Unable to face explaining to her younger daughter Winnie Namagga, that, after losing her husband and eldest child to AIDS, she herself had tested positive for the disease, Harriet Balakyabwe decided to say it in writing.
I was fearing to talk about it, Harriet Balakyabwe, Winnie’s mother, told AFP. When her father and sister died Winnie got shocked. She was always on me, that even I was going to die.
Unable to raise the subject in conversation, Balakyabwe, 39, decided to write the news down.
She joined a program run by a Kampala-based organization called the National Community of Women Living with AIDS (NACWOLA) that helps women write a Memory Book.
The book consists of biographical information, family photos and, perhaps most crucially, a page about health.
As she leafed through the book in her home roughly 15 kilometers outside Kampala, Winnie smiled and giggled at pictures of her mother’s wedding day, and of her father – who died in 1999 – climbing up a roadside pole while at work for the Uganda Electricity Company.
But her mood turned somber when she reached a page entitled My Health where, in 2002, Harriet disclosed her condition to her daughter for the first time.
I didn’t know anything about this before my mother gave me the book, the shy 13-year-old whispered to AFP.
While learning about her mother’s condition understandably upset Winnie, it prompted a conversation that Harriet had struggled to initiate for the two years after she tested positive.
One of the purposes of this book is to help us, women living with HIV, to talk to our children, to disclose our status to our children, Agnes Apea, Executive Director of NACWOLA told AFP.
The book is also meant to function as a living will, so that children with terminally ill parents have information about the family’s property, and Apea said she hopes Ugandan courts will soon regard the Memory Book as a valid legal document.
More importantly for Harriet, the book provides a means to continue parenting after her death.
Harriet said she regularly feels ill and in Uganda’s troubled healthcare system lifetime access to Anti-Retroviral Therapy (ART) is far from guaranteed.
So, the prospect of orphaning her three surviving children is an ever-present and daunting concern.
Interspersed among the book’s family history is advice from Harriet to Winnie: not to have sex before marriage, to work hard and to pray often.
I don’t want them to be useless people in the community. It’s important that they know how to conduct themselves, even after I’m gone, Harriet said.
According to NACWOLA, more than 400 Ugandan women have completed Memory Books so far.
Unfortunately, that figure is likely to rise.
More than a million Ugandans are currently living with HIV, and new infections have increased for four years running, according to the Uganda AIDS Commission (UAC).
The most at-risk group, still according to the UAC, are women aged 30-34, who contract the virus from husbands who have sex outside the marriage.
Apuuli said 20 percent of married Ugandan men admit to having extra-marital sex but that the real number is certainly much higher.
To solve this problem, one of the things we have to do is address the behavior of men, Apuuli said.
In her Memory Book, Harriet was brutally honest with Winnie about the family’s history with AIDS.
She explained to Winnie that even after multiple tests confirmed he had the disease, her father refused to acknowledge he was sick and refused to accept that he and his eldest child were dying from the same disease.
For Harriet, the priority in writing the book was to ensure that whatever happens in the coming years, her surviving children have a truthful family record.
At least now they know everything about their family, she said. They know everything about me.
