August 14, 2012
Though it happened 26 years ago, Tommy Chesbro remembers his HIV diagnosis -- and the circumstances that led to it -- like it was yesterday. In 1986, a positive HIV test meant something fundamentally different than it does today: It meant, in short, that it was time to start planning for death. So Tommy got ready.
Only, he didn't die.
Thanks to the support he received, a good dose of luck, and his ability to educate himself about HIV and empower himself to take charge of his health, Tommy is now able to look back from the standpoint of a long-term HIV survivor who fights for the rights of others with HIV and helps them work through the difficult issues he himself once had to grapple with.
In this video interview, this Oklahoma resident and U.S. Midwest native recalls the moments leading up to his diagnosis and explains how he came to terms with HIV, disclosed to his parents and began publicly speaking about HIV in the heavily stigmatized U.S. heartland. As a son of two mixed-race parents, Tommy also talks about how his part-Native American, part-African American, part-Caucasian heritage played a critical role in his upbringing and his life.
Welcome to This Positive Life. Tommy, it's wonderful to have you here.
Thanks for asking me.
You're very welcome. Please introduce yourself and tell us where you're from and what you do.
My name is Tommy Chesbro, and I'm from Tulsa, Okla. Currently, I'm working for myself. I started a consulting company, Chesbro Consulting, LLC. I guess we have to put those initials behind it. I filed the paperwork with the state of Oklahoma to become a licensed company there.
In the past, I've worked for Planned Parenthood, for Indian Health Care, for the [Oklahoma] State Department of Health, and for the Oklahoma State University Student Health Center. So I've had a lot of jobs, and in all of those jobs, I was working in HIV and AIDS.
Can you describe how you found out that you were HIV positive?
I found out in the summer of 1986. Looking back, I know that I was actually infected in the fall of 1985, because of the retroviral syndrome that I had at the time, though it was not recognized at the time as that. They thought I just had the flu or something.
When I got infected, I was living with a partner. We had been together about a year, almost a year and a half. He actually had retroviral syndrome about three weeks before I did. There's never been any blame or anything related to that. I don't know who infected who. But at the time, we didn't know what was going on.
Then that following summer, I was working on a master's degree in performing arts and musical theater. And I was doing summer stock theater in Wichita, Kan. One of the young men who was in our cast -- his name was George -- he was an African-American young man from Houston, Texas. He had had a cough and hadn't been feeling well.
One day after rehearsal, he collapsed at the top of the stairs in front of the dressing room. They rushed him off to the hospital. The next morning, they called a staff meeting and let us know that George had been diagnosed with AIDS.
Well, it scared a lot of us in the cast. George went into the hospital on a Tuesday. On Friday morning he had a bronchoscopy done to see what kind of pneumonia he had, which turned out to be PCP [a.k.a. pneumocystis pneumonia]. But he died during the procedure.
As far as I knew -- I didn't even know I was infected at the time -- he was the first person I'd ever known with AIDS.
I decided to get tested. One of the other cast members, a former Miss Oklahoma who I had known, her husband was a doctor there in Wichita; he offered to do the test. He was used to getting a result back by phone when someone tested positive, before he ever got the paperwork back from the lab. He knew I was anxious. After several days, he had not received the phone call. And he told me, more or less, that he was pretty sure everything was fine, and I wasn't infected.
Well, I was excited about that. It was a big relief. I knew from that point on I would learn about this disease, and try to make sure that I would not become infected.
Then a couple of days later, I got a phone call. I was actually living that summer with two other guys and a girl that were all part of the cast. I answered the phone. It was my doctor. He explained to me that he had made a mistake, that he shouldn't have went ahead and told me, because he hadn't gotten the paperwork back. I was infected.
Some of my roommates were home. I didn't know how to talk on the phone, because I didn't want them to know. I didn't know how they would respond. I let him know that I would come straight down to his office.
Well, one of my roommates I trusted enough to tell. He actually went with me down to the doctor's office. But I went in to talk to the doctor on my own. I think we probably had about an hour-long conversation, but I don't remember a word from that conversation.
And that's how I found out.
What were you thinking? And how were you feeling at that point, considering that you had just seen someone die quite quickly?
I finished that summer there. But I had basically thought that my life was over. I immediately called my partner -- former partner; we had broken up by this time -- to let him know that I had tested positive. He broke down in tears and we were both crying. Because of all the stigma and stuff associated with the disease, it took him several years before he went and got a test and found out that he was infected, too.
I had six hours left on my master's program. I tried to go back to school that fall and finish that up, but I just, psychologically, couldn't handle it. I dropped out of school and moved home, back to Stillwater, Okla., where I grew up, and basically mentally was just preparing to die.
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.
What's your relationship been like with doctors? You sound like a very empowered client of health care. You know a lot about what's going on with your own body. So what has been your relationship with health care?
I educated myself -- and, like many of us, sometimes knew things before our doctors did. Because they were so busy taking care of their clients, they oftentimes didn't have the time to do the research to stay completely on top of the new happenings that were going on. But I've had some really good doctors and I've been real fortunate.
