It’s time to break our silence about Aids

2012-05-12 10:56

The first person I knew who died from “a long illness” was Cynthia (not her real name). I was a first-year student at university at the time and I had come home for the winter break.

When I arrived, she was already in a bad way – thin as a bone and ­coughing incessantly. Within a day or two, my grandmother, ­sensing impending doom, ­decided to move her from her ­living quarters into our dining room.

At 80-something, my grandmother had seen many things, but she’d never lived in a time of plague.

In her world, ­people got sick and they got ­better, and a few died before they had reared ­children and lived out their ­biblical ­allotment of three score years and ten.

Whatever was claiming Cynthia’s body, grinding it down to nothing, was something new. And it was ­terrifying.

Because everybody else had to go to work or school during the day, I was assigned the night shift. At night I worried about her dying as I helped her to the toilet – her gait slow and ­laboured.

While ­everyone slept, Cynthia’s body would develop a new sinister ­detail, however slight, as the disease claimed its territory.

The cough, we would later learn, was tuberculosis, but that was not the worst of the trouble. That would come when she developed meningitis and she refused to sleep.

In that state, it was difficult to ­distinguish whether you were ­talking to Cynthia or a malignant spirit slithering inside of her.

During one of those difficult ­negotiations – perhaps we were begging her to eat, I can’t recall – she felt compelled to open up about her life. “I’ve slept with two men,” she said “but love had never been kind.”

She left her first husband after she’d caught him with other ­women several times, and the ­second husband had done the same, she said. They both died of “a long ­illness”.

Cynthia lived on for a few more months before she too died of “a long illness”.

Nobody ever said Aids.

In her 2010 TED talk titled “The ­power of vulnerability”, one of the things social work researcher Dr Brené Brown points out is that, as human beings, we aspire for ­connection.

Underpinning this fear, Dr Brown says, is shame. And shame can easily be understood as an ­unspoken thought that asks: “is there something about me that if other people know it or see it that I won’t be worthy of connection?”

Even in the most vulnerable of circumstances, when we need the strength of others, shame impels us towards silence and denial.

Shame and silence as a response to difficult circumstances can be both personal and national.

Why, for instance, is it never said that someone of high standing in ­public life died of Aids-related complications?

Why is it that the ­preferred language is “died from a long illness”?

By doing so, we ­retreat behind a veil of silence and denial, but more troubling is the implied moral judgment on people living with HIV/Aids.

Even as she lay on her deathbed, Cynthia, seeing herself through the eyes of others, felt a burning compulsion to wash away those associations.

Writer and academic Jonny Steinberg says one of the most ­upsetting aspects of the pandemic is that “it is possible to chatter about Aids incessantly”.

We need to start talking. We need to lay these ­secrets open.

» Kona works for an advertising agency in Cape Town

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