SICKLE CELL – THE CURSE AND THE BLESSING (3)

Hi.

So, Timi had just tested again and discovered she was back with the SS genotype.

Here’s the concluding part of her story.

If you missed the previous parts, please, catch up here – FIRST EPISODE

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I would say my faith or lack of faith gave my victory back to the devil. Had the devil won the battle? Maybe, but definitely not the war. To be honest I was a little relieved, because that uncertainty cleared. It is like the Yoruba adage that says “if you put a person who is used to staying on a mat on the bed, he will always find himself back on the mat’. That is one area of my life I am still in the process of dealing with.

I fell terribly ill once or twice after that, the pain was so intense, it was a whole new level. I am someone who can withstand physical pain to a certain level, but this time I prayed to God to take me at that point. I could feel God looking at me, telling me it is not yet time. I could also feel that my death would make too many people sad. I also felt that I really hadn’t finished my work on earth so I just knew I wasn’t going anywhere.

Back to work, when I had a change in line manager, things became a little tougher, I learnt that there is no excuse for not putting in hard work. There was a time I was ill and didn’t feel I could make it to work, my boss at the time made sure I showed up at work irrespective. She made me work late into the night, some weekends and public holidays. I worked harder than any corp member I knew at that time. I honestly didn’t like her, I used to whine to her saying “But, I’m only a corper!”. Today, I’m glad she made me put in all that hard work. It became a part of me.

Before then, I honestly didn’t think I had it in me to do rigorous work, but I did, and I guess my goal getting spirit wouldn’t let me be average. The hard work she put me through then also worked for me because without me knowing, I was getting noticed by people I didn’t even know were watching. When it was time for me to get a job after my service year, it was all those people watching, in God’s favour, that made it possible for the ‘non-retainment of NYSC corp members’ policy be lifted for me to continue work there.

One thing I can also say God helped me with was how he made me work with bosses that were completely supportive each time I was ill. They always made sure they went out of their way to make sure I was taken care of. For that, I am grateful.

In my 7th year of work experience, I became uncomfortable with how many times I had to miss work. Thanks to the person I was dating at that time, I understood the importance of taking proper care of myself. For the first time, I had a reason to always take my drugs (because he always hammered it into my ears), but honestly, I knew I could live a more healthy life. I became more desperate not to fall ill, especially when I was about to change places of employment. I didn’t want my health to be in the way of my succeeding at the job.

I heard about many exploits in the medical field like bone marrow transplants and stem-cell transplants. I became desperate to see how I could have one of them because at that time, I thought I could eradicate the ‘S’ gene in me – I didn’t want to pass it on to my children. To my utmost dismay, I discovered after I reluctantly joined a clinic that specializes in the treatment of Sickle Cell that not only was I too old, it was way too expensive and it was still in trial stages. The percentage of the procedure not succeeding was high, and lastly, I will still be SS but would just never fall ill again if the procedure is successful.

That last bit of information killed my drive to have the procedure, because the only reason I was so desperate was because I no longer wanted to be SS and I didn’t want to pass the S gene to my children.

However, all was not lost. From my research, and thanks to the joining of a sickle cell clinic. I was given a drug (Hydroxyurea), I call it the miracle drug. I had heard about it even before joining the clinic and started taking it based on what I read, and the research some loved ones had done for me. I joined the clinic and found out that I had been taking an under-dose. My dose was rectified and I must say, I am a lot healthier, very healthy. I have been able to work long hours non-stop without feeling anything beyond the usual fatigue I believe even healthy people feel.

I have not been so lucky in relationships, my dream of getting married to the first person I date died in University. I have dated different types of people and been blessed to know, easily, who I am in a relationship with. I have dated two people who felt like they were doing me a favour because I was SS. One of them actually told me that he would have to fight a battle to take me into his home, so I should be grateful. That was the beginning of the end of that relationship. I honestly wasn’t going to end up with someone that feels like he is doing me a favour.

I also dated someone that was in a hurry to get married to me. When I asked for a little time so we could get to know each other better, he made a statement that made me completely lose hope in the relationship. He said, “We are begging you to marry, a lot of people don’t want to marry SS, yet I do and you are doing shakara!”. I was shocked. What was the “shakara” in asking to get to know each other better? It turned out that he just wanted to suck me dry of money. That was my first, and hopefully, only experience of almost getting duped by a guy.

I also dated someone who didn’t have a clue about what people with the SS condition go through. I have a feeling that as soon as he found out, he started planning his escape route.

All these relationships sort of made me toughen up further. I started having the difficulty in choosing how to behave, of knowing when to be strong and when to let my partner take the lead. I have been so used to taking care of myself, getting and staying strong, that I emasculated someone I felt I could have had a future with.

I have learnt the hard way that balance is key. I am making an extremely conscious effort not to get desperate. I have fears, very deep fears, when it comes to relationships. The biggest of them is being loved for who I am, especially with all my excesses (not just physical).

I am still far from perfect, very far from it in every area of my life. My walk with God fluctuates. I still have terrible character traits. I’m sure I’ll will still face a lot of challenges, but in everything, I have learnt and I’m still learning. I aim for perfection and hope that I will fall somewhere close to perfect. I pray that at the end of it all, I will hear “Well done, my good and faithful servant”.

One thing I have at the back of my mind is Sickle Cell would not stop me from living my life to the fullest.

Though my experiences in life have been anything but ‘a walk in the park’, I am extremely grateful for every tear I have shed in secret and with my close friends. It wasn’t fun then but I look back and thank God for the strength to just hang in there and for the lessons. I also thank God for using my experiences to sow this seed of CrimsonBowNg into me and sending Greg my way to suggest and partner with me on this project.

Greg and I’s dream of CB is to reach out to people like us in every way we can. Though this dream is still being continuously fine-tuned, I pray and hope for a time when medical treatments will be paid for through CB, lost hope will be restored and most importantly Sickle Cell patients and loved ones will learn how to live full and happy lives.

I encourage you NEVER TO GIVE UP, irrespective of what challenges you are facing. When there is life, there is hope.

God bless you.

– Timi Edwin

PS

Please, dearies, don’t let Sickle Cell stop you.

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Timi Edwin is the founder of Crimson bow sickle cell initiative,Nigeria Lagos.

you can reach them via email: crimsonbowng@gmail.com

Twitter @CrimsonBowNG

And on IG @crimsonbowng