Interview with David Patient

Jeanne Viall

David Patient is an extraordinary man, and not only because he’s been living healthily with HIV for 20 years. David is a wonderful warm being with an open heart and a dedication to doing something practical about HIV/AIDS. His story is an inspiring one, and while he doesn’t claim to have all the answers to why he’s survived when millions haven’t, his outlook on life, AIDS and what it’s all about is inspiring.

I first met David at an international conference for people living with HIV/AIDS about 7 years ago, and he was a breath of fresh air with his frank, no-nonsense approach to his HIV status. In those days we knew little about HIV and spoke even less about it. I was fascinated by this man who had lived a relatively healthy life with HIV for 13 years then, while others were dying within a few years. He was already considered a curiosity, and he spoke of dialoguing with his virus so that he could co-exist with it.

His thinking about HIV was clearly outside the conventional box. And it still is. Today he has a CD-4 count that falls within the normal range and his viral load is relatively low. He is South Africa's longest HIV survivor, and one of only a handful in the world who have lived so long. He takes no anti-retrovirals.

In those early years, while living in the United States, he did take AZT as part of the initial human trials of the drug. ‘But I found that my body didn't respond well, so I stopped taking the pills,’ he says. ‘This, however, does not mean that I am anti-ART (anti-retroviral treatment). In the event that I ever need to, I will take the medication. I do have a predisposition to lung infections and despite my good immune system, I still get pneumonia a couple of times a year, but like everything else, I deal with it and get over it.’

David has been prodded and probed by dozens of researchers trying to discover why he has never progressed to AIDS. ‘At one point I was travelling 280 km, twice a week, for almost 3 years, so that I could give my blood, lymph nodes, spinal fluid, etc. But when I left the USA I made a choice not to carry on giving my body to science’. ‘I gave of myself for almost 11 years and that was my contribution to science. I have been studied by the who's who of HIV, including all three of the co-discoverers of the virus, so I feel I have done my bit.’

David attributes his ongoing health to working on all levels ­ physical, emotional and spiritual. ‘Firstly, understand the disease and immune function, what you are up against and have as much knowledge, if not more, than the so-called experts. Secondly, do the work. I had many unresolved issues in my life and I took each one, head on, and confronted them, my dragons if you will. Most people are dealing with a complexity of issues before they are diagnosed and their diagnosis exacerbates these pre-existing conditions. I started taking a long hard look at who I had become and then set about doing the work to resolve these issues, one at a time. Am I “all better” now? No, not by a long shot, but I certainly have my shit together more than most people and I am still working my issues and not avoiding them.’

David's daily programme is not exceptional: exercise, good nutrition and adequate sleep. ‘My philosophy is: Empty what is full; fill what is empty and when I have an itch, I scratch. I am just an ordinary person who has been very blessed with an extraordinary life.’ David was diagnosed on his 22nd birthday on March 13 1983, before HIV had been identified, and told he had this new disease and probably had no more than 6 months to live.

His initial response was relief, strange as that may seem. ‘I had been highly self-destructive for many years, having attempted suicide nine times, so my initial response was that I was finally going to die and all those people who had been ugly to me in my growing up years would now be sorry,’ he says. ‘My response was one of revenge, not directed at the person who infected me, but at all the teachers, students, family and friends who all had their labels for me, like hyperactive and stupid, and who said I would never amount to anything in my life.’ This soon faded and within a month of his diagnosis, several friends died. ‘The reality then kicked in that this death was not a fun one and nor was it “pretty”, so my images of me dying a “lovely young corpse” were shot to hell.’

He decided to kill himself as he didn't want to suffer. And this is where, in his own words, things became strange. ‘I was living in Las Vegas at the time and I went in quest of a cliff. Just as I was preparing to jump I heard a voice say “you're not going to die” which I promptly ignored. It happened again, only this time it was a bit louder. I tried to ignore it again and again it said, “You're not going to die”. I stepped back from the edge and just started crying. Was it God? Was I having a psychotic breakdown? Had I done one too many acid trips?’

Whatever happened that day, David left the mountain having made the choice to give living a chance. He decided he would spend the next 20 years finding ways to stay healthy. ’My logic was that in any holocaust, war, plague or pandemic, there were always one or two people who lived to tell the story ­ and why couldn't one of those people be me? Somebody had to stay alive to tell the story for all those who had died with their song still in them, unsung.’

