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Living with HIV: When things fall apart

01 Dec, 2009
By: Alice Welbourn

Last month my second son, Jack, would have been 17 years old, were it not for AIDS. That’s how long ago that I learnt that I am HIV positive. I was 33. That means a third of my life has now been spent with my knowing that I share my body with this bug.  How does that make me feel?

Physically speaking, I am very healthy, You can see that just by looking at me. My CD4 count is 650 or so and last month I cycled 45 miles one day on holiday – and apart from a sore bum, felt just fine. So I won’t dwell on all that.  I know that many around me, even here in the UK aren’t nearly so lucky.

But as so many of us know, HIV is a whole lot more than just a physical bug, even though others might like to think that it is, now that ARVs have been around for over ten years. But for me, as for so many others of you, here and round the world, my HIV diagnosis was just earth-shattering.  The mental health consequences of an HIV diagnosis on most of us are completely under-estimated.

What I have also learnt however, over these 17 years, is that my HIV diagnosis was also a great gift, which has in so many ways totally changed my perspective on life.

American spiritual teacher, Pema Chödron, wrote “when things fall apart and we’re on the verge of we know not what, the test for each of us is to stay on that brink and not concretise….when things are shaky, we are on the verge of something.” These words speak volumes to me when I remember back to my diagnosis in 1992. I was expecting a baby, full of joy as he grew inside me. Then my world fell apart with my diagnosis. It seemed best then that I should lose the baby – Jack - with a termination. I grieved for his death - and for mine - for a full two years. But you never really get over these things. You just get used to them.

In those early years, I lived near Oxford. My diagnosis was a tightly held secret, known only to my husband – who has remained negative, and a few close friends and health staff. I functioned somehow, but most of life was a blur. I found the local support group – a lifeline called OXAIDS – and started volunteering. To start with I was so hopeless I couldn’t even file papers. But soon another positive woman – a nurse – and I started a women’s group, which is still thriving. There we met and shared and laughed and struggled our best to cope with this death sentence we all faced.

I met some very special people in this bizarre parallel world of Oxford we all inhabited. We know of Philip Pullman’s parallel world of the Northern Lights but this was – and is – another parallel world there of ordinary people to whom an extraordinary thing had happened – an HIV diagnosis – which had changed our lives forever and which we dared not share with anyone. If we had survived a train crash or a bomb attack, God forbid, all arms of support would have been there for us. But we hadn’t. We had HIV. Of course, the human spirit being what it is, extraordinary resilience emerged and I was touched by so many whom I met. There were the wonderful team at OXAIDS, for a start, and the Bishop of Oxford and Mrs Harries, who opened up their home for us for a retreat day each summer. There was the lovely Kim, an elf-like creature, a young former drug user from Scotland, who had moved South, with the huge courage to break away from her friends and the drugs, to kick her habit and start a new life working with horses, which she loved. But then she realised that a legacy of those days had come with her, in the form of HIV. She soon slipped away and died and I found myself in a lonely cemetery somewhere in the West Country questioning the senselessness of her loss. There was a lovely African couple, highly able students in Oxford, full of life and laughter. Then AIDS caught up with them. He died suddenly first, and a year later she too was gone and I found myself at her funeral also, full of devastated mourners, not sure again who knew what and daring therefore to say nothing. There were wonderful gay young men who had grown up struggling with their sexual identity, who had faced the rejection of their families through being gay, now having the double rejection of HIV to deal with. They too just wasted away and died. There was Dave, of Body Positive. He died too and I just couldn’t manage to go to his funeral – we all kept wondering which of us would be next.

These events forced me to address and deal seriously with the really big questions facing all of us in our lives, no matter who we are or where we come from. These questions included: who am I? who are we? what is life about? what is death about? what are gender, sex, our belief systems, our values, our relationships with those around us about? But then slowly I began to rebuild my life, realising that I needed to be there for my older children, that maybe I wasn’t meant to give up just yet, that maybe there was something very important to be learnt from all these experiences. Even though those years were so deeply painful, with all our otherwise perhaps unlikely friendships across new overlapping circles quickly getting torn up by the roots through sickness, rapid deaths, and just too many funerals, there was still a shared sense of wonder amongst us of this unreal journey into reality that we were all making together, deeply aware as we were of our shared borrowed time, our shared mortality, our shared humanity.

When ARVs did arrive they were at once miraculous and a new challenge. I still remember vividly the Lazarus effect of one friend who had been wheel-chair-bound bouncing into our support group to announce that she had just been riding. A wondrous marvel indeed. But at the same time, I felt a sense of fear that I might somehow once more begin to be filled with the hubris of imagining that I was going to live forever. How could I hang on to that gift that that glimpse of my mortality had offered me?

