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This interview took place in September 2009.
Home: Fort Lauderdale, Fla.
While Gary has never viewed HIV as a blessing in disguise, he also hasn't been a martyr to the disease. After the tragic loss of his partner and his own HIV diagnosis in 1992, Gary has made a point of learning all he can about HIV and soldiering on despite his losses, his fears and a battle against prostate cancer (and the treatment for it). Knowledge, work, personal goals and various support networks have all served to safely shepherd Gary into his 60s with grace, good humor and a desire to help others.
This is Olivia Ford reporting for TheBody.com. I'm here today with Gary, who's been living with HIV since 1992. Gary, welcome to This Positive Life. Can you start by describing how you found out that you were HIV positive?
Actually my partner was diagnosed. I was living in Detroit at the time. I decided, "Well, I better get checked out too," and my test came back positive. This was in 1992.
Very rapidly following his HIV diagnosis, Thom, my partner, was diagnosed with a very aggressive cancer. Within six months, he had passed away.
That was a very tough time for me, especially dealing with finding out I had HIV, and then six months later my partner passing away. Those six months were horrific for him. It was a very bleak time, especially because there were not many HIV medications out at the time.
I don't know when I was actually infected, but I remember back in about 1988, I had the worst flu. We found out later that that's a symptom of seroconversion. It could have been about 1988 or so that I was actually infected with HIV.
"\[Larry Kramer\] said, 'Living with HIV is like living with a monster in your house. Sometimes it's quiet and asleep in the corner. And other times, it's going crazy and trashing and destroying everything in the house.' For some reason, that really struck a chord with me and helped me learn how to deal with living with HIV."
At the time, my reaction to finding out I had HIV was that I really didn't want to hear anything about it. It was tough enough taking care of Thom and all that. Anything that would come on TV, I would just turn the station. I really didn't want to hear anything about HIV.
Eventually I grew more used to it. Actually, I happened to see a special on individuals living with HIV. It was probably 1993 or 1994. [Renowned HIV/AIDS activist] Larry Kramer made a statement that really helped me deal with my disease and living with it. He said, "Living with HIV is like living with a monster in your house. Sometimes it's quiet and asleep in the corner. And other times, it's going crazy and trashing and destroying everything in the house."
For some reason, that really struck a chord with me and helped me learn how to deal with living with HIV.
From that point, I kind of dove into it and really wanted to become more aware of what was available. AZT [Retrovir, zidovudine] was the only thing that was available at the time and I did not respond well to AZT. My T cells were about 700 when I was diagnosed and within six months they had fallen to 500.
Especially with what had happened to Thom, I thought, "Well, OK, this is it. It's not going to last very long. I'm not going to last very long." That was the whole story of how everybody was living and dying with HIV.
Then Videx [didanosine, ddI] came out. I switched to Videx and I responded better to that and was on that for several years. Then I had to be transferred to Cleveland, Ohio, and was involved in a clinical trial at University Hospitals for Viracept [nelfinavir], which was the second protease inhibitor that came out following Crixivan [indinavir].
I responded very well, and that basically saved my life, because at the time my T cells were down to 200. I was feeling OK, but I was on the verge. With the Viracept, even though there were some side effects, I was able to rebound. My T cells came up.
Being involved in the clinical trial, I really did try to educate myself more and more about living with HIV. That's kind of how I became aware of POZ Magazine. Before POZ started, they had InfoPack, a newsletter that was in e-mail, started by Stephen Gendin and Sean Strub. At that point, I got involved with receiving the e-mail from them. That helped me learn more about treatment and people living with HIV.
How old were you when you and your partner were diagnosed?
Let's see. It was '92, so I would have been 43. Thom was the same age.
How did you and Thom find care initially? Was it more difficult with Thom having cancer and HIV?
There were doctors in Detroit who were already specializing in HIV and AIDS. In Cleveland, it was the same. When I went there, I went to the University Hospitals, which actually had an AIDS Clinical Trials Unit. John Carey, M.D., was my doctor. He was very active in HIV and in research and that type of thing. I was fortunate to get that type of care that early.
What was your community like in Detroit? Was there a large gay community there?
Yes. Detroit is a city of a million people, and there are about three million in the metro area, so there was quite a gay community. There weren't a whole lot of HIV organizations. Like I said, when I was in Detroit, I didn't really want to hear much about it, so I didn't get involved at all in any HIV activities.
Then when I went to Cleveland, it was a little different. It was when I was making my evolution into more acceptance, and I heard Larry Kramer and got involved in the AIDS Clinical Trials Unit. I actually volunteered for quite a few clinical trials. They did a lung study where they injected your lung with a saline solution and then withdrew that liquid. In your lungs are where very young cells are made, and so they were able to study the progression of HIV, how it affects very young cells in the lungs, which was kind of a very unusual study. [Laughs.]
There were some other studies that I got involved with. I just really started trying to educate myself more and more about HIV and the treatments.
