Updated: March 1, 2021
Written by Oluwafemi Ajayi in South Africa
It came with me from conception; that which everyone stigmatized.and couldn’t comprehend why I was treated differently; like an egg that could break at the slightest opportunity.
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My Twin could do as she pleased and get away with anything, but I couldn’t and any slight provocation, pain crises would visit even though unwelcomed. I remember those days when Dad gave Me and Twinnie our first swimming lessons in the Jacuzzi. We were barely 8 years old and It was fun! We laughed and laughed and kept having our fill of the so called “swimming lessons”. Finally, we were done and as I climbed out of the Jacuzzi, I felt a painful strike in my bones and found myself on the floor. I tried to get up but I couldn’t and realized that crises had arrived, Dad knew immediately and carried me to the room. Twinnie stared in confusion and asked “Kenny what’s wrong”? That day, reality dawned on me.
As I grew older, I became one of the most rebellious “warriors” of sickle cell disease as medications disgusted me. What made me more rebellious was the fact that my Mum had two sets of twins and both sets were the most unidentical I’d ever seen. For each set was a “warrior” and we always wondered why we constantly felt so much pain while the other two were having a pain free life. It was a tough experience, Twinnie grew normally and Junior Twinie also but we, the two warriors were so small that people always thought we were their younger ones. So, the challenges went on and on with crises visiting almost as regularly as taking a breath, yet, I hated medications so much that I preferred letting the crisis have its fill of me rather than taking medications.
Every time Mum came to give me folic acid, b-complex and novalgin (which was used then) to relieve the pain, I’d just pretend to take them and when she left, I’d throw them away. However, there were times when I couldn’t watch my Mum go through so much trauma for my sake so I’d give in to Her and find myself in the hospital, strapped on the bed with injections, capsules, tablets and drips becoming my companion for days. Those days were horrible and pathetic and I sought solace in the church.
I kept running helter skelter for healing, attending night vigils in all denominations. These vigils only gave me more crisis but I didn’t relent. There was a certain revival I attended in a church, the pastor began laying hands on people, when he got to my turn, he laid hands on me, pushed me and I fell flat on my back. I didn’t fall from an encounter with the Holy Spirit, I fell from the impact of the pastor’s push which led to a dislocation on my back and what was supposed to be an encounter of a life time became a nightmare. Despite this, I kept on searching for healing even though the church members mocked and stigmatized me. They were full of gossip and their teachings insinuated that the reason for the sickled cells was because the devil and his demons live inside. Yet, they forget that the Lord said: “before I formed thee in the belly I knew thee” Jer1:5. So where was the devil when God was forming me? Did God place the devil inside? Does God do evil? Very disappointing and depressing…hmnnnn but after all, they are mere mortals!!!
The turning point was in South Arica when I had to go for surgery due to excess gall stones. The medical facilities were top notch, everything was on point, I felt nothing during the surgery and nothing until I became conscious again. The pain from the aftermath of that surgery almost killed me but fortunately, I was in good hands. The Doctor gave me morphine and that was the end of the road for the pain. I know I was lucky from that experience because of the access I had to better medical facilities as compared to Nigeria. Another instance was when I had to quit my Masters’ programme because crisis visited; it was an unforgettable experience. There was no one around to help me. I had taken a medication that was used to tackle an allergic reaction and was experiencing the side effects. I had never been through such excruciating pain in my life; the pain was the type that neither responded to medications nor injections. I had collapsed on the floor, at the entrance of my room and I felt death reaching out to me with its cold hands.
Thereafter, I had been wheeled into an ambulance, taken to the hospital and was placed on admission for over a week, yet there was no improvement so I left. On getting home, I had to walk to the closest mall to get my food and groceries. As I walked slowly down the road, with a heavy limp and big swelling on my right leg, it took every strength in me not to breakdown and cry. I got so angry that I suddenly stopped in my tracks and spoke to my leg saying: “hey leg, I’m tired of the crap you’re putting me through. I have to go and get what we gonna eat, so quit the aches and let me be!!! You know if I don’t get food for us, we won’t be able to survive, so if you wanna survive, stop aching me right NOW! It stopped and that did it, suddenly, I found my healing through the “talking cure”. No churches, no doctors, just me, my body and the God in me.
