Editor’s Note: Hello, readers! Those of you who read my interview with Jack Mackenroth may recall that I mentioned a recent conversation with an HIV positive friend. Said friend told me that he admires Mackenroth’s bravery in telling the world he’s HIV positive.
Though he’s not personally ready to reveal his identity, my chum agreed to a taped conversation, which I’ve since transcribed, edited and posted after the jump. As a little context, my friend’s moving from Los Angeles back to his parents’ home.
Read the conversation, think about it and consider how you can avoid finding yourself in a similar situation, ie: use condoms and don’t shoot drugs – or at least use a clean needle!
Also, I’ve included a few HIV/AIDS awareness commercials from all over the world. The one you see above comes to us from Estonia circa 1990 or so. It’s queer.
Andrew Belonsky: Hi, friend! How are you?
Ryan C: Things are crazy right now.
AB: Packing up all your shit?
RC: Yup, shit packing.
AB: When are you going back home?
AB: How are you feeling about moving home?
RC: Good. Okay. It should be fancy, at least: nicer than here, where I’m poor.
AB: Right. Being poor can really hinder people’s experiences. Okay, let’s go back to – what was it? – over a year ago: when you found out you were HIV positive. I know we’ve talked about it, but let’s talk about it again. How are you feeling since then?
RC: I’m okay. I think what is interesting about the way it’s handled in this country is that there’s so much talk about getting tested and finding out and all these MTV commercials, but then there’s nothing that talks about what happens after you’ve gotten tested. What about that huge percentage of people who are positive? That’s what prevents people from getting tested: they don’t want to know the bad outcome. We as a society aren’t doing anything to help people who are positive. How are we – we’re on this big witch hunt, kind of…
AB: After people find out they’re positive, it becomes this –
AB: Yeah, to a degree. It just seems like it’s put into this box of privacy, you know? It’s like you have to come out again.
RC: Yes, yes, definitely. Absolutely. But I think it’s still kind of funny how there are all these commercials about getting tested, but that’s such a small, tiny part of it. It sucks. Society thinks they’re doing a good thing – preventing. It’s all about preventing AIDS, but then the cases that already have it, what, we’re just fucked? We’re the bad batch?
AB: Is that how you feel?
RC: Kind of. I definitely feel forgotten or left behind a little bit. I don’t think that I’ll ever feel as good about myself as I did before – ever. I’ll always feel that everyone else has a one up on me – a leg up.
AB: [Laughs] That’s ridiculous. There are so many people who are worse off than you, don’t you worry.
RC: I know, but if I were paired with a similar opponent I would always – I’ll just never feel like I was before.
AB: In social context?
RC: I just never feel confident about myself.
AB: How can you change that?
RC: I don’t know. I think being in the dating world right now makes it a lot worse. I think everybody’s self-esteem is off when they’re in the dating world, but it’s worse for me. You know me, Andrew – I’m an okay looking guy –
AB: You’re very handsome!
RC: I don’t necessarily have it as bad as some other people who are HIV positive. I’m hoping that I’m going to find a guy who’s going to look past my HIV and into my looks! [Laughs]. To look past the HIV and not have much else there – I feel like that’s really tough.
AB: You’re too much!
RC: I think I’ve learned that I attribute more of my problems and issues to the HIV than necessary. I have some guys who haven’t called me back and I haven’t even told them. It’s kind of nice to have that experience than have it be about the HIV. I feel better about that. It makes me feel good because it’s like –
AB: “It’s just me, not the HIV!”
RC: Exactly! It’s just me.
This video comes from Australia. It’s one of the scariest things I’ve ever seen.
AB: I think it’s especially hard because of our age – well, also there’s a lot of pressure to pair off.
RC: Yeah. I think these are problems everyone is having, but they’re being exasperated. I was having a really hard time getting insurance, too. Stuff like that is really difficult. You kind of feel like a zombie.
AB: What would an insurance agent say to you?
RC: They just deny you. I’m a freelancer, you know. That’s just kind of how it is. I could have gotten all this major risk medical insurance, but the whole insurance thing to me is just full blown lies. Why have insurance if you can’t guarantee that you need it?
AB: Are your parents excited that you’re coming home?
RC: Yeah, they are – they’re definitely the role models of supportive parents. That’s the other thing, too: the shame continues into that. I feel terrible for my parents – I feel like it’s an embarrassing thing to have happen. It’s not the stuff that my parents are going to be proud of… It’s not going on the Christmas card. They have to deal with so much stuff now: they have to deal with me. I think this year I’ve realized that it’s more than just having it. You have to deal with it. Doctors visits are so expensive. The medicine and everything are so expensive. You’re never entirely free to do whatever. You have to play by the rules a little bit. Even though it’s unfair and the insurance doesn’t make any sense, you have to play along and do whatever they say.
AB: You are taking medicine now?
RC: No, I’m not, but I probably will soon, I guess. That just seems to me like a scary next step that I really don’t want to take.