What regimen are you on now, if you don't mind my asking?
Prezista [darunavir, TMC114], Truvada [tenofovir/FTC] and Norvir [ritonavir].
How's that been for you?
It's OK. There are some stomach problems, but that's something you live with. [Laughs.]
Besides the low CD4 count with the AZT, you haven't, at this point, had an AIDS diagnosis?
No. I mean, I had neuropathy and I've had shingles. I've had pneumonia, but it wasn't a real serious type of pneumonia. I had thrush -- the standard type of stuff like that -- but nothing life threatening that I've had to deal with.
Going back to 1992: What was your knowledge of HIV at the time that you were diagnosed? Thom went and got tested, but what was the impetus for his getting tested?
"There was ACT UP, which was the radical arm of the HIV movement and really did help bring about a lot of awareness and a lot of faster-track approval of medications. Thank God that they were around."
You knew HIV was out there, but if you weren't infected, it really wasn't something that you tried to learn about. We had friends that were dying all the time. I had several good friends that passed away in the late '80s and early '90s. It was when safe sex started coming around and you knew that you needed to be protective. But Thom and I were in an exclusive relationship, so it really wasn't something that we were that concerned about.
The community had begun to organize, but there really wasn't a whole lot out there. There was ACT UP [AIDS Coalition to Unleash Power], which was the radical arm of the HIV movement and really did help bring about a lot of awareness and a lot of faster-track approval of medications. Thank God that they were around.
But there wasn't a whole lot of support. Thom had started a two-for-one support group several years back, in the late '80s. He had two people for every person that was diagnosed with HIV, as a support person for them in Detroit. It was informal -- just friends who had gotten together who had agreed to help other people who were living with the disease: getting them food or helping with their home or doing whatever they needed. If they needed to go somewhere and they couldn't drive, that type of thing. Because, as people were getting diagnosed with the disease, they began not to be able to take care of themselves.
|Gary while he was living in Japan (and sporting a beard) in the early 1980s.|
It seems that, in a sense, prior to being diagnosed, Thom had already gotten involved in HIV/AIDS work. Was he surprised himself when he was diagnosed? Were you surprised?
The way it started was that he had this really bad pain in his back. It was actually the cancer tumor that was causing the pain. He went to get that checked out. That's the initial reason he went to the doctor -- because of the pain in his back. As part of their procedure, they tested him for HIV, and that's when they found out that he had HIV and he had this very aggressive cancer.
What kind of cancer was it?
I don't remember. When they found it, it was the size of a golf ball. By the time he passed away, it was the size of a grapefruit. That was within six months.
Did any doctor express an idea that the cancer might have been related to the HIV? Were they really independent of one another?
They really didn't know at the time. There was never any official word that the two were directly connected. The problem was the treatment for the cancer, the chemotherapy, which ruins the immune system. In trying to treat the cancer they were ruining his immune system, which was being ravaged anyway by HIV.
He just deteriorated. He had been very healthy, worked out four, five times a week. Within six months, he looked like an 80-year-old.
How long had the two of you been together?
We'd been together about seven years. We'd known each other for about 15 years, but we'd been together about seven.
I imagine that Thom was the first person that you told about your diagnosis. Who else did you tell soon after?
Two people that I knew at the time, friends of mine, who were positive. They were the people that I contacted. Another very good friend of mine, also -- I talked to him about it because I needed to.
"The doctor came in and said, 'You're positive.' When you find out something's 'positive,' that's normally a _good_ thing, you know? But it was just a brief second, and then I realized, no, that's _not_ a good thing."
Do you remember feeling supported by the people around you as you were telling them?
Yes, I do. I vividly remember that day with the diagnosis, and when the doctor came in and said, "You're positive." When you find out something's "positive," that's normally a good thing, you know? But it was just a brief second, and then I realized, no, that's not a good thing.
It was very strange because I remember driving on my way home from the doctor's, and looking at the person in the car next to me, thinking, "Why do I have HIV? Why do I have to have this?" Actually, I was going on vacation the next day. The whole vacation was a strange one.
Do you remember where you went on vacation?
Yes, Thom and I went to a resort in western Michigan called Saugatuck. It's a popular resort on Lake Michigan.
Can you remember what the doctor said to you that day? Did he just say, "You're HIV positive," and then walk out?
I don't remember. My mind was just reeling at the time because I kind of expected it, but I didn't want to have it. I remember that he left me alone for a little bit because he said, "You just need to sit here for a little while and collect your thoughts. You can take all the time that you want."
But I don't remember what he said after he told me that I was positive. I know that my mind was processing it and dealing with it and reeling from it.
Disclosure in Work and Family Life
After you told the first few people that you were HIV positive, how soon did you start to tell more people?
It was a while. I didn't want people to treat me differently because I had HIV. When you have it, everybody starts asking, "How are you today? How are you feeling?" Especially back then, it was pretty much a death sentence. I figured by the time I was 45, within three years or so, I wouldn't be around anymore. I wanted to be able to still live my life with as much normalcy as I could.
