Thembela Gwenxane had just been given three months to live when she started putting together her memory box. It had taken her three years to confront her HIV positive status, and when she finally began taking antiretroviral (ARV) drugs and experienced violent reactions to the medication, she thought her time had come.

With a memory box filled with her favourite things, and a memory book relating the story of her life, Thembela thought she could help her mother cope with the impending loss. "I wanted to give my mother a message. I wanted to tell her to be strong, and that I loved her ... it's not easy for a parent when a child dies," she told IRIN/PlusNews.

The young woman, who coyly admits to being "thirty-something", even went so far as to give all her clothes away.

Five years later, in the Cape Town township of Khayelitsha, a healthy Thembela hasn't much use for her memory work these days. Gwenxane has more immediate concerns: her new boyfriend, who is also HIV-positive, finding work, and her weight gain. She even had to hide the memory work away from her mother, who gradually became annoyed with the old white shoe box, painted in red and green food colouring, and the dilapidated memory book, lying around her neat four-bedroomed house.

Memory books or boxes provide a way for HIV-positive people - usually parents - to create a personal legacy to leave behind for their family members; putting together photographs, letters and valued objects. This can also be a way for relatives to disclose their HIV status and discuss plans for their children's future.

Memory work comes in all shapes and sizes - a discarded shoe box, a basket, a book made from an old cardboard box - and have traditionally been associated with a preparation for death. Individual counselling is sometimes too expensive and impractical, while memory work is a cheaper model of psychosocial support.

The evolution of memory work

According to psychologist Jonathan Morgan, as antiretrovirals become more widely available in the country, forms of memory work would need to evolve "to assist people living with HIV and AIDS to live positively, to hold on to life ... even to celebrate life". In South Africa, about 250,000 people are receiving ARVs through the national treatment programme - about 20 percent of the estimated number of people living with HIV.

Morgan, who is the former director of the Memory Box Project at the University of Cape Town, noted in a study that memory work could no longer be "confined to operating as if treatment is an unrealisable dream" and called for a more "transformative and revolutionary" approach to this innovative form of psychosocial support.

"Memory work has definitely changed. Now people can keep these boxes, and look at where they come from and where they are going, in terms of their illness," David Stephens, health and care coordinator for the South African Red Cross Society remarked.

In Thembela Gwenxane's support group, run by the Khayelitsha branch of the national Red Cross society, memory work has shifted, and has become more of a coping mechanism. Terry Galeni, Red Cross home-based care coordinator in Khayelitsha - and Gwenxane's confidante - noted that "body mapping", and "hero books", were now being used more often.

Forty-five year old Bongani, for example, another member of Thembela's support group, found it difficult to open up to the rest of the group and the counsellors when he started attending meetings. But tracing a life-sized body map of himself on a sheet of paper, and drawing how he pictured his body and his life, made talking about his HIV status and the challenges he faced a little easier.

Bongani's body map is titled 'When days are dark, friends are few' because when his friends found out he was living with the virus, they all disappeared. "They are no longer my friends, we walk past each other in the streets and they don't greet me to this day," he told IRIN/PlusNews with resignation.

The peer educator and casual labourer has already shown his memory box - a bright gaudy affair, with yellow stickers and wax crayon drawings - to his 21-year-old daughter. "We don't talk about death much these days since I started taking [ARVs], and besides, I want her to concentrate on her computer course."

Despite the increasing availability of life-prolonging treatment, the psychosocial needs of people living with the virus cannot be ignored, Galeni said. "Treatment will make very little difference to your system if you are psychologically down. If you are in a bad emotional frame of mind, it will have a major impact on your CD4 count [which measures the strength of the immune system] and viral load."

While memory work has largely been done by adults, children affected by the virus are now being supported through hero books; a particular kind of memory book, in which a child is invited to be the author, illustrator, main character and editor of a book that is designed to give them power over a specific challenge in their life.

The Red Cross has begun to introduce the hero book as an intervention in its national programme - not just for children orphaned by the epidemic.

"AIDS is just one of the symptoms children are dealing with. The areas they are living in are violent and poverty-stricken, this is traumatic for children. Hero books allow them to express these problems," Stephens commented.

When death becomes a reality

"It must not be assumed that if memory work is for life, it is not for death. Many people who are on ARVs die of other things ... not related to their HIV status," Morgan pointed out.

Thembela's sister, who was also HIV-positive, died of cancer over four years ago. But it took Gwenxane and her mother a long time to recover from the loss.

"She died in February 2003. All we wanted to know is why God did this to us, why did he take our sister? I couldn't even eat. I was very stressed. I don't want the same thing to happen to my mom. This time, she must be prepared, she must accept it."

In Xhosa culture, talking about death is often regarded as taboo. But Thembela's memory work, however annoying to her mother, has helped the two broach the awkward topic. "Now she knows what will happen. When I die, people must be open and not hide it if I died from AIDS. It musn't be a secret. They must wear those T-shirts that say 'HIV Positive', and talk about how I used to love to dance."