UMZALA
Elaine Maane's story deals with the bravery and courage of women living with HIV...
'In 2001 – the ANC's silence had devastating consequences for the South African Government's provision of antiretroviral treatment and entrenched fears about taking ARVs. Elaine's humour, compassion and courage with Umzala will educate society on the prejudice that holds our hearts in chains.'
– Pregs Govender, ex-ANC MP
Elaine Maane's story is almost too much to absorb. It is shocking, desperate and yet uplifting. Her journey encompasses her husband's betrayal, his non-disclosure of his HIV status, her contraction of HIV, the stigma, the denial, the insensitivity of family and society, the attitude of some doctors, and the dedication, warmth and caring of others.
Woven through this poignant story are the deaths of six family members. The first is her husband, followed by three of her brothers, then her father, and one of the unkindest of all, the unnecessary death of her baby sister, Pamela.
It was perhaps foresight that when Elaine was born her mother gave her the name Chibola, meaning 'Hope', and her father Makumbi meaning 'Clouds' – anticipating that she would survive and shine despite life's challenges.
Umzala is the second in a series of books published by The Openly Positive Trust whose members aim to be role models and promote a positive lifestyle in bringing about constructive change in living with HIV. The change, advocated by The Openly Positive Trust, Elaine says, 'Starts with each of us. My book is dedicated to all women of the world that have made it against the odds and risen above their challenges.' She is direct, simple, delivering brutally honest observations in her unapologetic staccato style.
Despite relentless waves of grief and longing, loneliness and despair, problems with intimacy and her unfulfilled needs – Elaine chooses to be happy and not bitter. Her story will break the silence of so many women and promote the visibility of people living positively with HIV. Umzala is a woman's story of love, betrayal, loss, joy and laughter. It is Elaine's story of being a single mother, a lover, a friend and a colleague.
Elaine, the first daughter of 10 children, was born on 24 May 1971 in Lusaka, Zambia, to professional and hard working parents. Her father was an architect who often brought his work home. She remembers with amusement that she could never understand why he didn't 'colour in the pictures' he was always drawing. Elaine's mother was a secretary and returned home daily to the unenviable task of caring for and feeding 10 children.
Elaine's was a carefree upbringing, playing with the neighbouring kids in the streets of Chilenje South, reluctantly coming indoors to help prepare food and do chores. From young she baulked at the idea that African girls were brought up only to be 'better wives' to someone later in life – her independent and free spirit evident from an early age.
As a slightly rebellious teenager she began a life-long habit of going for long runs to escape. It was during one of these runs that she met her future husband, Lucky, an exile from South Africa. They became close and just before his 25th birthday they had unprotected sex and she fell pregnant shortly before her final matric exams.
In 1991 after the birth of son, Skhumbuzo, Elaine, Lucky and her baby boy moved to South Africa. Her alienation from events in South Africa, combined with Lucky's desire to get back his life and family after exile, meant that Elaine was increasingly alone and unhappy.
She also discovered that 'Lucky's' real name was Collin and was horrified to find he had a son, aged 7, from a previous relationship. She also hints at conflict between the returning exiles and those who remained.
Elaine's unhappiness is compounded by the revelation of Collin's unfaithfulness – her recollection is both matter of fact and heartbreaking. There seems to be no doubt that it was during these nights away from home that he contracted HIV.
In the course of a long overdue gynaecological check-up Elaine was diagnosed with HIV which she refers to as Umzala – the isiZulu word for cousin – her first introduction to HIV as a new relative or life companion. Collin's absolute refusal to talk about his HIV status, his visit to her while she is in hospital with a bouquet of flowers and his death the following day, was the beginning of a roller coaster of shock, anger, grief and despair. She says, 'He made his exit without saying goodbye to his son or to me.' Her first and devastating loss linked to HIV.
Elaine's journey with Umzala was a totally unknown one. She knew little about HIV/AIDS, apart from it being classified by some as a 'slimming disease'. And the road was paved with prejudice, fear, rejection, death, more death, love, warmth, happiness and hope. Umzala covers her experiences with life-saving antiretrovirals (ARVs), their sometimes body-changing side effects, her brushes with opportunistic infections and the poignant moment when she breaks her silence and discloses her HIV status to her then 12-year old son.
Elaine takes us through her participation in the clinic for people living with HIV and AIDS at Groote Schuur Hospital which later spurned the support group Sizophila (We shall survive) at the Uluntu Centre in Gugulethu. The Mother-to-Mothers-to Be Programme (M2M2B) for which she was nominated as a finalist in the Shoprite/Checkers Woman of the Year Award.
Elaine's other contributions include: speaking at the opening of the International AIDS conference in Barcelona in 2002; being a regional coordinator for the National Association of People Living with HIV and AIDS (NAWPA); and, in 2005, being part of forming The Openly Positive Trust to bring about change for everyone living with HIV and AIDS.
The foreword is written by Pregs Govender, ex-ANC MP. The back cover features endorsements from Dr Mitch Besser, Nomampondo Barnabas, and Don Edkins – all prominent figures in HIV/AIDS-related work.
* Released by Dorria Watt on behalf of The Openly Positive Trust