Like I said, initially, I just ignored anything dealing with HIV, other than taking my meds, talking to the doctor, and talking to the few friends that were HIV positive that knew I was and another friend who was not HIV positive.
Of course, there was Thom's family. They were very supportive. They were incredible through the whole process.
Eventually, I made the progression from denial and ignoring it to more of an acceptance -- kind of going through a grieving process. It actually has all the various stages of it. It took a couple of years, but as I did so, the more I started learning about HIV. I decided I'd better start taking more interest in what the treatments are, what I might need to do, and what alternative treatments might be available.
Then in 1995 I started working for Community Prescription Service, which was a sister company of POZ Magazine. I was working at their pharmacy. It was the first HIV/AIDS specialty pharmacy. Nationwide, they were doing mail order for people who had HIV and didn't really want to go to their local pharmacy to get their medications because of the stigma.
The main offices were located in New York, but the pharmacy itself was located in Cleveland. That's where I was living at the time and I became the coordinator between the pharmacy and the New York office.
Once I got involved with them, I really started learning a lot about HIV because I was dealing with the meds every day in the pharmacy.
Actually, within the pharmacy itself, I got to the point where I put on a class called "HIV 101" for the employees. There were about 100 employees at the pharmacy itself. In the class I had groups of five that were all volunteers. I told them about my experience and living with HIV. It was about an hour-long discussion with people that were asking questions. I would tell them the basics of it because this was, again, in Ohio; and these were all middle-America, suburban type of people who were working at the pharmacy.
"One of the women came up and said, 'My daughter's very sexually active and she just got an STD. Should she be tested for HIV?' I said, 'Well, she's having unprotected sex. _Yes,_ she needs to be tested.'"
But it was surprising because several came out and said, "My cousin," or, "My brother," or, "My ex-husband actually had HIV." It was very surprising because none of that information had ever come out before, but they did tell me about it.
One of the women came up and said, "My daughter's very sexually active and she just got an STD [sexually transmitted disease]. Should she be tested for HIV?" I said, "Well, she's having unprotected sex. Yes, she needs to be tested."
At the end of the class I would ask for volunteers, because I had set up regimens of HIV meds that were actually placebos. They were just glycerin pills, and we had set up various combinations. At the time, you had to take some medications every four hours; some of it you had to take with food; some you had to take without food. Sometimes it got very complicated to be compliant with the medications, with their restrictions as far as diet and timing.
We created several combinations of the medications and put them together in pill bottles. Again, it was just the glycerin capsules. But then I asked for people in the class who would want to go on this regimen for a week. I asked them to keep a journal of their reactions and then to come back.
We held a general meeting where they would give their feedback to the entire staff of the pharmacy. And it was very interesting. One woman was on her way to a wedding, and she forgot to bring her meds with her, so she had to turn around and go back. She was also in a meeting with a client -- she was in sales -- and it was time for her to take her medications, and she said, "Gosh, what do I do?" So she pulled out her pills and took her medication at the time.
Hearing their reactions, it was very eye opening for them also, as far as how to deal with just the stigma of having to take pills. It didn't say, "This is an HIV pill," or anything like that, but it was actually just the idea of them having to take something. It worked out very well. It was very good education for the staff.
Was this some kind of pilot program? It seems very progressive to involve the staff in this way.
I just created it myself. HIV/AIDS wasn't the only thing that the pharmacy dealt with. It was a mail-order pharmacy. They had thousands and thousands of clients with various diseases; but our segment, from Community Prescription Service, was a big portion of their business. They dealt with HIV/AIDS every day. They dealt with medications and they dealt with patients and calling in refills. I just felt that it was important for them to get that other personal side of it, instead of just a phone call or a pill that they were dispensing to someone.
Were people resistant at first?
I was absolutely amazed. It was very, very well received. Like I said, it was all volunteers. They didn't have to attend these classes, but I would say 90 percent of the staff volunteered to come into the class.
Can you remember some of the comments that people made after this experience?
Some of them didn't know that I was HIV positive, which I was surprised at because I was open about it. Some of them were very appreciative of the fact that I was being that open.
I remember one question from one woman was, "Do your parents know?" At that point, my parents were elderly. They were about 80 at the time, and they had their own health problems. I felt that hopefully I would hang on, that I would still be around, that they would pass away before I did, and that they wouldn't have to deal with it because they were having enough of their own problems of dealing with diseases.
She thought that that was very sad that I wasn't able to speak to them about it, that I was shouldering it on my own, but I felt that I would bring no benefit to my parents' lives if I told them about my situation.
You never did end up telling your parents that you were HIV positive?
No, they passed away.
After Thom passed away, where did you get the kind of support that one might get from family? Was it hard not having your family there?