AB: Well, I really would prefer if you did.
RC: I mean, yeah. I think that – it’s not really a choice that I have.
AB: When I last saw you said you were feeling a lot better, but now that I talk to you you don’t seem that jubilant.
RC: I am. I think I’ve definitely been worse. I just think that – I’m kind of frustrated lately about – but it’s good because it’s an empowering thing – before I think I was like, “Woe is me,” and letting what people said about me get to me, but now I’m not letting what people say make me more angry. If you’re not intelligent enough to understand or try to understand, then I just don’t have time for you.
AB: Right. And that’s how it should be with anything.
RC: Yeah, exactly, but it took me a while to – I think it also has forced me to deal with issues I’ve had my own life. If I’m going to get over all of this, I have to face the demons in my closet. One of those is giving weight to random strangers and what I think society thinks about me. That can be the biggest demon to face: the created one.
RC: You know Jack Mackenroth from Project Runway? I really like him. It was great to have him on the show. It’s really nice to have people like Jack who put themselves out there. I definitely feel like I would never want to put myself out there. I feel like I couldn’t right now, at least. It takes a lot of guts to do that.
AB: Well, there are definitely scales to doing that. I think that just talking to me is doing that. Jack did it on a much larger scale, obviously, but just being open about it and saying, “If you’re not down with it, fuck you!”
RC: Definitely. It just takes a while to learn those skills. I can see that down the road. I think that it’s weird because I’m pairing it with this mid-twenties thing, too. I feel like if I were thirty and this happened, I would be much more equipped to handle it. Things were really dark for me for a while. I thought about suicide as fully as one can think about it. I really looked at everything on the table. You realize once you have nothing to lose, things couldn’t get any worse, so things might as well just better.
AB: But in the end you must realize that the pros of your life definitely outweigh the cons.`
RC: Yeah, but I think that when you realize that you don’t have a choice, it’s worth it just to hang it out.
AB: Yeah, man. We want you to hang out!
RC: It’s almost like playing a video game. You have one man left and you know you’re not going to beat it, but just go in there and fight.
This commercial comes from France. It’s highly controversial, as you can imagine. Careful though, it’s not safe for work. Also, for those of you who don’t speak French, the tag line says, “Every ten seconds someone dies of AIDS. Protect yourselves.” It should really say “AIDS-related causes,” but you get the idea.
AB: How do you feel when you’re with us: your friends?
RC: It’s been great. I do have a good time hanging out. Sometimes I feel like everybody is nice about it, but I feel like sometimes I have some friends who expect the worse from me.
AB: I think going home will be good for you.
RC: I think it will, too. Being around here has been fun, but I also think that I need to find an inner strength. It’s very personal. I need to go home and be alone to figure out my philosophy on life and figure out how – I really feel like that’s something you really need to get: a strong sense of self and worth. I think I just really need to love me again and get some of that mojo back. Hopefully I will.
AB: Well I see no reason why you shouldn’t love yourself.
RC: What would you do if you were positive?
AB: I really don’t know. I’ve thought about it. Of course I’d freak out. It’s not like my love life is so exciting right now, so I probably wouldn’t worry about that aspect. I would – I think my biggest worry would be my mom. You know – I feel like she’s lost so many people in her life that it would be devastating: she lost her brother, her father, her husband. Her mother’s dying. So, I think the thought of losing me would –
RC: But the whole point of HIV is that you’re not going to die.
AB: I know, but I think she would think that. I also feel like she would be disappointed in me – and I’d be disappointed in myself! But, you know, I’m disappointed with myself on a regular basis, so –
RC: It’s just one of those things where it’s like – it just sucks that it wasn’t like I was making bad decisions on a regular basis. I’ve definitely made more than one, but –
AB: I will admit, I was very angry with you when I heard.
RC: Yeah, I was really angry with me. And the guy that I caught it from – it was a one night stand, of course. I was getting over everything and was feeling better. I begged him to use a condom and – for half an hour – he talked me out of it. Finally I was like, “Fine, go ahead.”
AB: Do you think that he knew what he was doing?
RC: Yeah, I do. I do. When I go back – I feel like I didn’t stand up for myself. I just don’t feel like I’m an evil person and that’s what led to this. I feel like I was taken advantage of and I wasn’t able to protect myself. But, anyway, dealing with all of this has not been fun – at all. Character building I get, but I would trade it in for another way to build character.
RC: How am I supposed to prepare myself for death? What am I supposed to be thinking?
AB: What are you talking about? How are any of us supposed to prepare ourselves for death? We’re all going to die! I’m sure you’ll outlive most of us, so get over it.
RC: Yeah, well, we’ve all heard that saying, “You can walk out of your house and get hit by a car,” but, at the same time, we’re also thinking, “I walk out of the house, I don’t get hit by a car, I eventually die in the bed when I’m 90.” Am I supposed to be thinking I’m not going to see my sixties? What am I supposed to be thinking?
