My Story
From living with, to thriving despite, HIV: It took deep digging in. Reaching out to the ‘I’.
“How am I going to support my mother when I am dying, I should have as well been promiscuous maybe I would have had a child by now “. These were my own words, conflating what could be with what was not, what could have been with a deep desire I did not know I had – having a child. All this because I had tested HIV positive in a pre-employment HIV test and told “you have AIDS and will be dying in three months, go and pray”. It is now three decades later. My initial reaction to my February 1991 HIV positive test results were a rollercoaster of emotions of shock, anger, fear, guilt, denial, and depression, in no particular order. One feeling would entangle me whilst I was still reeling from the other. Regret, regret, regret: Why did I not go to Fort Hare University, which had already accepted my application and a bursary secured. Why did I go to Joburg instead? Why did I sleep with that one? Why me and not that one? I even knew perfect candidates for HIV/AIDS, certainly not me. Why this, why that? What a great disempowering and incapacitating pity-party I had! It was bleak. It was pain through pain. Self-condemnation enveloped me with feelings of utter uselessness and unworthiness. Making all this worse was the euphoria around me on the imminent black people’s freedom as exiles were returning home and negotiations for democracy were taking place. Even the birds were not chirping as is normal but were laughing at me – so I thought. Now I know that even in the absence of that euphoria there still would have been the thicket of clouds all around me with no skies that were, though.
When I lost my father at the tender age of 13, leaving behind seven kids to be raised by a domestic widow, I developed a sense of insufficiency and of hollowness. I witnessed, and participated, in waywardness in my home and community. My elder siblings dropped out of school, and I followed suit, albeit temporarily. When our home was grabbed by the oppressive Bantustan municipality on the grounds that my mother refused to be a member of Ciskei National Independent Party. Firstly, there was nothing about this party being National, this was a Bantustan occupying what equals to today’s two districts of South Africa. It was created by the oppressive white-only regime. Secondly there was nothing independent about this party because it was a creation of the apartheid regime and was answerable only to it. And so, we had to be compressed in a single room shack. That is how efficient the apartheid regime was in mobilizing us for the liberation movements.
When one of my younger sisters was raped by a friend of our family at a tender age of 15, part of me was raped too. I was torn deep inside. This ‘friend’ asked to go with her to town to buy us groceries – did I tell you we were poor? We were so poor that even other poor people called us poor. We were so poor that even today I can still feel the texture of poverty. The idea of our ‘friend’ buying us food excited us to the exclusion of any questioning of ‘why go with my sister’ or only with her although driving a sedan car that can seat more than two people. I remember that day. She had just taken a bath and was wearing a floral sleeveless dress. I remember how beautiful she was. My excitement was short-lived because three hour later my sister was back. I saw our ‘friend’ first and noticed that he was wearing a strange face of a mixture of anxiety and fear combined. He looked jittery. My sister, stepping out of his car only to crumble on her side unable to walk. As I rushed to her assistance the ‘friend’ sped off. The door closed itself, missing her by an inch. On picking her up, I realized she must have been crying for a long time. Her hugging and clinging on to me told me she was extremely relieved. When finally, we tried taking steps to the house which was a shack still, I noticed she was bleeding from under. I lifted her up. If you have ever seen the 1976 June 16 poster of a guy lifting the first victim of the Soweto uprising. The ‘friend’ has since died. I never shed one tear. I do not think my sister ever healed from that gruesome incident. Although she later made a great account of her life – she later became a high school teacher, had a child who now is a fine gentleman in
his late 20’s, and built herself a home. My beloved little sister later died in Nigeria in 2014 when a church building collapsed on worshippers. I shed many tears, still do to this day. I had taken her to the airport. She was wearing a long white pretty dress and she was – as just before the gruesome rape by our ‘friend’ – very beautiful. We were holding hands as we walked around the terminal building and people marveled at us with ‘you guys look great’, ‘you guys look alike’ and I enjoyed every moment of it. The circumstances around which that building in Nigeria collapsed combined with a missed call I had from her and her good- bye text to her only son only minutes before the building crumbled down on people with my beautiful fragile sister inside it led me to wonder if people ever recover from rape.