Yes -- there wasn't really much support at that time. I was still working too. I was having to deal with going in to work every day. I worked for a major electronic firm in Detroit, Honeywell. General Motors was my account, so I had major sales going on and had to be up and dealing with that type of situation.
Unfortunately, it got to a point where I was not willing to play the corporate games anymore, because it didn't matter. I wasn't going to be around. Why bother playing all the little games that you have to play in a big corporate world? It affected my performance.
When you say you weren't going to play the corporate games anymore, what do you mean? Were there any repercussions in your work life?
I don't know if there were any repercussions because I was still successful in what I was doing. I was having my sales, and as long as your numbers are good in sales, they're happy with you. [Laughs.] But when we'd go to conferences or meetings or things like that, I just wasn't as involved as I should have been or could have been, as other people were.
|Gary, in 1982, in Japan; and his father, in 1942, in China.|
I'd like to go back to talking about your family a little bit. Where did you grow up? What was your background like?
I grew up in a small town in rural, northwest Ohio, just about 30 miles south of Toledo, which was in the middle of nowhere. [Laughs.] It was a Norman Rockwell type of thing. You knew everybody in town, and half of them were related, and you never locked your doors and had the milkman that came and delivered the milk to the door. It was a small community. There were two high schools, one Catholic and one public. The public high school had about 1,200 people in the three grades, 10th, 11th and 12th. It was a fairly large high school, but it was very rural.
Did you have siblings?
I have an older sister.
Have you told her that you're HIV positive?
Yes, well, I told her -- it was probably in the late '90s.
What was her reaction?
She was quite upset. We don't talk about sexual orientation because she doesn't approve, but she's a nurse. She's also, I'd like to say, very conservative.
I was visiting her in her home in North Carolina and decided that it was time to tell her about my having HIV, and expected that since she was a nurse, she would be more supportive than she was.
But she said, "Well, I'm not surprised, because of your lifestyle." It just was not a very supportive environment.
Did your relationship with her change at all after you told her?
We were never really close. [Laughs.] We're probably less close now than we've ever been. It's unfortunate. We talk about HIV occasionally now, but nothing ever major.
Did your parents ever know you were gay?
Yes, they knew, but, again, it was conservative, rural Ohio. They were German. You don't talk about it -- it's uncomfortable for them. [Laughs.]
Did you just tell them you were gay and then you never discussed it again, or did they guess?
At some point -- it was back in the '80s -- I decided that it was time. I was an adult and they needed to know because it was just a part of me. We were close but, again, it was the type of thing that, once I told them, I don't know if we ever discussed it after.
Did you tell your sister at the same time?
|Gary at a wedding in the late 1970s.|
Does your sister live near you now?
No, she lives in North Carolina. She has for years.
Is she still a nurse?
She's retired now, actually.
Does she have a big family?
She has three children.
Do you think there are still a lot of people out there who can't -- or don't -- talk about their HIV status, or reveal it to their families?
Yes, I do. It's like coming out a second time, because if you're gay and you have HIV, there are two things that you have to come out with. I think it's just as difficult for some people to discuss it with family and friends. Friends are probably easier because of the gay community and the HIV community, and the awareness in that.
The general population knows HIV, but they don't know anybody that has it, or they may know someone but it's just a distant type of thing. Then there are others who do have family members or friends of friends who have HIV, and that's why they're aware of it -- because it has affected them personally on some level. I don't think that people who haven't had that type of connection are generally involved in or aware of much about HIV.
Dating and Loss of Libido After Prostate Cancer
Switching gears a little bit: After Thom passed away, when did you start dating again? What was the process of getting to that point?
It's still something I'm dealing with. [Laughs.] I've had several relationships since then, but nothing very long or very serious. It's hard to compete against a ghost.
Thom was my soul mate. It was a wonderful situation. I haven't really been in a very long-term relationship since then. I know I need to move on, but I just never have been able to that much.
I was diagnosed with prostate cancer in 2001. Part of the treatment that I went through was the radioactive seeds, which pretty much destroyed the prostate gland, which is where the testosterone is produced and that type of thing. Without that, there isn't much of a sex drive.
Since then it's been kind of, "OK, well, maybe I can really get myself up for this if I try." [Laughs.] I can't take any testosterone supplements because testosterone doesn't feed prostate cancer, but it helps it grow. I haven't had a date in probably four to five years, at this point.
You never know if the equipment's going to work or not. [Laughs.] That's part of the problem.
Has that been stressful for you at all?
Yes. It's something that's very hard to deal with, actually. I'm 60, and so maybe my sex drive has lessened because of age.
"At one point, I never thought I'd live to see 2000. I blew past that and then I thought, 'Well, I'll never live to see 50.' I blew past _that_. \[Laughs.\] Now I'm 60. And it's 2009. My T cells are at 400 and viral load's undetectable. I should be around for another 10 years. \[Laughs.\]"
I'm optimistic that at some point maybe I'll meet somebody that just really blows me away. That's kind of the feeling I have, but it hasn't happened.
