Ethnographers:
Olivia Hurley
Melody Melody
Stacey Michel
In a pink hair net and scrubs Nick came out from behind some closed doors and sauntered over to the waiting room of Atlanticare in Egg Harbor Township. A tech worker transferring all hospital files onto databases, he had had a long day of projects, although energetic and friendly nonetheless. He was a confident speaker and radiated optimistic wisdom but it wasn’t always that way:
Diane will probably smile, she’s dead now because this lesbian told me one time you’re going to look back on this and HIVs gonna be a gift and I turned around being the cocky kid I was and said “Fuck you, you take this gift and tell me what you get from it “ you know, that’s how I was you know? Cause I was, first off I was pissed off that I was positive and she’s going to tell me something like that right?
In the beginning, it was-it was painful. You have to go through the steps before you reach a point of acceptance Plus I was being told I only had three years to live I was only 26-27 so the concept of dying at a young age didn’t ...(sighs) dying at any age wouldn’t sit very well but especially your age (chokes up) you know being someone so young and having such a bright future because I had worked through some obstacles [pauses] it taught me life lessons that I never really seemed to learn before like acceptance, the true meaning of acceptance.
Although a shocking and “devastating” moment it was being diagnosed with HIV, looking back it taught him the true meaning of words like, love, hope, and acceptance,
I intellectually can understand the definition of a word but to actually feel that word and to internalize it the word takes a whole new meaning. So, to reach acceptance with a fatal diagnosis because they told me I only had three years, I learned what the true meaning of “hope” is. I always knew intellectually what the definition of hope is but to actually feel it and have that be the only thing you can hang on to because that’s all I had. That’s the only thing that got me through. It’s the only thing that kept me- plus taking care of myself going to AA meetings and doing the things I needed to do. And I didn’t want to do it and [it] kept me from coming back to a former life of abusing and and all that stuff I just didn’t want to live that way either and the hope of actually surviving this disease. It changed me in that sense I took life a little more serious and I was like ‘wow this is like real shit’ you know? And this is happening to me how am I ever going to get through it? And [pause] you do. You get through it. It taught me “love.” Uh that somebody could actually love me for real, because when I was diagnosed at a very acute stage, when I was first diagnosed, I went from being this beautiful young man with all these muscles and got my head together. I’m no longer messed up on drugs and alcohol. I’m really going to fly. I’m going to go back to school. do all these wonderful things. I got this airline pilot that’s into me. [pause] I was very excited, but now this dirty filthy aids ridden person. And I hate to say that because I grew up with a lot of guys my age that I loved; that were dying around me. I guess I would never have admitted it to myself that somewhere inside of me I was kinda like “oof” I got AIDS and now here I am with HIV.
The first people Nick told about his diagnosis have him acceptance and support.
Kevin was my partner at the time, and we were together for like 26-27 years)he already knew)... and who was the first person I told? My mother. My mother didn’t believe it, and she didn’t cry because she told me years later she said if I cried you’d would have cried. And it would have made it worse. And she goes “I cried when you left.” So.. and that was a big fear for her, and I mean the whole gay thing was a big fear for her she was very accepting about it. My mother was very accepting and my father too so she was concerned about the whole gay thing of course HIV and AIDS was a big concern of hers and here her son comes home, with you HIV and she she didn’t bat an eye, she said ‘you’re going to be fine’ and you know she just held it together but she told me the truth afterwards. She watched me get married and she watched me recover from drugs and alcohol and she watched me go to school, she watched me get well ,she watched me develop a career, and build a farm. You know how to be happy and have a life so, to her that was the best gift. What mother doesn’t want to see her kid well right?
Nick spoke of how emotions fueled his decisions and his advocacy.
There are things that I’ve learned in life that will take you down, not just HIV, it’s the choices you make when you go through shit. You know? So back then, I had some great support and some options but I chose to let those people in and well, I don’t even know if it was a choice, I was in so much pain and they were my only relief and I didn’t want to go back to using drugs or alcohol and there was a conscious decision to go in that direction. Versus going into something negative so in that sense it did change me. It made me a better person inside in some respects and in some respects it made me angry, you know? I think that anger fuels advocacy work that I used to do. For the HIV and the LGBQ communities, which is a good thing. It was an outlet for me; it also helped me create or develop compassion for people that were positive and have a stigma, the LGBT community and just people in general.
The anger arose from the governments late response to HIV, which left the community with a death sentence.
