by Gail Gutradt
In these hard times, funding for the Home Care teams has dried up, forcing Vandin to lay off half his outreach staff. Many of these people are themselves living with HIV. Although Wayne says that fewer people in villages need Home Care services now, the cutbacks leave no one in place to follow up when a patient misses a doctor’s appointment, or to check that they are taking their pills on schedule, or to find ways to counter discrimination against people living with HIV/AIDS. And people whose health has stabilized on ARVs still need social services and help finding work.
In fall of 2009, MSF reported in its newsletter, ALERT, that its physicians in Africa were seeing more patients who were resistant to second-line antiretroviral medications. Resistance can evolve naturally over time as the virus mutates, or it can result from an interruption in treatment, as when a child has been living with elderly relatives who cannot get them to the doctor regularly, or do not give them their pills on time every day. Wars and civil disturbances also rupture the life-sustaining routines that are the basis of ARV treatment. Outdated drugs—or, worse, counterfeit pills—compound the disaster. The article spoke of the overwhelming despair of both doctor and patient when the many infected with ARV-resistant strains of AIDS must be turned away like refugees without a country to return to. In Cambodia, I had heard of the plight of AIDS patients who lost their homes to urban renewal and were forcibly resettled to the outskirts of the city from which it became too expensive for them to travel to work, let alone to reach a doctor. This can be a disaster, when even the briefest interruption in care can result in drug resistance.
Today, only two lines of ARVs are manufactured cheaply enough to be commonly available in Cambodia. More advanced and much more expensive medications are available in the West, and allow many AIDS patients here to survive for decades. With more choices, doctors can better tailor treatment to individual patients and strive for fewer side effects. MSF reports that negotiations are under way with major pharmaceutical companies to create patent pools, through which drug manufacturers in the developing world would collectively pay royalties for licenses from the companies that hold the patents for more advanced lines of ARVs. If adopted, patent pools would allow these drugs to be produced at low cost. They could then be provided to those who need them throughout the developing world. Although the picture may ultimately improve, many drug companies have so far resisted loosening their hold on lucrative patents.
Several of the children I have written about in this book are currently on second-line ARVs, and the Khmer doctors promise that if any become resistant they will do their best to procure further lines. But in the current climate this will be on a case-by-case basis and is likely to be difficult and very expensive. Without patent pools, as more patients become resistant to second-line ARVs the cost will surely become prohibitive, and people who have been doing well for a decade will sicken and die.
As I read the reports from the Western and Cambodian press, and from MSF, I found myself becoming depressed and pessimistic. It began to seem to me that we might ultimately look back at the first decade of the twenty-first century and see it as a calm between storms, a halcyon age when there were both the means and the dedication to take on the epidemic. The misjudgment, greed, fraud and lack of oversight that brought down the world economy in 2008, and the massive public indebtedness brought about by war without end, have unleashed an epidemic of neglect that is murdering the poorest of the poor. This is not a natural disaster, but an unnatural perversion of the human heart. A mentally healthy society takes care of its neighbors’ children, and a spiritually healthy society provides for the needs of its children’s children, down all the generations of humanity. We must learn to care for people we will never meet, and, as Wayne insists, “There must be acts!”
Think of Toon Hang, who would be in high school today if only he had been treated a few days earlier. Will any of our children at Wat Opot be denied the medications that let them run and play and grow up to go to school? After all the effort, all the scrimping and struggling to create a community from nothing, after long sleepless nights nursing them when they fell ill, after all Wayne’s tireless devotion and love, is it possible that we will allow these children to slip away from us?
Wayne seems a bit bemused to find himself father to a passel of teenagers. It is an outcome he could not have hoped for in the early days of Wat Opot. Many of the kids are doing well, going to school, developing outside interests and friendships with people in the village. In 2013, Wayne reported that three of the children had graduated from university, two with law degrees. One boy was in his final year of civil engineering and two others were in the second year of art studies, with a third studying architecture. One was in school for midwifery and yet another in an international school of design. Sovann, Kangho’s older brother, has gone on to work on his master’s degree in nursing. A few have become Buddhist monks. Five have married and are raising families, and some are now in trade schools or working in Phnom Penh. Our oldest HIV-positive boy is in high school, hoping to become a teacher. Others will soon follow.
Wayne is confronted by the problem of how to counsel young adults after they leave Wat Opot. And, like many parents today, he is also faced with the phenomenon of grown children moving back home. He is beginning to reconsider the meaning of Wat Opot as a community—whether it is a place where children grow up, only to leave for the world, or whether it might offer some of them a place to settle and raise families and continue to live their lives together. Mao, an older boy who left Wat Opot to work a construction job in Phnom Penh, has returned to marry a village girl. Mao and his wife and baby live at Wat Opot now. Mao works with the animals and manages the fishponds. Perhaps it is a good outcome for everyone. Mao came to Wat Opot from another orphanage and has no family. His wife, whose mother died when she was young, was raised by her grandmother Sari Yei in the village. Sari Yei, who has nurtured many of our infants as well, is raising other grandchildren in a very small house nearby and has no room for another young family. Living at Wat Opot, Mao and his wife can offer support to Sari Yei, and they can be part of both extended families.
