Heart of Darkness Redux
We are all familiar with a placebo, a sugar pill whose effects are compared with those of real drugs in clinical trials. Consider then the "nocebo," which works in the opposite fashion -- this sugar pill of information comes with a message that it contains deadly toxins and the person believes it and dies. Could this not be what happened at the beginning of the AIDS epidemic?
Tim McCarthy wanted to know and intended to find out.
Seeking The Source
Last year he decided to seek answers to his questions about his HIV infection by taking a quest to its point of origin in the deepest parts of Uganda -- in the heart of darkness, as it were. "We had no expectations," he states firmly, "except to look, listen, and try to understand the root environment where the virus first appeared."
Joining Tim were Timothy XX Burton, an African-American writer who would document the journey in word, and Peter Lien, photographer of Eastern European descent, who would capture the trip on film. Tim himself brought along his video camera to record the entire event with the camera-never-lies honesty he has developed over the years since he began recording a work he calls Gay Life in Our Times.
Tim McCarthy asked each of his traveling companions to develop a personal set of goals and objectives for the trip, based on where each one was in his life journey. Unlike McCarthy, both Tim Burton and Peter Lien are HIV negative. Thus this multiethnic group would be able to capture the experience not only from different cultural perspectives but through different experiences of HIV as well.
"The world in the 1980s had quickly developed a nocebo perspective on the rise of AIDS," Tim affirms, looking me squarely in the eye. "From the churches we kept hearing a chorus of 'We deserved it because of our gay lifestyles,' and from the scientific community we heard a fatalistic reply that 'There is no known cure and all will die from AIDS.' But what if the scientific community was wrong? What if our Western perspective had predetermined the shape of the puzzle and left out a critical piece or two?"
Tim wanted answers that went beyond the government's "war on AIDS"; he refused to accept the image of war as adequate. "A virus is a living being which is opportunistic and, like us, will do anything to survive. The virus was not particularly interested in humans but somehow found its way into our bloodstreams. When we use the image of war, we tend to think that chemicals and radiation are the answer. But chemicals and nukes did not bring down the Communists; the economy did it. The weapons of war bring destruction, but understanding how daily life functions can bring about change.
"Mind you," Tim cautions, "I'm not antiscience nor antimedicine, but I do not want to put all my eggs in those baskets." He summarized his starting point, "Nothing is dangerous in its own ecosystem -- only when you take things out of their context."
The Chimpanzee Connection
Just about the time Tim and company were trudging through Africa, the United States government announced that it had identified the source of HIV in Pan troglodytes troglodytes, a subspecies of chimpanzees native to Africa. But how did the transfer occur?
The scientists who conducted the study theorize that the virus was introduced into the human population when hunters became exposed to the blood of infected chimpanzees. Further, cross-species transmission may still be occurring because hunting and killing chimpanzees for human consumption -- the "bushmeat trade" -- is still common in the region. Tim explains that in the '60s and '70s, as the colonial period in Africa was coming to an end, new countries were forming and in some places despots such as Idi Amin were coming to power. Large numbers of people were displaced, along with their food supplies, and people ate what they could get.
Thus the transfer began locally in remote villages. Meanwhile, civilization began to spread inland through new roads. A major road into the Congo was built, increasing traffic into the heartland of Africa. Along that road came everything, good and bad, and it eventually became known as "the AIDS Highway." Local prostitutes had already contracted AIDS, and truck drivers frequented prostitutes. These returned home carrying more than goods for market. The same scenario was repeated in other places with other diseases, each finding its way into the human population.
How do the Ugandans see the roots of AIDS? Some blame Idi Amin, who went to war with Tanzania, created refugees in the process, and they say brought on a curse as a result. Some also claim that the disease was a consequence of genetic engineering in the U.S.A. with something brought back from the moon. Others believe that it was the result of some form of bizarre sex with animals.
