Updated: Jul 13, 2020
| This is the 62nd story of Our Life Logs |
I proudly held back tears from falling off my cheeks. Nothing has ever felt overwhelmingly good. I could not stop waving at the cheering crowd, because as the captain of the Lumumba Stigma Association football team, the acknowledgement was partly to my great leadership.
Things have not always been rosy for me. I was bullied during my childhood due to my constant illness, and I harbored a bitterness towards my circumstances and those who taunted me. When my mother revealed the true nature of my condition, I had to shake the dust from my feet before I could live with a positive spirit.
I was born in 1998, in Kenya. I had two half-sisters from my mother’s previous marriage. When my mother’s late husband died, she was inherited by a relative in his family, as is the custom in our culture. I came into the world as a result of the inheritance. It was not before long when our family was forced to split up. Driven by poverty, my mother had no way to fend for three children on her own. My older sisters were forced to live with different relatives. While my constant illness and fatigue caused me pain early in life, I consider myself lucky. This circumstance allowed me to continue living with my mother.
I was a sickly child from the age of two. I constantly had boils and bleeding gums. There was barely any place on my skin that didn’t cause me pain. For a while, it seemed like I would never get relief from my constant ailment. The only joy my mother had in me, I reasoned, was my outspokenness and positive attitude to life. I was a fun-loving child and talked like a radio on limitless charge.
I was just three years old when my mother remarried. My mother and I traveled to live with my new stepfather and his children in the Kibera slums of Nairobi city. However, my mother felt that my step-siblings needed the presence of an adult to nurture them and give them a sense of direction, away from the city. My mother, my six older step-siblings, and I moved back to the countryside while my stepfather remained in the city to work.
At the countryside, I lived a typical life. Playing with the village boys, collecting firewood after school, and washing dishes after dinner. Despite my physical illness, I was a normal boy. However, my step-family seemed to make me feel like an outsider. They would loudly comment on the difference of my appearance and made me feel like I did not belong. I did not know what made me so different from them. I did not deserve their insults and felt very insecure when I was home.
As I grew older, I joined school but was absent a lot due to constant visits to the doctor’s office. In 2008, at the age of 10, I started accompanying my mother to her hospital appointments. She had been infected with HIV/AIDS earlier and had enrolled into anti-retroviral drugs therapy. I liked going with her. While she was seeing the doctor, I would play, and the other staff would give me candy while I waited. Each time my mother returned to the waiting room, she would give me medicine. My mother said the pills I took were for TB and would sort my frail body. I always took what she gave me. I am not afraid of oral medication, as a matter of fact, I’d rather swallow them than endure the pricking of a needle.
After numerous appointments, I started feeling much better. Before these visits, bouts of malaria, rough scaly skin, and pneumonia were part of my everyday life. Now I could attend more classes than before and generally felt healthier. My constant headache and exhaustion minimized. But I had to take this medicine daily, without forgetting lest my symptoms would come back. It was difficult to visit relatives for long periods of time, and I felt as if I were chained to the pills.
I was getting tired of taking medicine like it were food. Though I didn’t fret at the sight of pills, I had occasionally skipped them, knowing full well that this could lead to a severe bout of ailments as well as viral load increase. Finally, in 2009, my mother gathered enough courage to explain why I needed to consistently take my regimen of medication. If I was to get better and choose to take the medicine voluntarily, she had to come clean.
“You know you will have to take these medicines all your life,” she said in the softest way she could.
I countered. “Kwani nina Ukimwi?’’ (Why should I, do I have AIDS?)
“Actually, you do.’’
I became bitter with my stepfather. He had been wayward for the better part of his life, and naturally, I presumed he was the carrier. I felt robbed, cheated, and angry that I had been treated unfairly by the children of my stepfather—the man who had given me this struggle. It took several months after that revelation that my mother noticed my apparent hostility towards my stepdad. She sat me down for a talk.
“Your stepdad had little to do with your status. Before you were born, I was married to another man. When he died, it was culturally expected that I get inherited. Your biological father inherited me. To say the least, he was never a straight man,’’ she calmly said. “I am 100% sure I got the disease from him and infected you. I did not know it then, otherwise, I would have sought medical help to ensure you were not infected.’’
I felt as if a weight was taken off my shoulder. Even though I still took my medication in secret, I no longer felt bitter about my situation. Perhaps it was because my biological father, the inheritor, was already six feet under. “Good riddance to him,” I had muttered.
Now I had to constantly take the medicine in hiding to avoid being stigmatized and being singled out. I had become withdrawn and depressed.
I decided from that point to take my medicine religiously, knowing my life depended on it. After completing my eighth-grade exam in 2012, my sister took me to live with her in Nairobi city. I felt free to be myself than when I was around her and took my medication without a problem. She was understanding and supportive of me. She’d remind me to take my tabs and I improved on my overall health. She only requested that I never stop taking the medicine.
I lived positively throughout high school and kept my promise to my sister, though it was more for me. She has been instrumental to my education, and when it was time to join college, she helped me enroll at a new station where I currently go for monitoring. Lumumba Hospital is specialized in people living with HIV/AIDS. When I was enrolled, I was given doses of medication as well as snacks and other meal packs to build my body weight and muscle. It felt like a responsibility at a point, but now I realize that they this has been the best thing that has ever happened to my health.
I have kept all appointments they have scheduled me for the last year. This allowed them to review how well I was responding to my drug therapy. I have attended discussion forums, games, and medical appointments. I have complied so much that they gave me an honor of an OTZ badge (Operation Triple Zero). This simply means zero viral load, zero missed appointment, and zero missed drugs.
I have grown to enjoy my visits to the health center. The Lumumba Hospital has a games program to engage young people on the journey to self-acceptance and commitment to medication, and I have been chosen to be the games captain. I hope to get a chance to intern at the facility later in August for my information studies and record management course. If possible, it will be an honor to start my working career there.
One step at a time they say, I feel proud of my achievements so far. I, however, cannot take for granted the support system that I have had so far. If we can offer them a comprehensive support system and monitoring, we can achieve what I call “Heroes for Zeros and Zeroes for Heroes”. Basically, it takes a hero to record zero infection and a Zero status individual to rise from the ashes and became a hero. My major desire is to be a bridge to many young people who still struggle with acceptance and stigma.
This is the story of Patrick Ouma
Patrick was born in 1998 with HIV/AIDS, an illness with a stigma still rife in the county. Patrick was downtrodden when he first learned that he had acquired this taboo but was determined to stay healthy. Patrick joined support groups through a local hospital and has excelled in his efforts to create a sense of perseverance and hope among members of his affected community. He wishes to not only help other young people living with AIDS beat the stigma, but also see them shine in whatever they aspire to do.
This story first touched our hearts on April 13, 2018.
| Writer: Opondo Maureen | Editors: Kristen Petronio; Colleen Walker|