Almost 40 years with HIV – from ‘dead man walking’ to HIV awareness champion
On December 12, Ntimbwe Munongo Mpamba will celebrate his fortieth birthday with chocolate cake in Northgate, Johannesburg. Usually, his diet consists of more “bitter” than sweet foods – plenty of kale, spinach, cayenne pepper, ginger, and garlic, he tells Spotlight.
The youngest of five children born in the Zambian Copperbelt town of Kitwe, Mpamba’s mother – a nutritionist – taught him to fuel his frail body with food. From an early age, Mpamba was sickly.
“She taught me that if something is not bitter, it’s got no value in my body. So my body came to be programmed to think of bitter foods to come first. For example, a lot of green-leaf vegetables and spices.”
At the age of four, he lost so much weight that his mother introduced him to daily vitamins disguised as sweets. “These were vitamins in sweet packets,” he recalls. “My mother told me they were sweets. I didn’t ask questions, for I was the golden child who got anything I wanted at the snap of a finger. This was their way to get me to not ask too many questions.”
‘A family secret’
What Mpamba’s mother did not tell him was that he was born with HIV. An aunt finally revealed this family secret to him three decades after his birth. When he tested positive in his early twenties, Mpamba never suspected that this might be the case. At the time he tested positive he had many questions as he had been a “mommy’s boy” and not inclined to have romantic relationships.
Being born with HIV was a secret kept from me for three decades. Most of my life was spent in and out of hospitals. I was forever on vitamins and medication and let’s not forget the pampering.
At the time of his diagnosis, his CD4 count (an important measure of immune function) was a withering 36 cells/mm3 –a healthy CD4 count is between 500 and 1 500. His HIV viral load was over 100 000 copies – which indicates that HIV was replicating at a high rate in his body. In short, he was very sick.
“Being born with HIV was a secret kept from me for three decades,” says Mpamba. “Most of my life was spent in and out of hospitals. I was forever on vitamins and medication and let’s not forget the pampering.”
Once described as a “dead man walking”, today he is living testimony to the scientific strides made in treating HIV with antiretroviral therapy.
‘HIV awareness champion’
In the run-up to World AIDS Day 2022, Mpamba was interviewed by broadcasters in South Africa and Nigeria. He regularly delivers motivational talks, speaks at conferences, and has penned editorial pieces and booklets on living with HIV.
Speaking to Spotlight, he describes himself as the “Africa HIV awareness champion”. “That’s my own title. There have been so many others that I have been given. But in a nutshell, I’m the Africa HIV awareness champion.”
For the interview over Zoom, Mpamba is wearing a black sleeveless denim jacket embossed with colourful badges and AIDS ribbons. He explains that the jacket was a gift from Reverend Corine McClintock, the founder of the non-profit HIV haven and orphanage Sparrow Village in Maraisburg. McClintock herself wore the jacket for 24 years, he says.
“So the Reverend passed the burning torch on to me. At the orphanage, there are more than 250 kids born with the HIV virus. So I’m the person who gives them a reason to live. I would visit them just to say, Hi guys, how are you? I’m still going strong. And you can do the same!”
When Mpamba was nine years old, his father, a mining purchasing and supply manager got a job in Johannesburg. The family relocated in 1992.
“Flying on a jet plane was a dream come true,” he recalls. “Leaving my friends in Zambia was heartbreaking, but that did not stop my excitement for new pastures. As we landed at the airport, the environment was totally unimaginable. The elevators, escalators, and the shops, it was overwhelming. We were booked into the Holiday Inn at Sandton City, where I abused room service.”
Mpamba was enrolled at Sharonlea Primary School in Randburg. “As sweet as it was, my health got a knock on the head,” he says. “I got chickenpox, part of the herpes virus. I had a weak bladder and rashes all over my body and face. My mother, being a nutritionist, continued to give me vitamins. The love and trust I had for my parents didn’t give me a reason to ask questions. I just flowed with the music.”
Health and home setbacks
Three years later, as South Africa was hosting the 1995 Rugby World Cup, Mpamba’s father fell ill with meningitis and passed away.
