Formerly Brahmavihara Cambodia AIDS Project

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Sok Da

Sok Da came to town yesterday, Wednesday, with no warning. She has developed a prolapsed uterus. Had she told us in advance she was coming, as she is supposed to, we could have told her it was the beginning of a five-day holiday and that nothing could be done about it until next Monday. She called to tell us she couldn’t find treatment.  She needed money to go back to her village, 110 kilometers away of mostly bad road, half of which has to be travelled by motorcycle along dikes made dangerous in the rain. We checked her into a guesthouse, gave her money for food and went to see if we could find her medical treatment. Nothing but the most dire emergencies are being handled anywhere.

In addition, Sok Da signed herself out of further medical treatment a month ago; this means she no longer automatically has free medical care.  It is not clear whether the organization that helped her will take her back; in any case, they do not do gynecological procedures and she would have to wait to get a referral on Monday.

This morning we went back to offer her the choice of staying in Phnom Penh at the guesthouse until Monday or going back to the village and returning. She was desperate to go back. She had been sleepless with constant diarrhea and was afraid she would die in Phnom Penh.

Dying in the village has been an important topic with her for some months now. Sok Da has second-line antiretroviral failure along with a recurrence of cervical cancer, inoperable because of her general condition. In February she signed custody papers for her two younger children; they will go to a Christian/Buddhist project we work closely with. Since she signed herself out of further treatment we have been going to her village every two weeks with money for food and iv fluid, soymilk to drink, and other things she has asked for. We had already repaired her house. An Australian nun in the Tibetan tradition has become her patron, praying for her and paying for her needs.

This morning, a whole other story emerged. In the village a few days ago Sok Da had already cooked rice porridge for herself when a neighbor brought her some to eat. She saved the porridge she had cooked overnight but in the morning it was spoiled so she threw it away. Another neighbor, who saw her throw it away, told the first neighbor that she was throwing away the food people gave her. Sok Da got furious and went to the police, who didn’t do anything. Then she grabbed a knife and stick and went to attack the neighbor. It isn’t clear how that got calmed down but she remained furious until, as she tells it, she heard the story of Angulimala over the pagoda loudspeakers. Then she calmed down. She said she apologized to the woman she attacked.

So Sok Da came to Phnom Penh. This morning we gave her transportation money for this trip, a little more money for food on the road, some medicine for the diarrhea and a radio. She said she wanted one to listen to dhamma talks; in any case it is a good idea for her to have something.  We don’t know if she will come back on Monday. We don’t know if she will live that long. It seems to me that she has the angry energy some people get when they are very near death, when anger is the only thing left that energizes them. She is shivering with cold and looks without any resources. If she doesn’t come, I will go to the village; either for her funeral or to give her support money for the next few weeks.

However much of the story about the fight with her neighbor is literally true the event says a lot about what our life with Sok Da has been like over the past seven years. And about what her life has been like since she was orphaned at age six, along with her seven-year-old sister. Raised by a grandmother and/or uncle in Stung Treng, one of the remote provinces, Sok Da left school very early to make a living and help support her sister’s schooling. When she was 16 she was forced into marriage with a soldier, a boy from a rich family who was in love with her sister. They had three children: Sok Dina, a boy, who is now 17; Sok Vanny, a boy, who is 13, and Sok Chin Tha, her only girl, who died in 2002 at 10 days old. It was during her pregnancy that Sok Da learned she had AIDS. She moved into the Borei Kela slum, started a small door-to-door clothing business and started to get medical treatment through HOPE organization. Since she expected to die soon she gave Dina and Vanny to a Christian orphanage, where they remained for three years. Sok Da’s  husband left her after their daughter died; he took up with her sister, giving the sister AIDS also. The sister died in 2003 and the husband some months later. Sok Da never reconciled with her sister but forgave her husband on his death bed.

Sok Da didn’t die. She was one of the first people put on antiretrovirals when they started to become available. During her first six months of treatment with them she tried to kill herself twice, both times with pills, over a failed love affair. We spent nights holding her hand while they pumped her stomach. She also got into a huge fight in Borei Kela and was badly beaten up; she stayed for a month at the project where her children will go and then moved north to Malai, on the Thai border, where she remarried and had another son, Sok Rith, now four years old.

Her new husband Kom Pueth, who was slightly disabled, did not know about the AIDS. They had a business together smuggling workers over the border into Thailand. This is a huge industry on the border there; thousands of undocumented Cambodians work in all kinds of industries, in construction, in begging, on farms, on fishing boats and in other jobs there, often under terrible conditions. Sok Da was in Thailand four times, and arrested and imprisoned there twice, for four to five months each time. During that time she had AIDS treatment but not antiretrovirals; this is probably when her resistance to antiretroviral treatment developed.

