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Dedicated to the life of Malome Mpho
When I was 9, in 2003, I remember being tasked with separating cutlery and crockery ahead of my uncle coming home from the hospital. A few important family discussions were taking place. Plans for updating funeral policies, making sure stokvel contributions were up to date and that relationships with undertakers were a sure thing. There was a seriousness in the air – that was undeniable; a fear of the uncertainties that his presence would bring to our home and lives thereafter. I was a child then so I didn’t understand the details of an HIV-positive diagnosis but there was a certain feeling of preparing for the worst… preparing for his death.
As an older sister and the breadwinner to our household, my mother spent her time over that preparation period and the years following running around looking for remedies for him. Mostly conventional (read Western), and sometimes the more familiar African interventions at the time. The whole operation took a toll on the family – financially, emotionally, and socially. The genuine and unfortunate misinformation about HIV and AIDS in the early 2000s was quite an experience. The awareness, (mis)information, fears, stigma were a lot for my developing mind to process. To be completely honest, this year (2023) is the first time I’ve told anyone in full about my uncle’s diagnosis and my experience living through his illness and improvement, and his decade+ long survival. 20 years later, and this is the first time I felt free to tell my story.
Outside of the stigma and shame I’ve carried about the whole experience, I also felt like it was not my story to tell. It felt wrong, if not treacherous to my uncle and my whole family to speak about it altogether. So, I never did. Not when we were discussing how HIV and AIDS affected us in Life Orientation classes in school; not when I wanted to celebrate his triumphs in getting better and living for as long as he did and certainly not when 1st of December would roll around every year. So “why now?” you may ask. Dreaming up this blog and working towards it has made me feel courageous and vulnerable in ways that have challenged my ideas, experiences and fears. While I will never be able to tell my uncle’s story with as much depth and truth as he could, my experiences were real and those are mine to tell. And the stigma that previously made me feel shame in relation to my uncle’s diagnosis has started to dissipate.
The irony of it all is that I grew with the more-than-common admiration for Nkosi Johnson – who was born with an HIV-positive diagnosis and unfortunately lost his life at the age of 12. But not before he touched many of our hearts and challenged public perception of the disease after an incident of discrimination related to his schooling. For years I engaged the topic of HIV and AIDS academically with peers but never really personally. And given my age at the time, it was also not really a topic addressed with me at home. I was told that Malome (the Sotho word for ‘uncle’) was very sick and that I needed to play my part in making sure that the family was protected from the risk of infection by ensuring that we did not share plates and spoons with him.
As a global society we’ve come so far in our understanding of and interaction with the disease. It saddens me deeply that so many people died and continue to die because of the faults in our communication, access to treatment and care, and shame, amongst other reasons. For my family, though, I am extremely proud of my mother’s efforts and will. She found the strength to move past any inklings of shame in her various attempts to ensure her brother’s wellbeing. Sometimes even having to fight him to ensure that he stays the course. My other aunts and uncle chipped in here and there but given that they didn’t live in the same home as us, I think it is safe to say that she shouldered majority of the weight.
My experience of my uncle and mom’s relationship was very nuanced. There were a lot of things I dismissed or ignored while growing up, in pursuit of my own peace of mind or emotional wellbeing at home. As an adult, I look back and appreciate that some of the awkward, chaotic and concerning exchanges I lived through were multi-layered. The complicated sibling dynamic filled with love, pride, trial and trauma. Perhaps, with all that was happening (the persistent ups and downs, the prayers, the hospice visits, the money piled into potential solutions) I also did not really have the words to relay what was happening around me. A lot of times I wasn’t sure whether we were winning or losing the battle for his life. All things considered; his illnesses were not ever lasting. We won… he won!
My uncle lived for many years, having gone through multiple treatments including the successful administration of the Antiretroviral (ARV) drug, hospital and hospice stays and physiotherapy for his loss of mobility that ended up with his use of crutches. He got opportunities repair his relationships with his children and their mothers, teach me how to cook and to look after my nephew in his first 3 years of life. I am grateful for all the attempted teachings of the struggle songs he sang in his youth, the practical lesson that cinnamon does not belong in meat seasoning, the warnings that my mom would be very upset if she found out I was dating at 16 and so many more things I could share.
At the time of his death, he had been working on a community garden at the Diepkloof Adult Learning Centre. A passion project that he had started up with the greater wishes of starting an NGO and obtaining my free services as an auditor once I graduated and and and. It was honestly an encouraging time – a stark contrast to the future that we had contemplated as a family once upon a time. Malome died of a sudden stroke in December 2015. Another painful experience I found hard to share.
Given that his death was declared of natural causes, I, and by extension, my family did not have to navigate too much of our stigma (real or perceived) that was attached to his diagnosis for so long. In this vein, I guess I was relieved at the time, that his death was not “stifled” by narratives or shame, or questions about his dignity (Serithi in SeSotho). He received a respectable funeral service; my family came together, and my friends were there to show support as the flower-topped casket made its way to his final resting place. While we all maintained the dignity at the time, some of us still maintained the stigma too.
Today, I believe I know better and hence, it is my responsibility to do better. To remove stigma bit by bit from my memories and to cut its ties to my lineage. Hopefully it doesn’t take other another kid affected by a positive HIV/AIDS diagnosis of an uncle, a brother, a mother or a friend 2 decades to navigate it. My hope is that we break free from shame and lead with the love, strength and compassion, and surely that will result in better attempts at life beyond the blood test and its (potentially) life-changing results.
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Thank you for taking this time to read/ listen to the blog.
With loving and supportive contribution from Malebo Letwaba, Mogomotsi Mophosho and Zanele Mophosho.
RESOURCES
For counselling services, free and confidential HIV test and tuberculosis (TB) and sexually transmitted infections (STIs) screening, please visit:
- Right to Care
Alternatively, can send a WhatsApp or ‘please call me’ to 079 851 2490.
- S. President’s Emergency Plan for AIDS Relief (PEPFAR) – provides further links to additional information, resources and support communities/organisations
To get involved in community outreach programs, awareness campaigns and advocacy work, please visit:
- Treatment Action Campaign
DISCLAIMER
Reference to the above sites is for informational purposes and convenience of the public; it does not constitute endorsement by the blog or its contributors.
What a lovely piece! We’ve come so far in terms of HIV awareness & may we continue to make great strides. Trusting and believing your uncle is resting in perfect peace.
Thank you for reading the post and leaving a comment, Amanda! xx