Day 1 of Treatment - Anna

We meet Naledi. She is a shining light. A gorgeous smile. She tells us about taking over charge of her sister’s little girl, who was on the street after her mother died. About her sister’s death, and the death of friends.  All from AIDS related illnesses.

Teddy arrives to take blood samples. The best phlebotomist one could hope for. A paramedic too, he has been taking blood for 15 years, and is studying for a PhD in disaster management. Travels to disasters at his own expense and helps out. 



Alaena having her blood taken

He is generous, warm, and open-spirited. Proud of his ability to take blood without it being felt. He dresses the burn I acquired before I left and gives me a grapefruit to lower my blood sugar.

We are eating very well here - competition for cooking - lovely fruit salads, vegetables - we are looking after each other very well - nurtured on every level - hugs, listening.

At 7.30p.m. we drive down to Cameron’s apartment for the first treatment.  Cameron brought this treatment to South Africa ten years ago. Since then, clinical trials, safety approval, but still waiting for the promised approval for commercial use.. Cameron meets us in shorts and a T-shirt, and red eyes.  He is poorly, and looks very different from the businessman I remember from far distant meetings in London.

Cameron’s apartment is white and simple, comfortable and clear. On a table sits the equipment which we hope will make a difference - boxes containing samples of proteins which are found in the HIV virus - and nowhere else, boxes which emit, amplify, and measure electro-magnetic fields. The equipment has been on for several hours, building up the field. The strength of that field will be amplified over the new few days, as the viral proteins within the bodies of Clive, Alaena and Naledi add to the resonance.

The HIVEX Machine

Everybody is struck by how simple this is - mental images of electrodes, confinement in metal tubes, a hospital environment, scotched. We sit, chat, talk about how we feel, laugh. Every one of us is a poet, and I decide that that is what happens when we talk completely honestly, courageously, stripped back to our essence. Each one of us tells our story - how we got here, the high and lows, our hopes and dreams, our gratitude that we are here, our sadness for those who are not.

We have been trying to get in touch with two young Malawians - one very ill, wheelchair-bound, with Karposi’s down to the bone. We know that they want to join us, but the person who is in contact with them has disappeared into the countryside, and we cannot contact them. Sadness about the difference we might be able to make to their lives interrupts other feelings.  Where are they? Can we pray them in?

What do we feel that first day of treatment? For me, anxiety. What if it doesn‘t work? What is I have created hopes, to dash them? What if people have come off Anti-retrovirals, only to go back on? I have worked on this for a decade. I think that Cameron, Jodi, and the inventor, Boris, are great people. I believe them. I have the comfort of clinical results. But what if I am wrong? This is such a big deal for all of us involved. I have put a very great deal into making this happen over the last few months, Michaela has left her life in England and has come here to see how she can help, Danielle has delayed her return to London from Malawi where she has been working as a volunteer for months, and as for Clive, Alaena and Naledi, they are brave - the first to have these tests, the first people to be tested who have given up anti-retroviral, at their own wish, to be treated. `All of them want to stop taking them. Alaena is very healthy - undetectable viral load, high CD4 count - and she has taken drug holidays before . She has been HIV+ for a very long time, and glows with health. Clive has twice been in full-blown AIDS, has experienced dreadful ARV allergies, been very ill. But now, his health is good. He is quire well-maintained on his current ARVs.  Can live with his ARV-induced tummy . Why did he decide to stop taking his ARVs when his doctor said “Don’t”? Because he felt that it was important that he should throw himself into this completely. Wow. I am in awe.

Both Clive and Alaena stopped taking their ARVs a while ago, but Naledi has just joined us. We don’t ask her, but she announces that she too has stopped taking her medicine. She is fed up with it. She is happy, grateful. To God, to us…

The mood on our first night, is that we KNOW this will work. We don‘t know how, but we know… I pray that we are right.

I can‘t sleep. My mind is racing. What if?  Is it OK?  OMG.  I feel so responsible…