That was a powerful moment for David and today he says he's grateful to HIV for entering his life. ‘It has been by far my greatest teacher and I would not be the person I am today had it not been for AIDS. HIV has allowed my authentic self to emerge. I am very comfortable with who I am, what I stand for and the course of my life.’ Over the next few years he became an activist, doing his best to put AIDS on the agenda. Then he and his partner Neil Orr, a research psychologist, compiled a booklet, Positive Living, a resource booklet for HIV-positive people, containing thoroughly researched (and highly cost-effective) physical, nutritional, and mental methods for enhancing health and longevity. There’s a wealth of information in it and the booklet is in its second printing.

David has left the world of activism behind. ‘I just do what I do and don't really get too caught up in all the politics around HIV/AIDS. Twenty years of being around all HIV's politics have hardened me somewhat and I have little, if any patience left. We're coming from “Lead us, follow us or get the hell out of our way”.’ He may no longer be an activist, but he's very active. He and Neil Orr are working for the National AIDS Council of Mozambique, on a programme called Vida Positiva/Positive Living, a behaviour change model the two have created over the past 10 years, which had been funded by a pool of international donors. The programme is comprehensive, covering every area where AIDS makes itself felt.

Nutrition is only one component of a much larger process, which includes empowerment (individual and group), the basics of HIV/AIDS, basic immune function, health motivations, behaviour change, nutrition where there are no resources, sustainable farming, the basics of psycho-neuro-immunology, basic counselling skills, basic therapy skills, stigma and discrimination, assessing needs, caregiver issues, orphan care, mobilising one’s community into action, AIDS activism, home-based care where there are no resources, working with the dying, grief therapy and multiple losses.

AIDS, he believes, is teaching us many things, such as honesty, communication, and valuing others. ‘Perhaps its greatest lesson is about empathy and caring,’ he says. ‘However, I do not recommend that people get infected to learn the lessons I have learned. It has been anything but easy and there have been many periods where I have experienced the “dark night of the soul”. I have buried more people than I can remember, including three of my own partners. I have seen the very worst side of human nature and on the flip side, I have seen the very best side of human nature. I have learned and am still learning, many of the lessons HIV is here to teach us. For me, HIV is a symptom, not a cause. HIV is not the enemy. It only enters when a door has been opened for it: ignorance, fear, poverty, inequity, social injustice, isolation and greed are the guilty culprits, not the virus.’

David is ‘not remotely religious’ he says, and has little time for religion. But his belief in God has been his biggest support. ‘For years I turned my back on God blaming and accusing Him/Her/It of punishing me/us with HIV. Then I realised that God has nothing to do with HIV, I brought HIV on myself. I came to know God, not the God of punishment and retribution, but God as my closest friend and my partner who needs me to be nothing other than who and what I am.’

Plans for the next 20 years? ‘More courage, more dreams and more wonder. I’ve learned that dreams are essential because it is dreams that make the impossible possible. I have also learned that without faith in myself, others and God, the lessons of HIV are wasted. The most important lesson is about LOVE, for without it, we are nothing. To know and love another is the only way we learn about who we are. As I look forward to my future ­ despite HIV ­ I am excited at all the possibilities, opportunities and lessons the next 20 years will bring.’

HIV, believes David, is about equity. ‘When men can respect women as more than life support systems for a vagina and women claim their rights, then HIV will start to decline. But with all the cultural beliefs around the role and rights of women, HIV will stay entrenched in our reality.’ His personal lesson, he says, is that people treat him the way he teaches them to treat him. ‘When somebody treats me poorly, it is because I have allowed it to happen and rather than point a finger in blame at them, I have to look at my role in the exchange. The other lesson I have learned is that I am the master of my own destiny. If my life is not working for me, the only person who can change that is me. Looking for blame or having guilt is like trying to solve a complex mathematical problem by chewing bubble gum ­ useless! Guilt is like a rocking chair, very comfortable, and it takes me nowhere. I use the two-foot principle... if where I am is not working for me, I use my two feet to take me to where things can work for me and I am willing to reinvent my life at a moment's notice.’

For people living with HIV, his message is: ‘Dare to dream! Create a future, despite your HIV infection and put it into action. Hell, what do you have to lose? Use HIV as the tool that gives you the permission to live the life you have always wanted and see your diagnosis as a second chance to get your shit together and live the life God intended you to live. What other people think of you is actually none of your business and you have no control over them and their perceptions of you. So stop wasting your valuable life trying to please everyone. Please yourself. Love all and trust a few.’