Two-and-a-half decades battling sickle cell

I woke up this morning healthy, at least for now. Crisis may decide to make an impromptu visit anytime. This has been my story for twenty-five years. I have lost count of how many times I’ve been hospitalized; how many injections I have received, the number of tablets I have swallowed or how many bags […]

I woke up this morning healthy, at least for now. Crisis may decide to make an impromptu visit anytime. This has been my story for twenty-five years. I have lost count of how many times I’ve been hospitalized; how many injections I have received, the number of tablets I have swallowed or how many bags of drips that slowly made their way through my veins. The answers to many of my questions can only be provided if my body could talk.

To be honest, I don’t always take my routine drugs and my mother is always policing me. I’ve gotten used to some painful stuff over the years that I am no longer a stranger to the emergency room; injection doesn’t scare me. Pain relievers and injections have been part of my life, and sometimes I need multiple injections to reduce the pain. Intravenous lines also don’t scare me; it has become a little routine for me. I’m always on my way to the hospital. I have been there a lot. I think I should get a permanent room there.

Since childhood, I’ve been a passionate lover of sports, especially football, but most of the time, I’m just a spectator. Being left out of group activities evokes terrible feelings; nobody understands that better than I do. I cannot engage in all sorts of activities because people would always say, “he is a sickler”. I hate that, though I have heard it all my life, and for very valid reasons, society has painted the word with all kinds of weakness. 

I tried hard to hide my ailment. I thought people would not want to associate with me, and I did not want anybody to think less of me. I always tried to fit in. My mother made a special tag for me that read ‘SS’ so that my teachers will not beat or punish me. She always made sure I had it around my neck before I leave home. Little did she know that as soon as the driver drops me off at school, I yank the tag off my neck. The tag ruins my plan of concealing my ailment; it was unnecessary publicity. I know my mother’s intention was to protect me but the tag put me on the spotlight.

I always knew my plans to blend in with the other kids would be in vein. I was so small, thin and weak; I was not as strong as they were. I hated pity, I do not pity myself, and I do not want anyone to pity me either. Not everyone was sympathetic towards me, however. One particular teacher during my primary school days was not; she beat me a lot. On one instance, she said to me “I will beat you today, if you like turn to ZZ instead of SS.”

‘Better safe than sorry’ is a cliché I understood the hard way. I constantly put myself at risk by doing things I was not supposed to do. At a particular time in my life, I registered with a local football club so that I don’t get treated differently. I hid my ailment and trained normally as others. Well, it seemed normal but only my body and tiny legs knew the pain I endured. The pain was severe, deep down the bones, that sometimes it was so bad I could barely walk. I can’t recall how many times I triggered the crisis,and at home I couldn’t tell them what I did because I wouldn’t want the ‘I told you so’ situation, which sometimes I couldn’t escape because breaking the doctors rule was my habit. I played in the rain, refused to dress appropriately during cold weather, and did many things that landed me in the hospital, sometimes for days.

A burnt child fears the fire. As I grew older, I learned the hard way; pain taught me some real hard lessons. I now fully understand my body; I know what my body can handle. 

I never regretted the things that I did. I paid for it dearly, and it was an eye opener. Sickle Cell Disease (SCD) has knocked me down so many times in my life. It has disrupted my studies. They said as I get older, the crisis would subside but in my case, it keeps getting worse. Despite the sleepless nights, the endless battle with excruciating pain, I managed to do my best whenever I was not sick. Here am I today, a graduate and a proud Sickle Cell Warrior.

The reality is: as a sickler you fight battles on a daily basis; physically, mentally and emotionally. Now, the battle is finding a job. To begin with, in career choice, a sickler has a thin list to choose from. Difficult courses were ruled out for me. My ambition was to become a lawyer but I was told that would be too difficult for me. In addition, I have to leave home to study that, so it was not up for discussion. I ended up studying English. Where will a sickler fit in, who wants an employee that would be in and out of work? Nowadays, finding a job is very difficult for everyone, not to mention the sickler who struggles daily with his health. Finding a job in a society where you have been stereotyped is challenging.

Living with SCD is difficult because you are never independent; you always depend on your family for support. As an adult, my freedom is limited, all my life I have spent in Kaduna. However, that does not mean a sickler should not have dreams. I know that millions of SCD patients out there have dreams and aspirations. I therefore urge you to continue the battle, and you will make it regardless of the odds. For I know that where there is life, there is hope!

 

Umar Ibrahim Jamo wrote from Kaduna. [email protected]