Ethnographers:
Rachel Statile
Sabrina Caban
Quote: “Life is good. I have no worries, no complaints, I appreciate things. I couldn’t stand the birds in the morning because they were waking me up, but now the cat and me, we look out the windows every morning at those same birds. Every little thing means something to me.”
Sitting in the corner of the McDonald’s on Albany avenue in Atlantic City, Cat spotted me before I spotted her. She walked over swiftly and embraced me for a big hug. “It’s so nice to meet you,” she exclaimed. She had baby blue eyes that shone with a rare joy. This innate happiness was in stark contrast to the topic we were about to discuss. She stood at what could not be more than five feet, two inches tall, and wore a big beige coat that went down to her mid-thigh. She sat down across from me at the table, keeping her coat on and gripping the surface in front of her with both hands. Her mouth turned up into a half-smile and she watched patiently as I pulled out my tape recorder. She began by telling me a little bit about herself:
“Well I grew up in Harrisburg, Pennsylvania, and I graduated in 1970, and I came down to Ocean City for my graduation week. WEEK. I never went home. My parents had detectives looking for me, and I didn’t show up to school. I was supposed to go to the New York School of Technology. I didn’t show up for school. Nothing. I met my husband-to-be and it was back in the day and it was lovely at the time. So I ended up staying...being an addict for decades is the reason I got HIV. I didn’t realize it until I really got clean clean, and that’s only been about four years…
But I really started when I was fifteen. Darvocet was really big back then, darvons. And my step-father worked at a prison, he would bring mad amounts of them home. And my mother was giving them to me for my period. Well I started liking them. So I was really addicted from a very young age, but not knowing, because you wouldn’t know--I was very active in school, I loved school, like going to all the museums in Washington, and I was a social butterfly. You would’ve never known that I was on Darvocets. So when I met my husband, Charlie, I started shooting drugs. I got right, I went from like darvons, shooting speed, to shooting heroin. I mean, I got into it at a young age, I mean eighteen is when I started shooting up.
I wore a lot of masks. I always had a job. I was never homeless, I always drove and I know people probably knew I always got high, but I just wore the mask and had jobs. I was one of the functional addicts.”
Despite using drugs for years and being able to maintain a functional lifestyle, Cat’s life was forever changed when she learned that her husband had contracted HIV. She describes what it was like to learn the news of his diagnosis at the beginning of the AIDS epidemic:
“I was surprised, but I didn’t think about it much because he was alright. He was fine. Now this was ‘85 when this was brand new. So we really didn’t think about it that much. So it was the late 80’s, people that we knew, upper class people, were dying. And relatives were dying. Then it started hitting us in the late 80’s, people like us. I would say, I don’t know what year, I think it was ‘86 or ‘87, they figured out that addicts were becoming HIV. Because in the beginning it was gays, LGB, whatever. It was bisexuals and gays getting it. Because they didn’t think ‘normal’ people got it…
Charlie’s sickness allowed me to be in denial about mine and worry about his. So in a way it helped me. And I remember always saying to myself, I never said it to him because I didn’t want to make him feel bad, but in my mind I was saying, ‘Oh thank God I’m not like this. But I’m going to be like this.’ But at that point, that minute, it was hard, taking care of him. But a point of it was ‘Thank God I’m not taking care of me. Thank God I’m not sick like he is.’”
Cat admitted that it was very hard to care for her husband in his late stages because she did not receive help from medical or rehabilitation facilities. The stigma against AIDS was so prevalent that she and other family members, not trained medical professionals, were forced to care for him:
“We tried to get my husband in a place in ‘91. He was full-blown in ‘91. The place isn’t there anymore...it was like a rehab center for people that were dying. They didn’t want him in there. They put him in there, but we had to go and take care of him. The nurses wouldn’t come up and take care of him. That’s how bad it was.
The only place you could go in the early days for us, which was really the late ‘80’s and early ‘90’s, was New York and California, where it was a little bit more accepting there. Because anywhere else, you had trouble burying your family, and getting them in places like a rehab. They didn’t want you. We were looked down upon. We were nothing.”
