Neutral.

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I am HIV-neutral but 99.9% of you reading this article have no idea what that means.

Let me tell you. Let me also tell you how I got to that place, as the journey wasn’t only interesting, it even offered up a few surprises. To me it did, no question. Hopefully to you, too.

For example, I didn’t know that HIV hasn’t been directly responsible for the death of a single human being. I also didn’t know that AIDS isn’t a thing. It doesn’t exist. This latter came as an especial surprise because it was an AIDS diagnosis I’d been given in 2007. How can you be diagnosed with a thing that doesn’t actually exist?

Just the kind of thing I’d lay claim to, really. I always did like to go against the tide.

But I’m jumping ahead of myself. We need to go back to 2004.

2004 was my annus horribilis. Yes, yes, I’ve heard all the jokes about anus horribilis but let me assure you: there is nothing horrible about my anus. (References available upon request.)

2004 was a terrible year for myself, yes, but also the two friends I lived with. Each of us ended up on crutches at some point. Two of us were involved in hit-n-runs, separately. I had my nose broken in a hate crime. I got gout. Gout! At 27. What was I: some Tudor monarch? Even my doctor asked how I’d achieved this, to which I gave a sufficiently blasé response.

“Darling, we live in an apartment where we drink only sherry and eat only paté. Of course I got gout.” Then I thought on it and continued, a little more seriously. “What is gout?”

“It’s when crystals form on the inside of -”

“Crystals? I’ve got crystals?! Oh, how marvellous!”

I think you can ascertain what kind of individual I was in my 20s, after all. Which is not to say everyone of that age is a bit of a wanker, but those who don’t know who they are (or are too afraid to say) can certainly revel in the defensively insincere.

Still, there we were in the apartment, all three of us. All either on, off, or in between crutches; plus me with gout.

And then the apartment burned down. From a tea-light on the side of the bath. I won’t go into that story as there’s a one-act play coming to a theatre near you.

With such a year progressing in such a comedically tragic way, I made the only decision that made sense. I booked a one-way flight to South East Asia. I’d be landing in Bangkok on December the 28th. Two days after Boxing Day. Thailand. 2004. Boxing Day. If this isn’t ringing any bells for you or you haven’t worked out the wordplay arithmetic yet, I’ll end this sentence with one word: tsunami.

Just when you think nothing else can go wrong with a year…

Of course, in retrospect, that’s an awful thing to say about a disaster that killed hundreds of thousands. But I’ve already told you what I was like back then. I couldn’t believe my travels had been ruined, ignorant to the ruination that had been wrought over there on the other side of the world.

I went anyway. I figured I could help, even if it was only with a shovel (gathering rubbish) or a clipboard (gathering data). I was given the former. I ended up working in diseased waters with dead bodies, or at least parts of dead bodies. It was undoubtedly the beginning of the adult me.

I returned to the UK in 2005 and almost instantly my health went off a precipice. At my lowest point, I was 4-and-a-half stone, otherwise known to younger readers as not-very-many kilograms; in the way that a skeleton doesn’t weigh much in kilograms. I couldn’t get up a staircase without stopping halfway. I looked like a leper mostly because my face was falling off. This was particularly hard for the boy who’d always been enamoured of his own golden looks.

As an added bonus my immune system was shot.

It is one thing knowing the truth of something subconsciously and quite another admitting it to yourself. I’d been out-and-proud since I was eighteen (well, slightly proud, and out inside certain venues or certain bushes) so I of all people knew what I’d been up to. I’d been up to it in the thousands. Here I was becoming sicker and sicker, thinner and thinner, and not once did I admit the truth to myself. I put two and two together and got one hell of a wrong number. I’d been working in diseased waters with body parts, so I must have contracted something insidious while doing so.

Off I took myself, to every medical professional I could find. I say every because my family doctor misdiagnosed me. Then a second opinion misdiagnosed me. Then a third. I had a succession of misdiagnoses for two years, all the way up to 2007. Some quack from the States even sent me silver tablets in the post, which did not shoot down the werewolf within, but which did cost a fortune.

Not once were those three letters I so desperately needed to hear muttered to me. They were taboo. My condition was so taboo that neither I nor anybody else mentioned it.

I desperately craved to be well. I was so bored with being ill. That was the worst of it. Boredom. I couldn’t get on with living because I was being left to die. I mean that too, without sounding like I’m playing the blame game: left. It was not a lack of ownership. It is one thing being too frightened to admit something to yourself, but surely medical professionals have a duty to inform, to test, to diagnose properly. I believe that duty is called the Hippocratic Oath. It was broken a lot back then.

