Born with HIV and living life to the fullest: Merilyn Sibanda turns 30. They say life begins at 40 but for Merilyn, her life began the day she fully comprehended what living with HIV meant. She recalls how afraid her family was before her mother died.
Her birthday will not just be a celebration of living for three decades but a milestone of being able to cope with HIV since birth. On November 14 this year, Merilyn Sibanda from New Luveve suburb in Bulawayo will be turning 30.
The two had their own plates, sofas and cups which were never shared with other family members and from an early age Merilyn knew there was something different about them.
At one point they were forced out of the house when she was in Grade One as her maternal grandmother could not stomach that “her daughter had reduced her to a laughing stock in the community by contracting HIV”.
Her dear mother died in 1998, three years before Zimbabwe officially rolled out prevention of mother-to-child transmission (PMTCT) which if available was going to ensure Merilyn was born HIV-free.
By the time she died, the life saving antiretroviral therapy (ART) was readily available to those with money but Merilyn’s mother could not afford the US$155 worth monthly supply to suppress the virus in her body. Zimbabwe detected its first HIV case around the mid-1980s and by then prevalence was estimated to be around 24 per cent.
Today Merilyn is one of the few people who can confidently speak out about their status and how hopeful life is even for those living with the virus. Orphaned at nine, she could have easily fallen prey to stigma and discrimination from her own family but this year marks Merilyn’s 16 years of adherence to ART.
“I had always suspected that something was wrong with my mother from an early age based on how our family treated us. We were living in isolation at home and we could not even bath before everyone else as it was feared we could transmit the disease to them,” she says.
“I was always with my mum. She was one of those first HIV cases who used to feature in documentaries. We used to move from house to house and lived off handouts from neighbours.”
Merilyn adds: “My grandmother also felt disappointed by my mother’s status as it brought shame to the family which made her loathe and stigmatise us in every possible way.” She only learnt about her status in 2004 when she fell sick just after beginning her Form One studies at Inyanda High School.
“I grew up a confused, bitter girl but my turning point was in 2004 when I developed a sore on leg which took more than 11 months to heal. The sore left me with a permanent scar which is a constant reminder of how testing positive to HIV was a life-changing journey for me,” she adds.
“I remember doctors at Mpilo Central Hospital said the leg had to be amputated and as young as I was, I bargained with God and asked Him to see me through the ordeal. I was eventually taken for testing and I still remember the exact counsellor Mr Bhebhe was at pains to explain to me that I was positive.
“Life went on, there was stigma at home, I had my own plate etc. I was not even allowed to touch the water tap and would have a designated 2-litre bottle which I was to use whenever I wanted water.”
Life was hellish for the Form One girl who had to brave ill-treatment from family and juggle studies, lifetime ART and teenagehood crises.
“I drank my tablets until 2014 when I decided to stop because the stigma at home was draining life out of me. Life at school was tough, I was an average pupil but my family did not even bother to come for my consultation days at school because I was a write-off,” says Merilyn.
“It’s only neighbours and total strangers who took time to visit me at school and even when teachers said I was doing well; my own family did not believe anything could come out of a girl who was born with HIV.”
Wiping away tears invoked by the painful memory, Merilyn adds that she was also not allowed to play with other children; be it relatives, visitors or neighbours.
“I was told to hide whenever visitors came so that I do not interact with other people. In 2014 I told myself I did not deserve to live: my parents had succumbed to HIV, I was all alone in a cruel world and there was really nothing to live for,” says Merilyn.
The stigma at home cost her education as she failed to pass any subjects when she sat for her final exams. Merilyn was given a new lease of life when her story was picked by several civic organisations which helped her train as a peer counsellor.
“I defaulted medication in 2014 but some doctors convinced me there was a reason why I had lived so long with the dreaded disease. I am now on line two regimen and I take pride in sharing my story and encouraging young people with similar stories to hang on to life,” she says.
Merylin is positive that one day she will get married and have a child who will live to prove to everyone that living with HIV is no excuse for not enjoying life to its fullest. She is a firm believer in abstinence and knows that one day someone will gladly marry her.
“I had opportunities in life which I let go of and I was finally relieved that at least outsiders could see some potential in me. I have been given food, clothes, love and support by complete strangers whom I believe are Heaven-sent,” says Merilyn
“There is hope in HIV, imagine from the stigma that I went through, I managed to pick myself up. I am 29 years old now almost 30, 16 years on ART and my life will begin at 54 because I can feel that I will live that long.”
“Yes, life will have ups and downs but there is always hope even for us who were born with HIV. I cannot really say I have HIV, no! I have hope that is vital. “When we stigmatise, we force people to shy away from the necessary testing, adherence to medication and even opening up to get help. Let us all be beacons of hope where ever we are.”
She has managed to be a pillar of strength to hundreds of her peers and even has a best friend who found solace in her positivity. Sanele Banda (26) describes Merilyn as a pillar of strength who helped her overcome suicidal thoughts when she too discovered she was born with HIV.
For Sane, life is different as her mother is still alive and has taken an active part to ensure that she accepts her status and adheres to ART which is now free of charge in Zimbabwe.
“I discovered that I was positive at school when I was doing Upper Six. I was passionate about donating blood but after one donation I realised that they had removed my name from the register. I inquired and was told I had to visit the National Blood Services of Zimbabwe,” says Sanele.
“When the counsellor told me I was positive, I became blank. My whole world crumbled at that moment. I stayed for almost three days without eating and decided to stop going to school as it was worthless.”
Sanele had to deal with anger issues against her mother who had always known she was positive but decided to keep it a secret assuming she was too young to comprehend the truth. “I was suicidal at one point and would drink lots of beer, spirits and smoke so that I just die. After a few weeks, I also tried taking my life by cutting veins on my arms with a razor blade.
“It took me time to be able to open up to my mother but we eventually sat down and that is when I discovered four of my family members are also positive,” she says. For Sanele, 8PM is now her family’s favorite time when four family members take their medication while talking about HIV.
“It has become a family tradition and it is easy to make a follow up on each other or ask questions. I always look forward to 8PM. Merilyn also takes her ART at the same time so it is easy for me to keep checking on her as I know that her family is not as supportive as mine,” she says.
The two besties add that life is too short to waste on stigamisting anyone based on their HIV status. They called on communities to deliberately channel their energy towards efforts to address HIV and come up with innovative ways to end the scourge.
Zimbabwe is on course in terms of achieving global 90-90-90 goals which call for HIV testing, access to ART and viral suppression. Experts say despite major milestones made in combatting the disease, stigma could deter Zimbabwe from ending Aids by 2030.
Source – The Chronicle
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