Alls I knew was that it was going to kill me. Right? That’s all I was thinking because that’s all they told me from a year, let me see from diagnosis to death you have three years that’s what they said. Because that’s what they believed that’s what they thought. They didn’t know shit about the disease the gay community the gay men did know. They came up to me and they said what are your T-cells and I went to tell them, and they said ‘oh girl’ your T-cells are normal. ”I got two T-cells and I’m still walking, you know you’re going to be the second wave, your fine”well, I held on to that because that’s all I had.
Despite the tremendous support Nick received, there were still negative reactions.
My brothers told me to stay away from them I was an AIDS ridden faggot and they didn’t want me near their kids. That was a couple things um that did not shock me from my brothers I thought it was harsh but my brothers were harsh. I come from an Italian family in a tough neighborhood ...back then it was a different time, they were ignorant.
Although AA was a comfort for Nick, and key in maintaining his sobriety, AA was not free from homophobia or the trials created by the stigma of HIV.
What really shocked me and had an impact on me, I will never forget. So I’m newly in recovery and I’m trying to buy into the Alcoholics Anonymous (AA 12 step program). So, I’m in a meeting and it was a straight meeting, predominantly blue collared people right? This is where I learned to know your audience. So, I’m sitting there and I was maybe two or three months diagnosed and I’m trying to figure it out with the doctors and constantly thinking I was going to die (obsessive these thoughts) and I’m trying to maintain my sobriety. I would walk out like this is my church, feeling peaceful. So at the end of each meeting they say the lord's prayer. And everyone holds hands in a big circle. Well, I had shared in that meeting I was just newly diagnosed with HIV and I didn’t know what I was going to do and I’m thinking of dying all the time. Nobody held my hand. And then Arlene came next to me and she got in-between me and the other person. She held my hand. That was shocking. It shocked me because I expected more from these people. The bottom line is I had to remember we are not alcoholics anonymous because we’re well people (laughs) you know what I mean?
In spite of the stigma of HIV, Nick is starting to date now and his status doesn’t seem to hinder potential prospects:
I’m dating now nobody seems to give a damn about my HIV status. I always bring it up you know? Well, if I’m going to intimate with somebody I let them know. But I certainly am not going to go on a date and open up with ‘hey I’m HIV positive.’
HIV’s role in Nick’s life has resulted in making many changes in his life which may have saved him from a downward spiral in drugs and alcohol.
I look back and think ‘how did you survive all that?’ you know? I hear all my other friends that have been through different trials and tribulations weather it's cancer or a loss of a child or whatever the case may be. You go through it sometimes people say, “you’re so brave” and it’s like “no” (laughs) what else am I going to do? You know? You walk through it and the bottom line is you do have choices you-you can take a negative path and deal with stuff or you can take a positive, believe me it wasn’t easy. Doing drugs and alcohol and even just acting out and other bad behaviors would probably kill someone like me. So I am grateful I didn’t use alcohol and drugs because it would have killed me. I just wouldn’t have cared. And my liver would have went for sure. But that’s not what happened. I lived, and I’m 57 now and my life isn’t over by far, but I lived a little bit and looking back, oh it’s been a good life. So how did it change my life? Looking back in introspection [my friend Diane] was right, you know? It’s what taught me. I wish I could have learned the lesson in a different way, but it did give me a lot of gifts. And it did change me, I think in many ways for the better because I chose to change for the better. And not let it take me down.
Of Love and HIV
One of the biggest lessons that Nick learned was that love didn’t care if you were positive or negative, it had nothing to do with looks, it was just love:
“that somebody could actually love me for real, because when I was diagnosed at a very acute stage, when I was first diagnosed, I say acute because it’s just so, so, so so onset so right there I went from being this young, in my head beautiful young man with all these muscles and had my head together I’m no longer messed up on drugs and alcohol. I’m really going to fly. I’m going to go back to school. do all these wonderful things. I got this airline pilot that’s into me. I was very excited into this dirty filthy aids ridden person. And I hate to say that because I grew up with a lot of guys my age that I loved. That were dying around me and I guess it would never have admitted it to myself that somewhere inside of me I was kinda like “oof” I got AIDS and now here I am with HIV, not AIDS.”
