LIVING WITH HIV – AIDS

At the time Pema Dorji was diagnosed as HIV positive, he was a young man in his prime living in Samdrup Jongkhar. Married with two children, he had never heard of AIDS or HIV, and wasn’t even aware of how it spread or how one could contract it. This is his story.

Tshokey_TshomoAt a glance Pema Dorji is your average Bhutanese, living life like any other Bhutanese man would. Going to office daily, married and with a three-year-old child, he appears to have a normal life with family and friends, whom he socializes with regularly. But what differentiates Pema from the other Bhutanese is his struggle with being HIV positive. Pema is one of those on the growing list of HIV cases in Bhutan.

In 2006 a World Bank report warned that although isolated geographically, Bhutan would not be impervious to HIV/AIDS, but instead, because of the increasing cross-border migration, international travel, and the behavioral risks, Bhutan could see a rapid increase in cases in coming years. It warned that with the epidemic at the early stages there was still time to stop it from spreading.

Pema, 47, contracted HIV when he was 35 years old, about 12 years ago in 2001 which was one of the worst years that Bhutan saw a spike in the number of HIV cases. World Health Organization statistics on Bhutan reveal there were stray cases totaling to less than 10 from 1993 to 1997. Between 2001 and 2002, however, there were 22 new cases detected, and by 2004 there were 23 more new ones.

Pema may just be a number on these figures, but his story tells you that this is more than just about figures. It is about carelessness, about regrets, about a lack of awareness, about the attitudes of people towards someone suffering, and about moving on and making the best of life despite this misfortune.

In 2011, on World AIDS day, a group of HIV positive Bhutanese put their past behind them and made history when they announced publicly that they were inflicted by the illness. Pema Dorji was amongst them. In some respects, something interesting happened that day, the brave decision to disclose this information to the public and put a face to this illness, transformed Bhutanese society altogether. It told the Bhutanese that it could happen to anyone, that although the illness sounded deadly, those afflicted by it deserved to be treated with respect and care, and not shunned and looked down upon.

Talking to his parents or even his wife was out of the question. His wife blamed him and he could see she was distraught by it all.

At the time Pema was diagnosed as HIV positive he was a young man in his prime living in Samdrup Jongkhar. He was a government employee at the Dzongkhag, married with two children. But he had never heard of AIDS or HIV and wasn’t even aware of how it spread or how one could contract it. And that was probably why he was careless when had gone to India a few years earlier. At that time, attitudes and behaviors amongst the public towards this illness also happened to be like it would anywhere else in the world – one of disgrace and shame.

Pema’s wife was pregnant with their third child. His wife was getting prenatal treatment at the hospital when he was approached by Doctors and told that they needed to take his blood to do some tests. This was in connection with the pregnancy, they said. Pema complied and didn’t question them. He was asked to come back a second time for more tests. A month later, he was called in for a meeting and in the presence of the Doctor and a Counselor, told he was HIV positive. But that was not just it. His wife and their unborn child were also infected. Unbeknownst to him, he and his wife had been living with HIV for a few years because his middle child, it was confirmed, had also been infected. Fortunately his oldest child had escaped this predicament.

Pema recalls feeling like his life had ended, his world collapsed. “I knew I was going to die sooner now and wondered when – tomorrow? Day after? When? It was a sickening feeling, one of hopelessness. I didn’t know whom to turn to. I was ashamed. I was sick with worry for them. My poor innocent kids. What had I done to them?”

Talking to his parents or even his wife was out of the question. His wife blamed him and he could see she was distraught by it all. “There was no sleep for me after that. I couldn’t talk to anyone and I didn’t want to. I couldn’t eat because I was sick with worry. My family was falling apart and so was my life. I felt like I was going mad.

My wife was so angry with me that she told her father and her friends. Her father in turn told everyone that I had done this to his daughter. He was a bus driver who traveled between Samdrup Jongkhar and Tashigang so within no time, everybody knew that I had been infected by this deadly virus. People whom I considered friends changed the way they looked at me and the way they treated me. Instead of getting support from these people whom I knew, I was ostracized and discriminated against. My poor wife who was so depressed and angry at me started drinking very heavily.

People seemed to think that there was only one way the disease could be spread, through sexual encounters, and that alone allowed people to form prejudices against people like Pema. Rumours spread that the girls he used to know or was friends with were all infected. “These were women I just knew but had never had sexual relations with. Yet they were all scared they might have contracted HIV,” he said.

Living in a small town like Samdrup Jongkhar with a population of a little over 7,000 didn’t make things easier. Soon everybody, including people at work, treated him like an untouchable. “If I sat on a chair, people would wipe it down or refuse to sit on it. Many refused to talk to me even.”

Eventually his wife took him to court. “I know she wanted to blame me and I understood her pain. After all I was going through the same thing. But at this point, she needed more help than I did. She was drinking very heavily and I was concerned for her,” Pema said, stopping to take a breath. “I wanted to be with her and the children and asked her, what do you want to do? Do you want the alcohol or do you want me? And she told me she preferred the alcohol. She clearly didn’t want me.” Three months after their divorce, Pema’s wife died from alcoholism, not AIDS.

“I fought for custody of my kids because I intended to move to Thimphu where the hospital was larger and better, and my kids and I would probably receive better attention. The courts let the children decide and although they wanted to go with me in the beginning they were probably manipulated by my father-in-law, and so they decided to go with him instead. I don’t know what he told them, but when a child doesn’t choose his own Dad, it must have been something really bad.”

