They say life is a journey and it is never complete until you reach your destination, and no matter how it twists and turns: you past lead to your future. And this is my journey.
I am Luckyboy Mkhondwane, I was born on the 28th of January 1976 in a small township called Duduza in the east of Johannesburg. I am the oldest of three children and live with my mother, brother, sister and nephew. From an early age I was fascinated with books and reading played great part of my childhood that I only had a few friends as most of my time was spent indoors with my nose stuck in a book, reading is like breathing to me. I also love music, writing (hopefully my journals will become a published book one day), surfing the net, leaning new languages, shopping and going out with friends. I work for Treatment Action Campaign as the Ekurhuleni District Prevention and Treatment Literacy Coordinator, In 2008 was part of the Siyayinqoba Beat It studio support group and one the Hope’s Voice: Does HIV Look Like Me campaign’s South African ambassadors (this is an HIV awareness campaign aimed at the youth and portrays the lives and stories of young people living with HIV on the website www.doeshivlooklikeme.org)
Growing up I always dreamed of being a leader in my community, someone who could make a positive impact in the lives of people around me and make a difference. That chapter of my life started on the 13th of June 2002: the day I was diagnosed with HIV. I had my first sexual relationship at the age of 20 and the relationship lasted for two years. Of all the things that have happened to me, those two years were the best years of my life. It felt good to be loved, I was faithful to my partner and we never ever used condoms when having sex, the reason being that I never thought HIV could happen to me because I was a good kid in a monogamous relationship. Little did I know that my very first experience of love would change my life forever.
A few months after the relationship ended, my former partner disclosed publicly that he has been living with HIV for the past five years, which came as a major shock to me as I thought of the possibility that I might be infected. Even though I knew how highly this was possible, I decided to go to a local clinic for an HIV test. I felt it was better for me to know my HIV status now while I was still healthy than to wait until I got sick and my fears were confirmed. The test came back positive. The funny thing is I accepted my status there and then and decided to make the best of the situation by educating myself on the virus that is in my body and start living my life fully, because I knew that the possibility of death was more real to me than ever before. I joined a support group, did a counselling course and started volunteering at a local clinic as a VCT counsellor in order to deal with my situation and also helping others in the same predicament.
Disclosing my status is something I knew that I wanted to do but I felt I was not yet ready to talk about it openly. That did not stop me from telling my brother and a best friend who swore that they would keep my secret. My brother kept his word but my friend could not because before the end of that week most of the people in my circle knew that I was infected and started distancing themselves from me. This is when I decided to face my greatest fear at the time and come out about my status to my parents, because I did not want them to hear it from someone other than me. To my surprise they promised to give me all the support and care they could, and I was so relieved that I gained strength to talk openly about my status during health talk in the clinic. I joined Treatment Action Campaign later that year because I believed if I did nothing to fight for my right to access of treatment no one was going to do it for me. I ended up being part of the organization’s Treatment Literacy Team and started doing presentations and education on HIV and other health and human rights related issues. Thus began another chapter of my life.
In 2005 while still working at the clinic, I was diagnosed with TB and Micro-bacterium Avium complex (a stage four opportunistic infection), and with a CD4 count of 193 I had to start taking ARVs. I was put on regimen 1a which consists of Stavudine, Lamivudine and Efavirenz. It was a very challenging time for me because I had to take treatment for TB and MAC for two years while also on ARVs. Like most people I experienced side effects – I had nausea, vomiting, dizziness, tingling in my feet and most of all insomnia. I knew that these side effects will go away with the passing of time and continued taking my treatment as prescribed.
A few years after I started ARVs I noticed changes in my body. I have always been small in build I noticed loss of fat in my upper arms and buttocks and my tummy started growing. I was alarmed and reported this to the doctor at the clinic and he told me it was because of one of the drugs that I am taking, Stavudine. The challenge was he could not change me to AZT because I am anaemic and AZT can also cause anaemia as a side effect. He reassured me that the change in my body was not fatal but it was something I had to learn to live with. I consoled myself by saying I’d rather look odd and be alive than be a good looking corpse.
After five years on the same treatment regimen my CD4 count is now 686 and it’s the first time that it has been above 400. After a consultation with my doctor, he suggested that I be switched from the regimen I initially started on which was Stavudine, Lamivudine and Efavirenz to a regimen consisting of Efavirenz and Truvada which is a fixed dose combination of Tenofovir and FTC in order to try and reverse the loss of fat caused by Stavudine. I am doing well on this new regimen and it’s much easier to take because I only take my pills once a day. I am seeing some change in my body and I hope eventually I will regain the fat that I have lost in my upper arms and behind, with the accumulation of fat on my stomach being reduced.
In the seven years since my diagnosis, I have grown from a shy young man who always had his nose a book to a strong person who is vocal about human right and is striving for equality and access to quality health care. I am on my way to being the community leader I have always dreamed I would be. I have leaned to turn the acronym A.I.D.S into a question; Am I Doing Something? I believe life doesn’t end with HIV and my motto in life is now Get Busy Living or Get Busy Dying. Even though living with HIV can be quite a challenge, at the end of the day you are the one who decides to keep on living, never giving up is the best gift that one can give to him or herself.
My journey has not ended yet, but gets even more interesting every single day and I strive to live my best life, make a difference in my community, and inspire other people who are living with HIV or any chronic condition. When HIV came into my life it did not become an end, but it became one of the obstacles I had to experience and overcome in this journey called life.