All of us in the world are dying, from the day that we arrive in this world. But most of us spend most of our lives imagining that death will never happen to us. We fear death and dying and the suffering that they will bring. Those of us with children especially quite naturally weave all the magic that we can into our lives, to protect ourselves from death before they have grown up, and to protect them from death also.

But I think many of us agree that this diagnosis, maybe especially because it is one which we have experienced in secret, gives us a sudden and immense new perspective on reality. It has made me realise how fragile life is and to try to treat each day and each relationship with far more care.

I have been surrounded by my husband, children and others who have gone on loving me, supporting me, giving me all the care and treatment that I have needed. I have been able to continue to lead a life fully integrated into my community, and fully involved in all decision-making about what happens to me. But as we know only too well, this is very far from the reality for most HIV-positive people in the world, here in Britain also, who are shunned, ostracised, blamed and excluded from life by their communities, and then die very scared and lonely deaths.

People say the best HIV prevention education is for people knowingly to meet someone like themselves who is HIV-positive. I believe this to be true. However, only if there is a supportive environment for those of us with HIV will we be able to summon the courage to speak out and share our experiences. So I hope that this World AIDS Day will enable us all to understand more clearly how important it is for us all to question and challenge the widespread lack of understanding about HIV, as well as the widespread negative attitudes towards those of us with HIV, so that we can all learn from each other how very easily HIV can - and does - affect us all.

We are all part of one big humanity on this earth. We have learnt the hard way how HIV doesn't happen in a vacuum. HIV is about sex and death – and life and relationships. All those big universal imponderables. Attitudes towards HIV and people with HIV are firmly rooted in racism, in sexism, in homophobia, in our attitudes towards people who use drugs other than our own – and let’s remember here that alcohol too is a drug. But HIV is not caused by women, or “bad” people, gay men, foreigners or drug users. Blaming sections of society who are already in some way marginalised by those in power is a common ostrich position reaction around the world.  Yet it is also a dangerous and false analysis, although it may offer others short-term comfort to blame those whom society already scorns. In some parts of the world, where the sheer numbers of people who have died have woken up their friends and families to the realities of HIV in their own lives, there is a slow realisation that this approach is like blaming the leaves of a dying tree, as they whither and fall. But most of us still fail to ask why the leaves are turning brown and withering in the first place, or realise that we too are leaves on this same tree and will one day also be affected by its condition.

I believe strongly that the root causes of HIV in all societies – and how we respond to our diagnosis - are related to imbalances of power, wherever we live in the world: between men and women, old and young, rich and poor, higher and lower castes or classes; between those who feel loved, cared for and respected and those who don’t; and between those who wield political power and those who do not. Someone reminded me the other day that the word “radical” is connected to the Latin word for “root”. If that is the case, perhaps we should all proclaim ourselves to be radicals, since somehow we all of us need better to understand how HIV breeds and flourishes, here in Britain also, on these root inequities and injustices in our lives, and the collective reluctance of those who do have power to look at or challenge them. The stories I heard from other women at a recent Pozfem UK workshop left me shocked by how ignorant I myself am about what has happened to HIV positive asylum seekers and HIV positive drug users, here in Britain, in what we call a civilised democracy. So we need to find the courage to right these injustices and, in doing so, also halt the spread of HIV, here too.

I have also learnt that life and HIV aren’t just about me. They are about us – we in the world, together – how we interact with one another, learn from one another. About whether in the face of adversity we batten down the hatches, and lob grenades out of our bunker at anyone else who may be left outside. Or whether we open up, share what we can, seek to reach out to enquire, to learn from and to understand one another better. And it’s not just HIV I’m talking about here.

No one individual can overcome HIV in the world. No one sector can overcome HIV. HIV isn’t just a health issue. It’s not just about education. It’s not just about religious beliefs. It’s not just something you can stick a law on. It’s about all of us and about all these sectors reaching out and working together, across professional and national boundaries to root out our “us and them” mentalities which fuel and fan this virus. We in the West have very much fallen into the Cartesian philosophical trap of focusing on “I”-dentity and have, I think very much to our loss, forgotten about our essential inter-connectedness, our humanity, our “we”-dentity. Satish Kumar, philosopher and ecologist, offers a traditional rhyme at the start of one of his books:
“From you I receive,
To you I give,
Together we share,
By this we live.”

That was what I learnt in practice in those early days in Oxford. That is what I want to go on holding on to. That is, I believe, what will help us all, eventually, overcome what this pandemic is all about. “When things fall apart, ….when things are shaky, we are on the verge of something.” I hope that I can hold on to what I have learnt.

This article formed part of an Ecumenical Service of Remembrance and Solidarity to mark World AIDS Day 2009 at Brighthelm Church and Community Centre, Brighton, England."