Losing his wife and children made life even more unbearable, Pema said. But when his family turned on him it was the last straw. “One day I came home and found my few and only belongings – two suitcases, a blanket, a mattress and some clothes –all dumped outside the house. My parents didn’t want me. They were throwing me out.

Left in the depths of his own company, alone, scared and with no one he could turn to he decided to end his life. This was his second attempt. He had tried to kill himself before by consuming rat poison, but had survived the ordeal after someone found him unconscious and took him to the hospital.

“This time I planned to hang myself on the ceiling fan. I took my kabney and kept everything ready, but decided to call my counselor in Thimphu one last time so that I could leave a message with him. I was so distressed. My parents were treating me like I was already dead so I thought to myself, I might as well be dead. I told him ‘Atah, you told me to be strong and have been very helpful, but today I have decided to leave this world for good.’ I told him how I was feeling and why I was going to kill myself.”

Pema’s counselor was alarmed at what he was about to do and consoled him. He talked with him for a long time and convinced him that killing himself was not the way. “He told me that he would come personally to see me and that we could talk about things. It gave me some hope and he managed to talk me out of it.” The counselor did visit him.

But things were still unbearable and Pema decided that maybe leaving Samdrup Jongkhar, instead of the world, would probably make things better.

In the 90’s when the AIDS epidemic had taken over the U.S and people were still just learning about it, Hollywood came out with a film “Philadelphia” which was the first movie to acknowledge and address discrimination against HIV/AIDS patients and homosexuals which existed in the workplace and amongst the public. Contrary to that, it is surprising to learn that in Bhutan, while stigma and ostracism of HIV/AIDS patients did exist to a certain extent, it was instead the honorable conduct and behavior of some officials that helped change and shape the attitude of the public.

Pema wouldn’t have been able to leave Samdrup Jongkhar without the support of the overall head of the Dzongkhag. “I went to Dasho Pendhen Wangchuk, cried in front of him and told him the truth about my life. I confessed that I was HIV positive and that I could not live in Samdrup Jongkhar anymore. I told him I needed to get transferred to Thimphu.” Pema speaks highly of Dasho Pendhen Wangchuk who he said gave him his full support and empathy. Dasho Pendhen transferred him right away.

It was easy at first. With Thimphu’s population close to about 80,000, Pema got the anonymity he craved and a chance to lead the normal life he sought. People no longer pointed at him and spoke to each other in hushed tones when he passed by, they didn’t ask him personal questions because they didn’t know.

But just as things were going smoothly, a co-worker from Samdrup Jongkhar moved to Thimphu. It was bound to happen. Bhutan is a small enough place that no secrets, especially one like this, could’ve been kept once it was out there. News of Pema being infected spread again. He saw the only chance to start a new life in a new town collapse before him. His landlord even asked him to move out of his flat, afraid that his disease would contaminate them, he said.

“I didn’t know or think at that time that such discrimination could be prosecuted. I don’t think it had ever happened in Bhutan, nor would the justice system know how to execute such a case so I went to see the Dzongda instead, but he wasn’t in. But the Dzongrab was, and I told him what the co-worker had done,” said Pema. According to him the Dzongrab summoned the co-worker and scolded him for his behavior and for trying to ruin Pema’s life. He warned him that he would lose his job if he did that again.

In the mean time, Pema got the opportunity through the hospital program to meet others who had also contracted HIV. He had always thought and felt alone, but meeting the others gave him the strength to move on. They had all faced nearly the same things that he had; they were all suffering just as he was. He finally had people he could turn to, people willing to help him, and people he felt a kinship with. It seemed to make a difference.

In 2011 a group of HIV positive patients who were part of a group called, “Lhaksam,” decided to go public about their illness. Pema who was amongst them, said he felt liberated. “My mind never felt so unburdened before. My body might have been afflicted but there was nothing wrong with my mind. However, the burden of hiding that I was HIV positive was unbearable and shameful.” By 2011 many things had changed in Bhutan and coming out from the shadows proved that it had.

The saying, there is always a tomorrow, couldn’t hold truer for Pema. He has since remarried and moved on. His second wife was someone who was there all along for him, he says. “She wanted me for who I am, and for that I am truly grateful,” he said. Unfortunately she is also HIV positive and he has a three and half-year-old son from her who hasn’t tested positive as yet. Meanwhile his other children are in school in Eastern Bhutan. He speaks to them and keeps up with their progress. “They are undergoing treatment and they seem to enjoy school.” There was a time, however, when Pema had to go and meet with the school principal and teachers because some of them had ostracized the children and made them sit separately from the others. “I went there and explained to them about our rights and that our government does not stand discrimination and ostracism. I explained to them that the health ministry was watching and that their behavior could lead to serious repercussions. It stopped and I know they are being treated well now, because my children tell me,” he said.

Today, Pema is healthy and still undergoing treatment himself. As one of the founding members of Lhaksam, a recognized NGO, he is actively involved in spreading awareness on HIV/AIDs. He will also be participating in the upcoming Tour of the Dragon bike race from Bumthang to Thimphu.

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One Response

  1. After i went thru ur story of what u went thru i understand …ur strong n hope u help people out der whos goin thru the same thing…
    hats off MR

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