Anything but ordinary: 100 things about me- # 1-20

Anything but ordinary: 100 things about me- # 1-20

HIV/Stacey

We exist in an age when "universal HIV treatment and prevention are medically and socially possible, and politically endorsed, yet remain poorly implemented" - comment by UEL social sciences professor Corinne Squire, who just wrote a book drawn on narratives from 37 people infected with or affected by HIV in South Africa. I found the comment in my local paper, the Newham Recorder, and I was very surprised.

It's news to me that universal HIV treatment and prevention are politically supported - and while a Kenyan woman can lose her job because she's very ill from the effects of anti-retrovirals after a rape, this is one of those policies that remains pie in the sky.

That fact that it's possible, yes, that's true. But it's a huge job, and I must say our attempts to help Stacey have not been effective in the long term. The next thing we tried just fell flat, and I'm not sure we're going to have another go. My sister and her friend hatched a plan to do a performance based on Stacey's story; they wanted to raise funds for her, or for an HIV charity that would support her, using her story, recorded and played back somewhere in the East End of London along with stage performances by various artists (my sister's a singer). Because it's very hard for people to put a face, get a deep human reaction to how it is, dealing with HIV and violence against women in Africa.

Stacey said listlessly, "It's okay by me ..." but we needed her to be able to help herself in some degree, at least to meet someone to make a recording, and she couldn't pull herself together enough. I pointed out that her baby had just died three months before and she was still depressed, would be for years maybe, and we tried to collaborate with Joyce to figure out how to help her move forward, but the project died for lack of oomph.

Also if she wasn't helping herself it became a little difficult to ask people to help her. When I was in a state like that, when all the world looked grey and scary shortly after the birth of my first born, my GP sent me for six months' therapy. That was three years ago. I'm still experiencing growth because of that six months of counselling, seeing one thing or another more clearly suddenly as a result of the trains of thought I started then. It seems so little to have had such an effect, sitting down and talking to someone for one hour a week. But that's not all it was, was it?

My GP cared, he thought I had a problem that merited action. He didn't cavill and hedge about the cost. There was no question of paying for it. There was no problem finding the time or the energy, because I had a year off after the birth of the baby with no fear of losing my job. All I had to do was find another mum who could take care of my daughter for two hours a once a week, and other mums with babies the same age were all at home too. All these things were evidence of my society's support of me, of us, of my casually accepted right as a human being to be cared for humanely. I think much of the time health is a spiritual question. Certainly mental health is.

Michael Moore was on telly the other day talking about his new film of the US 'health system'. He's not a pleasant person, I can see that, and he manipulates facts, but often the truth is more than the facts. He remarked that the poorest Britons live longer than the richest Americans, and this is certainly not because our medical gadgetry comes anywhere near theirs.

He was saying that just because we don't have to worry about our ability to pay for any care we may need, we are healthier. No money worries = better health. Nobody is weighing up our illnesses on the bottom line. I've had a lot of dealings with insurance companies of late and I NEVER want anyone toting up how to make a profit out of my illnesses. I had to deal with them when not at my most robust, just before and just after delivering a baby, and as a result I'm £8,000 out of pocket and had a nightmare birth experience. I NEVER want to have to deal with them about paying for my care when I'm in pain. I pay the same NI payment as my uncle does in the US on his health insurance, but I get a much better deal.

A universal health care system for everyone is what is needed. I think that would go a long way to erasing the HIV stigma. But what to do for Stacey, in Kenya? I don't know.