Tuesday, March 23, 2010

Rocking THESE GENES.. my personal story!

When i am asked to write about my journey as a person living with sickle-cell, the challenge for me is finding the right balance. I do want to share my experiences and let you know how it felt, and feels, but i also do not want to come across as self-pitying or whining. Then there is the delicate balance between hope and reality. Yes, you can live with these genes, but it is a painful journey no matter how much i try to coat it!

The best thing?
I just write and hope that if one person reads it and feels better, then God's purpose for me continues to be fufilled.

Yes, i have learnt to see my genes as part of my purpose. For any other option would drive me insane. How do you explain to a child that they are living with a disorder that is incurable and was inherited at birth, and came about simply because two people loved each other and brought forth life? How do you, as that child, wrap your head around it?
For me, there were transitions, but the most memorable are the angry, and the happy.Angry was at my mother (oddly, never my father. But i am a fierce daddy's girl), and more importantly, at God. You see, it was impossible for me to understand how God could love me and punish me at the same time. I had wild discussions with Him, i even urged Him to kill me, Once, i was so ill that even the generator got on my nerves and moving a muscle spelt pain. That was my most fun moment because after i spent all my time asking God to take me home, i felt at peace and was no longer angry again! I do not always share this story as it sounds 'spiri koko' (spiritual) but since that day, i knew i had to either wrap my head around this disorder, or let it consume me!

I chose the former.
First, even though i could not remove the cells, i could remove my attitude to them. Instead of hating them, i loved them. Yes oh, even when i would have to be rubbed all over by my mother (sweet mother for real) with transvasin, and sleep with a hot water bottle, all because it was my birthday and i just had to dance. I mean, what is a mother to do; not allow her child a birthday party because she would be in pain later? I loved those cells even when it meant my mother would find some other concoction for me to try next. I mean, i was luckier than most; they never tried to beat the evil out of me abi? I loved my genes oh, even when it meant my father spent more money on hospital bills than school fees when i was growing up, and even though it meant my sister got a little less attention than i did (and i love her for never making me feel bad about that!).
The more i loved the genes, the less they seemed to bother me. And the more i spoke about the genes, the more i found coping strategies. The more i understood the genes, the more i worked around them.

Yes oh, i was the girl in the hospital who would never flinch as they stuck a needle in her arm (I once took fourty eight injections in one famous week), and i was the girl determined to make people laugh because the more they laughed, the less they focused on me and why i was so thin, or why my eyes were yellow!
But as i grew up, i realised that loving but ignoring the cells was not enough. I had to speak up about them. I had to let my friends know that i could hang out with them, but only for this long! And i had to find out from other people living with sickle-cell, what their journey was like! The more i did this, the less it became about me, and the more it became about a nation and a thinking!
Why is sickle-cell practically stigmatised? We should talk about it, and noone should be ashamed to either live with it, or have a family member or friend that lives with it. And why should we deal with it alone when by asking and sharing, we can find more ways of coping with ours? I mean, people have asked me to speak with their friends or family members that live with the disorder but are ashamed or afraid of it, and even though i am not a medical expert, i do enjoy encouraging people!

You can live with sickle-cell. I do. Tope does. Toyin does. Subi does. Jacob does. Tunji does.
Some days, i do not hear from Subomi so i know he has been ill, and i call and we say hello. And vice versa! We are not hiding, and we are not letting our genes stop us from living.
We may not express it the same way, but i think somewhere along the line, we all realised that it really was not how long we lived that mattered, but how well.


  1. your experience mirrors mine. Only that the diseases were different, I was diagnosed with lupus, hyperthyroidism, eye disease, skin lesions sensitive to cold and anaemia. I felt exactly as you write, getting angry at God, hating the pain so much. But you make a choice. your story is very inspirational. thank God and well done x

  2. Thanks for sharing. This means a lot to me. Even though i don't have the disease, my cousin passed away from it in 2007, and one of my closest friends has it. I'm very interested in it and was going to do some sickle cell research this summer. My summer research had to be postponed so hopefully next yr i can do something.

  3. Thanks for this tosin,
    i truly felt u in this post
    i am at wits end
    what do u say to sumone who is in a relationship leading to marriage , a relationship of 6years
    of love and happiness and trust, with a perfect guy and just one prob we are both AS

  4. This is an amazing post....one of a kind...

    Thanks for sharing

  5. I was so moved by your post.. and it really got me thinking..
    I have a family friend who has the genes,she's a lot older than I am, funny thing is we all grew up together, Now all her siblings have all gotten married and left the house, the other day, she said I should come visit her.. I didnt go.. I feel so bad.. I let my own mundane things take over..
    I would go visit her tomorrow..
    Great post..

  6. You are very brave. Life is what it is. Keep on rocking.

  7. You have really touched so many lives with your determination...the journey is many times a lonely one but your resolution makes it worthwhile for countless others..We love you, Sis

  8. Thanks for sharing this story, you don't know how many poeple you have inspired. May God continue to bless you wih strength and health.

  9. Just stumbled on your blog, I am also living sickle cell but unlike you it has never been something I openly discuss, I wish I was as brave as you but my parents brought me up to believe that it is a private issue, and I have adopted that approach till now.
    I also went through a phase where I was angry with God for punishing me with this although I was always grateful to my parents for all the care and love they showed me.
    I will do a post on this and refrence you, so thanks for inspiring me. x

  10. sometimes you just want to be like HECK the CELL!!!
    u know what - you will always have a special spot in my heart no matter the distance and silence :-)
    have fun today at swe!!!

    ps:i'm sad i'm missing it

  11. This is a beautiful piece, I live inteh same close with a man who has the same gene but he is above 70, I do not know how he did it, he has two children that are SS too but living healthy lives in the UK.
    Love you dear, I read about you through Olakitike, Ayobami Famurewa on WORLDPULSE in 2009. Wish to meet you soonest.
    Warmest regards

  12. I really wish I could meet you.

    This is brave and lovely.
    Thanks for sharing

  13. oh my...din't know i was even better,thanks for letting yrself and inspiring me. i'm SC and i've always thought it was bad,but then i think that God has spared you and us for a reason we are all gifts and i'm gonna be the gift i need to be to someone.
    hey its getting better.
    at least i din't know until i was 17 years old