HEROES IN VULNERABILITY
One of the reasons I was compelled to do this interview was because I, in fact was one of those judgemental buttheads that as soon as I heard the word HIV I would just assume that people with HIV were kind of sluts - you know? Not that that’s a bad thing, because I came from Australia where everybody was shagging everybody else, but I just assumed that you only got HIV by playing unsafely and taking risks - and it was synonymous to me with the kind of guys that were just stupid. They were stupid - they kind of deserved it because they were doing stupid things and that’s what my impression was, quite wrongly.
I always played it safe and I never did drugs or did anything that I was unaware of and yet despite using condoms, I got it. When I went for my routine check-up and they came back and told me I was HIV positive, first of all I thought “Positive? Like does positive mean I’m ok? Or which way is that, what does that mean?” And I was like “Oh no, that sounds like I have it, well that can’t be right.” I went completely out of my body. It was an incredibly calm feeling because I was so certain that she had read wrong or that she was wrong, that I just sat there while she went into the next room to retest. It never occurred to me that what she said was actually what was going on. So I had this really strange five minutes of almost sorting myself out - that if she comes back and what she says is actually what’s happening, what do I feel about this? So when she came back and said no you definitely have it, my first thought was, “Ah, there you are.” I realised that I was actually more worried about getting HIV along the way than actually having it and that was a very strange feeling; that suddenly, because I had it - and quite frankly I was completely oblivious to what to do now, I had no idea what you had to do. I knew there was medication - or not medication, but I almost felt relieved, because I realised the amount of stress that I’d had - having sex, not having sex, with this huge demon riding over me in the background, of
something that I might get - that might destroy my life. And the other thing that followed very quickly after that was this kind of battle between the medical experts - between plying me with drugs or making me not have drugs. There were two completely different opinions, so I spent about two weeks going from one doctor to the next finding out as much about which way to go as I possibly could, while spending a lot of time - which is the most important time, thinking what this actually meant to me. I think that was the biggest thing - the biggest battle, was “What does this actually mean to me now? What do I really feel about it?” “Forget about all the tragic scenes you see in films and all the horrible things that have happened to people in the past or all the myths that you have in your head - what do I really feel about now having this quite huge thing in my life that’s just suddenly happened?”
And that became kind of the most major thing that happened in my life at the point that I got HIV, I took control of what I felt. Which is not to say that I was out of control, but for the first time I had something that anybody can say a different story about and so I wanted to know what this adventure meant to me, what this story meant to me, how I dealt with it was really important, but how I felt about it was even more important.
I went back and forth with various opposing bits of information and decided to erm.. I knew somebody who had HIV. I knew very few people who had HIV at the time, and he was going to a doctor called Sabine at the Royal Free and so I went to see her and I loved her. She put me on a program called the Smart Program. They hadn’t decided at that time yet whether it was best to put you on medication from the get go or whether it was best to delay medication until your CD4’s went down to a level whereby you needed help. I mean I very rarely took aspirin so my feeling was to try and avoid medication as long as possible, but as I kind of got educated and I had it for seven years I think,
Sabine said let’s face it, you’re 52 years old, you’re really healthy, most people your age start going on some form of medication anyway, so you might as well as it may help you with all kinds of things that you might start doing without HIV anyway. So I did the Smart Program, which randomised the volunteers, so you didn’t know if you were going to be chosen to take the drugs or stay off drugs, and I was randomised into a group that took medication, but by that stage after doing my own research I had already decided that I did want the medication and as it happened I got into the group, so had I not got into that group I would have chosen to.
I can’t say that I’ve had this hideous HIV experience, I think it was kind of a comeuppance for me being such a judgemental prick, because I couldn’t come across anyone more unlikely to take a risk sexually than I was. And if I could get it then suddenly it just changed my whole idea of what it was and it shocked me into realising how when I heard the word HIV - like many people, you just think AIDS. You’re going to die (dramatic voice). They’re riddled with something that’s going to kill them and they’re armed with this icky sex transmitted weapon and you have to be careful (laughs) - so I guess that’s not exactly accurate is it?
And I hate to be the one to say if - it can happen to me then it can happen to you too. You can get anything - don’t expect the condom’s gonna protect you. It’s very hard to get the right tone with it, whereas in the old days I would have thought of it as the worst thing that could possibly happen to you apart from cancer. So one of the things I had to come to terms with was, I realised, why would I freak out about this? It’s completely treatable. I’ve had friends who have had cancer and the treatments are horrendous, and it’s terrifying what they go through, and they’re constantly concerned with whether it’s going to come back. And I realised how much I had thought that HIV was this tool of destruction and I think a lot of people do still think that.
