Gordon Fleming – HIV/AIDS

“He was HIV positive. He didn’t tell me.”

I’d been tested [for HIV] since they started doing the testing here in Spokane, so three years or so before [I was exposed in 1987]. I’d had at least three negative tests before. I hadn’t had a whole lot of partners, but I was still sexually active, so . . . [Then] I got involved with my first leather man. We were in relationship for—God! This was one of the short ones: nine months. From January through September. He was HIV positive. He didn’t tell me. He deliberately exposed me and didn’t tell me. As well as coaching me, kind of, along the way, like, “What would ever happen, if you actually were positive, and . . .?” [He’d suggest we’d] sell all of our stuff and move to Seattle where they’ve got drug testing going on.

We started going out just after New Year’s in January. I got sick in July. I’ve always been a real healthy kid. I only get sick like once or twice a year. I was sick long enough that I actually made an appointment to go in and see my G. P. It had gone on for better than two weeks. I was dealing with night sweats and just the initial onset. I was just sick. I wasn’t feeling good for almost three weeks while this first round came through. I knew something was going on with me chemically, because my body odor changed. Like night and day: dramatically changed. I knew I was sick. You know, you’re getting rid of toxins and stuff when you’re sick, but it was very odd to me.

I’d already had a negative [HIV] test in the spring. When I went in to see the G. P. in July, I demanded that he do another test. I said, “Something is wrong.” He goes, “Well, you just had a negative test. You’ve been with the same person since January. It’s very unlikely that anything’s even changed, let alone what it would tell us.” I was like, “Okay. Well, you’re not listening to me. I’m not going to leave the office until you take another blood draw.”

This was horrible. He called me on a Friday night at 5:00 and told me, over the phone, that my test came back differently than it had before. Then he hung up and went on vacation for two weeks. I was not a happy camper. I was a little strung out. He told me that they wanted me to come back in for a new test. They’d send that one out for a Western blot, rerun the original. Those all three came back homeruns.

What I felt horrible for . . . When I went into the doctor’s office for the Western blot [results], my doc was still gone. This little old fart he had filling in for him—I don’t know if he was retired, but he was a gray-haired, old doc—who got to come in, and hand me my confidential letter, and say, “I’m sorry.” And then turn around and leave. I was like, “Well, I feel bad for him. It’s not like my day has been fucking great either!” I can’t imagine doing a fill-in job and have to come in to a 26-year-old and hand him that envelope. I was definitely bouncing off the walls. Of course, [my partner] had convinced me that it was a false positive. Or was working on it. When the rest of the confirmatory tests came back, he was still working on it, but he was having a harder time trying to convince me of it. We had a huge fight over Labor Day, so we broke up. He had moved in with me in June. We broke up in September. I ended up moving back home with mom for nine months, and spent a year there trying to regroup again.

God, back in the ‘80s [being HIV positive] was the death sentence! People who found out they were positive died. Fast. My saving grace was I wasn’t sick to start with. We knew exactly when I had tested positive. I hadn’t been positive for a long time without knowing it, like a lot of people had who were sick and died. But that was even before AZT. It was some scary shit back in ’87. I got referred in to see [Doctor] Dan Coulston. I saw him in September.

Since I’d never been sick much as a kid, I had never really dealt with doctors, hospitals, nurses, lab work. Had to get over that one in a big hurry, finding out I was going to have to get siphoned and get lab work done on a routine basis to make sure I’m still healthy and doing okay. I started out . . . it was yearly to start with, in the old days. [Sighs.] Once a year. That was nice. That only went on for two years. Then my [T] cell counts dipped to below 500, twice. I had one at 499, and I had one at 502.

That’s when I started doing AZT. I believe that was in 1989. Oh God! It was horrible back then. It was so toxic because they were giving us way too much of the drug. For me, each AZT tablet had to be taken with one Imodium. [AZT] was horrendous for diarrhea. The only way—in the early years—that I could control it was a one for one. One Imodium, one AZT. When I switched down to three AZT a day, I switched down to three Imodiums. I discovered later on, that’s my body’s reaction to everything: shitting my brains out. As unglamorous as that is. I discovered it dealing with the antivirals. They’re worse than antibiotics for me, as far as how my body reacts to them. It’s fairly common.

They [didn’t] know shit about HIV at that point. [In] the early days of AIDS, they were busy learning how the immune system worked, versus finding out what the hell the virus did. They didn’t know much about the immune system to start with. When [AIDS patients noticed that their] fat stores started moving around [some doctors] thought we were lying. I was like, “I weigh 185 pounds. I have since I’ve started seeing you. My pants’ size is four inches different! If I weigh the same, things are moving.” Still, since there was only one other disease before this that moved the fat stores around. They thought we were crazy for three years. Then, of course, they came up with this huge name for it: “lipodystrophy redistribution.”

Oh God. The old days. There was something called egg yolk lecithin, from the ‘80s. It’s horrible. This lovely yellow stuff with chunks in it that you’re supposed to try and gag down. I don’t like eggs, so I had real issues with it. It was the most disgusting thing I’ve ever done as far as any of the natural treatments. It’s just gross. Followed second only by wheat grass [gagging sound] as a smoothie. Green grass. It [tastes] like green grass in a jar. It’s really not good. Plankton was way above the wheat grass. There were no drugs at that point, so [vitamin supplements were] our gambit. I did a lot of vitamin supplements for seven years, until I started doing a three-way drug combination. I couldn’t afford [vitamins] after that anymore. The supplements I was taking were running like $200 to $300 a month. [When] I started doing a three-way drug combination, I couldn’t afford to keep doing the supplements. I don’t qualify for the programs [to get free vitamins] because I make too much money. They don’t count how much I actually spend. [Laughs.] Therein lies the problem. The co-pays for my drugs are $240 a month. That’s not doctors’ office calls or anything else. That’s just my part of the co-pays.

Luckily I have insurance through work. If I didn’t have insurance, I’d definitely not be as healthy as I am now. Or even still here. I’ve been HIV positive for 25 years. I have other medical conditions I’m dealing with. The drugs I take now are $37,000 a year. I’m not on anything new. I don’t qualify for anything new. I’m too healthy. My cell counts are too high. They won’t let me go on any of the really new, cool, cutting-edge drugs, because I’m not sick enough. But considering my drugs are $37,000 . . . They only go up [in price], they don’t come down. The only drug that’s ever come down in price was AZT. Thank you ACT UP. No other drug has ever come down in price. Each drug that comes out’s more expensive than the last, pretty much seems to be the pattern. I’ve been with the same employer since before I was positive, so I didn’t have to worry about losing my insurance that way.

[Being HIV positive] changed how I lived day-to-day. You don’t put off things that you need to tell people. You tell people that you love, that you love them. I tried to get rid of any extra chemicals, toxins, any kind of that stuff that I could get out of my life. Went over and started doing natural fibers, wood furniture—anything I can think of to get rid of as much chemical pollution as I can. Started doing filtered water. Got air ionizers for the house to clean the air. It changed my conversation with God dramatically. Angry for a while! [Laughs.] You go with all the stages of death, dying, and grief: bargaining, and changing your views. I got back involved with my own religious research. I’ve dabbled in—or researched—a bunch of different religions over the years, which didn’t really lead me anywhere. Nothing had really changed dramatically from the ‘60s forward. But it did change my talk with God and on a personal level.

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Source: Interview with Laura S. Hodgman, 16 March 2013.