Courage to live
By Nattha Keenapan
KHON KAEN, Thailand, 8 February 2011 - The hectic scene in Srinagarind Hospital’s ward for children with chronic illnesses stopped briefly as two mime actors arrived for a performance. Many of the young patients in the ward, who suffer from debilitating pain due to various forms of cancer, slowly got off their beds and walked down the hall to secure seats for the performance, which is organized once a week for the children in the ward.
As one of the white-faced mime actors began acting like a rat trying to grow into something bigger, the room was suddenly filled with giggles and laughter of children. But what the children in the cancer ward did not know is that the young mime who entertains them each week and always looks so cheerful and lively, is living with HIV. The virus, which causes him numerous illnesses and health-related problems, also killed his parents.
Yet for both the young actor and his audience, the happiness provided through the pantomime is way to help them forget their pain for a little while and enjoy being children again.
Dab (not his real name), 18, has been infected with HIV since birth, and learned he was living with the virus when he was seven years old. “There was no one there to cheer me up,” says Dab, who looks about 10 years younger than his actual age due to the HIV virus suppressing normal growth patterns. “I had to keep reading a comic book over and over again. So I think these children will be happier and forget about their illness for a while if there is something fun for them to watch and laugh about.”
Dab’s parents died around the same time he learned about his HIV status, but his life became even more difficult several years later when his older sister, the only person who did not shun him, died in a car accident. Dab then lived with an aunt who ignored him and refused to eat with him. The situation was just as bad at school, where his one-time friends and other classmates refused to stand next to him.
Art and dramaThe depth of his grief and sadness was only revealed in 2003 when he began to attend a series of art and drama workshops as part of a holistic programme of care for children being treated for HIV at Khon Kaen University’s Srinagarind Hospital. Dab’s loneliness was reflected in his paintings and drawings and in the poems and scripts he wrote.
Dab said that as he continued to paint and to act in the plays during the workshops, the sadness and isolation he had felt for so long slowly lifted, and that he began to feel new hope for the future. At the same time, his viral loads gradually dropped which meant improved immunity and decreased risk of getting sick from illnesses.
“It takes much more than drugs to treat a child with HIV,” said Dr. Pope Kosalaraksa, a pediatrician who heads the holistic care for children and families living with HIV/AIDS project at the Hospital. “Providing treatment for children with HIV is about unfolding their inner problems and making them believe that they will live, not die.”
The holistic pediatric care project for children with HIV began at the hospital in 2003. The project, supported by UNICEF Thailand, uses creative activities as a means to better communicate with the children and help them express their feelings. More than 10 creative workshops have been organized for Dab and some other 250 children living with HIV across the country.
Srinagarind Hospital also provides a one-stop service for children living with HIV. When the children visit the clinic for their quarterly checkups, their leftover medicine tablets are counted and their blood is tested. Private and group counseling are provided for the children and their caretakers. Hospital staff and volunteers make regular visits to the children’s homes to better understand their problems and provide support, including counseling and educating their family members and school teachers.
Robert Gass, Chief of HIV/AIDS for UNICEF Thailand, said the holistic care model for children living with HIV is now being used in government hospitals across the country. “This model is a clear example that holistic care should be provided for children with other chronic illnesses as well” said Gass. “These kinds of activities help medical staff and AIDS workers better understand the situation these children live in every day of their lives. That is not something you can learn only through a physical examination in a clinic.”
Stigma and discrimination
Despite initiatives like this, stigmatization of and discrimination against people living with HIV remains widespread in Thai society. A survey covering 43,000 households nationally in 2006 showed that nearly 80 per cent of people in Thailand still have negative attitudes towards people living with HIV. The survey found that many parents did not want their children to play with children with HIV. As a result, many children with HIV are shunned by their friends and other classmates and often excluded from schools.
“It's like a vicious cycle,” said Chutima Saisengjan, a coordinator for We Understand Group, a non-government organization which runs the creative workshops. “They're all happy, confident and encouraged when they attend the workshops. But then they are sad and weak again when they go back home or back to communities where people shun them.”
Emotional difficulties have inevitably affected the children’s physical health. Many children, including Dab, stop taking their anti-viral medicine when they are sad and discouraged. The discontinuity makes their physical conditions worse and their treatment more complicated due to drug resistance. As a result, these children must start taking new medicines which often come in bigger tablets, making them more difficult to swallow. “These medicines were not easy to take so what was the point of taking it when there’s no point in living?” said Dab.
Dab has now moved out of his aunt’s house and works as a full-time volunteer at Srinagarind Hospital. He spends most of his time working with student volunteers from Khon Kaen University to create new plays for children with chronic illnesses at the hospital. Similar performances are also regularly provided for children in the out-patient clinic.
“The plays and other activities made me dare to think and speak out,” Dab said. “I used to think that I would die soon, but today I have friends and I have the courage to live. I feel that I have to rush in creating new plays, especially for children who are really ill, because I don’t know if I will see them again next week.”