I outline the above events to make the point that testing HIV positive is not only because of not listening, being careless, promiscuous, or defiant of no sex before marriage holier than thou “rule”, at least mine was not. Multiple layers of unresolved issues can lead to risky behavior. The simultaneous occurrences of traumatizing events and their cumulative effects, including racism, gender oppression, poverty, in one’s life provides a great recipe for failure-to-show-up in life. As if that was not enough. At one time scores of people marched in protest to my home with shouts of ‘Thanduxolo is dying of AIDS and therefore is not fit to be leader’. This was a time of campaigns and contestations for leadership in our community. I had not expected, nor prepared, for such personal attacks. I had only told one other ‘friend’ about my HIV positive status at that point. That sent me back into isolation, oblivion, and a dark hole. But GRACE located me.
Out of this callous protest march a light-bulb moment occurred to me. I realized how each and every human being is in a dark hole, and keep on digging themselves deeper and deeper by not talking about the dark hole they are in. Knowing that helped me to understand life with HIV. When women don’t get married but desire to, they tend to condemn themselves. When couples can’t have children, they blame themselves and each other. Once people sink deep into dept they choose to condemn themselves. They miscarry, they condemn themselves. They don’t have food, they condemn themselves. They are dumped by a partner, they condemn themselves. They have a sexually transmitted infection, they condemn themselves. They lose a job – self-condemnation. They have cancer, they blame themselves. Resultantly, people fail to show-up in life because of self-condemnation. In other words, they die whilst alive. ‘Cowards die many times before their death, the valiant never tastes of death but once’, (W. Shakespeare). Unfortunately for people living with HIV, they die both deaths – do not show-up-in-life and die physically, prematurely. Many friends and beloved relatives we buried.
So, as I got to know what social stigma can do, I also realized how social stigma can immediately transform itself into an internalized stigma (self-condemnation). Research is full of evidence of how wounds and afflictions in both individuals and communities produce, and are re-produced, by a socially compromised ability to protect oneself from harm. Such wounds and afflictions are more likely to occur among people who are already vulnerable by virtue of their race, class, gender, and the intersectionality of these social ills.
I then chose a road less travelled. I talked about my HIV positive status, thus giving a license to all who wanted to talk about me to do so without me getting hurt in the process. It is a human frailty for people to aggrandize themselves by deflecting others’ attention to a known socially
stigmatized one. I started support groups of people living with HIV and taught about these human behaviors and fragilities, incorporating that to basic facts about HIV/AIDS and human rights. I went from health facility to the next asking for permission to speak to people who had just been diagnosed with HIV. Support groups numbers soared and my work soon found resonance with a newly formed National association of people living with HIV who recruited me to do what I was already doing – only now for a salary. That ushered me into national and global advocacy for pro- poor legislations, policies, and practices. Never had I imagined that affliction could become a way, the way.
Upon recognizing that I also quickly realized that: Wait a minute, I am the governor of my life, husbanding it through and through. My life is all that revolves around me, and I around it. From the rising of the sun to the going down of the same and all that goes on in between – my thoughts, my utterances my actions and interactions, whether prompted or initiated. My responses and reactions. All these, form my life, my space, my world. With the benefit of both hindsight and foresight, I dare say: I have enough capacity and determination to be in control of my life. Everything and everyone outside of me (HIV/AIDS included) has as much power over me as I give it to them. It is I who give the final instruction for me to feel and to act, or not to. I am powerful. Something inside of me is very strong, significant, and therefore important to be obeyed. ‘I’ is something bigger than meets the eye. ‘I’ is bigger, much bigger than what I can imagine of myself. ‘I’ am a determiner of who I become and how I do so. To become – both in reaction and also in planned ‘becoming’. In becoming – both in a fleeting reaction and in a planned and sequenced becoming process. I am never finished, I am never done. I am a continuance. I don’t end. ‘I’ operates far above principalities, rulers and wickedness of this dark world.
