Invisible Existence: I'm Rare, But Real!

Life, at times, takes us through journeys that we had never thought would be possible to overcome.

The constant struggle to breathe at activities that other children my age participated in. The difficulty getting a good rest without becoming breathless. The three pillows mom piled up under my head during my sleep so I could breathe easier. The severe asthmatic attacks that other children seemed to outgrow as we grew older, I became more and more breathless. The number of times I began to question myself 'why', but never found answers. I wished I could have asked mom all the questions while I still had the chance. "But did she know what was really wrong?" I wondered. 

   But today I have the answers. She couldn't have known. She was as clueless just as I was, and just as everyone was. I was rare, deemed to be inexistent. But here I am, so real! I was in silent groaning within myself, I was in invisible existence. So invisible that I actually thought, everyone was right, it was all just in my head, or just asthma. I couldn't help it, watching my peers outgrow asthma in my teens, I knew that something was not right with my breathing troubles. After years of fighting an unknown battle within myself, my unheard voice became heard.

  I know I have stretched your minds beyond all possible subjects you can think of, but still can't exactly figure out what I am talking about!

  Well, you wouldn't make it out!

This subject is so rare that some would be hearing it for the first time. You are not alone! I never knew of its existence too, until I realized I was living invisibly, not only to society's eye, but to my eye as well. But then, my eye was opened, and I saw that behind the beautiful, vibrant looking appearance, perfectly normal on the outer, was 1 to 50 in a million people living with a rare life threatning, heart and lung disease called 'Pulmonary Hypertension'. 

  I am a 'PHighter'. I look perfectly fit and normal on the outter, yet daily i am deprived of enough oxygen to keep going each day. Dreams of running in the park, cleaning up a storm travelling often and generally partaking in social recreation have become an almost inexistent part of my life. Watching movies as a kid, people suffered medical conditions that are hardly heard of. "It's a white man thing", we often say in Africa, believing it would never occur near us. But here I am, emerging from the small Kingdom of Eswatini. At only my twenties, when life was just starting out, I became physically limited, not due to weakness but due to oxygen deficiency. Getting through each day is unpredictable, but I chose not to cut myself totally out of the world. I have dreams, and still working on them, but I am bound by certain limitations where my needs have to be considered wherever I go. I strut the mall once in a while, but with every few steps I have to take a seat to catch my breathe. The duties and responsibilities of each day are constant reminders of how the fast pace of my life, suddenly appears to be moving in slow motion. When I share my story, people expect to see a fragile, weak or probably wheelchair bound woman, yet my disability cannot be fathomed by the eye. I wear a brave smile, yet deep within I dread the exhaustion of every simple activity.

Misconceived by society sometimes as lazy or socially withdrawn, I've heard stories of people with similar condition on how they are judged for acting differently. The stares for using the disability parking lot, for not walking briskly or running toward a taxi waiting, or for walking around with a portable oxygen concentator. All because we look perfectly well and normal! Yet, truth is, every ounce of oxygen has become a scarce resource in our world. The effect of air pollutants have become an unavoidable threat to our existence. Our survival depends on accessing pure oxygen. Which is why through my experience I have been enlightened to the importance of conserving the environment. Deprived of the most vital resource of life has made me appreciate every second that I breathe, and every ounce of oxygen that I use up.

I do not take my story as a sob story, but as a motivation to use my scar to heal and educate the world. I believe that despite any tragic experience in life, from that tragedy can emerge a good that can change lives. July and August 2018, my story was published in local newspapers and broadcast live on Eswatini TV. From this, people came forward with similar battles that have dragged on for years without solutions. It revived my soul to see hope being found for those who had lost it, for I know how to seek answers for years and find none. All my life I have never felt how it's like to breathe easy. Even though I can never erase the experiences of my past, but I can choose not to allow them to linger in my memory everyday. I understand that the unforgotten past is the drive towards making the best of my present and working for a better future. It is a reminder that I want a better version of myself today and in the future, than who I was before. I was a scared child, who felt unfitting, but today I am a brave woman, unapolegitic for being me just as I am. If I linger on my past, it will be a barrier towards finding happiness in the present and hoping for a brighter future. It will be a whisperer to my ear that no matter what I do, I will be scarred for life and can never be a better me. Therefore, I have chosen what will build me up, and that is using my scar, to make a difference in somebody's life. I am determined to use my past for a better tomorrow, not to allow it to blemish me for life. 

  Therefore, as the first PHighter to come out publicly with this condition in my country, I'm on a mission to end the overlooking and misdiagnosis of pulmonary hypertension, and lack of understanding from society. I found a significant need to come out and say, "Hey, I live with pulmonary hypertension. I'm not lazy, nor socially withdrawn. I'm rare, but real; listen to my side of the story!