I love telling stories. I write about my experiences of life, art, travel, culture, poetry. I even journal about living with my genetic condition.
But one day I decided it would be great to express in a different kind way. I wanted to tell mine and other’s stories of living with our genetic condition through visual imagery.
I wanted to use photography as an art form to express the different motions that come with this condition.
How we deal with pain and suffering every day of our lives. To express how we battle mad levels of fatigue, how we live with anxiety about when next we will be sick and back on a hospital bed, how we have become accustomed to discomfort and pain that we are no longer afraid of it. We have normalised it like the air we breathe. How we deal with broken bones, broken cells, strokes, suffocating pain, damaged organs and fight early mortality. Sometimes the pain is so excruciatingly unbearable, we chose death over life.
We are born with it and we die with it. There are no easy ways around it.
We deal with the impact on our social lives, our physical, mental and emotional lives. It takes its toll on our childhood, education, careers, professions, everything, until we end up borderline depressed and broken but we keep going, we keep living, we smile, we hide behind our pain, we cry at night, we keep smiling, we keep thriving, we keep popping those pills, we pop them until we die, we take your blood and exchange them into our veins to have life, to live. We need your blood donations, it fixes us for a short time until the next time when we need another fix. We take opiates to keep us alive, pain free. We use oxygen to keep us alive, we use surgery and chemo treatments to keep us alive. We do everything we can because we have no choice, because we didn’t choose this, because we were made to deal with it.
Some of us do not know what a decent quality of life looks like.
We fight, we fight, we win, we lose. Some fall and don’t make it, we hold their memories, recognising that they are in a better place, pain free, others keep fighting until we make our mark, find our legacy and our legacy may be as simple as just surviving.
Sickle Cell... I am a warrior. We are warriors.