I think certain terms like “undetectable” need to change, to underpin the fact that you’re not - as I used to think of people with HIV, you are not a human moving weapon. I realised there’s been a couple times when I met someone I was like - if I get any closer to them, that I would get it by virtue of it just leaping out of their bodies into my face like in Alien (acts out the face hugger scene - laughter breaks out) help me help me! Anyway…
As I said before I had not come across a lot of people who had HIV, and weirdly enough I was with this guy for 18 months and on the first night that we were together, the lights were out in the room and there was a big silence, and he said “I have to tell you something, I’m HIV positive” and I was kinda lying there in the dark for ages and ages and ages and I didn’t say anything because I kinda wanted to know how I felt and I reached over and I realised that he was crying and I was like “Oh sorry I didn’t mean to upset you I was just in my own thoughts and I was trying to evaluate to myself what your words meant to me, whether I cared or whether I didn’t care, whether I was scared or not scared, and it just took me that length of time to think to myself actually I don’t feel anything strongly one way or another about it, it’s fine, its ok, more than ok”, but I realised the extent of actually hitting that to me, was such a huge huge thing for him. And behind that is I guess this feeling of rejection, so when I got it, I had only had that one very close experience so everything was new to me and I made a conscious choice to not tell most people, and the reason I did that was because I didn’t want - on top of everything else going on in my mind - I didn’t want to have other people’s paranoia thrown on me or concern. Like “Oh my god my son is going to die” or the million other possible negative things I would have to wave through, to make people feel ok.
I didn’t want to put my energy out into making other people feel ok. “It’s fine I’ll be alright. The medicine these days is amazing”. I didn’t want to have any of those conversations, so I didn’t tell many people. I told my friend the woman I was living with, ‘cause I thought that would be the decent thing to do. I eventually told my best friend probably about 8 months later - I told the guy that I was gonna go visit in Turkey, ‘cause I thought that was probably the smart thing to do, because we were planning on having sex, and that was about it. Even now I have moments where I’m talking to friends and I go “Oh yeah when I got HIV I was kinda like that too blah blah blah” whatever - and they’d be like “Did you just say you had HIV? How do I not know this?” And I’d be like “Oh yeah (laugh) I got it. I’m fine don’t worry”.
It’s kinda made it a lot easier because I’m just finding I’ve now forgotten who I’ve told and who I haven’t told. I know I haven’t told my mom and my dad, why would I? They’re in their 80s, why would I give them something to worry about? - even though there’s nothing to worry about. In their minds, especially that generation, they just don’t need to know Of course they probably will now that this is going to be on social media. I also worry about people I suppose work wise, because I think there is still that stigma, that they’re that dirty whore of a person with an icky disease - that still is in some people’s minds, so this is kind of my way of saying fuck y’all to that. I think it’s time we have other issues in this world that we have to deal with. This stigma is something that needs to be broken through, people have to be educated, people have to know that you’re not a walking weapon - as I once thought.
HOW DO WE GET RID OF THE STIGMA?
First of all, I think rebranding is really important. In reference to HIV being undetectable now with the help of medication, the term undetectable is very misleading, it almost sounds sneaky. A lot of people ask quite rightly what does that even mean, and to me the word undetectable feels like I have HIV but (whispers) but you can’t tell. And the rebranding, which is what I think it should be is “un-transmittable”, which is too many syllables - I think, it might split everybody’s lips - but basically something that says “You can’t fucking get it. “I can’t pass it on, even if I tried” which would be weird. So I think it needs rebranding - that would help people a lot. Undetectable isn’t clear. Un-transmittable is clear - you can’t pass it on. That’s number one, that needs to be advertised more, because that will make people feel less like - the way I thought, like you’re a walking weapon. Number two is things like this - this interview we’re doing - it starts becoming a little more of a conversation. You stop hiding behind the smoke and mirrors of our stories as we often do. I like that as a kind of directive for the world in general, that we become a little bit more honest, because as soon as somebody starts to reveal their deep and dark secret - that they feel nobody else has got, you find that there are a shit ton of people who are feeling the same thing. That’s why I’m a director, I want to tell stories that people identify with and my general themes are those dark spaces that we keep hidden from other people and often times keep higher from ourselves. I think that is part of the experience and the adventure of living on this planet. To realise that we’re not just good or bad, we’re a shit ton of other things in between, and the more we bring our stories to the table and reveal ourselves and the more other people do the same, the more we kind of get into the guts of living and life becomes fun and we stop having this fear that drives everything.
I’m aware of an image of me having fun with friends, kissing a guy or just me by myself with the word HIV. To most people at this stage they have a slightly tragic slightly sad perception: “Oh look there’s that guy, he’s so happy and he’s going to die” (laughs) “Oh look at him he’s all alone” or whatever other image might be, I’m might be smiling and they’re like “Oh look he’s really brave”, you know, all that shit. (laughs)
We have to start looking at other people in a different way. I think it’s easy to label people generally, either by religion or by medical conditions, and I think the way the world has to turn is away from labels and judgements and instead allow you heart to open to the full story of each individual. And that is tough for human beings especially now where truth is being attacked. People’s truths need to be honoured to a degree where you can expose yourself and your story to other people and know that you are living in a society that is open to people being that vulnerable. Because it won’t hurt you as a result. By developing empathy you are training a muscle that is kind of a scary muscle to train, because if we’re open to other people - to really seeing other people, then we are also opening ourselves up to being seen. And I think that’s the biggest fear of this world, is to actually really be seen.