By Mirirai Nsingo
Shingirai Matogo would lie in her cold home waiting. With every movement at her doorstep, every flutter of a shadow, every lick of the lips by the dog at the doorstep said to her the visitor she was awaiting had finally arrived.
It was a cocktail or resignation and anticipation wrapped up in fear and trepidation and yet this was a visitor she was resigned to receive. Shingirai was waiting for death. But he never came.
Being HIV positive in the 80’s, she was resigned to what would be brought to her by fate which was nothing short of a slow painful death when the Grim Reaper finally swung his sharp and unforgiving scythe.
Matogo, 53, lived during the era when Aids was better known as Shura Matongo; the disease that condemns an entire household to perdition leaving behind nothing but the crumbs of ruins in their homestead’s wake.
That, or rather The White Man’s disease as it was called then; Shingirai Matogo’s battle with HIV is as old as the first diagnosis of HIV in Zimbabwe and she has survived to tell it all.
With some tattered medical records in her bag, presumably as evidence to support the story of the 31-years she has lived with HIV, the mother of two recounts the horrific days when the country barely knew anything about Aids, and when bodies of the dead were literally dumped into graves, wrapped in black plastic bags.
Still vividly remembers when she was first diagnosed in 1986, following the birth of her third child, Doreen, who later succumbed to an Aids related illness at age 16.
“After giving birth to my third child, at the age of four months, she started developing thrush and swollen lymph nodes. Initially I thought it will go away but then I realised that the baby was sickly most of the time.”
“This was when I took her to the local clinic before I was referred to Parirenyatwa (Group of Hospitals) where doctors took turns to conduct several tests. Doctors and nurses shook heads in disbelief although no one told me anything about (the results of) any of the tests that were being carried out.
One nurse then told her that they were going to test her blood to see if she did not have the disease.
“After several days with the child in hospital, one nurse came and told me that both the baby and I had Aids. She tried counselling while she also seemed confused about the type of infection that I had. All she told me was that we were eventually going to die since there was no treatment for the disease,” chronicles Matogo.
As there was limited knowledge of the disease when she was diagnosed, Matogo was given a prognosis of having Aids rather than the more accurate HIV prognosis. At the age of 22, she had a sickly baby yet she had been diagnosed with the then dreaded disease and for her then, death was certain.
Both mother and baby, with no medication and barely any knowledge on the disease, went home miserable. She could only go home and wait for fate. And death.
Waiting For Death
“I was so miserable, filled with fear yet I had to be strong for my baby and my two other children.”
Matogo recalls how her husband did not make it any easy as he refused to go for the tests and even asked her where she had got the disease from when none of them had slept with a white person.
“When I got home, I told my husband that we (my daughter and I) had Aids and that the doctors also wanted him to get tested as well, which he refused. He insisted that he had not slept with a white woman hence it was not possible that he had Aids (HIV).
“The baby was not recovering, she was always sick. We also started getting sick and started getting all sorts of infections. He was still in denial and started being promiscuous leading to our divorce in 1989.
“I was now alone, with a sick baby and my two other kids who still needed my care. The struggle was so real. I was afraid that I would die and leave the two. I knew somehow Doreen would die and seeing her sick tore me apart and I blamed myself for infecting my innocent child.”
Matogo still recounts how stigma was overwhelming those days coupled with lack of knowledge about the disease. She says people with HIV or Aids literally were isolated from the rest of the community. No-one wanted to associate with anyone with HIV or Aids, as people would talk in hushed tones about the then little known disease.
“I helplessly watched my child suffer from all kinds of infections. I was also very sick but still had no option but continued to do my tailoring to sustain my three children.
“I would walk away every time anything about Aids was mentioned. I would even switch off the television when the disease was mentioned. By 1990, the knowledge gap about the disease was still real. People who died of Aids did not get decent burials. Families and friends were afraid of getting infection from the corpse, they would be wrapped in plastics and no body viewing was performed.”
“By that time I stopped attending funerals as reality struck that this was the same shameful burial that I would get. I also isolated myself from the society, “she adds.
She remembers how at 32, she was referred to as an old woman (gogo) because of how emaciated she was.
“Wakambonzi gogo at 32? I got to that stage when I looked like an old woman as the disease ravaged all the beauty.”
Meanwhile her ex-husband went on to marry another woman and two-years on after their divorce, he died. Matogo hardly had time to mourn the man who had walked out on her when she really needed support and somebody by her side.
“It’s Doreen’s illness that continued to haunt me. I wished there was a way I could have protected her. This also affected my health and I continued to deteriorate. My only solace was prayer.”
