Phebe Salami
Gwagwalada, Abuja, Nigeria

This piece is a work of fiction inspired by real-life stories of sickle cell disease.

There are a thousand and one ways to tell a story. I guess this is just another one of those ways, my own way of telling this story… I wished I was like all the other kids, full of life and laughter, always bubbling. I wished I did not have to miss school so often. I wished I could live the way I wanted and just explore life without fear of when I might have another crisis. I wished so many things…but as they say, if wishes were horses, beggars would ride. Sometimes, I felt cursed from birth. All I’d ever wanted was to just live a normal life.

I was diagnosed with sickle cell disease (SCD) at the age of six, and my life was never the same. Every day just seemed like another day to fight for my place in this world. It was as if I was in a constant battle, a battle for my life. Sometimes I felt lost, like I did not even belong here.

Even as a young child, I had always felt there was something “different” about me, and sadly not in a good way. I was almost always falling ill, so I had more frequent visits to the clinic compared to other kids my age, and with each dreaded visit, we returned with a myriad of drugs which I had to take. I usually got better after a few days but soon I would come down with another sickness.

One day, I was in excruciating pain. My parents took me to a pediatric hospital, where the staff declared they had finally found the missing piece to my puzzle. Alas, I had sickle cell disease. Though I was just six then, I can still remember the look on my parents’ faces as the doctor pronounced his judgment. I did not understand a word of what he was saying, but I could read the worry written all over my mom’s face; her body language said it all. Whatever this sickness was, it spelt impending doom.

When we got home that day, I asked my mom to explain to me what the doctor had said. She just told me that I was a special child that needed special care and then she enveloped me in a bear hug. The hug was tighter than usual and the look in her eyes betrayed her. This only heightened my curiosity. It has been ten years since then, and I finally grasp what exactly sickle cell disease is. I did a lot of research in order to fully understand why I was different. My heart was shattered into a thousand pieces when, in my quest to unravel this mystery, I found out that the people I loved the most were somewhat responsible for my suffering, as my parents’ genotypes combined were likely to produce children with SCD. As much as I love my parents, this was heart aching for me, but I hold no resentment against them. I know they love me too, they truly do, and I could see remorse in my mother’s eyes each time I had a crisis… It was just a sad story, like the kind I see in movies.

Nevertheless, I’ve come to accept my fate with good faith. I’ve been in and out of the hospital more times than I can count, and I’ve had so much blood transfused that I was beginning to doubt if I still had an ounce of my own blood flowing through my veins. I also became used to the pain and the pitiful look I get from my schoolmates each time I have a crisis, though I absolutely hated it. I have maintained my grades in school, though it has not been easy because of my frequent absenteeism.

In the spirit of positivity, I’ve also joined the Hope Alive Foundation, which supports people with sickle cell disease, and they have become like a second family to me. It was encouraging to know I was not alone in this fight and seeing other people with a similar condition still full of hope and enthusiasm gave me hope too, it was almost contagious.

My lowest moments were the times when we lost members of the foundation due to complications of SCD. This would leave me depressed, but I always try to hold onto hope: hope that things would get better someday and perhaps I would be cured. I have many dreams and aspirations, and a lot of uncertainties too, but I am determined to live one day at a time, one step at a time, and see where life takes me.