Perhaps Wat Opot will evolve over time into an intentional community of children and adults, some who came because they were orphaned and sick, and some, like Mao and his family, who remain by choice to live in community and raise their own children. Wayne asks, rhetorically, I think, whether that makes the ones who stay dependent on Wat Opot. I suspect this is a Western concern more than a Cambodian one. In contrast to the American preoccupation with rugged individualism, I have never gotten the sense that anyone in Cambodia puts a premium on moving away from their family. Having many family members to pitch in, and elders to look after the grandchildren, and children to look after their parents when they get old, seems the most natural thing in the world and a good way to spread the responsibilities over many generations. It is only in cultures that make a fetish of independence that you find cities of high-rise studio apartments, and single-serving isolation, as if we were planning for loneliness. We expect every family unit to stand on its own, and, unless we live for a while in a place like Cambodia, most of us have no idea how atomized our own families have become.
Wat Opot is constantly changing. For now, Wayne says he wants the community to continue to find its way, to evolve, “to become more and more itself.”
Wayne and I used to talk about whether there could be another Wat Opot, whether another leader could duplicate the plan. Wayne wonders now whether this is even an important question. Things are what they are, rooted in time and place, in circumstance and personality. Even if founded on the same principles, a Wat Opot without Wayne would be different, and whoever is the leader would set the tone according to his fundamental humanity. A day is made up of a series of moments, and each moment is a year in miniature. It is the sum of interactions, of choices, of attitudes and examples, whether compassionate or otherwise, that sets the tone of existence.
41
Sweeping the Temple
Casual visitors to Wat Opot will marvel at the well-groomed campus and buildings with fishponds and ducks and gardens and murals on the wall, all built by a man whose pockets are almost invariably empty. If they pay a little more attention, they will begin to think about the significance of the fact that our children live together, regardless of whether or not they are infected by HIV. They might put this fact into the historical context of how people with HIV/AIDS have been treated around the world. Then perhaps they will begin to fathom the changes in attitude that have occurred in the villages around Wat Opot, changes that have led to the opening of the gates between our children and the world around them, a world a little less afraid now of people with AIDS. Some visitors might be sufficiently impressed that they will return home determined to end discrimination in their own villages and schools and orphanages. Such an opening of the eyes is wonderful and hopeful.
Still, the opening of the heart may remain more elusive. It may take more time for some of us to comprehend just what we have experienced here, for the goodness of this place to seep into our psyches, so we do not fall back on our old habits of thought and judgment.
For those of us who come from societies steeped in statistics, who see cost-efficiency and replicable results as the main event, it may be necessary to linger for a time in this community to perceive its light, which, like many mysteries, may only be made visible by contemplating shadows cast on a wall. For it takes awhile to see past the form to the spirit, and it is in the small day-to-day events that the lessons lie. By watching Wayne with the children, and the children with each other, you may, over time, begin to grasp the true depth of compassion of this place, so that even a small event might become, for the visitor with an open heart, a hologram of the whole and worth contemplating.
The children have been my teachers. The grandmother of Jorani and Pesei came for a visit one day, and Pesei asked me to take a photo of the three of them.
Another little girl wanted to join them.
“Why do you want to be in the picture?” I asked her. “She’s not your yei.”
The girl stepped away, abashed.
Pesei put his arm around her shoulder, drew her back into the frame and said, “But she is our family too.”
Another example is an incident that happened during my first winter at Wat Opot. Makara is an older boy whose mother lives in the village. She is HIV positive. He came to Wat Opot so that his little sister could receive medical care and both of them could attend school. Makara and some boys from the village school stole a fancy bike and it fell to him to fence it at a bike shop near the main market. The bicycle, as karma would have it, belonged to the son of the shop owner, and Makara found himself in a lot of trouble. Theft in a close-knit community is a serious betrayal, and Wayne might have thrown him out, but that would have left his little sister here alone and Makara would likely have stopped going to school. On the other hand, the incident reflected badly on Wat Opot in the eyes of the villagers, and letting him off would set a bad example to the other children.
Wayne called a meeting and left it to a jury of Makara’s peers, the other boys his age, to decide whether he should be expelled. In a quiet voice Makara promised to do better, and not to bring shame on his family. The boys listened gravely, eyes discreetly averted, weighing Wat Opot’s reputation in the village against the repercussions of expulsion on their friend’s future. Each boy knew that he himself might easily have been the one on trial. Finally, they agreed to give Makara a last chance. But that was not the end of it. Each boy on the jury promised that he would watch over Makara and steer him straight if they saw him getting into trouble again. By assuming responsibility, each boy accepted the roles of father and older brother. From being a jury, they became even more a family.
