I chanced upon a Barbara Kemigisa post on facebook a few days ago.
It read; “My babies and I displaying our burden of living with HIV. Kourtney nine years 11 tablets, Trevor 17 years 20 tablets, Douglas 22 years three tablets, Barbara 32 years three tablets daily. If you still have a chance and choice to stay safe, please do because it isn’t fun swallowing these pills everyday especially for the kids born with the virus.”
The post would not have made sense, had it not been for the five photographs that accompanied the text.
In there, Kemigisa, 32 alongside her three ‘babies’ were smiling and displaying the multiple ARVs they have to swallow every day.
“Catch us tomorrow answering questions and displaying the pills at the old taxi park,” she wrote.
Indeed the next day, she went to the old park with her babies and talked to passengers, drivers and whoever cared to listen about ‘the burden of living with HIV.’
She has since visited several places – city abattoir, markets to spread the gospel that you can live a normal life even when positive.
After all, she has done so since 2008 when, on an antenatal visit, she was told she was HIV positive. She was 23 and still at campus. She started taking medicine immediately.
“I gave birth but could hardly afford to feed my baby just like the doctors had said. Sometimes I would afford a cup of milk and other times I wouldn’t. If I had to breastfeed alone, I needed enough food to generate enough milk which I also did not have. The only option I had left was mixed feeding which was not advisable and is still not advisable for HIV positive mothers,” she shares her story.
Her daughter, Kourtney, tested HIV positive at six months and began ARVs at eight months.
“I was given a bitter syrup called Keletra which I had to keep in a refrigerator. I didn’t have one and I was advised to buy clay pots and get sand from the beach which I could place the syrup bottle to keep the temperature favourable.”
She contemplated giving up her daughter for adoption at one point, since she did not have a permanent residence then.
“My daily prayer was for a roof over my head and the rest didn’t matter that much. It was hard to think of where you would place your head the next day,” she says.
But she was not going to wallow in self-pity. She had to be strong for her daughter and for herself. This meant she had to religiously take her meds.
“I would swallow my medicine in public places so that I could change people’s perception. Looking at me now, I am sure everyone understands that my message was true,” she says.
Then she realised that she could do something with the several empty pill bottles lying around.
That is when Pill Power Uganda, a community based organisation was born in October 2016.
“Pill Power is a name that I chose to show the importance of ARVs to the lives of positives. I was grateful that they had put my life back on track, but also grateful that I could make a business out of them” she says in a previous interview with youngachieversawards.org.
In the beginning, Kemigisa used to collect empty ARV tins and together with her husband, stitched them together to come up with very artistic, and yet surprising items. Among these were flower vases, baby cribs, baby chimes, dustbins to mention but a few.
Some of the tins she brands and sells as souvenirs to those who are with her in the fight towards ‘zero new HIV infections’.
“The world has seen people living with HIV but have no idea what they go through to live the kind of lives they live.
They have only seen the few that are brave enough to fight the good fight. Those that go on TV and share their stories but have never seen the millions struggling daily to survive especially on these daily pills,” she says.
“The pills have given them the picture that living with HIV is being brave and fighting for life and many committed to try and live responsible given the fact that it is hard to simply let go of sex and the many beautiful women and tempting men around them.”
Pill Power Uganda though is not just about awareness and making of flower vases.
Kemigisa has opened up her home to many people who need support after meeting many young people and children that are ejected by their own families because they are HIV positive.
“Others live in discriminating environments that have made them more frustrated than the HIV virus they have. They are surviving and hoping someone could give them just tiny hope and hold them by the hand. Many feel they are alone in the world because the people who ought to love them have thrown them away,” she says.
However, they do not have beds, enough space or mattresses yet these children would rather stay with her than go back home or be in the cold, she says, adding that the very first time she ended up having four adults and two babies in a single room with two mattresses one borrowed from a neighbour.
With her living arrangement, her babies can ably take their medicine because they all have to swallow and remind and care for each other ‘as we share the little we have’.
“We need a home, beddings, clothes, food and money,” Kemigisa, who gave birth to a healthy son two years ago said.
Although thankful to God who has helped her go through very trying moments, Kemigisa says there are many young girls who still struggle with their babies.
“They lose hope due to uncertainty of whether their babies are infected or not even when they are doing everything right. They need our support and stories of mothers that have gone through similar hardships. Some people are simply taking care of positive babies for their relatives that passed and need someone to be there and keep them emotionally strong.”
“With my two children, I have learnt that every parent needs support regardless of their social status and that is what Pill Power Uganda wishes to do. With your continued support and generosity, we can make more lives worth living and normal.”
Donations can be channeled through email@example.com or +256 701088668.
Do you have a story in your community or an opinion to share with us: Email us at firstname.lastname@example.org