But it was 2007! It still sounds so very progressive and modern, doesn’t it? 2007. Not for certain communities, let me tell you. Ring any contemporary bells? Ding dong indeed. The witch was very much alive in 2007 and by witch I mean the kind of mischievous witchery the universe likes to play at times.

There was a lot of fear around the subject of HIV/AIDS in 2007. Even with all that was happening, all that we’d achieved and seen during those times. We had iPhones. We had Venus Williams winning Wimbledon. We had Bulgaria joining the EU. We had Nancy Pelosi becoming the first female Speaker of the House in the US.

What we didn’t have was a conversation about HIV. It was still very much a subject whose truth was swept away as cleanly as its presence. It was the Voldemort of our time, for we did not mention its name. I’ve always felt a bit of a cheat quoting a writer, for I am one, but that American great Barbara Kingsolver penned that “... it’s a gift to survive death, isn’t it? It puts us outside of the fray.” I was stepping dangerously close into that fray. Years of not being diagnosed properly had taken their toll. In 2007, it was still an embarrassing subject. HIV wasn’t the elephant in the room, it was just the entire room. We were one big elephant, but… we never forget. And being an embarrassing subject would end up being a silver lining. (Embarrassing to others, let me stress.)

I wasn’t the only one who’d done that oblique sum of two-plus-two equalling… something entirely imagined. A friend of mine was, at the time, a producer on ‘Embarrassing Illnesses’, a relatively new programme hosted by a doctor who was dipping his toe into the world of TV celebrity: Christian Jessen. Their programme was looking for candidates for an episode centred around tropical diseases. Surely that’s what I’d contracted? And because I had, would I like to be a case study?

Would I like to go on TV looking like this? Not really, said the 49% of me that was still weirdly vain. YES! said the 51% that was still bored of being ill. The appointment was booked and so to Wardour Street I headed, and a doctor’s office that looked like the interior of Versailles.

I walked in. Christian was sat behind his desk. There was barely a ‘hello’ and not from bad manners. He was one of the politest doctors I’ve had the pleasure of sitting across a desk from. It was from good instincts.

“Has anybody given you an HIV test?”

To say that he was flabbergasted at my answer is no hyperbole. He said the very word himself: flabbergasted. We did a test, one that took about fifteen minutes. One of those little pricks given, which prompted a number of unspoken jokes. The test came back positive, obviously. Way positive, which I guess was also kind of obvious. So positive it was actually an AIDS diagnosis.

And this is a good place to tell you the difference between the two. HIV is a virus. AIDS is an umbrella term for all the things that you can acquire: I’ll return to that word later. All the things that could do you in, terminally.

HIV has never killed anyone, though. And AIDS doesn’t even exist.

Yet, do you know what was going through my head in that office, having just been given an AIDS diagnosis?

‘I wonder if this is a good time to ask Christian out on a date?’

Some things never change.

What had changed was my entire life. The fear that came with the diagnosis was understandable, I suppose. Was it the cold sweat of fear? I don’t think so, because from my experience fear has no temperature, it just has a thin varnish of shock. What made it worse was how it had been represented in all those years prior to my diagnosis. On that fateful day, that’s what the news of having HIV was varnished with: a preconception. It was, at the time, tombstones and Tom Hanks dying romantically to the sounds of opera. There was nothing up-to-date, nothing truthful.

Why was it an AIDS diagnosis though, and not one of your everyday, run-of-the-mill HIV?

Medical professionals speak a different language. But there was one piece of information that cut through the jargon, given later in another appointment. Our immune systems are measured in CD4 cells (or at least used to be).? A typical average CD4 count for a healthy human being is from about 500 to 1500. 200 is worryingly low. It’s the threshold for AIDS alarm bells to go off. At the time of my diagnosis, I had a count of 23. I could have lined them up on a shelf and named them.

On the drugs I went. Off the rails my friends went, thinking I had weeks to live. On the weight gained, but off the carbuncles did not fall. I still looked just goddam awful. I complained to Christian because the medication wasn’t doing what was promised. “Be patient,” I was told. “It’s the virus putting up a fight.” Wasn’t I the one meant to be doing the fighting?

“It’ll happen,” I was reassured.

