THE way we treat those living with HIV has changed – but in many ways it is exactly the same. And this, said long-term Aids survivor Musa Njoko – first diagnosed in 1994 – was what we needed to work on changing.
Njoko has written a musical – In My Own Voice– which will be staged at the Playhouse Opera theatre as the city hosts the International Aids Conference.
The production will chronicle her challenges of living with and surviving HIV/Aids for 22 years.
“It was a devastating time then. I felt hopeless because everyone, including my doctors, was telling me that I was going to die, that I would not see Christmas of that year.”
She has created a musical theatre production with original live music, which tells her unique and universal story of courage, hope, victory and celebration.
Directed by Edmund Mhlongo and choreographed by Delani Makaye and Thami Njoko, it features a cast of 16 performers with a five-piece band under the musical direction of Wanda Kwela.
The musical seeks to give expression to the faith that sustained her through her darkest times of feeling abandoned by those around her, as she struggled to come to terms with her perilously deteriorating health during the early days of the Aids pandemic.
She was even expelled from her church but, despite this, remained faithful to God.
“My relationship with God kept me going. I believed in the scriptures and miracles.”
She also described her mother as an “angel” during that time.
“I disclosed my status to her and she said: ‘I don’t understand this thing, but I do know that you were my child before this and you are still my child’.”
But others, like the man who infected her, treated her with contempt.
“I think he knew his status from his reaction when I told him about my status. He called me a slut.”
She added: “We live in a world dominated by fear, mistrust and societal fragmentation, where our families are damaged by the hurt of abandonment, unkindness and cruelty.
"We need to build and nurture a conducive environment in which we can all share our past with each other, and heal our hurt through communicating truthfully and learning to understand each other, and by learning to love each other.”
In recent times, she said, the complacency of young people troubled her.
“They are extremely casual: they don’t use protection or adhere to their ARV treatment.
"Awareness and education has improved, but our biggest challenge at that time was behavioural change and this continues to be the case.”
She said that a more latent form of stigma existed, much like racism on the part of a few camps in the country.
“It’s just changed the way its presented itself, but it’s still there. People are still afraid to demand condom use because they are afraid that they will be accused of carrying the virus.”
HIV, she said, was a manageable condition.
And what is her advice to those recently diagnosed positive? “Life can still be lived to its fullest, but it might change a bit from what you envisioned.
"Nevertheless, you can still have a good one. Eat properly, follow your treatment and look after your spiritual and emotional well-being.”
The activist and artist is also a key roleplayer in "South African Voices: Towards a Museum of HIV Memory and Learning", the Aids educational project at Durban’s KwaMuhle Museum, which documents a critical and defining chapter in our collective history in South Africa, offering people space to celebrate the achievements, and reflect on the journey we have taken since the dark days of denialism and calls to “Break the Silence” at AIDS 2000.