The African Response
Our Western society was unprepared for its arrival and, before it could even be identified, the virus had spread in the gay male community. Churches pounced on the coincidence and pulled out their big "guilt" gun, condemning the gay lifestyle as the work of the devil. Meanwhile back in Africa coping was already under way.
Their methods of coping were different from ours. Tim Burton was prepared to expect the worst, especially after reading the "Dead Zone" reports in the New York Times, but when the team arrived he discovered that the Ugandan attitude toward death and dying was much less threatening than that in the West. True, there was much illness, from polio to AIDS, and death was ever there, but Ugandans also saw powerful links between themselves and their ancestors. Death for them was a natural passage, not an end.
Ugandan society also relies upon natural healers, whom we in the West understand with difficulty; we call them "witch doctors." As the AIDS crisis deepened in the 1980s, the natural healers attempted to understand the deepening problem. To the local populations, they were the most familiar source of treatment for varied ills, in a country where modern medicine was largely unheard of.
These practitioners use ritual, medicinal herbs, and common sense in a holistic approach that integrates the physical, emotional, psychological, and spiritual dimensions of the person being treated. "In the West," Tim McCarthy stresses, "the nocebo approach told us we would die, and all believed death was inevitable. But in Africa, without the input of strong medical institutions and a ninety percent Catholic moral ethic in place, the journey was different."
Shortly after our team arrived in Uganda, they came upon a group called THETA, which was holding a convention. Unique to Uganda, THETA includes both Western medical practitioners and traditional healers. They seek to learn from each other. [See "Traditional Healing in a Modern Epidemic" in the October 1998 issue of Body Positive for a description of THETA.]
"In Uganda, people go to the traditional healers first, since they are the most available agents. They also happen to be the best at grasping the psychological dimension, nor are they afraid to refer a case to Western medicine if needed. I suppose you could say they perform triage." Tim was invited to address the group of forty, where he made clear he was cohabiting with AIDS and that he did not come to speak as much as to listen and learn. In discussions that followed, Tim learned that traditional native medicine relies heavily on plants that work to heal naturally. The traditional healers, for example, have an effective cure for shingles that has now been adopted by Western medicine.
Surprisingly, Tim discovered over lunch that no one had ever come to Uganda to share with them the effects of AIDS on other peoples. They eagerly listened to him share the impact of the disease on his life. They were impressed also that Tim and company were willing to share meals with them from their own cooking pots, unafraid of "catching something" from them. Tim went so far as to meet privately with a traditional healer and receive traditional ritual therapy from him.
To their credit, the Ugandans had a grasp of the AIDS epidemic by 1986 and decided to deal with it through education. Since then the rate of new infections has plummeted. Uganda has become a model for the rest of Africa and the Third World.
Tim Burton recalls his amazement at how the foreign mixed with the familiar in unexpected ways. On the streets of Kampala people walked around with cellular phones, mostly because the national phone company could not be trusted. On deeper levels, the Ugandan capacity for friendship was unsurpassed. "Newspapers could be bought for 50¢, but you could simply read it at the stand for 10¢." Their sense of community and mutual trust surpassed anything he had ever imagined. Both Tims describe the Ugandans as "the friendliest of all the people I have ever met."
Among Tim McCarthy's goals was a desire to have a close encounter with the gorillas and chimpanzees in a national park, their native habitat. (Oddly enough, it was but a few short weeks later that Tim would hear about the human "guerillas" who attacked and killed tourists in that same part of the country. "The situation is quite volatile in the region," Tim explains. "War is all around and the morals of the leaders are questionable.") This goal was linked to a journey into the Kiddam Cave.
Tim first heard of the Kiddam Cave in a book by Richard Preston called The Hot Zone. Located on the flank of Mount Elgin, the site has an incredibly bad reputation among the locals. Elephants go into the cave to retrieve salt, and many other species make use of the cave for various needs. Most noteworthy of its residents are the bats -- thousands upon thousands of them. Imagine what the floor of this cave looks like, piled deep with several centuries' accumulation of guano (otherwise known as batshit).