In 2006 Sok Da and Kom Pueth moved to Battambang, away from the border, where his family lives. That was not a successful move; the children fought a lot and the families did not get along. Sok Da and Kom Pueth divorced a year later. She does not know where he is and does not want Sok Rith to live with his father’s family.

The instability in Sok Da’s life has always been partnered by the volatility of her temper, often making bad situations worse and often overriding her other qualities: her charm; her fierce determination; her quick wit.

Now it is the end of her life. By the time these pages are on the website she will most probably be dead. She has exhausted our patience repeatedly beyond measure. And we will miss her proportionately to that.

(written in April 2009. Sok Da died August 10 of that year. We went to the village at least once every two weeks until her death. The villagers were extraordinary in their care for her. Her two younger children are now at the Wat Opot orphanage and doing well there.)





 

 

Ta Heng

Maryknoll asked us to look in on Ta Heng a few years ago. They were already supporting him but wanted him to have additional support and attention. We were pleased to do so.

 

Ta Heng is 45, has been on antiretrovirals successfully for several years, and lives in a tiny shack by the railroad tracks. There are holes in the walls, floor and roof; the stairway to the ground under the stilts is broken; the area below is indescribable with standing water, garbage and all kinds of filth. Ta Heng sleeps down there, on a filthy bed with a filthier mosquito net. He will not allow anyone to clean except his younger sister, and her rarely.

 

The upper floor has another bed, where he spends his days, a cupboard and chest, a round earthenware wood stove and his cooking utensils. Above the chest is a large canvas of the Buddha. It was brought into the house for his wife’s funeral and has remained ever since. Ta Heng stays in this room most of the time, smoking cigarettes and cooking on the stove in front of his bed, with a fan close beside him, providing what ventilation exists. When we first visited, his neighbors told us they wanted him out of there; they were afraid he would set his house on fire and wind up burning the whole neighborhood. They have since stopped complaining.

 

Ta Heng hears voices and wears cotton in his ears to drown them out. Sometimes they are in his head and sometimes in his chest. They lie to him about many things and always have. He takes valium to sleep; at one point he was taking 14 tablets a night and still not sleeping. Since then Roussey hospital has put him on another medicine, which he takes, along with eight valium, and can sleep.

 

Ta Heng’s had an ordinary enough country childhood, except for hearing voices. He lived in the country in Kampong Speu province, in  a village of about 60 families. There were only two children, Ta Heng and his little sister. He fished and caught frogs and didn’t go to school. His voices would tell him to go out to the mountains and get wood.

 

Ta Heng’s father was known to have supported the Lon Nol government and when the Khmer Rouge took over the country in 1975 they took his whole family to prison in another province. Ta Heng was 13. He was put to work making bamboo poles for yokes; his parents worked making canals. They starved. Every day the officials would take people out to kill. Many people died, including his parents. He became very, very sick and skinny. His voices liked that a lot and became very strong and constant in his life. The voices talk to him about everything in his body, mostly men’s voices but sometimes women’s. They say he has pots and pans in his body and has ghosts, including prieh (the most dangerous kind of ghost in Cambodia) in his body. They keep him awake. The cotton in his ears helps some but not sufficiently.

 

After the Khmer Rouge were defeated in 1979 Ta Heng and his sister came to Cham Chao, just outside of Phnom Penh, where his sister still lives. They stayed in a Vietnamese army barracks and Ta Heng was able to go to school for about five years. He could read and write although he can’t any more.

 

Ta Heng also learned to drive a truck during this time and got a job bringing wood to Phnom Penh from Kampong Cham, a province to the north of the city. He met a woman there who worked for the government. She was not so pretty, he says, but she was very smart. Her family was from Prey Veng in the south. She had two children from a previous marriage. She also gambled some. They married in 1987. After Ta Heng married his voices let him alone for a while.

 

Ta Heng and his wife had two children of their own; a little girl, and then a boy named Van Ny.  His wife died in 2002. Their little girl, then seven years old, died a week before she did. Ta Heng had moved into the city with them, to the house where he lives, in order to get medical care for her, spending all his money on medicine. His wife died in the municipal hospital. Ta Heng thought his wife had tuberculosis and only when she died learned she had AIDS. After that Ta Heng was diagnosed and began to be helped by Maryknoll and by Roussey, the national AIDS hospital. He feels very grateful for their support and care.

 

Several years later their son Van Ny, then 14 or 15, was arrested for taking drugs and stealing. He spent the last four years in prison and was only released in mid-April 2009. Van Ny stayed with his father for a few days after his release and then went to live with his aunt. She was unhappy with him. Maryknoll found him a live-apprenticeship program, learning to repair motorcycles. The family who owns the repair shop and program are kind and seem knowledgeable.  Van Ny is doing well and happily there so far.