Optimism is a wonderful thing.
I think it's important, having that. I've dealt with depression. At one point, I never thought I'd live to see 2000. I blew past that and then I thought, "Well, I'll never live to see 50." I blew past that. [Laughs.] Now I'm 60. And it's 2009. My T cells are at 400 and viral load's undetectable. I should be around for another 10 years. [Laughs.]
[Laughs.] There's a lot to be optimistic about, it sounds like. How did you cope with depression?
I've had counseling and also medication. The combination basically works.
Connecting to Care for Prostate Cancer and HIV
Since we are talking about health: How have you found the different HIV/AIDS specialists that you've worked with over the years?
In Detroit, I just went to my regular doctor, who was gay, specialized in HIV/AIDS and just had gay clients.
When I moved to Cleveland, I asked several of the HIV/AIDS organizations around there who they would recommend, and they recommended that I go to University Hospitals, which is part of Case Western Reserve University in Cleveland. That was a very top-notch hospital, so I was very fortunate to have gotten into that type of medical situation there.
When I moved to New York in 2000, I found my doctor through the AAHIVM [American Academy of HIV Medicine], and also through work -- I was working for Community Prescription Service, which was based in New York. Then when I came here, it was just through references that I knew of the doctor that I wanted to use here in Fort Lauderdale.
What have your relationships been like with your doctors? Do you feel as if they listen to you?
My doctor in New York knew enough to listen to his patients, and to hear what they had to say. He knew my background also, so he knew I was involved with medications. At that point, I was working at Community Prescription Service. I was actually running the company after Stephen [Gendin] had passed away. We worked together. That's how I approach it now. I really want to work with my doctor and not just blindly do whatever he or she says.
In 2000, you moved to New York. Then in 2001, you were diagnosed with prostate cancer. Can you talk a little bit about that?
Yes. It was kind of weird the way I found out. I would have symptoms like I had an STD. I would have a discharge. There was one point where I said, "Well, that can't be, because I haven't been with anybody in a month." [Laughs.]
I went to the doctor and they would do a test and they would say, "There is no STD, but there is some type of infection."
They'd give me an antibiotic and it would clear it up. This went on a couple of times. At one point, the doctor said, "Let's make an appointment with an urologist." I went to see the urologist and that's when he did an exam and felt the prostate and felt a little bump, and said, "It could be a cyst. It could be prostate cancer, but we need to take a biopsy." That's when they did the biopsy. And the test came back positive again.
Where did you go for your care? How did you make decisions about what to do?
I was working at TheBody.com at the time. [Gary was part of TheBody.com's staff from 2001 to 2002.] The prostate cancer diagnosis really rocked my world because I'd become accustomed to living with HIV and was doing well with it. Now it was another serious thing that I had to deal with.
"I was only 51 years old when I was diagnosed with prostate cancer. Most men are diagnosed with prostate cancer in their 70s or 80s. They're older and they do exactly whatever the doctor tells them to do. Well, I wasn't that kind of patient anymore. \[Laughs.\]"
Through the research I had done, I knew that Harvard had a very good HIV and cancer specialist doctor [Bruce Dezube, M.D.]. I had found out about that through TheBody.com. I went to see him and got some advice from him. Then when I came back to New York, I met with my urologist.
It's strange. I was only 51 years old when I was diagnosed with prostate cancer. Most men are diagnosed with prostate cancer in their 70s or 80s. They're older and they do exactly whatever the doctor tells them to do. Well, I wasn't that kind of patient anymore. [Laughs.]
"He was used to his regular patients just saying, 'OK, yes, doc, whatever you say.' I would question him and challenge him and say, 'Why do we need to do _that_?'"
I had this doctor -- he was an older doctor and dealt mostly with straight men and prostate in elderly men. I came in and I had already been to this specialist at Harvard and I knew what treatments I should do. He didn't agree with some of them and I said, "Well, that's what I want to do." He would get a little upset with me. But I said, "No, that's the way I want to approach the treatment."
He was miffed at certain points because I wouldn't do exactly what he wanted me to do. He was used to his regular patients just saying, "OK, yes, doc, whatever you say." I would question him and challenge him and say, "Why do we need to do that?"
One of the doctors that he referred me to, a surgeon, wanted to go the whole route of removing the prostate and then having external radiation, and there were all kinds of hormonal treatments and all of that. I said, "No, I don't want to do that." I knew that from the research I had done, also from what I had found out when I had my consultation at Harvard.
What this surgeon had recommended was unnecessary, especially with my case. I was diagnosed very early. The cancer had not progressed very far. Prostate cancer is a very slow-growing type of cancer, so there's actually even a watch-and-wait type of approach where you don't do anything. You just monitor it.
But having the HIV complicated matters and I felt that that wouldn't be a good approach. You just don't know how your body's going to react to things. Also, living with cancer in your body is kind of a mental thing that you have to deal with. It would be something that'd just be hanging over me all the time. So I decided, "OK, I want to get it taken care of. Let's do it."
