There’s no excuse to die

2011-12-01 00:00

DAVID Patient has lived with HIV for longer than he has lived without it. When he was diagnosed with HIV the disease didn’t even have a name. In San Francisco where he was living at the time it was called Grids (gay-related immune deficiency).

At the age of 22 he was told he had a life-threatening disease and would probably die. He returned to South Africa and has become one of the longest HIV survivors. His sense of humour and determination have set him apart from others who have become infected but Patient is not one to hog the limelight and he believes that there are others who should lead the way.

“I think my survival is luck with a fair amount of hardiness thrown into the pot. I have always been a survivor and at some level have always believed that no matter how bad things may seem at any given moment, it won’t last forever.

“I was diagnosed in March 1983, so I have pretty much been around HIV since it surfaced in the United States. I have been around HIV my entire adult life. I don’t know if I contracted it in the U.S. or in South Africa.

“I knew that I was not going to lie down and die. I was an adopted kid, I had learning disabilities and the last standard I passed was Standard 5 (Grade 7). I’m not special … not by a long shot, but what I am is determined. When I was told I was going to die, after the initial drama of it all, I saw it as a challenge to prove the powers that be, wrong, and 28+ years later, I’m still here, just to prove a point. So I say to others — what’s your excuse?”

His quest has been about informing and educating and most of all sending a clear message to others that HIV/Aids is about attitude and determination. Patient believes that no one has the right to judge others for their lifestyle, cultural beliefs and sexual behaviour. The only thing a person needs to know is that they must practise safe sex.

Patient, a gay man, left South Africa in 1979 to escape from the political situation and forced conscription. In 1983 when he was diagnosed­ with Grids his CD4 count was very low. Patient always advocated healthy eating and exercise and together with his partner Neil Orr, they have explored the mind-body link of PNI (psychoneuroimmunology).

“I have never been opposed to the use of ARVs (antiretroviral) medication. In fact, I helped smuggle these medications into the country for others before they were freely available here. But the initial monotherapy using AZT in massive doses was highly toxic and had dreadful side-effects. Of the original trials only two of us are still alive. So I quit the first trials in 1986.

“A few years back, my CD4 count started to drop and once it got to around 360/350, I opted to go on ARVs again as my body needed them. I was also attempting to become a father and knew that this would reduce the risk of transmission to the mother of my child. Sadly we never had kids and I have stayed on ARVs. I feel good.”

Patient was involved in safe-sex education campaigns at schools for many years which gave no-holds barred information to curious teens. He believes there is much more to be done in this area.

“I did five years of school education shows and I got tired of being the Aids poster boy. Neil and I wrote a book based on the experiences and it is used in the life skills courses in Gauteng and in the Western Cape. It’s called Sex Secrets. It’s published by Juta.”

Patient says that school curricula are still too coy and they need just to give the facts about sex and the truth without adding fear and cultural prejudices. “What parents need to get their heads around is that your child does not need your permission to become sexually active. Most kids just go ahead and do it. I think the problem is that so many people have sexual dysfunction at so many levels that rather than deal with it head on, they shove it under the carpet, hoping it will go away or sort itself out and then simply deflect and pass the dysfunction onto their kids.”

Patient believes that although South Africa has made some colossal mistakes in the past with regard to HIV treatment he does see some light at the end of the tunnel. “More people are getting tested, and South Africa has the largest roll-out of ARV’s in the world. Fewer people are dying. More are seeking help. So, yes I’d say we are getting somewhere.”

He says the biggest problem is that people are still waiting too long to get tested and are arriving at the hospitals when they are too sick to benefit from the medication. He rants at the ignorance that allows people to die in the name of culture. “If there are practices that perpetuate transmission then we need to have the balls to have some very difficult conversations around the action-behaviour and bring it into the light of day so we can learn and make behaviour changes that are needed.”

Patient describes how he has experienced discrimination because of HIV, and he says that he soon learnt that people treat you the way you allow them to treat you. “Back in the very early days, I realised that ultimately I have to take responsibility for how I am treated. If people treat me differently I point it out. So I use it as an opportunity to teach them, or through more hectic methods, including discrimination law suits.”

He says that the worst issue regarding the stigma of HIV/Aids is one of internal stigma — self-loathing. This is when people fear that they will be treated differently if they are tested HIV-positive. He says the fear of the disease is often worse than the reality.

Patient has lived with HIV for so long that he hardly thinks of it. “There is so much more to me than my infection. The way I see it is that my body is infected with HIV, I’m not. I have to live with the fact that people will always say: ‘Hey, there is the guy with Aids’,” as I chose to be an activist.

“But I’m not sorry. If I hadn’t spoken up, who would have? I am very clear on my purpose and HIV has made it abundantly clear — to provoke and inspire people. If it were not for HIV, I would be a very different person. I would have taken different paths and based on where I was headed in the eighties (sex drugs and rock and roll) I’d be dead today, so in a strange way, HIV saved my life. It was my wake-up call.”

Patient says he never used to think about the future, and for once in his life, at 50, he is able to plan for his retirement.

“It is something I never thought for a moment I would ever live to see. I was supposed to die at 22. I’m nearly 51 and am fast approaching 30 years since my diagnosis and I’m still standing. It’s funny because back in the mid-eighties I ran up my credit cards, spent everything like I had a few months left to live. I cashed in policies and partied till the end, but the end never came, just all the bills.

“So having done that once, I’m now older and wiser, and I plan on being around for another 25 to 30 years. I want to be here for the cure and the day it is announced I’ll get so excited that I’ll probably die from a heart attack.”

• Read more on Patient’s story on his website

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