This Positive Life: In the Midwestern U.S., Forming a New Life
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.
Now, of course, they broke his confidentiality. There was no reason for them to actually tell us that. We weren't at risk for infection from working with him. But this was back in the mid-'80s and in the middle part of the United States, and people had a lot of fear, and didn't understand, and didn't know what was going on.
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?
That I was going to die. You know? That's all that we knew about the disease back then.
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.
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