They implanted the radioactive seeds into the prostate. At first there really aren't any problems from it, but as the radioactiveness of the seeds inflamed the prostate and started killing the prostate, which also killed the cancer, it inflamed everything in that whole area. After about a month is when, really, the bad part of it started, and the pain and all of the discomfort from that.
I'm going to get a little graphic here; there were times where I actually had to lie down on my back in order to pee. I would go into a spasm because it felt like I was peeing fire and barbed wire and gasoline all at the same time. I would go into a spasm and I'd stop and then it would make it worse. So I would literally have to lie down on my back and get a cup and try and relax enough that I could relieve myself. Having to deal with that was really difficult.
But I had a very good support group at the time too. I was involved with a prostate cancer support group for gay men in New York. That was a once-a-week meeting. That was helpful. There were a few others in the group that had HIV, but most didn't. But, again, it was a support group and it was helpful.
How long did your prostate cancer treatment last? For how long were you in this very intense pain?
It was about a year. It would come in waves. Sometimes it would be worse than others. It also depended on what you ate. I couldn't eat any foods with acid because that would inflame it more as you urinated. Alcohol was also not a good thing. [Laughs.]
There were things that I had learned not to do and not to eat or drink, like grapefruit juice or tomatoes. You really had to watch your intake. I would go, "OK, yes, I think it's getting better. It's not quite as bad as it was last week." Then the next week it'd be just as bad. But gradually, over time, it did lessen.
The first month was fine. Then starting after that month, probably the next six months were the worst period. Then it gradually got better over the next six months. It was about a year that I had to deal with the pain.
It sounds as if having these two major diagnoses -- two major illnesses -- was overwhelming for you. How did you deal with that feeling?
That was a hard one because I had come to grips with living with HIV. I was OK. And then I hear I have cancer. Of course that brought back Thom, him dying of cancer and all the feelings that went with that -- it terrified me.
Part of my problem was I educated myself too fast on it and learned too much too quickly. There isn't the support information out there for prostate cancer that there is for HIV/AIDS. It's mostly older men who are involved with it. Most of the older men don't deal with it themselves. It's their wives who deal with the information. It was a totally different demographic in the information that was out there than there is with HIV/AIDS. Some of the information was old or it wasn't quite as accurate as it could have been. I really scared the hell out of myself one day. I remember just learning too much too quick and not being able to process it in a good enough manner.
At that point I then said, "OK, I've got to back off a little bit. Just kind of let it go and deal with things as they come." And that's more or less how I adjusted to living with the dual diagnosis.
Can you remember what happened specifically in that moment, that turning point when you said, "I'm taking in too much of this information"?
Yes, I remember reading something about, "Ninety percent of prostate cancer comes back within 10 years." And, "It's medical castration." All this other stuff. It was just too much information overload trying to figure out which treatment was the best. I thought, "If that's the case, maybe I should have the prostate removed."
Where was the support group for gay men with prostate cancer?
It was through St. Vincent's Hospital. That's actually where I had my cancer treatment, and the surgery done. The outpatient surgery was at the St. Vincent's Comprehensive Cancer Center. It's in Chelsea [a neighborhood in New York City].
Did your specialists ever think that your having prostate cancer at a somewhat earlier age than people usually get diagnosed might be linked to HIV?
They haven't really ever found that that's the case. However, I was on testosterone because my testosterone levels were low and I was taking the cream. It's been shown that testosterone feeds prostate cancer because the prostate is where a lot of the testosterone is created. There is the possibility that because of the testosterone that I was on, it may have come on sooner than it would have if I hadn't been on testosterone. But there's just absolutely no way to put a link between the two. It was also very early in the stage of growth. The doctor could hardly tell it was there, that there was a little cyst, that little bump. There wasn't any major growth or anything at the time.
How's your health now? How often do you go in for checkups?
I go in every three months. I was just there recently and T cells were around 400 and viral load's undetectable. Most of my doctors say, "We're just kind of monitoring and we'll deal with things as they come up." But usually nothing comes up. My health is generally very good.
Excellent. Is your cancer still under control and in remission?
Keeping Healthy, Following New Paths
What else do you do to keep healthy? Do you exercise or do you eat healthily or anything like that?
I only live about a mile from the ocean, so I try to get out there as much as I can, maybe at the minimum once a week. I like to take walks in the sand. That's good exercise.
Do you swim at all?
Yes. I'm also very careful about what I eat and my diet.
There's a history of heart disease in my family. Back in my early 30s I eliminated salt, and since then I've been very conscious of having a heart-healthy diet.
How's the heart condition shaping up?
It's called cardiomyopathy, which is a slow thickening of the heart muscle, which could take 20 years to develop. It was recently found, because I'd had some lightheadedness and the heart wasn't beating quite right. It's nothing that is life threatening currently. I mean it could take, like I said, 10, 20 years before it develops into anything. Eventually, it could get into congestive heart failure because the heart couldn't pump enough, but at this point, I just have to try and keep my heart level below 120. There really isn't much else I can do.
