Between Now and a Cure
Not one single day goes by that I do not think about a cure for Type 1 diabetes. I drift off into daydreams, playing what-if games, but I quickly snap back into reality because I live in a world that I call “between-now-and-a-cure,” my in-between-world. This is a world where even if a cure is discovered today it would be another 30 years before it reached my doorstep. I live in a country where people cannot afford insulin, so how will they possibly ever afford a cure when it comes? As harsh as this reality is, it is my reality. And while it doesn’t stop me from praying for a cure, my day-to-day life does not allow me the luxury of binge-dreaming.
My journey started in 1998 on November 25, the day I was born into a family that made up what it lacked in financial means with love. I joined my then 1-year-old sister Noella. A few years later my youngest sister Eunice joined the two of us and a mother and a father who were devoted to us with a fearless determination to give us the life they never had.
Education had always been very important for my parents, who both have university degree certificates, but they were simply unable to find commensurate employment opportunities. My father for most of my life has worked in transportation, most recently as a motorcycle taxi (commonly known as boda-boda) driver. My mother, a trader at times and a housewife at others, gathered enough to keep my sisters and I in school.
I grew up in Busabala, a suburb of Uganda’s capital, Kampala tucked into its seven hills with houses so close to each other your neighbor is as good as your house mate. It was from this home my 8-year-old-self battled with incomprehensible symptoms for several months before finally getting the diagnosis of Type 1 diabetes.
On the evening of September 10, 2009, the streets of Kampala were ablaze with political protests, and a “boda-boda” was weaving through the jam-packed traffic. My father was hauling me, his comatose son, to find urgent medical care. The closest medical facility was 3 miles away where it took at four days of checking me for malaria, sickle cells, HIV, almost anything and everything, before they pinpointed my diagnosis to diabetes. I then lay in a coma for the next week, being given oral medications, which were having zero effect on me. My parents felt hopeless and decided to move me to Nsambya, one of Uganda’s missionary hospitals where the diagnosis was confirmed and instead of oral medication, I was given insulin injections which saved my life. I stayed in the hospital for several weeks before I was able to return home.
In the two months I was away, life for me and my family was turned on its head. My parents had aged what seemed to be 100 years. My mother had to find consistent work as a trader in Owino market, the city’s largest market, where you can find anything from traditional medicine to high-tech devices. My hospital bill had shaken both my parents and this new order had to be established to keep the family afloat.
In a good month, my father earned 300,000 shillings, the equivalent of 80 USD, from his boda-boda taxi, and this was only a small fraction of the massive medical bill. Life changed drastically. School lay in the balance for me, as funds had to be rerouted to my new diagnosis that annually imposes at least $600 on basic supplies, at least 80% of my entire family income. I was in and out of school, some semesters I was able to attend and others I sat out as my parents tried to find how to pay for the school fees. Not only was I struggling medically and financially, but the disease was unknown to many and I was being teased to no end. My neighborhood posse had dissipated, claiming I had been possessed by demons, so life was hell at that time. After writing my o-level examinations, I stopped going to school.
I started working with my mother at Owino Market when I could, and together my mother and I were determined to learn everything we could about Type 1 diabetes to normalize my life, and we did. I survived a surgery on my upper thigh and a few other curve balls that came our way. In May, my father had an accident on his boda-boda and is currently unemployed. My mother is also unemployed so our subsistence is by the grace of God, but we will survive. The disposition of my family is perennial optimism and hope.
I am now studying to be a chef, which brings its own financial challenges, but I am committed to stay on course. It may take me 10 years, but I will get there. I heard about Chef Sam Talbot who fast became my idol because he, like me, has Type 1 diabetes and he, like me, loves the kitchen. I have renewed inspiration, as I am now an ambassador and counselor for the Sonia Nabeta Foundation raising awareness for Type 1 in Uganda. I have made Type 1 friends and I am teaching them about our reality. I will always be praying for a cure, but I am fighting for access to our life supplies as my primary focus. Despite my hardships, my life is mighty bright and I am comfortable in my in-between world. However long it takes to get to me, I want to live to see that day when a cure is discovered, but between now and then, I will master the art of fighting for life and for the basic medical supplies that keep me alive.
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