The missing face of AIDS

Today is World AIDS Awareness Day.

Somewhere in today’s Inquirer I’ve written something on the Unicef campaign to help children affected by HIV-AIDS. ``Affected by’’ means these children have parents(persons) living with HIV-AIDS (PLH) or are themselves infected.

By the way, you don’t say PWA (persons with AIDS) anymore. You say PLH. So much for being politically correct.

Children, Unicef says, are the missing face of AIDS. According to the Lunduyan Foundation’s study on Filipino children affected by AIDS, silence, sad to say, best describes the children’s situation. Their parents’ hesitancy to be forthright about the disease is one of the reasons why their children’s plight is not being addressed.

After reading the results of the study I wanted to meet and interview a family affected by HIV-AIDS but I was told that there is a great deal of hesitancy on the part of the families. In fact, out 373 identified children, only 95 were allowed by their parents to participate in the study.

But these children are not totally faceless or voiceless. Some stories in the study gave a face and a voice to the otherwise silent world.



Here is Nina’s story.

Nina was born in a foreign country where her father was working. Her mother was a former health care worker.

Nina was about four years old when her mother was first hospitalized. When she turned seven, life for her and her parents changed dramatically. Nina described it as a roller-coaster ride that went straight down.

``That was when my mother became sicker than before,’’ Nina recalled. ``She stayed long in the hospital. After she left the hospital, she moved into a house near the hospital. I had to change school in order to be with her. When Mama lost so much weight her friends stopped visiting.

``I was about 10 when we returned to the Philppines. Mama did not get better but at least she was happier here. Her relatives were within reach and the health services were better.’’
Nina’s family was just trying to settle down in their new home when her father accepted a job in the country they had just left.

``I was very sad because I needed Papa near me. I was afraid I would not be able to take care of Mama very well. I felt too young. But Papa had to go. We needed the money for Mama to get well.’’

Nina’s father left and she wouldn’t see him for a long time.

``The first few months after Papa left, Mama found the energy to attend to my needs,’’ Nina narrated. ``She even engaged in business and earned extra money to send to my aunts and uncles in the province. I adjusted to my new home, school, friends, and to Papa’s absence.

``But this did not last long. Mama became increasingly cranky and hotheaded. She seemed to be always angry with me. Nothing I did was right for her. She blamed me for the unpleasant things that happened between her and Papa. I felt guilty and sad. Maybe she was right. Because of my needs Papa had to go away to work.’’

After some time, Nina found out that her father had stopped sending money and he was having an affair. The financial burden had shifted to Nina’s mother. To make a long story short, Nina’s mother sold the house (which she had saved up to buy) and moved to the province.

``One time my mother arrived home from the hospital with papers that had the words HIV and AIDS,’’ Nina recalled. ``I asked her what they meant and she replied, `Someday you will understand.’’’

Nina’s mother went to Manila often for treatment, sometimes staying there for more than a week at a time. ``I had to amuse myself whenever I was left alone in the house. I often wore my superhero costumes and stood on my bed, pretending I had enemies or bad people to fight and drive away.

``One time, while she was packing her things before leaving for Manila Mama said to me, `Nina please bear with me. I just need to get well.’ I did not want to add to Mama’s worries so I told her that I was not a crybaby and that I was not afraid of ghosts. But what I really wanted to say was that I did not want to her to leave me. And that I was afraid for her. That night, I prayed so hard that Mama would get well soon and be with me.

``One day, Mama finally told me what was ailing her all these years. She also informed her brothers and sisters. There was not much time left for us.’’

Nina tried to locate her father. While doing this she felt her love for her father diminish. At her mother’s bedside things were just as bad. ``During those times that she was in the hospital Mama would be as cranky as she could be. She would often tell me or her friends that I should not have been born. Or that it was my fault that my father left us. It hurt but I knew she was going through an awful time.

``When Mama;s friends came by and asked how life would be when she’s gone, I would say, `I hope Papa takes me.’ I didn’t want to be with my aunts and uncles because they didn’t seem to like me. I’d rather be alone. I’d like to go on studying. Someday, I might become a good artist.’’

After her mother died, Nina was placed in the care of an uncle who had drinking problems and a troubled family life. Nina continued her studies until an NGO was able to track down her father. He was, it turned out, living with another woman who was pregnant with their child.

Nina now lives with them and takes care of the baby.

``In the end,’’ the study on children affected by HIV-AIDS says, ``the silence with which these children live is not only silence about HIV and AIDS but about many aspects of their lives... Their burden of silence is heavier, as they too often do not have the tools to understand HIV and AIDS and its impact on their families…’’