Heart of gold

Photo by wheat_in_your_hair‘I crossed the ocean, for a heart of gold . . .’ Neil Young sang over the radio as I drove home last night. He might have been on an endless search for a ‘heart of gold’ but I have already found one.

Below is the transcript of an interview I did with the eight-year-old daughter of a woman critically ill with an AIDS-related illness in northern Thailand. Her mother is in hospital in a coma and it is unclear where she and her one-year-old sister will live.

She didn’t want her name disclosed but she wanted her story to be told.

When did your mother become sick?

Heart-of-Gold: She has only been sick for the past year. She was a waitress where she met someone and conceived and later my younger sister was born. A month after delivery, she developed fever everyday, lost body weight and eventually tested positive for HIV. But she didn’t tell her HIV status to anyone, not even us. When she told us about her HIV, it was already too late.

I used to cry so hard but now I feel good by taking good care of my mother and my younger sister. My relatives told me to be strong and accept this reality.

How did you take care of your mother?

Heart-of-Gold: I cleaned her body, change her clothes, regularly wipe the saliva, blood or other body secretions that come out of her mouth, sometimes she vomits so we need to clean the vomit and her bedding or clothes, and also be of help in taking her to the toilet and cleaning her after she pees.

Don’t you think it’s dirty?

Heart-of-Gold: For my mother, I have to do it. I also need to take care of my one year-old-sister since my mother is sick with AIDS and tuberculosis (TB). Sometimes she fell from her pillow and cried because of hunger but am busy taking care of my mother and I don’t have time to prepare milk or hold her.

Have you ever angry at your mother for the situation?

Heart-of-Gold: I am not angry but sometimes I feel frustrated because there is nothing I can do to save my mother. My mother used to ask me to buy her coconut water or poison because she wants to die. But I can never buy that. I will take care of her. I’d rather see her alive even she must be suffering than to let her die.

Do you feel tired carrying your sister around for a long time?

Heart-of-Gold: Yes, sometimes in the night I felt tired, but then I switch her to my other arm. She used to wriggle hard, pinch my head, pull my hair and sometimes slap my face [laughs]. But she is too small to realize what she is doing. When she is too naughty, I will just say ‘quiet – or I will not walk you around’ and she will become quiet [smiles].

Has your sister ever fallen from your arms?

Heart-of-Gold: Never.

I heard your sister calls you mom . . . does she call your mother and your grandmother ‘mom’ too?

Heart-of-Gold: No, she doesn’t. I don’t know why she calls me ‘mom’ when I am just her sister.

How about your school?

Heart-of-Gold: I cannot go to school since I have to take care of my family.

Would it be easier if your sister stayed with someone else?

Heart-of-Gold: I want to take care of my sister but I am too small, and don’t know how to earn money. If my younger sister is separated from me she may grow up in a better place [she shakes with sadness].

What do you think of AIDS?

Heart-of-Gold: [she holds her body tight.] I don’t want to be infected with AIDS.

Do you know how people can get HIV and AIDS?

Heart-of-Gold: By not wearing a condom.

Who told you that?

Heart-of-Gold: I used to read a banner that said ‘by wearing condoms, you will not get AIDS’.

What would you like to tell other people living with HIV or AIDS?

Heart-of-Gold: If they are like my mother who didn’t talk about her HIV status because of shame till it was too late, then, I would tell them to think of how their children and other family members would feel if they lost them. So please talk and get help when there is still time.

I will also like to say to other family members of people living with AIDS to take care of them as much as possible.

Is there anything you want to ask me?

Heart-of-Gold: Where will I stay after this? [A brief pause]

Where do you want to stay?

Heart-of-Gold: I don’t know. Wherever, but I’m afraid that people will take me and hit me, sell me or rape me. I heard in Bangkok they do that. I’m scared. My father doesn’t really care about me anymore. He has married again and has a new family.

If you can have one wish from an angel, what would you ask for?

Heart-of-Gold: I wish that no one is the world would ever get sick again.

What about you? Don’t you want to ask for something for yourself?

Heart-of-Gold: I wish that nothing bad will happen to my mother and sister. If anything bad happens to them, I’ll be dreadfully sad.

Do you want to go to the hospital to visit your mother?

Heart-of-Gold: No . . . I am afraid . . . If . . .

[She puts her hand to her eyes before the tears start falling. I couldn’t ask her anything else]

As the curtain of the 17th International AIDS Conference in Mexico falls today, the real life stories of countless children affected by HIV continue to pose questions that need an answer.

If only everyone could see the way her little thin hands carried her sister with care, courage and strength.

. . .

Has your sister ever fallen from your arms?

Heart-of-Gold: Never.

. . .

I hope that she would never will.

Jitima Jantanamalaka-CNS