Watching this scene—a group of boys under a tree at twilight considering what was best for their friend and for their community, sitting in judgment with no malice but soberly aware of the ramifications of their decision—I was touched. Still, coming from the world of breaking news reports and paparazzi, I observed with no little personal disdain my own impulse to monitor the boys’ expressions and reactions. How addicted I have become to these glimpses of what we think of as authentic: the naked moment, captured in a snapshot or newspaper photo, laid out for our dissection. As I watched these modest children, with their innate sense of courtesy, I felt nosy and intrusive. I wondered whether the new thought that had come into my head, of perhaps one day writing a small book about their lives, had squeezed me back through some invisible membrane separating Wat Opot from the world, whether the mere thought had changed me from a participant to an opportunist.
Yet in that moment I realized that here was something well worth observing, that it might indeed be transient and was in any case so remote from most Western people’s experience as to be as far from imagining as life in another galaxy. Stranger, even, because we have more images from film and television, and might have more of a concept of an alien culture than of the scene of simple decency unfolding before me that evening.
Before one of his rare visits to his family in the States, Wayne gathered the community together to say goodbye and to reassure everyone that he would be coming back. They were sitting in the temple after their weekly cleanup of the grounds and the dharma lesson with the head monk of the wat. Around them were painted scenes of the life of the Buddha, and the lovely gold-papered statues smiled down at them with compassion.
“Do you know why we come here every week?” Wayne asked the children. “Why we pick up the trash and sweep the temple and listen to the teachings of the Buddha and chant the lessons?”
A small voice called out, “Because you like us to?”
Everyone laughed, and Wayne answered his own question by telling the children once again the tale of how he and Vandin went looking for a place to build their clinic. How they went to many villages and wats and at each place people said they would like to help, but always there was some reason why they could not. Underneath every excuse was the same fear—fear of living near people with AIDS. Of all the places they looked, only Wat Opot, a dilapidated temple in a very poor village, gave them a small piece of land, a few parched haunted acres that was all they had to offer.
“We clean the wat every week to say thank you to the monks for our home,” he told them. “And we go to the temple to remind ourselves that we do not want to be like the people who rejected us.”
I was reminded of one Christmas party when Wayne had asked the children whose birthday we were celebrating and the kids sang out, “Yours!” I imagined Wayne and Vandin, wandering about a shattered country, searching for a little land for a clinic to care for the poorest of the poor, and finally being taken in by a group of destitute monks who had nothing to offer but an abandoned field where ghosts roamed. To have watched this fragile seed flower into a thriving place where people who were near death found life and hope again and shared community—how like a miracle play that seems to me! And I am struck by how the repetition of this simple tale has all the power of a foundation myth, one that sets a standard of spiritual understanding for a people and teaches them how to live.
A visiting scholar once asked Wayne whether he could have accomplished all he has without having a spiritual background. He replied that he did not think so.
“What aspects of spiritual practice do you want to pass on to the children?” the man asked.
“I want them to learn to look into themselves, through meditation and contemplation, and to make an open and honest evaluation of their lives, without putting it into words like ‘God’ or ‘Jesus.’ ”
At the end of one of Wayne’s visits to the States, I called from Maine to say goodbye. He seemed upbeat, looking forward to going home and getting to work on some of the projects he had been thinking about while he was away, particularly the one-on-one counseling sessions with the children. We talked about some of the issues that had been getting me down: cutbacks in help for AIDS patients, my fear th
at some of our children might become resistant to available medicines yet have no access to other lines of ARVs, my worry that we might be backsliding to the days when kids like Toon Hang died from lack of treatment—the whole vortex of anxiety I had been feeling since I returned to America and started reading the newspapers again.
“How do you function in the middle of all that’s happening?” I asked him. “Doesn’t the impossibility of it all get to you?”
“Maybe I’m stupid,” he began, “but I try not to look at the news very much. And I try not to get too involved in what’s going on in Phnom Penh. I just take care of what’s in front of me, things I know I can do something about.”
I guess that’s it then, I thought. Just start where you are, and do what you can, and don’t let yourself be paralyzed by the naysayers.
And that was all we said on the subject. Because then Wayne started talking enthusiastically about some new project he had begun planning while he was at his mother’s house.
Wayne always told me he tries not to worry, and as if to prove his point, news of two new grants was waiting for him when he got back to Cambodia. New government regulations concerning orphanages required a security fence, and the same Taiwanese businessmen who had donated the new dormitory had offered money for a wall around the entire campus. At last the marauding cows could be kept out of the gardens, and Wayne could get serious about growing crops to feed Wat Opot. There might even be enough surplus to sell in the local market. It was another step toward making Wat Opot self-supporting.