By Tenzin Namdul
MUNDGOD, India, 27 November 2016
Move aside Magic Johnson — a Tibetan refugee settlement in India has their own magic mother. I will call her Ama Jigmey, which aptly in Tibetan means, a fearless mother. Magic Johnson, a popular NBA basketball player known for his unparalleled passing skills, is often referred to as someone who has continued to be healthy despite being diagnosed with HIV for more than 20 years. Jigmey first came to know that she was infected with HIV in 1997, ten days after giving birth to her daughter. Her husband died later that year, but fortunately her daughter was free of HIV. For close to 20 years now, Jigmey has lived a life that is an epitome of compassion, patience, resilience, and most importantly, self-belief.
Despite scanty resources and going through years of hostile treatment and unimaginable hardship, Jigmey has not only managed to take care of herself and her family, she runs around under scorching heat and dust to check on other HIV victims — that too with abrupt, yet shy, infectious laughter. In a way, she has found a remedy for her challenging situation by being positive about life and dedicating herself in taking care of others, especially people living with HIV/AIDS (PLHA).
Jigmey’s life post-HIV diagnosis is no less painful than most other HIV victims across society. She quickly lost her job because people, including her friends, were feeling uncomfortable about her presence at work. With no source of income, Jigmey tried her hand at seasonal business, running a restaurant, or anything that could keep her family afloat. But she soon realised things could not go on like this. Jigmey recalled an incident when an elderly community member told her young daughter that her mother should close the restaurant because she might spread HIV around. Her daughter was horrified, and Jigmey quickly shut down her restaurant for good.
I was dismayed and asked how Tibetans who supposedly are reliable Buddhists can be blind toward such an inhuman act. Jigmey, very calmly to my surprise, told me “perhaps people are ignorant and they are scared of HIV and AIDS.” She said most people have no idea that HIV cannot be spread by sharing eating utensils, clothes, bathroom, kitchen, hugging, holding hands, or even kissing. Likewise, the mosquito cannot be a vector for HIV. And then, readjusting her posture so as to emphasise, she told me what I had told her five years ago over the phone, “Human immuno-deficiency virus does not survive outside the human body; it dies the moment it is exposed to an open air.”
It has been almost six years since I first got in touch with Jigmey, but I met her in person only in the summer of 2014. We met over lunch to discuss her health as well as her family condition. She looked happy and healthy, and instantly impressed me by explaining about her health in terms of CD4 cells (CD4 cells are type of cells that protect our body from infection) and overall sense of well-being. After talking about her family, I remember asking her what she wants to do and how we can possibly help her. She didn’t mince a word and said, “I want to help every HIV/AIDS victim like me to have access to treatment.”
Jigmey did not start her anti-retroviral therapy (ART) until April 2010. ART for HIV has been lifesaving for millions of HIV/AIDS victims. Since Nelson Mandela addressed 12,000 participants at the XIII AIDS Conference in Durban in 2000, South Africa, a seemingly unrealistic 15-year goal of providing ART treatment to 15 million PLHA has actually been achieved. However, we still have more than half — 36.7 million PLHA — of people to reach out to.
The Indian government’s provision of free second-line ART to all AIDS victims has saved hundreds of thousands of lives. However, it is important to know that nutritious diet, good quality of life, and sound mental health are essential elements in achieving an optimum efficacy of ART. Studies have shown that overall quality of life — physical, mental, and social wellbeing — plays an important role both in effectiveness of and adherence to ART treatment.
The Tibetan Central Administration’s Health Department has in recent years done a commendable job in reaching out to HIV/AIDS victims and providing stipends. But the question is how sustainable such supports are in providing equal opportunity and conducive socioeconomic environment for PLHA? How best we can help and assist HIV/AIDS victims in making them feel less vulnerable and more empowered?
As a morally conscious society, who usually believe strongly in helping others and would spend life-savings to attend one of His Holiness the Dalai Lama’s Kalachakra teachings, where are we going wrong? Speaking to Jigmey and other Tibetans living with HIV/AIDS (TLHA), it is clear that the root cause of hostile conditions and the lack of basic opportunities for TLHA is people’s sheer ignorance about HIV/AIDS, and hence a sense of fear which fuels stigma and discrimination toward TLHA.
Jigmey invited me for another lunch a few days ago. I was excited because it has been quite a while since I had home-made food, and also I was getting a monotonous diet with my routine momo and thukpa feast at a nearby restaurant. Jigmey’s house is quite a contrast to other cemented-colourful houses in her neighbourhood. Her small house has a mud-wooded façade; its small door and the adjoining window wear an aged look — it appears as if not much has been done to her house since the refugee settlement was initially established in the early 1960s. The room inside barely fits two single beds, and the kitchen, though filled with sweet curry smell, barely looks like a functioning kitchen.
Jigmey invited another Tibetan who has been living with HIV for the past 10 years. After lunch, I could not suppress my curiosity about the way Jigmey so effortlessly (at least it seems to me) maintains her sanity and uses every bit of her life in viewing things positively. I asked what, for her, is the most challenging thing since she was diagnosed with HIV? And has there been any incident that has really tested her resilience? She responded right away, saying, “society’s attitude and the hostility is far more challenging than the disease itself. I was really heart-broken when I could not send my young daughter to school because parents of other children complained about her being there.” Jigmey feels that such attitudes and behaviour cannot be successfully tackled without a well-strategised collective endeavour that involves each and every Tibetan.
Last December, after years of unsuccessful attempts to find support for her vision to help Tibetans living with HIV/AIDS (TLHA), as well as to protect others from getting infected, she, along with some of her friends, submitted a request to His Holiness the Dalai Lama through Gaden Phodrang (HH Private Office). In their appeal, they specifically seek His Holiness’ blessing and support for establishing a community centre for TLHA with sustainable self-reliance projects. Such projects, I believe, could have mutual benefit for society. While TLHA receive social and economic support, they, in return, can share their experiences and educate and train healthcare providers in designing wholesome care for PLHA. Furthermore, such endeavours can empower PLHA to be more responsible about protecting their partners and other members of society.
After three days, they received an official letter from Gaden Phodrang. With HH’s blessing, their vision was given a name, “Kyitsel Ling”, and they were informed that the Gaden Phodrang will support this important work. Kyitsel Ling in Tibetan means, “Land of Happiness”! Since then, while taking care of herself — regularly taking her medication, going for routine check-ups, and making some money through petty business — and taking care of her family, she has immersed herself full-time in working on the logistics of her visionary project.
I asked Jigmey how she is able to do what she is doing, and what drives her. She looks at me, quite uncharacteristically, and tells me, “I don’t want other HIV victims to wait for ten years, like me, to get access to treatment.” For this, she adds, “we need wider support and incentive to help TLHA to come out and seek help.” I could not agree with her more. Knowing Jigmey for all these years, I’m humbled to have got a chance to spend time with her, know her, and to learn a life lesson — that despite all the challenges, hardships, and deep feelings of uncertainty, one can conceive and give birth to a vision.
Ama Jigmey, a fearless mother, for me represents a strong Tibetan woman, a selfless mother, a devoted friend, and a staunch activist. And one who despite all the odds, dares to embrace a vision of giving life to the “Land of Happiness.” It is up to us what we want to be — mere spectators, or realistic Buddhist brothers and sisters!