Cat learned that she was HIV positive only a few weeks before her husband passed away. She admits that the stigma she faced was overwhelming. She felt as if she has no one to talk to about her diagnosis or about how to cope with it:
“I needed help, but I was always the type [to say], ‘I don’t need help,’ but I really needed help then. I think that was one of the reasons I tried to commit suicide because shortly after...because after we buried [my husband], I moved from Montpellier back to Ocean City, that was ‘93. So that was a bad time then. That was a really bad time because I didn’t have a lot of people to talk to about it. Not even my family. I didn’t feel like I was schooled on it. I only knew what I knew because I had to take care of Charlie. So I knew what I knew prior to taking care of Charlie, but now Patty had it, and I was like “Fuck it.” That’s why I really wanted to commit suicide. I felt really alone.
Because with Charlie being sick, it was almost okay. I was mad he died on me....because he wasn’t there to share it with me. You know I kind of had a partner there, and he wasn’t there to share it with me. So I went through my head a lot where I got to ‘Fuck it’.
I was really pissed off that he died on me. I was kind of like, ‘Who are you to die on me? I need you now.’ So I thank God that [our shared experience]only went on for a couple months, as opposed to a year, because I may have found a better way to kill myself. So, things happen for a reason. Good, bad, and indifferent.”
Cat explained how, despite living with HIV, she was not eligible to file for disability because she did not meet the T-cell requirement to be considered to have AIDS. In her eyes, and in the eyes of medical professionals, she was not “sick,” like someone with AIDS is “sick.” She described people living with AIDS as simply just “AIDS,” as if the diagnosis became a significant part of their identity. She describes herself in the same way when discussing her HIV diagnosis:
“I had trouble getting SSI because I wasn't sick, so I continued working. My T-cell count was a little over 500. But the big thing back then was if your T-cell was 200 or below, you were automatically full-blown AIDS. And in fact, until this day, the folks that were AIDS [are still considered to have AIDS], even though they are taking medication and their T-cells went up and medication is on their files. They still never take that [diagnosis] away from them, they’re still [considered] AIDS. Like once you were AIDS, they think you can go back into AIDS cause you were there once before. Because once you're AIDS, you’re full-blown.
I was smoking crack until 4 years ago and i've been HIV for 27 years. Go figure.”
Even though she has been HIV positive for almost three decades, Cat still feels like she cannot relate to a lot of other people who are HIV positive because she has never been on medication to control her illness. She describes what it feels like to be sick, but not recognized by those around her as “sick.”
Everybody is bitching about meds, and I’m going to groups and I’m not bitching
about meds, so I’m starting to feel--You know when people die and you feel like you should’ve died and you have like a guilty living thing? Well I started feeling guilty for not being on meds.
Because I was seeing my people sick, you know. But a lot of them now are on one pill a day. The only thing is a lot of side effects with these HIV meds. Lots of side effects. But they’re taking like one pill, and they’re living. It’s great.
[My doctor] said ‘I don’t ever want to put you on meds.’ She said what they’re looking at now, I don’t know if it’s FDA, I don’t know if they approved it yet, but once a month, you get an injection. That’s what she’s hoping for me. She said ‘I can see you doing that.’ But she doesn’t see me getting on meds anytime soon. I know, it’s like, I have no complaints.”
Cat ultimately views her HIV diagnosis as a positive thing that has changed her life for the better:
“Well I started getting therapists. I needed help with my mind, my soul, my mind, everything. And I started utilizing therapists and listening to therapists and learning to live in the moment as opposed to thinking ahead and making sure of what I’m doing tomorrow. I don’t live that way today. The best thing I ever did was learn how to live in the moment and be aware of myself. It was such a process though, ya know? And I learned to live with Patty.
My personality helped me through things. I never shy and I speak up, I may have been a mess on any given day with my addiction, but when I had to get something done, it got done. I was never homeless or anything, when I became HIV the people at IHD hooked me up and because of the timing there was money to help people like me, from The Ryan White funds. It was afforded to me. Everything came to me easily. Luckily again. Life is good. I have no worries, no complaints, I appreciate things. I couldn’t stand the birds in the morning because they were waking me up, but now the cat and me, we look out the windows every morning at those same birds. Every little thing means something to me. Everything has meaning and I enjoy it and I stay in the moment and I always tell people when they are stressing, ‘stay out of the war zone’ (She points with both index fingers to her temples on each side of her head). Learn to stay in the moment.”