The conference of death

Written by Kerry Cullinan

AIDS pandemic forces communities to confront two of the world’s most uncomfortable taboos: death and sex, conference learns.

Death and sex. That is what the AIDS 2000 conference is really about behind all the meetings, debates, symposiums, graphs and statistics.

The AIDS pandemic is forcing communities across the world to confront our two most uncomfortable taboos: death and sex. Sex, generally regarded as one of humanity’s most life-affirming forces, now carries with it a virus that can cause a slow and terrible death.

And although the conference was scientific in focus, time and again cultural and religious beliefs about sex and death came in as complicating factors in the fight against HIV/AIDS.

“In India, we believe in fate,” says Dr Sunti Solomon. “No matter if you are on antiretroviral drugs [to slow down the progression of HIV], or what. If it is your time, it is your time. Definitely it is so.”

Young people in Umtata’s Ngangelizwe township felt similar when interviewed by researcher Karen Woods.

“There is a belief in an all-knowing, all-powerful God,” said Woods. “Young people say that ‘if you are supposed to die of AIDS, you will. You could die tomorrow so you might as well enjoy yourself.”

In Zambia and Uganda, many HIV positive people do not want to write wills as planning for death is seen as an invitation to death.

But others, like Agnes Nyamayarwo from Uganda, have come to terms with their own mortality and are now trying to prepare their children for when they die.

Holding a thick blue book with the hand-written words, “Peter’s Memory Book”, on the cover Nyamayarwo explains how she grappled with whether to tell her children that she was HIV positive and how to explain her husband’s illness and subsequent death.

“But somehow children find a way of knowing,” says Nyamayarwo, has been living with HIV for eight years. “At school, when my four-year-old took out his lunch another child warned the others not to share with him because he was HIV positive, his father had died of AIDS, and his mother was also HIV positive. I felt very bad that he had heard this from others and not from me.”

Her 17-year-old son “suffered a mental breakdown” after hearing that his parents were HIV positive.

“He was in denial. He said his parents were good people so they could not have got HIV. Then one day he disappeared from school. I have not seen him for seven years.”

Nyamayarwo and many other women all over the world are now making memory books for their children. In these, mothers are writing down family histories, memories they have of their children from birth onwards, any photographs, pictures — anything that will give a child a sense of identity and an idea of who their mother really was.

Importantly, too, organisations supporting HIV positive people in countries such as Tanzania and Uganda are encouraging their members to write wills that explain who they would like to care for their children once they have died and how their possessions should be divided, to stop “property grabs” by relatives.

In the West, however, where many HIV positive people have access to drugs, some experts are now describing HIV as a “chronic but manageable disease”. In this case, it’s not just the old story of western denial of death. Money enables wealthier HIV positive people to “purchase their health” as Judge Edwin Cameron describes the taking of antiretrovirals.

But the silver lining of antiretrovirals has its own cloud. In San Francisco, for the first time in years, HIV infections are increasing amongst gay men who have become complacent in the mistaken belief that HIV can be cured by antiretirovirals.

Sadly, a keynote address by Professor David Ho shows that the virus is very sophisticated and never disappears from the body even when powerful antiretrovirals are used in combination.

Even more sad were the overwhelming reports from all over the world of HIV positive people being driven from their homes and communities as if by banishing them, their persecutors could somehow stave off death, sickness and even “bad luck”.

South African AIDS activist Mercy Makhalemele found out she had HIV and went home to tell her husband. He beat her and threw her out of her home. The following day, her employer fired her.

A number of speakers have talked in terms of jumbo jets and wars  if as many citizens died in an air crash or were killed by a foreign army as those dying of AIDS, the United Nations, governments, big business and ordinary people would be galvanised into action, they argue.

But because of the slow progression of the disease, AIDS sufferers die one by one and many die without even knowing what killed them.

But dying they are. The AIDS quilts, made in memory of all those who have already died and hanging in various halls of the conference, make that quite clear. “Simphiwe, I miss you,” says one patch. “To John, the love of my life”; “To all my friends who have already gone”. Here and there, a teddy bear, a babygro or a little T-shirt makes it all too clear that even the very tiny are not being spared.

In so many ways, the AIDS pandemic is so overwhelming that denial is an attractive option. When the young and gorgeous, the middle-aged and dignified, the men, women, youngsters stand up and say that they are “living with HIV”, it is tempting to say that this is not possible. That they look healthy and normal, just like you and me.

But with a vaccine for HIV at least 10 years away, the best that humanity can do is to alleviate the pain and suffering of those already infected and to make their deaths as comfortable as possible. Health-e News



About the author

Kerry Cullinan

Kerry Cullinan is the Managing Editor at Health-e News Service. Follow her on Twitter @kerrycullinan11