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Thursday, 1 December 2011

My World Aids Day Speech

I’m Rich. Im 35 and have been living with HIV for 2 years now

I have really struggled with this talk.

Initially I thought I would be able to come up with something to say that showed me as a strong and hardy man. A person who had faced his demons, looked them in the eye and come out on the other side a stronger and wiser person.

Initially I felt being a positive speaker was all about putting a positive spin on being positive.

Initially, I wanted you all to like me. To see me as a beacon of hope and strength and as a person who was making a difference.

But that is not what this is about for me. This is not the reason I am being a positive speaker. I don’t want you to either like or dislike me. I just want to say what it is like, for me, to live with HIV.

I wrote a draft speech, which on the surface I was very happy with. But in reality it contained everything that I felt you guys would want to hear and nothing about how I really felt on the inside.

You see, in all honesty, I don’t think I have yet fully come to terms with being HIV positive.
In all honesty, I don’t think I have even started to come to terms with it.
In all honesty, all I have managed to do for the past 2 years is lie to myself that everything is going ok and that I have not really been affected by my status change.

Don’t get me wrong. I am not in denial
I know I have HIV. I am reminded of it every day in one way or another.
Every time I take my meds.
Every time I think about having sex with my partner, who is HIV negative.
Every time I visit my kids or speak to them on the phone.
Every time I meet  new people.
Every time I apply for a job
Every time I feel slightly under the weather
Having HIV is a fact that sits in the back of my mind and whispers and niggles at me continuously and it never seems to go away.

Don’t get me wrong. It is not that I don’t understand what HIV is. I grew up in the don’t die of ignorance era. I had the lectures off my mother. I saw all the news stories and have studied virus physiology in depth during my biochemistry degree. I know how it works from an intimate perspective.

Don’t get me wrong. I also know how I acquired HIV. Another fact which, up until I came to write this speech, I felt was irrelevant. I would like to say that I don’t regret my behavior which lead me to becoming positive but, in all honesty, I do!

You see, I felt so deeply unhappy with myself, in so much pain and self loathing that I went out to punish myself. I am not one of those guys who was lied to by his partner or who made a silly drunken mistake.  I am not one of those guys who played safe all his life and acquired HIV through a broken condom  or oral sex or a needle stick injury.

I took risks. Reckless, uncautious, careless and irresponsible risks.  I took these risks in full knowledge that I would probably ends up wit HIV but I was trapped in a mental state of mind that it was going to happen eventually anyway so it did not matter.

I found myself immersed a hedonistic world of endless sex and partying. I worked on the gay scene in a sauna so was constantly surrounded by sex. Most of my friends were HIV positive and preferred to have unsafe sex. So the inevitable happened. But me being me, I managed to not only get HIV. I also was diagnosed with Hep C at the same time.

So who had I got both virus’s off?
I don’t know. It could have been any of many
And actually, the only person who was really responsible for my acquisition of both these virus’s was me.
Do I regret this decision? Yes
Do I regret my behavior? Yes
Do I wish I had gone about things differently? Very much so!

But regrets are irrelevant right?
They are the signs of a weak person?
They show that you are not accepting the consequences of your actions.
Of course they do, that’s why they are regrets and anybody who says that they have no regrets is a liar. It is normal to go through the “what if” scenarios. To look at the colour of the grass on the other side of the fence. To imagine how things would have turned out if only you had made a different decision. 

The news of the double diagnosis hit me hard.
I had got what I asked for and there would be no going back.
The following 18 months of Hep c treatment. Going to the clinic every 4-6 weeks.
Dropping out of my PhD as a result.
Working as a escort to help pay my bills
The depression. The weight loss. The mood swings.
Pushing my family and friends away

A year into my diagnosis I was 50 kilos. I had lost over half my body weight. I could not eat much and had constant chronic diarrhea. I could not concentrate on much, was constantly tired and to be honest, I was about ready to give up.

In the space of a year I had gone from a first class graduate and PhD student. A lively and vibant man on track to an exciting career in academia to a weak, sick, skinny rent boy living in a squalid cold bedsit in Liverpool.

The decision to start me on meds sorted my body out.
The Man who I share my life with now sorted my mind out.
Without these two things I really believe that I would not have made it into the new year.

I am a dad
I have 3 amazing kids
They do not know I have HIV
They do not need to know as they are too young and at the moment my HIV is not making me ill and my meds give me no side effects.

They did know about my Hepatitis. But this was while I was on my treatment and underwent dramatic weight loss and mood changes.

Being a Gay dad in itself throws up its own interesting set of questions and puts you in a powerful dichotomy. You want to go off and live the care free, glossy magazine hedonistic gay lifestyle. The bars. The clubs. The holidays. The sex. The drugs. But you also have to keep a foot firmly planted on earth. To be a responsible role model for your kids. My decision to take both feet off the ground and dive into a purely gay lifestyle for a while back in 2009 was based on my own selfish need to run away from all the problems in my life. Historically I am very good at this. Running away. I recognize that now. I think deep down I can be a very selfish man.

I would have liked to have thought I was gonna be this strong man up on the stage spouting how i had overcome adversity and stigma and held my head high… but i think the reality is that I have not yet properly dealt with being positive yet. I feel strong and i come across like it isn't bothering me but deep down i know that is just a clever deception

The man I am today. The Rich you see before you is a very different person from who he was a few years ago.
On the surface I seem to be a lot more confident.
On the surface I seem to show that being HIV positive does not affect me
On the surface I appear to be an open book and that my life is on display for all to see.
On the inside I am seriously messed up
On the inside I have really started to stress and worry and care what others think of me
On the inside I am very scared and insecure

I find it easier to talk about other peoples problems.
To offer strength and support to everybody else who is in a crisis
To give guidance to those who seem to have lost their way.
I find these things easier than having to sort out my own problems. That would require me to acknowledge that there is something wrong in the first place.
I feel that getting up here today and telling you all this is my first step to really coming to terms with my status. For once I have stood up and acknowledged to myself that I am not alright and that it is not all a bed of roses.
But do you know what.
It could be a lot worse.
I have a great man who loves me
I have 3 kids who love me
I have some amazing friends who love me
I have everything a man needs to help me get through any problem.

I feel that I have found a place in a community where my voice does make a difference. I am not ashamed of being positive.
My positive attitude towards HIV and the fact that I am so open about my status does seem to have resonated with many others.
The blog that I write, while it serves the purpose of providing information to others about living with HIV is also in a way quite cathartic for me.
And recently I have started to volunteer for THT.
Right now I look after myself. I eat well. I work out. I drink and smoke less. I have never looked after my body so well as I do now. Is that just my age or is it the knowledge that I have a life long chronic illness? It does seem a bit sad if it is the latter. I mean, why does it take a virus to make me look after myself better? Go figure.

I am horrified at just how ignorant many still are about HIV and how there is still such a stigma attached to something which has been around and in all our lives for 30 odd years. It is the stigma which I seem to have focused on most in the past 2 years. Probably from my own fear of being judged. The way I see it is if I can make everybody see that HIV is not something to be feared and that is it just a fact of life for us all then it will prevent me from having to go through the pain of rejection, isolation or being shunned. Fortunately I live in the UK. I don’t think my liberal attitude and open expression of my status would be looked on in the same way in many other countries across the planet.
I think I was foolish to believe that coming to terms with being positive was a quick and easy process but feel that after today I am a little bit closer.

I have recently had a phrase tattooed onto me:
What doesn’t kill us makes us stronger.

HIV most probably isn’t going to kill me.

But is it making me stronger?

I don’t know. But there is something about the phrase that gives me hope.