Though his romance with the airline pilot didn’t last, he found Kevin and had his support for over 26 years, during which they found Nick was HIV positive:
“I had Kevin who was my partner at the time who still wanted to marry me, and he wasn’t positive. You know when I told him, you know when I was diagnosed “I said I get it if you don’t want to be around for this. I said ‘Kevin you know how horrible these deaths are, I would run” I pretty much put it like that [and] he flipped out on me and we stayed together. We bought a farm in Cape May county [and] we bought a house. I was still very healthy, still very strong
He felt like he owed it to Kevin to get tested, that he had gotten test for him and he felt that he needed to take that last leap of faith for him:
I can tell you there were many reasons why I didn’t get tested for years and at that time when I was with Harris there was no effective treatments. So, the thought in my community is why get tested? just stay monogamous What , are we just going to get tested to find out we were going to die in a few years? And it was a horrible death like I said so we would rather not know. Ignorance truly was bliss. When I met Kevin now I’m sober and I’m drug free alcohol free and Kevin’s negative the guy who I was with. So, it was my responsibility to get tested. At the very least to protect him. So, for once in my selfish self-centered child life, I thought of someone else and it’s like ‘oh I gotta get tested’ you know cause if I sleep with this guy or if we’re going to sleep together we need to know what we can do. What’s safe and what’s not and plus he needed the option to know whether he wanted to stay or not.
Nick did not know much about love before HIV, but now he feels like because of Kevin, even though they are not together now, back then he truly loved him:
I have to tell you something when I was that young…. when I was 26-27 I used to say I would never go out with anyone who was HIV positive. Not because I was afraid of catching the virus though that was part of it, a small part of it, but I was afraid of the life I would have with him. Going to hospitals you know.
watching him die you know all that good stuff all that stuff, I just didn’t want any part of it. So, when I met Kevin who I guess had more substance than me, and he decided to stay and believe me Kevin didn’t have to stay, he could have had any man in that city. He he stayed so I was impressed with that. I guess it was a test and looking back he truly did love me, and it was love back then. That’s when I learned about love. You know, it’s interesting and HIV gave me that. Looking back, you realize, and it makes me feel good to know I was loved like that. Now Kevin and I are divorced, and we get along really well or better but we still love each other. We’re just two very difficult people to be in the same house together.
Nick also felt a responsibility to tell his ex Harris about his positive status:
Of course, I had to seek out my ex Harris, before Kevin and let him know because that’s the right thing to do. So, I sought him out and he’s the one that gave it to me. I told him and he already had been tested so this just …..this little thing that sits in my crawl a little bit. I went to him and said so you’re just going to.[do nothing]? He didn’t bother seeking me out to tell me. I said you were just going to let me die from this? You know without any medication or treatment or whatever?”
Though he was shocked over his ex’s inaction in informing him of his status, he has made it a point to inform all of his potential partners of his status:
“Now in my community its commonplace, I’m dating now nobody seems to give a damn about my HIV status. I always bring it up with [dates]- especially if I’m going to sleep [with them]. Whelp if I’m going to intimate with somebody I let them know. But I certainly am not going to go on a date and open up with ‘hey I’m HIV positive' I got to like [them] first because it’s very personal to me”
Nick further explained what most HIV-AIDS positive people experience when telling potential partners:
“there’s a stigma to it. You know, um I don’t let it go. I just started talking about it at work, but I don’t talk about it too much at work because there’s a stigma attached to it. I don’t want it holding me back. Gay already held me back um so I’m careful about who I share information with.”
Though luckily Nick has had faced very little problems from his potential partners
“so, dating today like I said it has never impeated me. It-I never I mean if people have a problem with me being positive they’re not telling me, but for the most part it’s never got in the way and I thought it would. I’m always a little nervous when I tell someone, I um but it just hasn’t stopped [me]. unlike my other friend, Joe who it has. He said he has told people he was positive, and guys have just walked away from him. I guess I have been fortunate. that hasn’t happened to other people being rejected for that. [I have} before for other things like, I don’t like the way you look or fucking old or whatever the case maybe”
Nick has known the love and support of a partner who had helped him when he needed it most and had felt the obligation to tell his ex of his status when he did not receive the same, Nick has said HIV taught him the true meaning of love.
The Ambivalence of AA
In the small moments of quiet when Nick stopped to think of his answers, his knee had a slight shake. He wore his heart on his sleeve as he spoke of the ambivalence of his addiction and how AA both assisted him in his HIV battle but also conflicted with his journey.
(Hope) It’s the only thing that kept me plus taking care of myself going to AA meetings and doing the things I needed to do. And I didn’t want to do it uh and you know kept me from coming back to a former life of abusing and and all that stuff I just didn’t want to live that way either and the hope of actually surviving this disease, and believe me I don’t fall for the whole “grew up catholic they don’t like the gays” I don’t know if you know that. So religion wasn’t going to work for me. But the spirituality piece did. that helped me get through and I reached out for help versus going back to the drugs and alcohol. That’s the one thing I did know, I didn’t want to go back to living that life again. And I had enough sobriety behind me and knowledge about drug addiction alcoholism, not a lot but enough to know that I had a legitimate disease. And that was the one problem that would have killed me in the end had I gone back to it(drugs and alcohol).