 

Ta Heng’s stepsons are older: one is a monk who recently has been helpful; the second lives in the pagoda and studies. Neither of them are close to Ta Heng. His sister visits from time to time. But most of the time he is alone.

 

Ta Heng is extraordinarily appreciative and undemanding. We see him every week just to help him keep in touch with people. When we come to his house he dusts off his two small plastic chairs to make us welcome. If he knows we are coming, and especially when we were bringing our photographer, he took the trouble to bathe and to clean the house some. He is an intelligent, kind and hospitable person. He becomes lucid very quickly when people are interested, and can tell wonderful stories. We like him a lot.

 

Ta Heng would like to be able to work again, although in this economy it is hard enough for people who are qualified and sane. There are many programs here for disabled people but we know of no program for the mentally ill. A sheltered workshop or kind employer might help him re-enter the world more. We keep him supplied with rice and soymilk, in addition to the support money he gets from Maryknoll, and paid for him to visit Van Ny in prison. But these things are no substitute for genuine engagement.

 

For now it is good that Van Ny has been released from prison and is doing well. Ta Heng is very happy with the news of the training program.  He is also happy that his older two sons and sister are somewhat in touch with him. There were some years when he didn’t see them at all.

 

There has been an astonishing amount of genuine trauma and terror in Ta Heng’s life. Somehow, he has managed to meet it all without losing essential kindness. This is an extraordinary achievement.




Mae Srey Lek

We knew Mae Srey Lek from 2001, when her daughter, Srey Lek, was dying of AIDS at age 23.  Her family lived in the slum by the huge garbage dump in Stung Meanchey. Srey Lek was the daughter from her first marriage. Her second husband died of AIDS in 2003. From her second marriage Mae Srey Lek had three sons.  The older two took after their father, who drank and beat her. The second son also used drugs. The youngest son, Chanthorn, had a problem with drugs when he was about 12 years old and stayed out of the house because his brothers also mistreated him.

In the middle of all this Mae Srey Lek held everything together, getting up at 3 a.m. each day and taking a cart around the city to collect recyclables, earning about $2.50/day for 12 hours of work. Although she had AIDS she remained strong until well into 2006, when her health began to deteriorate.  She also gave up hope, especially when Chanthorn was having problems, and began drinking and gambling. By the beginning of 2007 she was seriously ill with tuberculosis (tb). Then, in March, she was diagnosed with inoperable cervical and vaginal cancer. Our experience with chemotherapy for Cambodian AIDS patients discouraged us from supporting it for her. Instead we tried to make her last months as good as they could be.  

Mae Srey Lek refused to stay in the hospital or hospice. Our director, Pheap, who lives not far from her, started going to her house practically every day to make sure she took her tb medicines. He also insisted that she begin antiretrovirals (arv) despite the cancer and made sure she took them. We saw her several times a week for Reiki and provided her with money for rent, food, intravenous fluids several times a week, and a caregiver when she couldn't manage on her own.  Because of the tb and arv medicines her strength came back and she found herself, on her own initiative, work sewing rice sacks together.

Chanthorn was also doing better at this time. He was not living at home but had stopped taking drugs and gone back to school.

In June Mae Srey Lek told us that she wanted to ordain.  We thought this was wonderful, shaved her head and ordained her at the Roussey hospital mortuary. She lived her last months at home as a Khmer nun.

Mae Srey Lek died peacefully September 16, 2007. Her whole community participated in her funeral.

The first photos in this collection were taken by Bennett Stevens in 2005. They show her at home and Chanthorn with his nephew. The rest of the photos were taken by Rayna Moss in 2007.




Roeum and Tai Meng

Free antiretroviral medicines (ARVs) began to be available in Cambodia in the middle of 2001 through Medicins sans Frontieres.  But it was several years before they became more generally available. During that period, until the beginning of 2005, most patients continued to die. And most of those lucky enough to become part of an ARV program had come very close to death, not once but several times. They had lost spouses and children. They had lost hope. Their bodies often had been permanently weakened and their capacity to envision a future gone. Turning towards life again was a complex and difficult process. Many did not make it. Some made it only part of the way. Having at least one very close relationship was often a key factor in whether someone survived or not.
Certainly for Roeum and her daughter, Tai Meng, each has been the key factor in the other’s survival.

We first met Roeum in 2001, when Tai Meng was a baby. Although the doctors said Tai Meng did not have AIDS she was very slow developing, with a huge belly and almost no hair. Tai Meng was also very hypersensitive and could not be more than a few meters away from Roeum; otherwise she could cry hysterically.  At some point it became clear that she was infected also.