Luckily, I have had health insurance. I got my first health insurance on my own, prior to my diagnosis. Once they found out that I had HIV, they knew they couldn't just eliminate me from the policy. But I would get a letter in the mail, and the letter would say, "Unfortunately, we're having to raise the premium on this policy for everybody." But then they would say, "But if you don't have any preexisting conditions, we have another policy that you might want to switch to." So then, everybody that was on my policy who didn't need it would switch. And then it would make all of us that needed it stuck there with a higher premium.
That happened like three times. I went from a $30-a-month premium in the mid-'80s to a $600-a-month premium in the early '90s, which today probably would be more than that, if I was having to do it. But up until that time, I was able to afford that. Then I got a job that actually provided health insurance. So I have been fortunate with that.
I know how lucky I am, because I work with clients all the time that don't have that luxury. And thank God we have the Ryan White program, and the case management programs, and the Ryan White clinics, and the ADAP [AIDS Drug Assistance Program]. But, still, people fall through the cracks.
Backtracking very, very far back: I'm curious about your background. Tell me about the community where you grew up. Was it a small town? Do you have brothers and sisters? I know that you have a well-known name, and a well-known family, as far as sports. But talk a little bit about your youth, your childhood.
I pretty much grew up in Stillwater, Okla. -- which, at the time I was growing up, was a population of about 40,000 people, plus a population of college students that went to Oklahoma State University. I was involved in sports. I wrestled and played football: I played football up until my sophomore year of high school, and I wrestled up through my junior year of high school, which was finally when my father told me I didn't have to anymore. Because I never really wanted to; I did it because I was supposed to.
I was really interested in things like music and theater. Up until I was in junior high, I had been very involved in music -- and then, when I got into high school, there was a conflict in the time and I didn't have the option to do the music.
My senior year, my dad finally realized that I was not happy, and told me that I didn't have to [wrestle] if I didn't want to. So that was actually the best year of my high school, my senior year, because I got to do what I wanted to do. I was in the select choir, I was in the musicals, and did all of that.
When I turned 40, I finally decided to go back to school, and got a master's in human relations. I also got certified as a sexuality educator with the American Association of Sex Educators, Counselors and Therapists. That's the education that I really use in the work I do today.
Which community did you identify with the most? Did you identify with the Native-American culture more, or with African-American culture more? What were the influences on you growing up, and even to this day?
Growing up, I identified as being a Native person. I didn't look that way, but those were the stories I heard from my family growing up. My great-great-aunt: We would sit at her feet and she would tell stories about her great-great-grandparents, and the stories of moving to Oklahoma and what that was like; and living in the Cherokee Nation before statehood. Those were the stories I heard from my family, as a small child growing up. So I knew that as an identity from a very small child, in school.
But I also knew that, unfortunately, there was a lot of discrimination. So I didn't talk about that a lot in my younger years. My relatives -- even my brothers -- we don't all have the same complexion. My middle brother is much darker complected than I am, has very dark brown eyes, dark brown hair. My mom's father has straight black hair, and is dark complected, dark brown eyes. My mother has a complexion more like I do. But she has a sister and brother that are darker complected.
So we have all this kind of mix going on in our family. But we didn't talk about it very much. I mean, if somebody would ask, I'd say, "Yes, I'm Native American." But it wasn't something that we talked about very much. I even had some resistance from one grandmother to not tell people. It was out of concern for prejudice, and so on and so forth. But I didn't really quite understand that.
It wasn't really until after I became infected with HIV that I really started looking into my identity as a person, and reaching back into that. I think it really helped me as an individual, in my self-identity, in dealing with my HIV status and my sexuality, and in embracing that part of who I am.
I know it's been a while now, but how do you feel that having HIV has changed you?
Well, it's hard to know. It's been 26 years. I know I'm a different person than I would have been. There's no way I could not be. I probably appreciate life more than I may have ever done. I appreciate diversity more than I probably would have ever done. I appreciate and understand the struggle and the dedication of the people who have worked to try to put an end to this disease. I feel better about myself than I may have if I hadn't had to deal with the issues that I had to deal with.
God knows, I wish I didn't have HIV. But I think I'm a better person because of it. It's hard to know what path I would have gone on, or where I would be, if this hadn't happened to me.
But it did. And I can't change the past. It has set me on a journey that has been educational, both emotionally and mentally; and I've been able to meet some of the most wonderful people that I would have never probably had the opportunity to know. So I'm very thankful for that.
Do you have any advice for anyone who was recently diagnosed with HIV, or who is just coming to terms with it now?
I work with a lot of individuals from time to time who are newly diagnosed. Some of the things that I hear them say are that they feel tainted, or dirty, that "no one will ever want to be with me," that "I'm going to be alone forever."
So I want people to know that you're valuable. Just because you have HIV doesn't make you a monster. You have something to contribute to this community. You have something to contribute to the world. Maybe you haven't found that yet, but it's there. And this is a wake-up call to find that, and use this as something to change your life in a positive way.
You can let this destroy you, or you can let it lead you down a path and on a journey that will take some struggle; but nothing worthwhile ever happens without struggle. So embrace it. Take the journey. Do what you have to do to live a strong life. And don't let it defeat you.
This transcript has been edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.