Growing up with childhood illness in communities plagued by poverty and crime can be a set-up for failure.
I'm a 32 year old young woman living in Bonteheuwel, a Cape Flats township in South Africa. I want to inspire and motivate affected peoples, with a resilient approach to life's challenges, by sharing my story. I want to do this by publishing a poetry and picture book. This collection of poetry I've written over the years and photographs inspired by it, is titled 'Resilience: Werk toe, kerk toe, huis toe.'
The cost of publishing is too much to entertain when I consider my medical expenses. I spend about R3000 on a monthly basis. R2200 on medical aid and R600 on transport to get to and from dialysis treatment. I need dialysis three times a week which takes about six hours out of my daily routine. There is hardly any time to rest if one considers the rat race; the need to make an income. My survival budget is no less than R6000 a month. I'm unable to hold on to full-time employment so I freelance as a journalist and artist. I work in a very competitive industry. I need the flexibility for my treatment time and the sometimes unpredictable recovery time. Dialysis treatment can leave one feeling drained and tired. The inevitable consequence of End-Stage Kidney Disease (ESKD) is anaemia, which means fighting fatigue is a constant battle for me. I operate on adrenalin most of the time; inspired by the victories in my life and my passion for storytelling.
I was diagnosed with kidney failure when I was only five years old. Twenty-four years later, I've had four kidney transplants. In 2014 the fourth one rejected my body and I was diagnosed with ESKD. What this effectively meant was immediate dialysis treatment or I would die. But the state hospital would not provide me this life-saving treatment because I did not qualify to be on the transplant list. I had acquired tissue damage making a new kidney transplant extra risky; a risk the state was not willing to take. Which basically means I needed dialysis for the rest of my life and the state dialysis policy doesn’t provide for funding dialysis patients treatment indefinitely.
The alternative was getting dialysis in the private sector but I did not have medical aid. It was a miracle when a the charity, Sultan Bahu Centre came to my rescue. They assist people who have only recently joined a medical aid because the 12 months waiting period doesn't provide cover for dialysis. Sultan Bahu Centre then pays the person's dialysis for the first 12 months. This was how I ended up on dialysis. My life has never been the same. While I am grateful for the life-saving financial support, my life has become a constant hustle.
For the first year of dialysis I was unemployed. I began working part-time in 2016 but by this time I had lost so much confidence I needed to be up-skilled again. So I only began working full-time earlier this year. This proved to be quite disastrous. Although I had gathered enough confidence to reintegrate into the workplace, I could not adjust to the fast pace. Constantly exhausted and accumulating all kinds of ailments as a result just perpetuated the whole problem. Staying out of work means losing money. So now I try pace myself by freelancing because at least I have some sort of flexibility and control of my work hours. The main challenge is actually finding enough gigs.
The idea of publishing a book is also about generating sustainable income. My survival budget of R6000 a month, effectively means that without medical aid and some other basics I cannot live to work the next day. So I need this money to make more money. As the classic saying goes, “I am because you are and you are because I am”. I am an activist by heart and an active community builder since the age of 15. But I no longer have the capacity to give of my time or energy. I don't even have enough for myself. So now I surrender myself to the universe, hoping that friends and family who read this can assist with crowd-funding and help improve my quality of life.