HIV and AIDS

Memory Boxes

When Agnes Nyamayarwo’€™s son, Peter, was four years old, he discovered from a boy at his school that his mother was HIV positive.”This boy warned the other children not to share Peter’€™s food because they would get AIDS from him,” says Nyamayarwo.”I felt very bad that he heard it from school. We think we are protecting them [by not telling them about our HIV status] but somehow they get to know

When Agnes Nyamayarwo’€™s son, Peter, was four years old, he discovered from a boy at his school that his mother was HIV positive.

“This boy warned the other children not to share Peter’€™s food because they would get AIDS from him,” says Nyamayarwo.

“I felt very bad that he heard it from school. We think we are protecting them [by not telling them about our HIV status] but somehow they get to know.”

This painful experience made Nyamayarwo realise that it was important that she communicate directly with her children ‘€“ not only about her HIV status, but also about things that are important to her.

Through the Ugandan National Community of Women Living with HIV/AIDS (NACWOLA), Nyamayarwo joined other mothers who are making memory books and boxes for their children.

These books and boxes are treasure chests of family information, based on a series of “prompts” developed by the organisation ‘€“ such as family trees, family values and traditions, and records incidents like the first time the child walked or spoke.

Photographs, drawings and favourite items may also be put into the boxes.

These family records are especially vital for children lose their parents when they are very young, providing insight into the parents they never knew.

NACWOLA’€™s Beatrice Nabwire-Were says the books “empower parents to communicate with their children” and “help children to understand where they come from’€¦ their identity”.

In South Africa, the idea of making memory boxes is still new. But a group of HIV positive people in Soweto, organised by the AIDS Counselling, Care and Training (ACCT), has been making memory boxes for the past few months.

Co-ordinator Jonathan Morgan says the process of making the boxes is therapeutic, as most people “find it so hard to disclose their HIV status, but easy to write, talk or draw about it”.

He helps people to make audio-tapes containing songs and stories, as well as making bright boxes to house the tapes, books, photographs and other precious objects.

“One woman told me after making her box ‘€˜I thought I had nothing valuable to give to my children. But now I have something very valuable’€™,” said Morgan.

While the Soweto project is not aimed specifically at parents, some mother have brought along their young children to the box-making workshops.

“We invite the children to make hand prints and pictures to put in the boxes as well,” says Morgan.

Some of the finished boxes remain at the ACCT offices, and will only be handed over to loved ones once their creators have died. Others have already given the boxes to their children or loved ones.

“I know one person who is using the box as their child’€™s toy box,” says Morgan.

Philippe Denis of the University of Natal’€™s history department has also begun a memory box pilot project in KwaZulu-Natal. However, he says that the project is still at an experimental stage and the first boxes will be finished in December.

Morgan and Denis are in the process of setting up the South African Memory Box Association to bring together all those interested in, and involved with, memory boxes.

In a country where up to 700 000 AIDS orphans are expected by the end of the year, according to the United Nations Development Programme, the memory boxes provide an important link between families’€™ past, present and the future.

And for orphans under the age of five, the boxes are perhaps the only way that they will have any insight into who their parents were.

Sadly, however, few fathers are involved in making memory books and boxes, thus running the risk of remaining outside their children’€™s memories forever.

Many of those involved with caring for orphans have also warned that very little is being done to address the psychological distress of young children who have witnessed their parents’€™ suffering and death.

“The psycho-social problems [for AIDS orphans] begins long before their parents death,” says Carol Findlay, who works with orphans at Ekwendeni Hospital in Malawi. “They see them getting sick and dying. With their death, the children run the risk of being isolated, their opportunities for education are reduced, and their chances of being malnourished are increased.”

* The SA Memory Box Association can be contacted at email: joko@pvas.co.za

About the author

Kerry Cullinan

Kerry Cullinan is the Managing Editor at Health-e News Service. Follow her on Twitter @kerrycullinan11