Roeum had lost her husband and was alienated from much of her family because of AIDS. Maryknoll organization supported her and Tai Meng. But in addition to this Roeum worked constantly, making doormats and hammocks and splitting wood into tiny sticks for sate (meat chunks in sauce).  She saved the money from this for her funeral expenses and for Tai Meng after her death. 

Roeum continued to weaken and at the end of 2003 went back to her village to die there. She did not want Tai Meng to enter a group home for children and, we believe, was hoping that she could stay with relatives after Roeum died. That did not work out and Roeum and Tai Meng returned to Phnom Penh in spring of 2004,to the house where she used to live, where the landlady was kind. Tai Meng went into an (excellent) group home for children and Rouem prepared to die. In addition to AIDS she had uncontrolled tuberculosis. A fungus was eating away at her armpits and mouth and she weighed barely 30 kilos.

Roeum went into Roussey hospital’s tuberculosis ward where every day we prepared for her death. We brought Tai Meng to visit daily. Tai Meng’s overwhelming stoicism—she never, ever cried—broke our hearts.

One weekend midnight Roeum, who could barely stand, let alone walk,  decided she had to see Tai Meng at the group home, even though she did not know where the group home was and the hospital gates were locked for the night. Somehow she managed to get down the stairs and out of the building onto the lawn, where she collapsed. She had lost her sampot (skirt) along the way and was lying naked in the wet cold. We were called in the morning when nobody knew where she was. Pheap, our director, found her, found someone to dress her, got her back upstairs and got hold of me.

Rouem insisted on seeing Tai Meng and insisted on not seeing her in the hospital. The group home, realistically afraid Rouem would die in front of all the children, said she could not go there. We finally took Roeum to the house where she had been living and brought Tai Meng to her there. After the visit Roeum refused to leave and refused to have Tai Meng taken back to the group home. We expected Roeum to die momentarily and did not want Tai Meng there when it happened. The cry that broke from Roeum when we had to take Tai Meng back will haunt me until my own death.

After Tai Meng left Roeum became docile and returned to the hospital. But she didn’t die. Several days later she was moved to the Missionary Sisters hospice at Cham Chao outside the city. After the move she was so disoriented that she failed to recognize Tai Meng on a visit. But she didn’t die.

And she continued not to die and began to increase in strength. We brought Tai Meng to visit as often as we could, despite the huge stress of it. Returning from visits on the back of the motorcycle I would tie Tai Meng to me with a krama (Cambodian scarf). She would fall so deeply asleep that I would have to check her breathing to be sure she was alive. She still didn’t cry.

Roeum continued not to die. Eventually we got her registered in an ARV program 60 kilometers south of Phnom Penh. She began to stay at the Wat Opot Partners in Compassion project, half way along the road. At first that was temporary. But it became apparent that even recovered from her tuberculosis and with ARVs she would never have strength to live independently.

For two years we juggled the demands of Tai Meng living in Phnom Penh at the group home and doing well there and Roeum being hours away by bad road (the roads have improved since then).  It was always a catastrophe. Roeum would call, crying because she missed Tai Meng. The group home, worried because Tai Meng often got sick after visits, would hesitate to allow us to take her. Tai Meng still seldom cried (we thought her crying at all when we took her back was a vast improvement. She would protest at going but then settle down by the time we reached the road. But she became a champion vomiter, eating constantly at the project and digesting none of it, throwing it up on the trip back. After the first time it happened, when I had to buy new clothing so that the group home didn’t know and prohibit visits, we were always prepared for it. We also tried bringing Roeum to Phnom Penh but she wasn’t strong enough to manage. The trip exhausted her and she needed a caregiver. 

In 2006, finally, it all came to an end. Tai Meng, now in school and able to care for herself much better, went to live at Wat Opot with Roeum. 

It is not a perfect situation but it is more than workable. Roeum is able to hold a small job helping with cleaning at the project and receiving a small salary.  Tai Meng goes to school. They would like to visit Phnom Penh more and see family but it is hard to arrange and we wind up having to prioritize other things. But Reoum is alive and they are together and the supportive atmosphere of the Wat Opot project makes a genuine home for them.

The first five photos, all from 2005, show Tai Meng on a Wat Opot visit. The last three show us taking her from the group home to live with Roeum. All photos are by Bennett Stevens.



 





The four Brahmavihara (dwelling places of the Brahma or boundless virtues) are lovingkindness, compassion, shared joyousness and equanimity.
All photographs, except where otherwise noted, Bennett Stevens 2005/2006. Used with gratitude.