Ethnographers:
Anna Vaccaro
Connor Bachmann
Walking into James’ house, one notices the “2000’s Pop Hits Playlist” coming from his iPad and the countless religious symbols and scripture quotes decorating the living room and kitchen. Soon, James’ wife comes down the stairs and into the kitchen, introduces herself and sits next to James at the kitchen table. This comes as no surprise as James’ story recounts how his wife has never left his side throughout his diagnosis and rehabilitation.
My wife was there with me and then she had to be tested too. The doctor...he just said, “you’re AIDs positive.” She understood that for better or for worse. It wasn’t like I needed it, but it was certainly helpful.
James begins his story recounting his diagnosis.
In ‘95 I was diagnosed with AIDS. I was 30-something years old. I couldn’t sleep so I went to the doctor and that’s where it came out. I wasn’t sick; I just couldn’t sleep, and insomnia is kind of normal. At that time there was an epidemic. From there I went to a specialist, and she told me based on all the evidence from my T-Cell count, I probably had about 14 to 18 years. In the very beginning [I thought] “Why me?”. I don’t know, I’m not a homosexual. How you get the virus, it doesn’t matter. It’s only gonna weigh on you mentally. I did have trauma yeah that was in the beginning, but I went to a doctor — a psychiatrist. I went to a counselor, and we spoke about post-traumatic stress disorder which was what I was going through. I was reliving those things every couple of hours you know, and the fact is you just have to face those things such is life. You have to face them. It goes away. It gradually just stops.
James accepted his diagnosis in stride. His wife was proud of her husband when she noted that he never once complained.
Yeah, what else could I do? I’m kind of logical...No, I didn’t even think [about being HIV positive]. It wasn’t like I knew people who had HIV or AIDs, but I wasn’t hanging out with them. I worked all the time, so the only difference is when I used to go get drugs I didn’t buy locally. I would go to New York and shoot. I paid a dollar, [they] give ya a set that works and someone must have had HIV or AIDs whatever, and it took...not that it would make a difference cause once ya have it ya have it; I could’ve been treated earlier, but there was no medicine anyway. So, if I knew the first day I got it there was no medicine, there was AZT but that was poison to your system.
James dove into his disease, treating it like a problem that needed to be solved.
It was like post-traumatic stress disorder. It’s all I thought about, so I read as much as I could about the virus. I researched everything. So every time something new came out and [research] said “This was better,” I would bring it to the doctor, and she would look at it and she already knew about it. I was educated enough and she said “Look, you’re pretty intelligent about these things...” so she would give me this stuff that the rep would give her and I would read it and I would decide based on what I’m taking.
James learned that one of the best ways to regain his health was a proper diet and exercise.
[AIDS is] just something you have. Like, if you have cancer, you have to deal with it. What’s the best way to do it? You have to eat right, they all tell you that. Change your diet.
James, with the thought that he was going to die, took action for the end of his life.
I took six months off of work ‘cause I figure I was gonna die. So I put that in my head. The first thing I did was get my pensions, and I said “Look. I’m gonna take my pensions now.” That was the first thing I did. Then I had six months to a year to actually resign from work so thinking medically I have a year till I have to resign, so after six months I just got bored, like “Is this it?” Cause like after being retired you need a purpose to carry on in life, my purpose was not gonna be clean this house every fricken day. So, after six months I got so bored with myself and the pity party. Like ah, I’m gonna die. So I started taking another medicine that would actually help me sleep.
Bored with cleaning the house, James returned to work. But not without having to deal with the repercussions of confiding in a friend.
I was confident I had to work, and I was like I couldn’t sleep; it took me a while to get to a psychiatrist and knew what they were doing as far as medicine. My friend and I used to hang out, and he was the director of the department. I told him and some other guy,s and he told relations and before you knew it everybody knew; they’re friends, everybody telling everybody. I mean ya tell one guy, one person! But who’s gonna hold the truth like that? “Hey, James has AIDs” I was running into people I didn’t even know…”How do ya feel that ya have AIDs?” I mean it’s a stupid question. I didn’t say I have AIDs [I told them] I have Hepatitis C. That’s what I had to do for years, bumping into people who were just saying that. Didn’t even know the people! Then it made it difficult to work with people ‘cause you didn’t know what they were thinking. Then they wondered how I got HIV and some of them would ask me: “How do you think you got it? Was it sex”[I told them:] “No I used to use drugs like you did. The only way to stop the question is to get yourself checked.” It’s just a traumatic experience to have to face that, having people ask you questions. Were they compassionate about it? No, but big deal it’s work and eventually, that wore away, too. I could actually say I couldn’t care less what you think. Then I became shop steward and did very well so I became the shop chairman of the company. So [I] went to all the meetings and stuff for the management and they didn’t bother me, I didn’t bother them. I think I was battle-hardened from all the grievances. You just couldn’t talk to me whatever way you want, I knew my rights. Not just my rights with HIV, but I knew my rights as an individual working for a big company.
James went to two support groups after he was diagnosed, learning new things about AIDS and hearing others’ stories. However, he found it hard to connect with others.
I was there for me. I was there to get information. The information they were giving me didn’t apply to me at all. I didn’t care if your boyfriend or whoever left you and you’re lonely. Like, come on let's think of something different [to talk about]. Pretty much just the same people [at the meetings]. The one I go over to here at Oasis is mostly gay and um it’s hard to kick up a conversation with them talking about orgasms and what not you know? I’m not into it. [I’m] married like 45 years. Most of the people who go to these meetings never worked a day in their life. So, you don't work [and] you wonder why you’re poor and you don't have any clothes to wear. I mean, you need to buy food, you need money, and you can’t keep living off your parent’s money or blaming your parents saying “They didn't tell me this” ‘cause it would be nice if you did that but it doesn't work. And I guess it sounds like I’m not compassionate, but you have to be responsible.
James recalls his personal wealth that he worked hard for in spite of having HIV.
I’m a rich person by many standards. I own this house; I own that car; I have money in the bank; I don’t have any debt; I didn’t get that way by not working — I worked and built up my pension. I worked at a union and got a job that paid pensions — I chose that. Don’t say you can’t do this cause of HIV, no excuses.