Tuesday, March 23, 2010

Rocking THESE GENES of mine... a 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.


FMH said...


Guillermo said...

Rock them genes as well...lets say am a lil lucky not to have had 48 injections in a week, buh bliv me ive had real tough times when am like who did my 'mum' offend to bring her ds burden.lolz buh today i just laff at it nd funny enuff am so proud of it now.lol!

femiodeyemi said...

well done Tosyne. God bless and preserve you.

Anonymous said...

I have sickle cell too and all I can say is - to beat is to hand it over to God. I thank Him for the disease too because it is the journey I was meant to travel. I believe there will be a viable cure someday and with that hope, I live on and enjoy the good days and meditate on the not so good. Do your best and leave the rest.. Keep rocking, girl!!

Anonymous said...

Thank GOD for SCD cos without it, i dont know what my life would have been. There is that extra, sufficient grace for people with SCD. I am a living testimony to it. Living with it for 25 years... i know i can be what i wanna be. God bless u indeed.

DAMOLA said...

Tosyn,I feel u!
So badly! What's worse,I'm hyperactive, and I'm the first child so I cant afford to be lazy cos I was not born on the cushy side of life, but who am I to ? God?
Lyk u,I have learnt to really rock the genes,on good days,rock it up and not so good ones I bite d bullet.
I have not been able to count my injections b4,but I'm sure my record rivals urs.
I av had a record 15 jabs in less dan one hr, cos my doctors were tryin to find my veins(I'm verrrryyy plump) for IV.
I salute your courage.
Pls let me get invites for next jeans for genes events, and I wil def attend.
Rockin dse genes is d only choice we've got!
Guess what, I jst left d hospital afta a 1wk stint. lollll.

Anonymous said...

Waoooh, i salute your courage, i can feel your pain, take it or leave it, T.Buck you are an Inspiration to many of us out here, both SS n d Norm, i don't think i do take count of my injection, bt i hate the fact that i av to take tons of drugs daily, the Stigmatization i suffered from classmate while in Sec.sch, the pain moving from one part of my joint to another bt i today i thank d Lord. Pls i wld like to get one of those T-shirt, they look lovely... Hope to meet you some day. Areeaaaahhh i am Odunayo.

Anonymous said...

This is my first time here though I have heard of u through Facebook and for that name I always thought you are living with the disorder and I am right after I decided to look up this blog and did I say I almost cried.Yeah,I felt you not for you because I just love the way,"you worked around them",giving you authority over them and not them over you.
Actually,I am not living with the disorder but I am a carrier but my little sister who is just 5 years old is and I almost cried because while you narrated your story ,it brought to my vision how it is with my sister and ....

God bless you and preserve you like someone said and I believe God is greater than any blood disorder be it white blood cells or red blood cells,with Him if you believe your story will be changed in Jesus name,amen and my sister too!


Nutty J. said...

Glad to know we are not hiding.

Rocking these genes is the best way to deal with it

So go girl...keep stepping. I'm stepping

Kubbydoll said...

It would be very easy to feel pity for you but you are not that kinda person, you are so strong in all u do and what you believe in. You have courage and you stand out! Most of us do not have any ailments or disorders, yet we are unable to stand out or even stand for something, not that we can't, we just don't have the courage to. I stumbled upon a piece about you over a year ago in some magazine, then i got very curious and interested and started checking out everything i could lay my hands on about you. YOU ARE A SPECIAL, ADMIRABLE AND i could go on and on.........

Anonymous said...

It's good to know that after so long, there's a way around this disorder....ROCKING THESE GENES.My story is no different from yours but have never for once counted my injections, all the IVs,IMs. Thanks for talking about this.

yemi salako said...

I wl rock these genes!