(Continued from part 1)
Work and social life
As we all know CF is a very challenging condition it needs someone who is financially stable. It affects you mentally and emotionally and it needs you to be strong and accept it and learn to live with it. I struggled a lot- I needed to work so I could take care of my financial needs e.g for my treatment, food, clothing, shelter etc. But all that was difficult since I was not working and it was not easy to get a job because I would have to explain to the employer about my situation; asking for leave every month so I could go and get treatment. It became pointless to look for a job so I came to a conclusion that I should move around a sell anything I could lay my hands on. This became a challenge also as I would move around walking kms selling tupperware, perfumes.
I would walk whilst I felt shortness of breath sometimes and coughing. I would sit down to catch my breath and walk again. It was really hard sometimes. I would walk in when it was sunny as we know our sweat turns to salt you would see people looking at me wondering what is happening. I could not socialise as I was scared of discrimination from people since I heard “big tummy”, “small body”, “coughing” and people would say its TB or KWASHIORKOR. I had to hide all the time. There comes a time where I wanted to have a female friend- I was shy what I would tell her and mostly about me not being able to have kids. It was quite a mountain to climb for me. It was quite a struggle for me to get medication, to see the doctor, eat and everything as we need to eat certain foods.
Finding treatment in Zimbabwe
It was difficult to find treatment in Zimbabwe as I was told by that time I was the only one with CF. The government at some point imported something for me from South Africa but at some point it stopped. I had no choice but to live without any treatment for 5 years because we didn’t know what to do during those 5 years. I tried to hold on but it came to point whereby I couldn’t hold on I could feel my life was slowly drifting away from me. Until I told my Mum I can’t hold on anymore she then took it upon herself to stand up and come to South Africa to ask for help.
That is when she then found out about Charlotte Maxeke. I then came to SA and started treatment under Dr Cathy Baird and Dr Lindy Gouws. The struggle was not yet over as I was supposed to think about my travelling finances as I was not working. I had to come up with something so I could get my treatment. I was told I should come every month for treatment and every 3 months for my iv admissions. All that needed me to think about money for transport, food, accommodation when I’m this side. I would sometime crash with my brother for days as he has his family rent a small apartment. This meant I would sleep in the kitchen on the floor using old cushions. As we all know the living conditions in the city of Joburg, but I had no choice.
Travelling from Zimbabwe to South Africa is so tiring in a bus every month almost thousand kms. I was meant to cross with a boxes of treatment going back to Zimbabwe sometimes I would be questioned at the border about the treatment. As we all know with CF you required to take your treatment time and again e.g insulin with every meal but it was hard to do that on a bus you would be forced to wait till you reach where the bus will stop. Then you rush to the toilet to use my insulin.
Sometimes you need oxygen you can’t even nebulise by then all you be feeling tight on your chest. But there was nothing I could do. I was supposed to pull through the whole journey you can’t even cough when you sitting next to someone so will be forced to suppress the cough and imagine how difficult it is to do that the whole journey. I went through a lot of struggles which never end. Then I sat down and ask myself how did I pull through all this then my answer is maybe God kept me for a reason. There was a time when I wanted to give up on life but something came to my mind that I should hold on I have a purpose in life here I’m today with a very big dream to save a life out there….
Ndumiso’s goal
I’ve lived with CF for 34 years nothing can pull or bring me down. I now know what CF is its time I give back to my CF community and save a life out there and make sure people understand what CF is especially to the blacks out there who think that cystic is meant for white people only, not knowing its there to everyone.
My goal and dream is to teach people about it and make awareness of it to the black community and make sure they get proper treatment. Help them know we lose a lot of lives because people don’t know about it. The painful part is we are being misdiagnosed of it once faced the same problem about it they thought I had TB or KWASHIORKOR because they thought it wasn’t meant for blacks. But its time we change that and save lives out there….We have to create more awareness programs on social media, tvs, radio create billboards, spread the word everywhere, teach people about it. Have early child hood screenings.
I want to start seminars for people or parents with kids who have CF. My goal is to reach everyone out there we all know black community is poor sometimes its difficult for them to access social media we need to reach to them physical have pamphlets. We must teach them what CF is. I want to create support groups, counselling sessions to parents. My goal is to save a life out there not only blacks but everyone with Cystic Fibrosis. I know what its like to live with CF. I’m looking forward to making sure I push this through so that when my time to rest comes I would leave a legacy and would save a life out their.
I pray and wish I could earn a living so I can make sure I push my project. I want my own place to stay as I’m crashing with my brother who is also struggling. Everyone everywhere God has a purpose for you. Believe, pray and trust in Him and He shall be with you all the time.
(Written by Ndumiso, edited by Clare Emms)