Two And A Half Decades With Sickle Cell, By Umar Ibrahim Jamo

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I woke up this morning healthy, for now at least. Crisis may decide to make an impromptu visit anytime. This has been my story for twenty-five years. I lost count of how many times I have been hospitalized. How many injections did I receive? How many tablets have I swallowed? I don’t know. To be honest I don’t always take my routine drugs. My Mother is always policing me. How many drips have slowly made their way through my veins? I don’t have any answer to those questions. The answers to many of these questions could only be provided if my body could talk.

I can say am used to some painful stuff over the years. I am no stranger to emergency room; I know 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. Am always on my way to the hospital. I have been there a lot. I think I should get a permanent room.

Since childhood, I am a passionate lover of sports, especially football. But most of the time, am just a spectator. Being left out of group activities is a terrible feeling; nobody understands that better than me. I cannot engage in all sorts of activities, because of what people refer to‘’he is a sickler’’.But I know I hate that, because I have heard it all my life, or for very valid reason; that is, society has painted the word with all kinds of weakness.

I always tried to hide my ailment.I thought people would not want to associate with me, and I do not want anybody to think less of me. I always try 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, as soon as the driver drops me at the school, I yanked the tag off my neck. The tag ruins my plan of concealing my ailment; it was an unnecessary publicity. I know my Mother’s intention was to protect me. The tag puts me on the spotlight.

I always know my plans to blend in with the other kids will be in vain. 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. One particular Teacher during my Primary days was not, she beat me a lot. One instance, she said to me ‘’I will beat you today, if you like; turn to ZZ instead of SS.

Better safe than sorry was a proverb that I had to understand the hard way. I constantly put myself at risk by doing things am not supposed to do. The hardest decision you will ever make is choosing what you want, and what is good for you. At a particular time in my life, I registered at a local football club. So that I don’t get turned down,or treated differently, I hid my ailment, I trained normally as others did, well it seemed normal, but only my body and my tiny legs knew the pain I endured.The pain was severe, deep down the bones. Sometimes it was so bad I could barely walk. I can’t recall how many times I triggered the crisis,and at home I can’t tell them what I did, because I don’t want the ‘I told you so’ situation, which sometimes I couldn’t escape, because breaking the Doctors rule is my habit.

The burnt child fears the fire. As I grow older, I learned the hard way, pain taught me lessons. I fully understand my body; I know what my body can handle. I played in the rain, I refuse to dress appropriately for cold weather, and I did lots of things that landed me in the hospital, sometimes for days.

I never regret the things that I have done, I paid for it dearly. It was an eye opener. SCD has knocked me down so many times in my life. It has disrupted my studies. They said as I get older, the crisis should 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 am not sick. Now here I am, 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, choosing a career itself, a sickler has a thin list to choose from. Difficult courses are ruled out for me. My ambition was to become a lawyer, but it was pointed out to me that will be too difficult for me. Also I have to leave home to do that, so it was not up for discussion. I ended up studying English. Where will a Sickler fit, 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 that struggles daily. Finding a job in a society where you have been stereotyped is challenging.

Living with SCD is hard, you are never independent. You always lean towards your family support.As an adult, my freedom is limited. All my life, I spend in Kaduna. That does not mean a Sickler shouldn’t have dreams. Millions of SCD patients out there, we also have dreams and aspirations we want to achieve. Continue to battle and you will make it regardless of the odds. Where there is life, there is hope.

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