The yoke of shame

It almost took a lifetime for Nolwazi Tusini to shed the HIV/Aids stigma

I first heard about Aids in a magazine. I was nine years old and reading through things that many people thought my mother should not be letting me read.

That article taught me two things: that this disease was scary, dangerous, and that I needed to be careful with my blood.

I will never forget a conversation I had with my mum soon after that. She had asked me if I knew what Aids was and I proceeded to wow her with my knowledge. I was chuffed with myself for having read that article and remembering enough for my mum to be taken by surprise at how much I knew.

Fast-forward a few months and I found myself sitting in a hospital room with my mother, my twin sisters and a decidedly uncomfortable-looking doctor.

I immediately recognised the moment as one of those many awkward situations where my mother was forcing adults to allow me into conversations that they felt I had no business being part of because of my age.

My innate curiosity piqued. I snuggled up to my mother and listened with interest. The doctor was going through my mother’s medical history of the past few months, as if we had not just lived through it.

Eventually losing her patience, my mother interrupted him and told us frankly, clearly: “What he is struggling to say to you is that I have Aids.”

A few simple words and our lives changed. Forever. My mother, my hero, my infallible warrior woman of a mother suddenly became a mere human being.

In addition, an incredibly careless human being on top of that. I mean, I was 10 years old and I had managed to keep my blood safe enough not to get infected.

I was upset with her for getting sick with such a preventable disease, a disease unlike flu that just floated in the air and chose to invade your body uninvited, a disease that she had courted by not being careful enough to not let her blood mix with anyone else’s.

I was suddenly unable to affectionately kiss my mother like before and I became very conscious of every scab, every playground scratch and would give her the proverbial church hug – with my butt sticking out and only our arms connected – every time I had any injury.

Can you imagine that? Having your child who usually is all over you, struggle with touching you? So she organised that I be taken out of school to spend some time in hospital with her. We spent countless hours discussing the HI Virus and how it became full-blown Aids, hours talking about the body’s soldiers in the immune system and even more hours wrapping my 10-year-old brain around what “bodily fluids” really are.

She also spent far too many hours apologising to me for having loved someone so much that the choices she made were now compromising my security. She said she was sorry that not only did I have to lose my mum, but that I also had to watch her die this way.

My mother’s death from Aids was not quick and it was not pretty. I saw her waste away. Every time I would return home from school, it felt like there was even less of her left than before. But she never once allowed her spirit to fade.

My mother may have regretted some of her choices, but she was never ashamed of having Aids. She never lied about it, never cowered from the fact, and I am grateful that she armed me with knowledge and truth so that I remain proud of her today.

Sadly, our family did not feel quite the same way after that. I read the press release about my mother’s death, read the newspaper article with a beautiful photo of my sisters at the funeral, read the magazine article about her and my grandfather’s careers in the media industry, and in all those amazing words written in tribute to her not once was Aids mentioned.

One of the biggest battles and biggest triumphs of her life and not a single mention.

Family members would talk about her protracted illness, everything ranging from pneumonia to TB and every other Aids-related complication she had had in those last months, but I never once heard anyone talk about HIV or Aids. This taught me that, contrary to what my mother broke herself to teach me in that hospital room, this disease that ripped her from my life was a shame that could not be allowed to blight her good name.

I spent years envying friends who had lost their mothers in car accidents, years telling people that my mum had died of cancer, because I figured it was a more “respectable” illness than Aids.

When I lost my father to Aids at age 16, I knew for a fact that no one would believe that both my parents had died from cancer, so I tried TB on a couple of people.

Except by that time, TB was now associated with Aids and I saw the looks, so I soon changed the story and started telling people he had had liver failure from alcohol abuse and killed himself in a car accident.

Again society had taught me that a suicidal and alcoholic father was more “respectable” than one who had contracted Aids.

I consoled myself with our president’s statements that people do not die from Aids. Being the walking HIV/Aids fact-book my mother had created, I knew that technically he was right, because people die from the health complications they get only after Aids obliterates the immune system.

This meant my parents didn’t die of Aids, so technically I wasn’t lying.

I also started getting involved in Aids peer counselling, but didn’t get very far because I found it difficult to answer questions about why I cared enough about the Aids pandemic to want to give up my weekends learning about it and training as a peer counsellor.

In 2009 I lost my sister to Aids. I remember someone asking me as I was packing my life up to go back to Durban to take care of her, if she wasn’t perhaps HIV positive and if we should try to get her on to antiretrovirals. Despite all my knowledge and education about the disease, I still reacted with shame and fear, and proceeded to give that person a piece of my mind about the many reasons my sister could most definitely not have HIV.

Both my sisters were ashamed to tell me when she was still alive that she was HIV positive. That shame ran so deep and so strong that neither of them, smart women who had lost their mother to this disease, could bring themselves to get her on antiretrovirals until it was far too late.

So in 2009, my sister needlessly died from Aids. It was difficult to answer questions about how she had passed on because it had become increasingly difficult to pretend that HIV/Aids was a theory to me, increasingly difficult to keep denying that this disease had irrevocably changed the course of my life.

I can no longer carry the burden of a shame that should not exist. I can no longer be silent in lieu of protecting myself and my family, and our legacy.

I can no longer pretend that I am not one of the many faces of HIV/Aids, either through infection or affection. I no longer want to agonise about whether or not someone – my sister – would not have been infected or affected by Aids if I had been brave enough to believe my mother’s final lesson to me: to be brave enough to speak loudly and honestly about my experience with this disease.

I am a little afraid of the possible backlash of writing this then disseminating it, but it is estimated that millions of people are living with HIV and that thousands have died from Aids this year alone. Although this is probably much less than in 1998 when my mum died, it is still far, far too many in light of the advances in medicine since then.

My father, Sicelo Hlatshwayo, a beautiful man with art in his veins and music in his soul, an amazing man whom I loved very much, did not die of TB or liver failure or suicide or any other story I have ever told. He died as a direct result of Aids.

My exquisite, smart and talented sister, who taught me about grace, who loved and understood me so profoundly that I struggle to articulate it, also died as a direct result of HIV/Aids.

My warrior woman mother, who bred in me a fearless and unconditional love, who lived in truth and with integrity, who delighted her fans on TV screens across the country, who was fondly known as “Babazile”, whose name is Beryl Tusini, who was not ashamed, also died from Aids – nothing else.

I hope I am doing her legacy some justice by telling this story. I hope I am becoming my mother’s daughter. I hope I am healing and finally shedding my HIV/Aids shame.

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