My story of living with HIV
Their parents told them to keep their distance. It broke my heart. The stigma made me feel deeply isolated, writes
‘Makhulu, why am I always sick?” I asked my aunt. She winced and sat me down. It was strange because she never did this. But before she could even answer the question, I asked: “Makhulu, why am I drinking these unpleasant things from the hospital?”
I was seven years old and in second grade at Intokozo Primary School in Katlehong, and for as long as I could remember, I had been a weak child who used to go to and from hospital – but I didn’t know why.
My now late aunt would just say: “Nkosikhona, we have to wake up at 5am and go to the hospital. You need to be checked.”
Having to drink medicine every day and eating all that healthy stuff was a normal thing for me – but until that moment, I had never thought to ask why.
Makhulu paused and said: “My child, you are HIV positive. That’s why you drink these medicines, and that’s why I have to ensure you drink them at the correct time and ensure that you eat healthily so you can get better and go to school on a regular basis like every child.”
But how? I thought to myself. I had neither touched an infected person’s blood with my bare hands, nor shared a syringe. There’s no way, I thought. She was lying and did not know what she was saying.
What I did not know then was that the virus had been transmitted to me by my late mother.
“Why are you suddenly concerned, my child?” Makhulu asked me, looking worried.
“It’s because the other children at school always ask me why I am always looking sick.”
“Don’t worry my boy. You drank your medicine, right?” I nodded. “Yes. You’ll be fine soon. Next time they ask you, tell them that you’re sick with asthma.”
That’s how I responded to personal health questions from my peers at primary school. I said I had asthma.
Because of my illness, I would often miss school. On the days when I didn’t go to school, I was either going to the hospital or to physiotherapy. It was always fun at the physio because I played a lot of the time. The physiotherapists liked me and gave me a big purple exercising ball. I would kick the bottom of the ball and it would bounce across the room.
But I missed being in school. On the days when I was well enough to go, I would get excited. My teachers would also be happy because I was a quick learner who would answer any question asked in class. The teachers knew I was sick because my aunt had explained to them why I was frequently absent.
Ms Mathebula was my favourite teacher because she always treated me like I was special, although she was very strict. She would ask me to join her for lunch, and constantly checked how I was doing by phoning my aunt when I was absent. She would bring me fruit and make me feel better. I loved Ms Mathebula.
As for the other children, their reactions were mixed. Some looked at me with great pity, while others would just be normal. I liked the ones who treated me normally and I always ensured that I befriended them.
But other supposed friends of mine shunned me, claiming I was going to infect them with the virus. Their parents told them to keep their distance. It broke my heart and I was filled with confusion that people were so wrong about the virus. The stigma made me feel deeply isolated.
After school, my aunt would take me to a communitybased facility called Philafuthi, which dealt with issues such as HIV/Aids, teenage pregnancy, orphans and child-headed households in the community. The facilitators would teach us discipline, drama and poetry. They would also help us with homework if we had any.
Philafuthi also had sponsors from overseas, who would come over on Fridays and give us goodies and delicious meals. One of the volunteers, a woman named Alicia Andrews, liked me and usually brought some children’s books and toys from her country, which I played with when I didn’t go to school.
I also enjoyed reading the stories she gave me about the fortresses, knights, princes and princesses. They kept me busy at home and I would not worry about school because I was reading books at home.
When I finished reading a book, I would ask for another from Alicia. The books gave me comfort, they became my best inanimate friends that I would laugh at, feel pity for, love and learn a lesson from. The happily-ever-after stories inspired me as I would sometimes imagine myself as the prince in the story.
I ignored that I was sick. I ignored the stigmatic society and the pain of not having parents. Of all the characters of the books I read, Aladdin was one of my best friends. It was my favourite book to read when I was sick. This is how I came to love storytelling, writing and reading.
The more I ignored that I was sick, the more I got better and better. The doctors were impressed as time went by, and my aunt was happy that I was becoming a normal child. The dark cloud in my life disappeared, like a shadow in the presence of light. I became more confident in myself because I got a chance to live a better life again.
Since then, many years have gone by. I am now 19 years old and have just finished my final matric examinations. I am anticipating good results. These past years have been nothing but a journey of perseverance and resilience. This is my story. Through all I faced in my childhood – the stigma, confusion, sickness and sometimes feeling sad – I still held something deep within me: courage and living a positive life (I hope you get the pun!).
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POSITIVE LIVING Nkosikhona Kumalo has had to overcome many obstacles