When were you diagnosed with cardiomyopathy?
That was a year and a half ago. In the history of my dad's side of the family, no male ever lived past 65. They had all died of heart attacks before 65. My dad's first heart attack was at 58. But he lived to be 85. [Laughs.] He was the one exception.
Both his brothers passed away early. His father was 56 when he passed away. The family was very aware of heart conditions and heart situations, so I've always been also.
Was it a preventive measure to cut salt from your diet when you were 30?
Switching gears again: I know that you live in Fort Lauderdale, Fla. How long have you lived down there?
About two and a half years.
|Gary at his graduation from the Institute of Culinary Education in 2006.|
|A new dessert Gary created -- sweet puff pastry, peaches and strawberries.|
Did you move there straight from New York?
I was working at POZ Magazine, but had always been interested in baking and cooking. I decided to go back to school. I left POZ and I went to the Institute of Culinary Education in New York. I graduated from their pastry and culinary arts program. I had wanted to open up my own shop, and I always planned on retiring in Fort Lauderdale. I thought, "Why do I have to wait until I retire to move to Fort Lauderdale? Why don't I just move there and buy a shop?" Which I did. [Laughs.]
Unfortunately, about a year into that was when I was diagnosed with a heart condition and it was not something that I could continue. Even though you don't think of a bakery as hard work, there's a lot of hard work. [Laughs.] We baked around 300 bagels a day. It was just something that I wasn't able to continue. So I had to sell the shop. That's when I went back to work for POZ.
It seems that, except for the bakery, you've stuck with working in HIV/AIDS in some capacity. Do you ever get tired of talking and thinking about HIV/AIDS?
I think that was part of the reason I went back to school and studied pastry. You do run into a little bit of a burnout, but I'm not anymore. I had a couple of years off. I guess maybe that was what I needed.
It's such an important part of your life. It's important that you maintain information and your knowledge base about how to deal with HIV and the side effects.
As I'm aging, too, that's another aspect that's becoming something that people are paying more attention to now, as people with HIV are aging and surviving. What does aging and HIV mean, in combination? What are you going to have to deal with? What are the effects of aging with HIV?
I think that's an important new direction that studies are going into now, because those of us that have survived and are HIV positive are getting older. As you get older, you have health problems anyway. But researchers are trying to learn more and more about the effects of getting older with a weakened immune system, how that's going to affect that process.
Turning 60: Aging With HIV
Do you ever encounter any ageism, whether within or outside the HIV/AIDS community?
As you get older, you're not as desirable. I don't mean in all aspects of employment and society. I have found that people defer to me a little bit more, now that I'm older. [Laughs.] But society is so geared towards youth. I'm not old, but 60 was a big year, this year, for some reason. It bothered me. [Laughs.]
|Gary (second from the right) and his friends, celebrating his 60th birthday in Fort Lauderdale, Fla.|
Can you talk a little about that?
When you're growing up, 60 is old. [Laughs.] But it's not that old when you get here. I still feel like I'm in my 40s or early 50s. I forget that I'm 60. I'm glad I'm here. I never thought I would be here.
At the birthday, I said, "Good. I'm celebrating. I'm 60. I made it to 60. I've lived these years. I never expected to be this alive at this point." But then it's a double-edged sword. [Laughs.] Because, "Oh, I'm 60!"
Did you have a party? Did you celebrate your birthday?
Fort Lauderdale, and Florida in general, has a reputation for being full of beautiful, young people. Have you ever faced any ageism specifically down there?
I've been very surprised with Fort Lauderdale. I thought it was a very youth-focused culture, but it's not. Actually, a lot of older gay men have moved to Fort Lauderdale. It's actually quite enjoyable because there are a lot of people here who are my age. There's also the young crowd, but there's quite a large community here of 50-and-older gay men and HIV-positive men.
I didn't expect it. It was something that I hadn't thought about, but if you think about it, people come to Florida and retire. [Laughs.] You know?
|Gary, dressed up in "leathers and feathers" in front of rainbow Pride flags for the "Wicked Manors" Halloween 2009 celebration.|
Did you know anyone in Fort Lauderdale when you moved?
Yes, I had some friends here. I'd vacationed here for years and had several friends that lived here.
Is that how you found the larger community that you've gotten involved with? How did you meet people?
Through the shop I met some people, and through my friends, and just socializing. I got involved actually through an openly gay candidate who was running for mayor of Fort Lauderdale. He was a customer of mine at the shop that I got to know. I volunteered on his campaign and made pastries for the community meetings we had every Saturday morning. I got involved in that and met some people through that.
Lessons Learned in Living With HIV
Nowadays, how do you decide to tell someone that you're HIV positive?
It depends whether they need to know.