“I was torn apart,” says Mpamba. “After my father’s death, things became difficult for us to remain in South Africa as my mother was not working. Running out of options, mother decided to head back to Zambia. Getting back [on] our feet was something I remember.” He remembers his mother was unemployed and his health compromised. “This was something the family couldn’t bear. Praying while lodging at my uncle’s place was the best solution at the time. It didn’t take long before God answered our plea. Mum got a job, and we got a house.”
In their respectable middle-class family, living with HIV was not a topic to be discussed. In 1996, enrolled at Nkana Primary School in Kitwe, Mpamba was soon forced to leave school to be hospitalised for a painful rash caused by herpes zoster, (shingles).
Two years later, he was diagnosed with pneumonia and the following year with tuberculosis (TB) for which he took a six-month course of medication.
“My health was always something to talk about,” says Mpamba. “I was not allowed to do sports. I mean I would do simple sports like sack race or egg race – no soccer. They thought I would actually just fall on the pitch and die.”
In 2001, he matriculated at St Johns Convent Secondary School with high marks. While studying accounting in Lusaka, Mpamba received the devastating news that his mother had succumbed to TB. “My heart sensed that something was not right,” he says. “At that moment my soul had left because my pillar, comforter, my best friend had gone.”
Without his mother, Mpamba’s own future was uncertain.
“I was an expenditure because I had a special diet, you know. Fruits, veggies, [and] every meal had to have greens. I couldn’t go and stay with just anyone, because maybe they don’t have the budget for greens every day. Remember, I was a special child under my mother. So relatives put me on a bus to come and stay with my sister in South Africa.”
He arrived in Johannesburg on the day before Christmas in 2004. Distraught, he started drinking and his health took a turn for the worse. He developed a persistent cough.
I had to take 20 tablets per day – 10 in the morning, 10 the evening until my CD4 count got to 490
In January, at Medicross Randburg, he says Dr George Gabriel ordered an X-ray which showed that three-quarters of Mpamba’s left lung had been eroded. Mpamba says up until this day the cause of this is unclear as he refused to have a biopsy. In addition, Mpamba started going blind in his right eye due to a return of herpes.
“So Dr Gabriel asked me whether I’d ever done an HIV test before and I said no. I had no reason to because I had been a mommy’s boy. Dating was writing letters. Parties, I would go for an hour, then go home. So my teenage life had been programmed – go to school, come home, do my homework, have tea, enjoy TV with my mom.”
‘The landlord and the unwanted tenant’
At the age of 23, Mpamba learned that he was HIV positive – “with a CD4 count of 36, basically I was a dead man walking,” he says.
ARVs saved his life.
I am the landlord and HIV the unwanted tenant. With the help of ARVs, I have evicted the unwanted viral cells
“I had to take 20 tablets per day – 10 in the morning, 10 the evening until my CD4 count got to 490,” he says. This dropped back to 8 after he stopped taking the medication regularly.
However, since getting back on treatment, today Mpamba has a CD4 count of 893. “I am the landlord,” he says, “and HIV the unwanted tenant. With the help of ARVs, I have evicted the unwanted viral cells.” He lives with his sister in Northgate and has a long-term girlfriend.
“So my job is to train others to be better than me, in short,” he says. “Not to default, not to go drinking. That’s my 40th birthday goal. Through my challenges, I want to create new leaders.”
He adds that while stigma around HIV has decreased, it is still prevalent. This is why patients remove ARV tablets from their original packaging after receiving them from clinics. “That packaging is recognised,” he says. “So people put their medicine in a Panado packet, for example.”
Should parents tell their child if that child is HIV positive?
“Yes. Yes, they should,” he says. “There’s a saying – that which you don’t know won’t kill you, which is very wrong. What you don’t know in the HIV world will kill you faster than you know. That’s why it’s always important to know your status.”
*Don’t miss our next article unpacking how parents, caregivers, and health professionals can navigate disclosing a positive HIV status to their child.