Throughout this article, we see both Botho (Setswana for humanity) and Maatla (Setswana for strength) expressed throughout a warrior’s life -- one that might come across as tiny and frail yet is far from these descriptions. Through this warrior, we see just how strength can take form, shape itself and live resiliently through a small framed being.
I had the pleasure of interviewing Nompilo Tengetile Dlamini, a Cystic Fibrosis warrior born and bred in Swaziland. Nompilo grew up as a sickly child; her earliest memories begin during her lower primary school days.
‘’I had different allergies growing up, especially with my ears which had wax coming out so I couldn’t hear people when they were talking. Even with my body, I had sores which I luckily outgrew’’ -- Nompilo Tengetile Dlamini
Cystic Fibrosis
Cystic Fibrosis, also known as CF is a genetic disease meaning you are born with the disease which inherently causes frequent lung infections that progressively become worse over time hence making it difficult to breathe. This disease causes a thickening of the mucus in the lungs, and also affects the pancreas, liver, and other organs. The thickening of the mucus has proven to cause a number of health issues, including frequent infections, growth problems, liver disease, and fertility concerns.
‘’The disease is basically in the genes of the parents who so happen to be carriers. In my case, this disease did not affect my parents but me. It might not affect the generation to come from me but might affect those born afterward’’
The Case of Misdiagnosis
Nompilo was misdiagnosed quite a number of times. From her lower primary school days, it was assumed that Nompilo had Tuberculosis based on the persistent symptoms she was showing. The misdiagnosis remained consistent over the years even throughout high school to the point where she was given TB treatment to consume as a precautionary measure for 8 months regardless of having negative results. It was assumed that the ‘’TB’’ was hiding within her bloodstream. Even after the treatment, Nompilo did not get better.
A need for home oxygen
Mpilo was first diagnosed with CF in the year 2014 and diagnosed again in 2018 at Milpark hospital in South Africa after a few tests including a lung function test were run by a pulmonologist.
During the lung function test, she was quite optimistic and hoping to hear good results only to receive shattering news that her lungs were functioning at 15% capacity.
She would need home oxygen as her lungs could not support themselves. A decision not to take the oxygen would result in further deterioration of her breathing and overall health. Unfortunately Mpilo's breathing did deteriorate in the course of 2019, leaving her with no option but to be on home oxygen for 17 hours a day. However, the costs of sustaining such a lifestyle continuously became burdensome.
Daring enough to ask for Help
In the midst of the distress and chaos, all hope was not lost for Nompilo who courageously approached Dj Black Coffee; a renowned South African artist who was glad to offer financial assistance which aided in her purchase of an oxygen machine.
‘’I didn’t think he would even consider helping me because of who he is and the number of messages he must get. Somehow, out of the blue, he saw my DM. He didn’t even ask for my details or proof of what I was saying, he just bought me my oxygen machine’’
Nompilo has been on home oxygen since June 2019. Though happy to be having a machine, she was still struggling to come to terms with having to be a home oxygen dependant and not being able to use her lungs to their full capacity. However, she adjusted and moved on with her life.
‘’There is nothing else that I could do to change the situation, I had to adjust.’’
"Moving on" did not guarantee a 'normal life'...
The Otherside
The warrior went on to share the harsh realities of having to live with cystic fibrosis. The first being the inability for one to live their lives to the fullest and the constant fear that consumes her especially when she starts to cough. According to Mpilo the worst truth is how one just can’t be ‘’normal’’ and how people look at her differently while making unfounded assumptions.
‘’I go wherever I’m supposed to and go back home when I’m done because honestly, you can never educate people enough, there’ll always be some negativity. People tend to choose ignorance and such is not something I have power over, I can’t control it’’.
“I so want to be an athletic person. I want to run and also at the same time, I want to gain weight!’’
Limited Physicality
Cystic Fibrosis doesn’t just affect the lungs but the rest of the body as well. Nompilo cannot gain weight as her pancreas does not digest the food in her body. Slow growth and trouble gaining weight even if an individual is well-nourished are one of the symptoms of the disease along with coughing, excessive phlegm, extremely salty-tasting skin, frequent lung infections such as pneumonia and bronchitis, difficulty breathing including shortness of breath and wheezing.
For Nompilo, there was found a different type of healing...
A Balm of Gilead
‘’God speaks to me and comforts me all the time. Whatever it is that I’m going through, once I’m in the spirit and presence of God I feel lifted, unburdened and lighter’’
To keep herself encouraged, positive and hopeful, Nompilo listens to gospel music; her faith and relationship with God keep her sane and grounded.
From Mpilo to YOU -- The big take-away.
It isnt common to stay bold, mentally and emotionally sane while battling a chronic disease. Pehraps it may sound easier to wallow in self-pity to say the least. But not for Mpilo. Here are a few things we can learn from her:
1. Ignorance is bliss more especially when you’re not facing a tough situation or presented with something that is unfamiliar. I implore you; educate yourself so as to not make other people uncomfortable but most importantly to learn so as to know how to deal with a situation and how to give support
2. Ubuntu/Botho (humanity) is not dead. Neither is kindness, compassion nor extending a hand by helping others financially. Many people across the country continue to support Nompilo and others in situations similar to hers and far worse. To the silent givers, to the silent helpers, to those that brighten up the lives of other people even through acts you might regard as insignificant, may it be done unto you as you do to others.
3. There is so much that we are blessed with yet we aren’t cognizant of. Certain things that are a norm to us and a part of our daily lives are great luxuries to people living with chronic lung diseases. The ability to take in a breath and release it without struggling is one of many examples I could give. Something as simple as taking a walk without feeling breathless quickly, consuming a fizzy drink without falling sick and having exacerbated coughs, having a swim, or going to a braai without worrying that you might fall sick or inconvenience people since your lungs are fragile are all but blessings. Take note of the ‘’little’’ but big blessings in your life and appreciate them.
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This article was written in honor of those living with chronic lung diseases not limited to Cystic Fibrosis but Pulmonary Hypertension as well. Warriors part of Mapafu Foundation also known as Circle of Hope, living and those that have passed on. I'd like to make mention of the late Gontlafetse Sehako, Precious Baby Moilwa & Obakeng Machogo. Warriors who lived to raise awareness and educate people on the rising community of home oxygen dependants.
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