I found strength from that day and was able to go through very trying times in the society. I remember there was a certain man I met, after sometime together, he invited me to meet his family. So I went, met his wonderful family and we began planning the future as they seemed very receptive and I wasn’t sceptical. Out of the blues and after wasting my time for so long, He told me we wouldn’t be getting married because of the genotype. Not that our blood wasn’t compatible but he couldn’t risk being with a “sickler” as he called it. It hurt so bad and this was one of the many that had happened, but I just laughed and moved on. Then I met him and he redefined true love to me; taking me for what I am. love you, angel of mine.
Sometime later, I was able to re-apply for my masters and finally graduated with a distinction. Years later, after making arrangements to commence my study for a doctorate degree, I travelled to my home country on vacation. On getting there, I heard the news of my friend’s transition to glory. Isaac was my colleague in my undergraduate days, we were age mates but he passed away two weeks after my birthday. He was a warrior like me and fought sickle cell to his last breath. I cried and wrote a publication in His memory. His death scared me and I decided to step out of the mirage humans had created through faith. I had fasted severally, prayed severally and taken countless medications but nothing was working. So I sought He who made me because I needed to know what was wrong.
He gave me two passages; “ and He said unto me, my grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me”. 2 Cor 12:9 and “ ….the Lord said unto Moses, wherefore criest thou unto me? Speak unto the children of Israel that they go forward” Ex 14:15…… Hhhmm!!! I heard you holy one, I am moving forward. Everyone wants healing but not everyone will be healed, be it through medications, surgeries or through the spiritual and this is the harsh reality of life. What most people forget is that with GOD all things are possible, HE is sovereign, unquestionable and HE does as HE pleases. Just let his strength be made perfect in your weakness, find your healing inside of you and move forward!
Finally, I attended a meeting at a sickle cell foundation in my home country where I had been invited to give a speech. What I saw there broke me; so many warriors fighting the battle with little resources, some were so helpless, their spirits crying for help. This took me down memory lane and I had a glimpse of my late brother who died in his battle with sickle cell anaemia. I gave my speech and took a decision right there; I’ll do this in memory of you dear brother. No more hiding and pretending, I AM ME! I’d stand up and fight the disease that has plagued me and denied me for so long; that which has inspired the mockers and those who have stigmatized us. Blessed are they, for theirs is to push us to our place of glory. I will champion the course of others like me and make Nigeria a better place for all of us.
So I call on my fellow Nigerian warriors in Diaspora to join me. Nigeria has the largest number of warriors in the world but unfortunately our medical system does not meet up with the demands that come with this number. Some warriors became victims of this disease due to misinformation of medical results from some medical laboratories. Thanks to some sickle cell foundations that have created clinics specifically for warriors, however, we can do better. For warriors like me in diaspora, I believe we are privileged to be outside Nigeria and enjoy the benefits of better medical care in more developed countries. Lets us come together and prove to the world that sickle cell anaemia is not a death sentence neither does it mean the others are better than us. You’re a Nigerian warrior, you live outside the country: United Kingdom, United States, Germany, Ireland, Canada, South Africa, Kenya, Czech republic, Cote D’Ivore, Cameroon, Switzerland, France, Ghana, Brazaville, DRC, Australia, Italy, Egypt, Scotland where ever you are. Let us unite despite the distance and make Nigeria a better place for our fellow warriors back home, they need our help.
As you read this, share it with as much people as You can so that we can reach out to as many Nigerian warriors in diaspora as possible. I welcome you to the world of possibilities as I launch the ‘GAIL SICKLE INITIATIVE; a foundation where we are empowered to empower.
For more information, you can send me an email on firstname.lastname@example.org.