“In 1998 I had tuberculosis and fortunately I got treatment and recovered. By then, Doreen had progressed to Aids.
“In 2000, we also started hearing news that there were anti-retroviral drugs that were being bought from South Africa, but I could not afford them.”
“Her health deteriorated and I took her to Mashambanzou Care Trust where I had hoped that miraculously she could access anti-retroviral drugs. Unfortunately they did not have them but all they could offer was palliative care and support,” she recalls.
A deathly Birthday
She recounts how Doreen celebrated her 16th birthday on her death bed in Mashambanzou in September 2001, before she later succumbed to an Aids related illness shortly after celebrating her birthday.
Doreen’s death tore her apart but it is that same death that gave her strength to start HIV awareness and opened dialogue in the communities. She also lost her sister to an Aids related illness that same year.
“I mourned and regretted having infected (sic-passed on the virus to) my daughter, compounded with my sister’s death, I was so devastated and it was that moment that I decided I would not wait for death or helplessly watch as everyone close to me died,” says Matogo.
Matogo recounts how the death of Doreen took away all the fear she had and was replaced by the zeal and determination to fight Aids until the gods reunited her with Doreen.
She formed a support group made up of members who had HIV or Aids and says support groups played a critical role as members shared experiences, fears, information on nutrition and gave each other hope.
“I wished I started support groups before Doreen died; maybe she could have survived and she could have also accessed anti-retroviral treatment.
“I started reading as much as I could on Aids. I would read any piece of literature I came across. All the fear was gone and I was determined to fight till death.”
The Miracle of ART
She remembers how she was miraculously enrolled on the first anti-retroviral treatment programme in December 2003 which was spearheaded by a non-governmental organisation that specialised in HIV research.
Matogo believes she owes her life to God but hails science and medication which gave her a new lease of life.
“It was only God’s mercy that I survived and managed to be enrolled in this programme in 2003. So many people died while on the waiting list and by then, I had Aids but within six months of ART (Anti-Retroviral Treatment) initiation, I improved remarkably.
“I started gaining weight again and fortunately I never developed any complications or side effects when I got onto treatment until today. By year 2004, I had fully recovered and one could not even tell that I had HIV,” she recalls.
She vividly remembers when the country first rolled-out a national ART programme in 2004 adding that this saved lots of lives although she wishes the programme could have been introduced earlier.
Overwhelming stigma, knowledge gap, and ignorance all prompted Matogo and friends to form Clear Vision, a voluntary information dissemination and awareness group, in Glen View in 2004.
“We started getting into schools, workplaces and tertiary institutions where we openly talked about HIV. With support from well-wishers. We moved across the country and had programmes where we openly shared our experiences and created awareness.
“By then we had programmes running on television and this went a long way in bridging knowledge gaps and fighting stigma.”
She has lived in an era where no one expected her to see this day and has seen it all, although she notes that age is catching up with her.
Matogo says positive living even after the introduction of ART has taken her this far.
“Positive living is the key word. Know what to eat and avoid re-infection by using condoms when having sex.”
On the country’s HIV response, Matogo commended the nation for achieving tremendous progress in fighting HIV and has science and medication to thank for her new lease of life. That, and an incredible stubbornness to live to see the next day!
More than three decades on after the first case of Aids was discovered in the country, Matogo says it’s not yet Uhuru, noting that issues associated with poverty such as lack of adequate nutrition and lack of access to health care services had potential to derail the country’s gains.
“As the struggle continues, my daughter Doreen and all those who died of what was then known as full blown Aids before ART and even those who have succumbed to HIV over the years are on my mind.
“I remember how we were given food packs when the National Aids Trust Fund was introduced in the country. This really went a long way in improving the lives of people living with HIV but it seems programming has now forgot how crucial issues of nutrition are in HIV treatment, care and management.”
“While ART is for free, it should be known that people living with HIV are prone to opportunistic infections but user fees make it impossible for them to access health care services. There is need to continue improving access to health care for all if the country is to achieve the ‘end Aids’ goal,” argues Matogo.
She notes that programming should not leave out people living with HIV noting that these cadres were very instrumental in the country’s HIV fight.
Thirty one years on living with HIV, Matogo says she owes her life to God’s mercy and love and vows to continue raising awareness, fighting stigma until her last breath.
Far removed from the fearful woman who lay in wait for death to come and give her one final dance, one kiss that draws with it fleeting death, Matongo lives on. Perhaps she will forever be celebrated as the woman who death forgot. Perhaps more triumphantly, she is the woman who remembered to live!