It did happen and it happened instantaneously. I woke up one night, so low at the thought of leaving my flat while looking like this that even getting out of bed to urinate took a Herculean effort. I turned on the light. I glanced in the mirror, continued to sleepwalk on by, then did one of those cartoon double-takes you think would give whiplash.

Not only was my skin clear: I was radiant! I looked about ten years younger. I was made of marble. If you’ve ever seen ‘Stardust’ with Michelle Pfeiffer, you’ll have an idea of how this felt. If not, fast forward to the scene where she’s a wrinkled old rag one minute, swallows a piece of star and then, well… Unwrinkled, let’s say.

The drugs really did work.

So, I survived by a series of very fortunate events, though it could have gone either way. And because I am a fighter – most of the marginalised are, even if they don’t realise it – I pretty quickly became an HIV Awareness activist. I was inspired by an email received very early on in my new life as a person who’d now been given the label HIV-positive. Given, for I did not choose it.

I’d done my ‘contacts’, whereby you tell as many of your previous sexual partners as you can the news. Remembering even a small percentage of them was nigh-on impossible, but one – a Spanish man I’d met while living a spell in Hong Kong – reacted by saying that he immediately saw me re-enacting the Delacroix painting ‘Liberty Leading the People’ (used by Coldplay on an album cover), where a French lady raises her country’s flag while flashing her breasts on a battlefield. I could be that kind of activist, he said.

That’s exactly what I became. On went the obligatory red ribbon. I even got my chest out on occasion. All for a good cause, of course. Just to show the world that I wasn’t some emaciated, deathbedridden husk of a homo (sapien).

I was an activist for about fifteen years. All the while, moments would present themselves where – just as I was thinking our type of activism wasn’t needed any more – I realised: yup, we’ve still got a lot of work to do. Whenever I doubted our necessity, someone would pipe up with something along the lines of:

“HIV? Isn’t that a thing gay men get and then they die?”

I would like to stress that at one point in my life, not so long ago, this question was voiced by a 20-year old actor working behind a bar at the Old Vic Theatre in Bristol. An actor. A theatrical actor for heaven’s sake. And he didn’t know? Like I said: a lot of work to do, still.

Or people would say, in response to my openness about my status, “…Oh, I’m sorry,” as if it was either their fault or I’d just lost a favourite aunt or possibly both.

You can understand why I began to doubt my efficacy as an activist. I began to get tired of it all, but still I tried to find innovative ways to get the message across. I turned my ribbon upside-down because that was what I was doing: turning the ideas of HIV/AIDS on their head. I thought it was a clever visual metaphor. Still, the questions though.

“HIV. Isn’t that a thing gay men get and then they die?”

I became a part of a photographic research project part-funded by the University of Bristol, entitled ‘We Are Still Here’. It’s a piece of work I’m incredibly proud of and I’ll include a link to it here directly because a) there’s no time like the present (especially once you’ve survived a ‘terminal’ diagnosis) and b) its prime intention was to show the world that anyone could get HIV, that a virus – unlike us – has no prejudice. You can see this for yourselves at www.wearestillhere.net

The project lasted a few years and by the end of it I was, yes, proud. I was also shattered. So, I took the ribbon off. I knew it was the first thing people saw when they looked at me and no longer did I want to be pigeon-holed as someone who was just HIV-positive. There was more to me than a virus. I renamed myself by changing my status. And then I retired.

Because do you know what fighting the good fight is? It’s exhausting. I took a rest and I took it with a new name for my new status. What was that name? And how did it come to be?

It came, as so many thoughts do, at that time when you’re nodding off and multiple threads are being woven in your tired brain as sleep envelops. I was thinking about HIV because I was thinking about retiring and so wouldn’t have to think about it. I was thinking about HIV because I always do. I’m HIV-positive. Positive has such a strong, powerful, proactive sense about it. It made me feel like I hadn’t won.

I was thinking about Dungeons & Dragons, not because I always do (though the teenager I still am does), but because a friend had just been to a D&D group and I’d been thinking of that teenage me and how happy he’d been then. He’d been winning. I thought back to the character I used to play all the time because I was in love with him. He was the me I wanted to be. I am not revealing his name because it’s faintly ridiculous.

