wanted to be like him. So I went to work for the Health Department, started teaching the classes for HIV counseling and testing, and for HIV education.
I had been asked to speak at a gathering on World AIDS Day in 1993 at Oklahoma State University. I was living in Tulsa, but I was driving to the student union that night to do this presentation. The presentation was just supposed to be on prevention: How you get it; how you don't. But in my mind, I was like, " I'm going to do it. I'm going to tell people." So I was in front of about 300 college students at the student union little theater, and during that presentation was the first time I ever mentioned publicly that I had HIV.
My parents were afraid. They didn't know what the community would feel. And I think, to their delight, their friends didn't turn their backs on them. Some of my dad's friends supported him a lot more than he thought they would have, being from that kind of environment of athletes.
It was years later that we had discussions, when both my parents told me that I had done the right thing -- that at the time they didn't understand why I needed to do that, but that now they did, and they believed I had done the right thing. So that was really great to hear them say that, eventually.
This is 1993, right?
So this was post-Magic Johnson, post-Arthur Ashe, as far as athletes coming out and being public with their HIV status. Did this have any effect at all, as far as your father and the men in your family being prominent in the sports world? Did that have any bearing whatsoever on their internalizing your being public?
I think with my dad, no. But I think possibly with my uncle, Eddie Sutton, yes, because of the connection with basketball. But even with Magic Johnson there was still stigma and rumor about how did he get it, when did he get it, what was going on. There was still some fear with those issues, even though he was a great athlete, and has done tremendous things since then in the fight against HIV.
But [my disclosure] was only within maybe two years of when Magic Johnson had become public. So there was still a lot of misinformation, and a lot of things that people hadn't learned. And, of course, my parents were afraid I was going to die soon, so they were dealing with that kind of grief, as well.
Of course, because there was still not very much treatment available at that point.
Right. When I was first infected, there was no medication available. I started AZT monotherapy in December of 1992. I went through AZT, ddI [Videx, didanosine], d4T [Zerit, stavudine], Sustiva [efavirenz, Stocrin], and there might have been another one in there; I can't remember. And I became resistant to all of them.
Even though protease inhibitors became available in '95 or '96 -- I don't remember exactly when in there that happened, but in that ballpark -- I didn't start protease inhibitors till '99. I don't know why I waited, but I think part of it was simply that I was still doing things. Even though I'd become resistant to those other drugs, my CD4 counts were still above 500, and at least at the beginning of that, they weren't even doing viral load testing.
My CD4 counts were OK, and so I just kind of waited. I was in this mindset of: Something better's going to come along. And I heard all the horror stories about the toxicities and the side effects.
But in 1999, I did start to get sick, and my CD4 counts did start to decline. So that is when the decision was made to go on the three-drug regimen with a protease inhibitor. The first one I took made me so, so sick. I tried it for about a month, and the symptoms didn't subside any. So we switched to another.
During that time, for that whole year of 1999, I was not feeling very well. I lost a lot of weight -- I lost close to 30 pounds. I ended up having to have sinus surgery because of the chronic sinus infection I couldn't get rid of. Then in the fall, after I started the protease inhibitors, my viral load started to drop; my CD4 count started to come back up. By December, I was pretty much back to myself again, other than dealing with the side effects of the protease inhibitor, which was diarrhea every day.
Since that point on, I have had an undetectable viral load and CD4 counts around 1,000. I've been real fortunate that since '99 that's where my health status has been.
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