Tim Burton and Peter Lien stayed behind at the border while Tim McCarthy went on ahead. By the time he reached the area of the cave, the attendant informed him that he had very little time left before the park closed for the night. He got to the entrance of the cave only 45 minutes before the gates closed, and he needed half an hour to return to the gate -- so he had fifteen minutes to get it right.
"The shit at my feet, infested with who knows what forms of bacteria, microbes, and viruses, was foremost in my mind. What was I trying to prove? Why was I doing this? What lay ahead in the dark of the cave? I intended to find out."
Tim turned on his video camera, scoping out the cave and then turning it on himself as he walked deeper and deeper into the dark. Each step increased the level of fear in his whole being. He had entered the cave of his fears and had no idea how deep it was nor what evil might be lurking there.
Tim finds it difficult to describe the depth of the experience. This was not a physical journey, but one of faith, psychology, and a look into the face of death. "Entering the cave," he says, "was my way of dispelling the psychological control death had over my life."
After some thoughtful reflection, Tim tries to describe the fears he faced. "In the past I was responsible for things, many things in my life, and I was able to let go. But this time the truth was deeper -- I was responsible for the people I had brought along to Africa. I feared harm would come to them. I feared the loss of friends. I feared not being able to return them home healed of whatever challenged them." As Tim faced his own fears, he found himself concerned about the needs of others, not his own.
Tim had come to Africa to meet the unknown and met it unexpectedly in a cave full of shit, in the dark, in an episode that lasted only fifteen minutes. But those fifteen minutes recapped a lifetime and refocused him on the importance of what was yet to come tomorrow and beyond. "I continued into the cave for as long as I felt I could endure the deepening level of fear inside me," he recalls. "Then suddenly I experienced vulnerability and I let go of the need to go farther. That day I gave up the need to be anonymous. There was no place to hide anymore, nor was there any need to do so."
In those few minutes, Tim experienced fear, and now that fear has passed. But the insight of having faced that fear will last forever. Darkness within turned to light, or "insight" as we call it, the kind of insight people call liberation. Suddenly the impact of the cave experience and of the journey to the heart of Africa as a whole exploded. "It's not me," he beams. "There was more: the simian link, the HIV vaccine [trials] announced while I was there, the dictator and his senseless war, Tim Burton and Peter -- I'm nothing more than a conduit and a messenger."
Not all of us need to have this type of draining physical and psychological experience in order to grow and heal. We can live part of the journey vicariously through people like Tim, and then journey inward to face our greatest fears. "We need to challenge the nocebo attitudes that told us we should expect to die," Tim reflects. "Despite all the risks involved, my T-cells are still between 283 and 383, and my viral load is unchanged."
Tim repeats the foundation of his philosophy for dealing with his illness: "I cohabit with AIDS as if I were renting a room in my house. I'll make my home livable, but I will not be codependent upon my tenant. This will be a symbiotic relationship via mutual education."
As a direct consequence of his journey to Africa, Tim has decided to do his small part. While in Uganda, he discovered that a huge percentage of the women have done enormous work to educate and eradicate the virus. The men, for whatever reason, ignore it completely and die from the virus quickly. The women infected with AIDS have banded together to create the "Memory Project," a parallel to the AIDS Quilt, where they write down the stories of their lives for the children whom they may never see grow up. They want their children to know that they had real parents with real stories to tell.
Tim plans to subsidize a companion publication written for children by children in Uganda, so that their stories will also contribute to the human dimension of this crisis by giving names and faces to the pain and the survival stories. "The projection for the growth of the orphan population in Africa alone due to AIDS is expected to be in the vicinity of 40 million children," Tim adds dolefully. But he has found in that same desperate environment the strength to go on and the power to turn fear into action for others. No placebo or nocebo here, just plain faith, light and letting go.
This article was provided by Body Positive. It is a part of the publication Body Positive.