He was chaotic-neutral. To those of you who had social lives as a teenager and didn’t play D&D… No, scrap that line of thought. Role-playing is social, it is fun. It is creative and it does use your imagination. But to those of you who haven’t played it (and possibly look down upon it, for shame), when you’re creating a character, you get to choose their alignment. There are two spectrums (don’t we love a spectrum?): good to evil with neutral in the middle, and chaotic to lawful with neutral in the middle. These two axes intersect at the neutral. Good was always seen as the positive, but that never interested me. It was boring. It was Gryffindor. I love mischief, always have. I want to be the Catwoman, the Loki, the Daffy Duck. Flawed, playful, selfish, haphazard. I love a bit of chaos. Of course, I was going to be chaotic-neutral. You could go anywhere you wanted and to hell with anyone else. I didn’t care if others saw it as a negative.

And there’s another spectrum, positive to negative with neutral in the middle. I was HIV-positive. The rest of the world saw me as that because the rest of the world was HIV-negative.

I like the place where one axis intersects with another. I like the neutral. It might sound like it has no power, but the power is all on your shoulders to do what you like with it. And to hell with anyone else.

I renamed myself and so a phrase was coined. I even Googled it. Nothing. That’s not to say that it’s never been uttered or thought of before. An idea always has its time. Just as Darwin came to the theory of evolution at the same time that Alfred Wallace did, so maybe somebody else thought of HIV-neutral at the same time as I, if not before.

I’m neutral – not about everything, you understand. The word has gotten a bit of bad press recently. If you’re neutral to homophobia, racism, sexism or transphobia, then yes: you’re a homophobe, racist, sexist or transphobe. With much else, though, we have this tendency to compartmentalise, to see things as good or bad only. Neutral doesn’t have to be bad. Like two friends having an argument, you can be the Switzerland for both. Not the best example, but you see where I’m going...

Good, bad, or neutral: I’m very much alive and well. HIV is a virus that never killed anybody. If it was in the Eurovision Contest – the Euroviral – it would be nil points. Once upon a time it led to a chronic health condition called AIDS where something else would kill you, often pneumonia or specific cancers. AIDS is an abstract, a collective. An AIDS of diseases. People once died of it, of this abstract, in their millions.

I acquired it though, so I had no choice. I was given a label, over which I also had no choice. But don’t forget, I’m chaotic-neutral. So, HIV-neutral I became. Why? Because I could choose it. And because it took the power away from the virus and gave it back to me. The virus has no power now, not now that I’m taking regular medication. It is physically, medically, biologically, anatomically, historically, emotionally, adverbially impossible for me to give it to anybody else, even if you drank a pint of my blood you greedy vampire, you. The virus is barely there. It came, it saw the state I was, it tried to conquer me. It failed and has now merely left its autograph in my blood.

I hope you can see why an HIV diagnosis should not come with such hopelessness. I am hopeful for the future. Scrap that thought, too. Hope has been mentioned but that is something else I’ve given up for it implies a sort of passiveness. I don’t sit around hoping for things. Let’s get ‘em done. Nobody was going to call me anything else but HIV-positive. Hoping for it wouldn’t have changed a thing.

I returned to being an activist. I unretired myself. Two things ratified this decision. I received a message on Instagram from someone saying they’d adopted the term. And I saw someone wearing an upside-down ribbon one day. Yes, they could have just gotten it wrong, but I like to think otherwise.

There are still fights out there. Grindr, for one, won’t expand their categories with regards to HIV. They allow the individuals on there to remain in the past with their attitudes. “Are you clean?” Yes: I own a bar of soap, thanks. I even frequently drop it in the shower.

I fight on. I write and talk about things, rather than hope for them. I’m looking forward to being redundant one day. The job of an activist is probably the only profession in the world where we are trying to put ourselves out of work. When any sort of HIV Awareness activism is no longer needed, then we’ve done our job. For now, we do still need this.

And it’s a big ‘we’. This tribe of ours is not a small tribe. The population of those who live with HIV is 39million. That’s more than the populations of Greece and Sweden and Bolivia and New Zealand combined. It is worth noting that while there’s 39million of us alive with HIV today, we’ve lost 40million over the years.

To those that remain, we should never be neutral to the prejudice we still face. But we should be allowed to label ourselves as we see fit.

My name is Martin Burns, Tini to my friends, and I am HIV-neutral and proud of it. 99.9% of you reading this article once upon a time had no idea what that meant. Now you do. And just so there’s no further misunderstanding, here’s the dictionary definition…

HIV-neutral. adjective. /?e?t?.a?.vi??/?nju?tr(?)l/ Living with the HIV virus while under a state of adhered-to medication that annuls any infectious qualities of the virus entirely. Presenting as a regular, normal human being, yet still prone to being stigmatised wrongly.

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