Living to give
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Living to give

TO MARK WORLD AIDS DAY, A BLOGGER-CUM-AUTHOR TALKS ABOUT LIVING WITH THE DISEASE FOR MORE THAN A DECADE

SOCIAL & LIFESTYLE

Kaew* was about to lead a wonderful life after achieving everything she dreamed - a master's degree, a job offer and, most importantly, a plan to get married. But a pre-employment blood test report tore her life into pieces.

"My blood test showed HIV positive. And I just turned completely numb," recalled Kaew. The then 30-year-old got the virus from her would-be groom who passed away three months after the diagnosis.

Neither at first glance nor on closer inspection does Kaew, now 42, show any sign of the infection. Her healthily chubby body plus her cheerful personality even makes her look a lot younger than her actual age. During a conversation with Muse, Kaew's pleasant yet powerful voice revealed not only her natural charm but proof she has not succumbed to the illness.

But Kaew conceded that more than a decade ago the situation for HIV/Aids patients was dramatically different from what it is today. At that time, being infected with the virus was like a curse, even a death sentence. Patients were often ostracised by others in society who believed the disease was highly contagious. Patients were discriminated against in workplaces. Even among family members, the infection was often too much to bear.

Back then, antiretroviral drugs were not included in the government's universal healthcare scheme. Patients who wished to survive were forced to spend more than 40,000 baht a month on imported medication and for many this was simply unaffordable. The choice was either to pay or to die.

Growing up in a family full of love, support and understanding, Kaew was fortunately immune to emotional pain. After realising she was infected, she cried for one entire night. And the next morning, it was time to move on.

While her boyfriend was consumed by guilt and misery and firmly believed local superstitions were the cure, Kaew hunted for useful information and knowledge about what HIV/Aids patients were required to do, what tests they needed to undergo, and so forth. Without the costly antiretroviral medication she knew she would not be able to live long, so decided to spend the rest of her life doing good deeds for others as much as she possibly could.

Kaew created an online diary as a place to share her experiences with like-minded people. Her writing was later compiled and published and Kaew became famous, especially among those who sought solace and advice about the infection. Well aware of the value of her remaining time, she also started volunteer jobs at Wat Phrabat Nampu, an HIV/Aids hospice in Lop Buri, and later at Baan Gerda, a shelter for orphans with the disease.

Always in good emotional and physical health, Kaew had refused to be prescribed antiretroviral drugs even after the medication was included in the national healthcare scheme and HIV/Aids patients were given access to the medicine at no cost. That reluctance lasted until five years ago when her body's immune system became extremely weak. Even though she developed no significant complications, she became easily allergic to almost everything - even to short contact with mosquitoes. She therefore decided to give her body the green light to the life-saving drugs.

Currently a full-time activist at Baan Gerda, Kaew said working with HIV/Aids children was a very challenging task for her. While she is trying to help HIV/Aids-infected orphans to be, like her, strong and independent, at the same time she is acutely aware these kids yearn for love because it has been lacking in their lives. And the place where they find love is from their girlfriends or boyfriends and in many cases, it ends up in short-term relationships or promiscuous sex.

"For HIV/Aids-infected children at Baan Gerda, they came from broken families. Many of them have never seen their parents while many were abandoned very young," said Kaew. "And when they become teenagers, they feel the need to be loved and accepted. Many times they forget that through love and sex, they might spread their disease to other people."

And this, according to Kaew, is a serious social issue because Baan Gerda is not the only shelter for HIV/Aids orphans in Thailand. There are several similar places and every year a number of infected teenagers from foster homes enter society.

"The issue is like a time bomb," noted Kaew. "And it is about whether or not we can deactivate the bomb in time. When these orphans leave foster homes, it is impossible for us to keep an eye on them all the time. We cannot even be sure about whether or when they start a relationship they would tell their partners about their infection. And unfortunately, from what we know, most of them choose not to tell their partners the truth for fear of being left. So it is about whether what we teach them about disease protection as well as morality will help them understand their own situation so that they won't cause trouble to others.

"They really need to understand that in their cases, promiscuous sex can kill many other people and that they really need to be responsible for not just themselves but also others."

While the issue of HIV/Aids infection receives less public attention today, the situation is like an underwater wave that can one day turn into a gigantic surge - a real threat to people in society.

"The issue regarding HIV/Aids infection has been less in the spotlight during the past few years because there are other serious issues to think about such as drugs and so forth," explained the activist. "Besides, when antiretroviral drugs are accessible to all HIV/Aids-infected patients, the disease becomes a lot less scary. Back in the old days, HIV/Aids patients usually had nowhere to turn to. It was like they encountered a dead-end street. Today patients feel life is much easier. Information about the infection is available almost everywhere in a patient-friendly environment.

"The situation is somehow good news. But at the same time it is like a double-edged sword. The HIV/Aids virus will become stronger and smarter after it fights the antiretroviral drugs. And set aside the number of registered patients from the Ministry of Public Health, which only records those registered for medication, today there are a lot more HIV/Aids-infected patients out there in society - some know they are infected while many refuse to undergo blood testing for fear of the truth. So I think the HIV/Aids situation will become a serious concern again in the next three to four years."

For society to serve as a buffer against the infection, Kaew said everything needed to be considered on an individual basis.

"There have usually been campaigns to create understanding regarding HIV/Aids infection. There have usually been messages saying that HIV/Aids patients can live with others in society because the disease is not easily transmitted. But in reality, patients are still discriminated against. Deep down, a lot of people still do not want to associate themselves with HIV/Aids patients. Many organisations still need to see a pre-employment blood test without an HIV-positive result.

"So while people's attitudes cannot be changed, protection is always best. And most important is to live your life carefully. The majority of HIV/Aids patients got infected because of their carelessness. Especially women, they usually trust their partners so much they do not use any protection during sex. So a word of advice for couples - as long as you both have not had an HIV blood test and seen the result with your own eyes, do not trust your partner. Or even if the test shows a negative result, you cannot be sure that your partner will not get infected later. So the more careless you are, the greater the risk you will get infected with HIV/Aids."


To learn more about Kaew and HIV/Aids infection, visit

http://www.kaewdiary.com or http://www.facebook.com/Kaewdiary.

* Not her real name.

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