When, 33 years ago, I was told I am HIV positive, I now know that it was not I that is HIV positive but my body. And I am in charge of my body. When, 25 years ago I was initiated on ARV’s (HIV treatment) it was not I that was initiated and continue to take treatment but my body. I give treatment to my body so that the body can be in a position to take instructions from the ‘I’. ‘I’ do not thirst nor hunger and therefore I do not get sick. I am not suggesting that drinking and/or eating renders one sick as abstinence from these also renders the body sick. It is my body that thirsts and hungers and sickens, or not thirst nor hunger and still – sickens. That tells you that ‘I’ never die. Since, ‘I’ never die, ‘I’ is able to preserve and sustain my body with its cells, organs, members, systems and all until ‘I’ decides otherwise or be defied by my body. ‘I’ must either be a humongous singular or a multiple being. For ‘I’ can even channel thoughts back in time and forth into an unknown future and yet remain in the here and now. Shaping, arranging, and rearranging, organizing, and disorganizing to fit into a future relatively perfectly – if only according to His will. ‘I’ does not lack, because ‘I’ has no needs. ‘I’ is plenteous. ‘I’ does not toil, doesn’t have to. But ‘I’, provides, cares, gives, sustains both my body and those ‘I’ loves. ‘I’ is at REST.
I am an overly reflective person, am I not? I consider myself a student of life. I love observing human interaction. I love listening and reasoning. I am learned and unlearned because I carry a filter with me everywhere I go – school, church, work and everywhere, to take what fits with me and discard what doesn’t. This is because we all know only in part. Even the combined knowledge of all human beings is only in part. So, I learn and unlearn.
I am full of love, kind and gentle, at peace with myself and the world. I am humble and thereby disarm foes. When 33 years ago I was told I was HIV positive, I was also told I would die in three months. I said I
will come visit you in three years’ time just to show you I have not died. I triumphed over poverty, torture (racial superiority BS), youthful lust, HIV, Covid-19, and now thrives. I am content with where I am in life albeit without troubles but continue to shape my future. I am healthy and strong with a sound mind. Academically speaking I do have a degree in psychology, an honors degree in behavioral change communication, a master’s degree in Sociology and have formally begun my PhD research. Education is a proven determinant of a better life and educated I am ‘shem’. My late father would have been proud of me. My late sister was. My Mother and siblings are. My wife and kids are. Sports wise I have run four Comrades Marathons and several marathons and half marathons. I am a martial arts technician with a Ni- Dan (Second black belt). Those who do sports know that it takes deep digging to break through every barrier and reach for the next level. Those who have ever been humiliated, like I have been, know it takes deep digging to forgive and forgive we must if we are to reach the next level – thrive. There is always a next level. But, I count all my accomplishments nothing compared to the GRACE of God in my life.
Prompting me to write this about myself is a recent meeting of some South Africans maturing with HIV (over 50 years old) wherein we discussed the conspicuous absence or very limited availability of self- written accounts of ourselves as a contribution to and responses to social research. “The dominant conventional ways of generating knowledge that privileges ‘objectivity,’ ‘researcher neutrality’, and ‘stable meanings’—meanings that allegedly exist ‘independently of culture, social context and researcher activity and interpretation” (Adams T.E 2015)”, should be supplemented by our own narrative research and writing as PLHIV. Writings whose aim is to offer tales of our personal, social, and cultural lives that are compelling, striking, and evocative. Stories of, and by, people living with HIV that show or bring forth strong images, memories, or feelings, writings about us in contact with others to shine a spotlight on the many layers of human, social, emotional, theoretical, political, and cultural praxis.
There is a glaring need in the HIV/AIDS space to encourage the development of self-written personal stories by PLHIV as this will help researchers achieve an understanding of our lives and our circumstances, not just through studying others but also through deep reflection of the self as a social person. In other words, self-written personal stories that invoke and use the discovery available in the writing process, using writing as a research practice that drives inquiry rather than as a “mopping up” activity after research is conducted (Poulos C.N. 2018). Letting others write about us is giving them permission to distort our lived experiences and renders us no passive participants to the misfitting policies, non-responsive same old programmes, and skewed resource allocations that we are witnessing. We owe it to ourselves as we step into the age of Non-Communicable Diseases (NCD’s). We owe it to the many who died of AIDS related opportunistic infections. We owe it to the generation of children who were born with HIV and are facing serious yet misunderstood constraints regarding access to, and being retained in, care and treatment due to a rigid health care system. Let us inspire them to dig deeper into, and reach for, their ‘I’ who can do exceedingly, abundantly and above all their imaginations.
I am Thanduxolo DORO and the leader in this space.