AA meetings were a sort of sanctuary for Nick. During one of the most trying times in his life he found solace in these meetings, both in his sobriety and in his diagnosis with HIV.
The night I was diagnosed the first thing Diane did was take me to an AA meeting, a gay AA meeting and a bunch of gay men came up to me and they said what are your T-cells? Because I had shared(my diagnosis) in a meeting because you couldn’t share this outside of the gay community. There’s such a stigma with HIV AIDS and there still is. I don’t care what anybody says. But it’s still there.I had shared it in that meeting, and I had men come up to me after the meeting who had the disease for a while and some of them were AIDS and some of them were HIV. And they knew a lot because they educated themselves and I didn’t know shit.
However, there was also a bit of trouble Nick ran into in his AA meetings. After sharing that he was HIV positive in a meeting, nobody would hold his hand in the prayer circle at the end of the meeting; a big wake up call to the stigma and ignorance regarding HIV/AIDS.
As far as that guy in AA meeting that threw me off a little bit because I would walk into these meetings and all these people were sober and well and had these lives and you know they came back from the depths of whatever and I just had so much respect for them. I was living in a room and I was mopping floors in a hospital and I was HIV positive you know, so I kinda had a lot of respect for these folks. So when that happened I was shocked and then it brought me to reality too, I guess I was putting them on a pedestal. They were just people…. But there was this guy in an AA meeting talking about in all places, about the faggots that used to hit on him in prison. He’s the ugliest mother that I’ve ever seen I said I don’t care what cell you lock me into I would never touch this man. And he kept going “faggot this, faggot that,” and in my head I’m thinking you haven’t grown past that yet? What are you doing in this room? You’re supposed to be grown up and your talking like you’re on the street, talking like a 14 year old. I had turned around and you’re not supposed to cross talk and said, “Well this faggot... and he just looked at me and I made sure I spent time right next to him.
“I’ll be there for you”
Having the support of your friends and family during times of illness was extremely important to the mental wellbeing of Nick:
My mother was very accepting and my father too. She was concerned about the whole gay thing of course HIV and AIDS was a big concern of hers and here her son comes home, with you know AIDS or HIV rather and she didn’t bat an eye, she said ‘you’re going to be fine’ and you know she just held it together but she told me the truth afterwards and she watched me get married and she watched me recover from drugs and alcohol and she watched me go to school, she watched me get well ,she watched me develop a career you know, and build a farm. You know be happy and have a life so to her that was the best gift. What mother doesn’t want to see her kid well? And my father was the same way, he really was.
His friend Diane played a huge role in his life both before, during, and aNick’s HIV diagnosis:
She was with me and she’s the one that held me, when my knees gave out.
He continues:
Diane taught me to …she said educate yourself about this disease.
Diane truly helped him to see the positive in being HIV positive even if at the time, he could not see it himself:
This lesbian told me one time, “you’re going to look back on this and HIVs gonna be a gift” and I turned around being the cocky kid I was and said Fuck you, you take this gift and tell me what you get from it. That’s how I was, cause I was.. first off ,I was pissed off that I was positive and she’s going to tell me something like that right? But looking back in introspection she was right.
Even outside his closest friends and family the gay community as a whole came together to give each other advice and support. Back in the 80’s the HIV experts were not doctors or scientists but the communities impacted:
They didn’t know shit about the disease. The gay community, the gay men did know. They came up to me and they said what are your T-cells and I went to tell them, and they said ‘oh girl’ your T-cells are normal. ”I got two T-cells and I’m still walking, you know you’re going to be the second wave, your fine.”
But even with all the support he had from friends, family, and the community Nick still faced bigotry and phobia against HIV:
Well, I had shared in that meeting I was just newly diagnosed with HIV and I didn’t know what I was going to do and I’m thinking of dying all the time. Nobody held my, well two people didn’t hold my hand and other then the people who stood next to me. And Arlene came next to me and she got in-between me and the other person you know. She held my hand that was shocking.
Even though Nick faced unimaginable hardship, due to his HIV status and Sexuality, he had the support of his parents and friends. This shows how important a support network is important when dealing with major life changing events, such as becoming HIV positive.
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