I was having "the talk" with a young gay man recently. Trying to make sure he looked after himself, explaining about how HIV works, how much it sucks to have it etc, and after a bit he said to me:
"But you've had it for years and you're fine!"
It was one of those moments, when you think "Arggghhh!"
Yes, I am living well. Yes, compared to where I was 10 - 15 years ago, I feel like the Six Million Dollar Man. I never thought I'd be alive at this stage of my life, and neither did my Drs. In the mid 90s I nearly died. I was in and out of hospital with PCP and other nasty conditions. My body weight dropped down to 50 kgs and I'm in the mid 80s now, where I should be.
I can remember one of the worst nights in hospital when they were trying to get my temperature down, and I had my hands in basins of ice water, a fan blowing chilled air over me. I was delirious. I couldn't get out of bed to shit. I couldn't move. I was weak, powerless, and scared. I'd tried acupncture, Chinese herbs, all sorts of alternative meds and they did nothing. At that time Western Medicine didn't do anything much either, not until the new drugs that have saved my life and so many others'.
I spent weeks and weeks in Herne Bay House, no longer sick enough for hospital, but so unwell I couldn't walk down the corridor to the kitchen, and it wasn't that long a corridor. Lying in my bed there with an oxygen bottle attached to me - not fun. Then I'd be sent back to hospital for something else. Then I'd be back at the House. I'd seen other friends die there. People died while I was there. I was sure I would too.I had my funeral planned. I was angry - so angry, with everything and everyone. I can remember that anger so clearly. Cold, intense and uncomprehending.
I was able to change my attitude, over time. Now I love my life. But I know how lucky I am. So many of the men I loved died in the worst days of the plague, before the new drugs came out in the mid 90s. They changed everything. from getting ready to die, I had to get ready to live.
And I think I've done a pretty good job of it since then. And HIV still affects my life every single day. I have to take my pills regularly. At first I was taking 47 a day, and it didn't leave time for much else. Some had ot be taken with food, some you had to wait 2 hours after you'd eaten and take, everything was measured for me by the medication. And it still is. If I go out to dinner I have to remember to take my pills with me, or go home early. Luckily my latest drug regime is for some reason easier on my stomach. In the past I always carried a spare pair of underwear in my bag, "just in case" and I needed them quite often. I knew, and still know, where every available toilet is on my regular walking routes, but I no longer seem to need to rush into them in the way I used to.
And as much as I value the drugs for all they've done for me, I know that they are also taking a toll on my body, on my heart, my liver and kidneys. I have friends who have had their body shapes changed by the drugs, deposits of fat around their necks and shoulders, thier cheeks wasted away. HIV meds do strange things to body fat. And I know people for whom the drugs just don't work. They are a tiny minority, but like any medication, there are some people who just don't respond.
Emotionally HIV has changed me as well. I still find it hard to trust that I have a future, I still have a little voice saying "This could all go back to how it was" but I try and stifle that. Because focussing on it does me no good at all. Life is for living, and for enjoying where you can.
Men react very differently to you when you tell them you HIV. As much as they say they understand safe sex, it is still a deal breaker for many. And I suppose I hold myself back as well due to this.
So there is the paradox - a young gay man says "You've had it for years - you're fine!" and how do I convey to him that in fact I am, but I'm not.
In fact, once you get HIV, it's like adding a tiny drop of ink to bottle of water - you can't see the drop once it's added, but it's there forever and you can never get it back. My life has been altered beyond recognition, my plans, my hopes, all have been shifted and changed because of this. I hate it, although I don't hate what I've learnt from it, but it's a really shitty way to learn a lesson like this. I don't recommend it to anyone.
Realistically, HIV is here to stay. It is highly unlikely that we will ever live in a world without it. So we have to find ways to live with it. And I'm glad I have. But I wish I hadn't had to do all this. I wish I'd been able to lead the life I thought was mine.
So never ever think that just because so many of us are living better with it these days that it isn't an issue. It is, it imposes a huge burden, physically, mentally and emotionally on us all.
Yes, compared to where I was, I'm fine. I'm alive. I never thought I'd see in 2000, now I'm pretty sure I'll get to 2010, and beyond. Life's weird. I didn't do anything special to get here, I'm not a saint, most people with HIV aren't, we're just ordinary people who learn how to cope. I probably won't die from an AIDS related ilness, but from something brough on by the medications themselves - I'm aware of this, but it is still so much better than it was before.
I think for me one of the worst things is the amount of control over my life I've lost.
But this reaction - it threw me - what do we do? Do we downplay just how well most of us are doing these days? Do we cease celebrating the good things that have come our way in an effort to dissuade young people from putting themselves at risk? I think now - I'm bloody happy I've got to where I am, and I can't be responsible for the ignorance of others. I intend to enjoy what life I have left with gusto.
The hard thing is that to some extent, this young man was right. Yes, I've got this virus in my body, but I work, I travel, I go out, I fuck, I have a happy and interesting life. Having HIV for most people today really isn't anything like as bad as it once was. But that's not the point, is it? With all the improvements in our health and treatment, it still places a huge burden one you.
Please - Don't get it. Yes, we look so much better, and live so much better - but believe me it still sucks. Please, look after yourselves out there and don't add to the stats.
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