I'm very open about it. I think everybody knows. I don't know if I've come out and told everybody, but I just kind of assume that people know at this point. In business situations, it depends on the situation.
With my bakery, I did not make that public knowledge because there's still some stigma associated with that, as far as people coming into that type of situation. My shop wasn't in Wilton Manors, which is the gay community. It was in Fort Lauderdale, and Fort Lauderdale's very open as far as a society goes. There really isn't a problem, but I just didn't feel it was necessary to have that out as public knowledge in my business.
Who would you consider someone who needs to know?
Someone that I'm dealing with on a regular basis in more of a social situation. If it's a job, it depends on the type of job. Several jobs that I've interviewed for, I've been open about it. Others I haven't. It's on an individual basis.
Thinking back on all the years that you've been living with HIV, what's the best response you've ever gotten from telling someone that you're HIV positive?
I don't know if there's ever been a best response. [Laughs.] It's not something that generates a good, positive discussion.
I've always had good support, most of the time, other than from my sister. But I think that it's just really a situation where people are more aware of HIV/AIDS. But I still find that if they're not affected by it personally, they don't know much about it.
What about a worst response, or least supportive response, you've had to telling someone?
Probably from my sister.
Have you ever felt a lack from not having that support from your family; or do you feel as if you get it from other places and from chosen family?
I feel like I get it from other places. I mean it was my choice not to involve my parents with it. That was something that I decided. I did expect more support from my sister, but you never know. But I've had very good support. Especially since I've worked within the HIV community -- that's very liberating and very empowering. Living with the disease and then also working in that arena, you find out a lot more than you would normally do. That's been a part of my good support group.
What do you think are the biggest issues in HIV today that need to be addressed?
To me, the most important message that we still need to get out is that safe sex works and that unsafe sex doesn't work. It's not just a manageable disease. It's not like diabetes. There are a lot of things that you have to deal with. Just the physical cost of it. Even if you have insurance, you've got co-pays, you've got your doctor's co-pays, you've got your pharmacy co-pays, which could add up to a couple of hundred dollars a month. Financially, it's not something that's just an easy thing to deal with. Then physically and mentally, dealing with living with the disease and the side effects of the medications and being susceptible to a lot more things as far as opportunistic infections, you have to be very careful about that.
"When I find out that somebody was just _recently_ infected, in my mind, I'm going, '_Why_ did you put yourself in that position? You _should_ know about it. Why weren't you being careful? Why weren't you practicing safe sex?'"
I think that people who just look at the fact that, "I can just take some medications and then I'll be able to live with it" -- well, that's not true. You enter into a whole new world when you find out you're HIV positive. It just totally changes your life. That's the biggest thing to me that still needs to be worked on, and it's something that's been going on for decades now.
What do you think can be done to get the word out? What more do you think can be done?
I think it's a constant effort that just can't be let up.
When I find out that somebody was just recently infected, in my mind, I'm going, "Why did you put yourself in that position? You should know about it. Why weren't you being careful? Why weren't you practicing safe sex?"
I just can't understand, with all the information that's out there, why people are still getting infected. But I guess that goes back to the same point that there isn't enough information out there. People are still getting infected, even though everybody's aware of HIV. I just don't know that the message has gotten out strong enough. I don't know how else it can get out any stronger. When you're young, you think you're not going to get anything. You're impervious. But yet, it does happen.
I don't have any answer. I don't have a solution other than just constantly, constantly getting that message out there.
Can you compare how you feel about having HIV today to your feelings when you first found out that you were HIV positive? What are the differences there?
At the time, I just totally shut it out, didn't pay any attention to it whatsoever. Now I'm completely the opposite of that. I try to learn as much as I can, keep up to date. Any time I have an opportunity to learn something more about it, I do. That's just part of being very proactive in your own health care. I would hope that that would become a model for people with other diseases; they need to become more active and more participatory in their health decisions.
"You deal with what you have and you live with your circumstances. That is what your reality is. I don't know what I would have been like without HIV in my life. I would much rather _not_ have it in my life. \[Laughs.\] But it's part of what I am."
Jumping off of that response, how do you think having HIV has changed you in other ways? How has it changed your life?
Wow. I don't know what my life would have been like without HIV. I would never have been involved in the work I've been doing. I know that. I would probably still be living in Ohio. [Laughs.] But I don't know.
It's kind of like the butterfly effect. If you change something, then you don't know what your other reality would have been. It's really hard to speculate as to what my life would have been without HIV. It certainly hasn't been a blessing, but I certainly haven't been a martyr to it either.
I think that part of living with HIV and dealing with it is what you become in your life. You deal with what you have and you live with your circumstances. That is what your reality is. I don't know what I would have been like without HIV in my life. I would much rather not have it in my life. [Laughs.] But it's part of what I am.
With that we have to bring this interview to a close. Gary, it's been such a pleasure speaking with you. Thank you so much for taking the time to talk with me and share your experience.
This transcript has been lightly edited for clarity.
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