“would you rather choose LOVE over your child or children’s healthy life without limitations
or would you choose for your child a life of pain, anguish and limitations’’
My heart suddenly stopped beating, I only feel this sudden cold envelop me and then I feel wet at
my chest region and suddenly on my face. I took out my hand to clean my face and to discover
what exactly is on my face and where it came from, it's from my eyes and tears were rolling out
beyond my control "Tolu you're in charge of your body, you’re in control" I told myself and so
then I tried to gain control of myself. I placed my hands on my heart and I could now feel my heart
beating fast, faster and faster and faster it goes. I could feel this strange pain, deep down
somewhere in my heart, emotional pain. All this happened at the sight of a 2 YEAR OLD HBSS
PATIENT whom I encountered struggling in pain while I walked through the hallway of the
hospital. For a moment I stared at her and it felt I was staring into a mirror, I could feel the pain
she was going through, I could relate, I could feel everything she felt and it hurts, it caused me
even more pain because she was only two (2 years old) and she was already suffering so much. A
whole lot of questions began to stare up in my head; questions concerning survival, peer
relationships, emotions, and life generally. All this thoughts in my head put me in a state I have
never been before. I felt ANGER mixed with SADNESS and a little bit of CONFUSION, in fact I was
LIVID to top it all I felt like I failed.
My mixed emotions; a 2 year old is suffering so much pain way older than she is, a 2 years old
who is being deprived of some activities within her age group, An innocent 2 years old struggling
and fighting to survive. A 2 years old whose life path of continuous war keeps graduating from
stage to stage has been chosen for her without her consent. An innocent 2 years old facing the
consequence of an offense she knew nothing of nor ever participated in, all this pushed me to
approach the parents who were complaining about bills and how tired they were.
I could understand what they were saying but then I was filled with rage, if they are this tired
of supporting the fighter on the field waging the war against an army of enemies obtained because
of their failure, how tired would or should the child be?! .I decided to ask them one important
question everyone ought to answer; WHAT IS YOUR GENOTYPE? Their reply required me to ask
another question, DID YOU KNOW YOU WERE NOT COMPATIBLE AND THE CONSEQUENCES
OF GENOTYPE INCOMPATIBILITY?? Then again, their reply startled me, now I had reached my
rage climax "WE DIDN'T KNOW IT WOULD BE LIKE THIS.....WE THOUGHT OUR LOVE WAS
STRONG ENOUGH TO OVERCOME" so they said. "LOVE" mere love is very essential but never
enough. Most people love one another but they forget they are going to love others who would be
products of them and this makes them so ignorant of how much those offspring can suffer as a
result of such great ignorance. I just couldn't help laughing in this weird manner as I kept
repeating the word "LOVE”. Suddenly a question popped into my head and I finally asked "HOW
FAR AS THIS LOVE HELPED IN OVERCOMING HER PAINS?" Your 2 years old child is in there
lying in pains, unable to say how tired she is and just to think of the fact that it’s just the beginning
of her war. She is already being introduced to an addictive injection called PENTAZOCINE.
A dosage of pentazocine contains 30mg and at 2 years old the child is given 15mg to help with the
pain, by the time she's 5, 15mg of pentazocine might not subdue her pains anymore and the
dosage would then be increased to 30mg. At age 10 she might be an addict already or be
introduced to a higher dose or higher pain killers like MORPHINE. What’s "LOVE” doing while
she's going all through this? A lot is bound to happen to that child except she is well educated on
her genotype and how not to abuse drugs in desperate need of relief and she also has to learn to
persevere in very hard time even though it's very difficult. Although perseverance is difficult but
it's the best option in this situation we have found ourselves.
Don’t get me wrong, love is important, I believe in love and love is God and God is love, it’s an
amazing feeling and it brings life, happiness and joy. Love has brought me this far, stopped me
from doing unthinkable things and has made me persevere, the love that by my family, friends, doctors and nurses, strangers who have become friends and friends that
have become family. This is what I have held on to and it has helped me greatly, I find love
everywhere and even when I try so hard to push them away, they come closer and hold me tighter.
Love is life but in a situation, such as this one love is letting go of that person and finding someone
who is a match and be proud that you chose to give your child or children a healthy life and
freedom to do anything they want without health restrictions and not with regret and shame that
you chose to give your child a life of anguish and pain with lots of limitations.
We sickle cell patients had no control over our medical condition but we can have control over
how we tolerate this situation we find ourselves and we can also fight against it in others as we
fight against it in ourselves and that's why creating awareness for its prevention is a life goal for
me. HBSS patients are taught most times by ourselves to be compulsory warriors and to be tough,
fearless, brave and to fight and keep fighting no matter how hard the battle may get. Some HBSS
patient would rather be addicted than wallow or groin in pains than fight, this is very
understandable and it's not weakness because not everyone can withstand fighting an enemy
showcased to be strong and always getting stronger and stronger and more experienced than
oneself.
I am Adebimpe Shenbote, I am 20 years old and the highest doze of pentazocine I have taken
is 60mg.This is not because I have got a different kind of pain nor a milder one but rather because
I choose to FIGHT. It’s because of my zeal to fight and my desire to overcome, it’s my will power
and orientation that has gotten me this far without being an addict. Looking back, I recall after
my 7th surgery (ooh yes, Seven (7) you read it right not mistaken (for my Yoruba people) Meje)
In a year my pains had become too much for me to bear and so I was introduced to MORPHINE
(of course the morphine I talked about earlier, yes ooh I've tasted it and it's not sweet ).That was
one of the worst days of my life ,it's the worst day of my life because whatever it did BRUH No
doubt took the pain away but the effect was crazy, it's just like collecting fish from the devil and
paying back with a pound of flesh. I felt the bed flying and rolling over at the same time and I
closed my eyes so tight but the feeling was still there and I couldn't sleep no matter how hard I
tried. It took the pain away but brought its own kind of discomfort which was still a different pain
in disguise. After that experience there is no way I'll want to be in such position again. I'll rather
watch a chair flying in the movies than experience such crazy hallucinations beyond my control,
so then, no matter how much pain I felt, I'll hide it so I would not be administered morphine even
times the pain felt like a bell ringing in my head, I'll endure so badly and lie I wasn't going through
no pain and times when the pain defeats me and so I cannot hide it I'll beg for pentazocine instead.
You know the thing about fighting always is that you might be defeated sometimes but the ability
to get up and develop new formations to fight again and again makes a great fighter and as such
a survivor.
I have got one question for everyone reading this, DOYOU KNOW YOUR GENOTYPE? Why allow
yourself and someone you'll love so dearly go through everlasting pain when it can be avoided .I
have taken it upon myself to create awareness because I would certainly not want any more
innocent children to go through such pain physically, mentally and emotionally. Let’s all join
hands in building a chain against HBSS. Love shouldn't be an excuse for someone else to suffer
pain. Love doesn't have to bring such pain. SAY NO TO SICKLE CELL, disband when not
compatible, remember prevention is better than cure. Lets #breakthesicklecycle.
Yours truly,
Bimpe Shenbo.
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