The scene played itself out three times a day. Nkosi would stand there, a glass of coke in one hand and a pile of pills and potions on the kitchen table in front of him.

It was a week before Christmas and we had invited Nkosi to spend time with us. We are friends with his mother Gail and we saw how difficult it could be for her at times. It was the end of the year and we knew Gail and Nkosi needed a break. Nkosi’s condition had been deteriorating steadily throughout the year and we all realised it was only a matter of time before he died. In fact a week after he visited us that December he slipped into a coma, never to awaken again.

But that day Nkosi put on a brave face. “Tonight we’ll go and have those prawns,” he announced once while trying to swallow the handful of tablets.

He would stand there for about three minutes, glass in his slim hand, eyes shut tightly as he tried to coax his frail body into accepting the pills, some of them vitamins, some of them larger and too dry and bulky to swallow.

Every morning he would wake up, chirpy as usual with some or other story to tell or a joke to share. Usually it would involve planning a visit to the Waterfront, to buy his family gifts, followed by a pizza lunch and then the much-awaited evening of “pigging out on prawns”. In fact he would often talk about food, huge amounts of food. When faced with a menu in a restaurant he would usually order some man-sized dish such a prawns, only to lose interest in it as soon as it arrived.

In the mornings, by the time he had finished his breakfast, which involved a few teaspoons of cereal with water (milk encouraged the diarrhoea), had swallowed the morning tablets, brushed his teeth and had a bath – 11-year-old Nkosi Johnson would collapse on the bed and sleep for hours until he was woken up for the next round of tablets.

“Phew, that nap was really good,” he would comment, after about four hours of sleep. After lunch, it was the same story. A “quick nap” turned into deep sleep into the late afternoon. Nkosi took his final nap on June 1, 2001, ironically International Children’ s Day, when he died in his sleep.

Before going home that December, he had spoken about his fear of dying, but at the same time it had become clear that the youngster was tired of fighting the disease that was ravaging his small body. He was no longer interested doing many of the things that had kept him going for most of his 12 years.

I still hate myself for arguing with him about a cup of hot chocolate. “I’m going to have some hot chocolate before I go to bed,” he told me one evening.

“No, you’re not Nkosi. You know very well that it will bring on the diarrhoea,” I responded in my parent voice. But he uncharacteristically ignored me and made himself a cup. After he left we found an assortment of pills scattered under his bed. We realised then that he had not been taking all his medication and we knew that this was one of the many signs that he was ready to give up. He was tired.

Now, more than a year after his death we remember the little boy, wise beyond his years. A fighter, a survivor, a practical joker, a politician, a son, a friend and an awkward teenager.

There is no doubt that had he still been alive, he would have been part of World AIDS Day activities. One wonders how he would have viewed developments in our country.

Like Hector Peterson and Baby Tsepang, we can only hope, that like them, his suffering and bravery was not in vain.

Lala Ngoxolo (rest in peace), Xolani Nkosi Johnson. Umzabalazo Usaqhubeka! (the struggle continues)

Author

  • Health-e News

    Health-e News is South Africa's dedicated health news service and home to OurHealth citizen journalism. Follow us on Twitter @HealtheNews