AB: You’re supposed to be thinking that you’re going to live to be 90!
RC: But if there’s no cure, how am I supposed to live to be 90?
AB: Plenty of people live plenty long because they’re taking their meds, which you should be doing, anyway.
RC: I mean, who knows? I’m more affluent than most, so maybe I’ll get some secret drugs, or something.
AB: I don’t know – I guess we shouldn’t really think in the hypothetical for such situations.
RC: I guess – it sucks. For one, I don’t know what to think of myself. I just don’t know what to do with myself at this point but to just do what I feel like I need to be happy.
RC: But it’s still – for all of the hugs and rainbows that I can tell you about, there are just terrible things everyday. For all the inspirational things I could say to you – all the positive stuff – there’s definitely a lot of dark demons right behind me, waiting for me to turn around. I don’t necessarily think I’m the average 25 year old dealing with this. I’m a very analytical person. I have twenty different views of it at same time. That’s what’s so frustrating for me: I’m trying to figure out which one is mine, which one I really, truly feel.
AB: You don’t have to feel one particular thing. That would be average.
RC: That’s true, but it’s just kind of like jumbled. I think that the best thing to do is to think about it when you need to and not think about it when you don’t. But, then, it’s like, when do you need to think about it?
AB: Yeah, well, no matter what happens – you get cancer, you grow a second head – some things are never going to change: you’re always going to like hot dogs and you’re always going to vaguely resemble a cartoon character. Things like that.
RC: I see, I see. I look like a cartoon character?
AB: A little.
RC: But, you know, if I could give a message to this “gay community” it would be – I feel like guys on Craigslist or even just people in general are like, “We don’t want positive guys. We want to have unprotected sex”. Well, how do you think we got it in the first place? If you’re using protection, it shouldn’t matter if you’re positive. I know it’s every body’s personal choice, but I just think it would be nice if people would be more reasonable. Don’t just throw us away!
This is the hard part, the getting used to living with HIV. It is not easy, but the operative word is living. You are not dying from HIV, you are living with it.
I was diagnosed in 1986, so it has been part of me for half of my life. I am still not comfortable with it, but it no longer haunts me. I take my meds religiously (the only thing I do “religiously”) and take it day by day and week by week. I don’t know if I’ll be hit by a bus tomorrow or die in my bed at 90, taking HIV with me. I want to hold my head high and have fun every step of the way.
That is what I finally got used to. The “dying” part doesn’t matter. It’s the living that matters. I hope you find a way to live and thrive and make peace with not only HIV but every part of you.
I found out in 2002 that I was positive also and I understand many of Ryan’s comments. Big difference is I work for a company that has decent insurance for all employees and I take my meds every day. I just keep reminding myself that many people take daily medicines for a variety of things and I am no different. My ex spent the last year (and possibly the last 2-3 years) we were together cheating on me, and I didn’t find out until too late. Would I do it all again? Sure, I loved him competely and I know that at one point he felt the same for me. I think I would lose so much of what makes me a good person now if I hadn’t gone through this entire experience with him.
I am in no position to tell my mom, though; it would devestate her, especially since she lives in a small town in KY and the fact that my dad just passed away a couple of years ago from an aneurism that went to his heart and shut everything down in minutes and my younger sister was just diagnosed with Grave’s disease. She also has no real way to educate herself about HIV/AIDS and only knows what she sees on TV or hears at church.
I agree that it is very hard being single and positive. I live in Phoenix and it is still a struggle in who do I tell and when do I tell them and how. There is no manual on the HIV positive life and because everyone’s life and story is so different, there probably can never be one that addresses all the issues we face on a daily basis.
Good luck Ryan, and be glad that you have a safe and caring home to go to in your time of need. Many of us do not have that.
I certainly don’t know much about being infected and how to deal with it. It was scary to hear the many concerns Ryan shared in this interview. I want to mention how important it is to have a good support network. I was glad when I asked my primary care physician to be tested he said that if it were to come back positive, he would be there to deal with it from the medical side. At least I felt that I would get the attention needed in such a situation.
When reading the interview, I was also reminded that each one of us has needs. I mean emotional needs that are as important as the needs of others. In some sense, being selfish is as crucial as thinking about others. I wish you all the best in figuring out what it is that you need.
The health insurance thing is an issue that is unacceptable for such a developed society in which we live. As I have grown older, having decent coverage has become more and more important when starting a new job.
Good luck with your move and your future.
While I can’t pretend to know anything about being HIV positive, things are very different than they were 15-20 years ago. That said, this interview clearly brought up a few points illustrating how we, as a society, need to move forward on HIV/AIDS issues until we not only properly deal with prevention, but also with caring for people who have it. No one should feel as though they’re alone or tainted because of HIV – and we shouldn’t put obstacles, such as HMOs, in the way of getting necessary care.
I hope we’ll find a cure for it soon. Not only will it save lives, but it will save people the anguish they so often seem to go through when they get it.
Comments are closed.