World Sickle Cell Day

My name is chukwuka,a final year law student of ABSU, I’m a sickle cell warrior.
Nobody truly can understand the pains of those living with this ailment, not even the doctors, the pains we endure during crisis is worse than labour pains, we experience pains on daily basis.
It was the day before a special family time(a time all members of my family get to sit together, dine, talk, and share special moments together). I was very excited, yet worried at the same time. I knew in my gut that I would probably be sick by time of the get-together, as the pain (slight) I had been having for days had not let up at all. I was dehydrated and yellow in the eyes (jaundiced) and I just knew it would not be long before I got so weak I would not be able to get out of my bed
Let me first note that I’ve always been trying to hide my pains from others, (even my family- though I never got to hide it from them, as they already know how I feel, even without telling them). I just never told anyone I was hurting unless I couldn’t take it anymore. I didn’t want to be anyone’s problem,(as I always felt I was a problem to the family, because I was always the only ‘sick person’, spending days and nights in the hospital- being the only child affected by the SCD). My promise to myself even while in school was definitely not to let anyone know my big “secret” (- because it doesn’t tell on my appearance as I’m well built).
I was ashamed of not being normal(as people keep saying “why are your eyeballs yellow?” “do you suffer yellow fever?” “Why are you always sick”) and never wanted anyone else to know this lifelong illness I had.
I cried secretly when I could and tried my best to act normal in front of everyone. I never wanted anyone to find out how vulnerable or weak I actually was. The only good thing I can think of from doing that is that my high tolerance for pain now is so significant!
Anyway, on the day of the get-together, I felt as if I got crushed by a heavy duty lorry. I didn’t want to move an inch in bed(as my legs were losing its strength speedily) but I struggled to get out of it. For those who don’t realize, people with Sickle Cell can have pain almost everyday. That is my reality. For me, EVERYDAY I am uncomfortable somewhere. So, when I got out of bed my facial expression showed I was in pain, as my dad sighted me he said to me “We are going to the hospital right now, you hear me?”. I didn’t even fight it; he just got up and carried me straight into the car(as I could barely walk and was already fighting hard not to burst out in tears, as the pain became so unbearable.)
I ended up being admitted to the hospital that day (as I’ve been known as an “emergency patient” in the hospital) I ended up getting fluids, and different medications through a PICC line I had. After four days of going in and out of drug induced drowsiness and being babysat by my parent interchangeably, I felt good enough to go home.
After arriving home, I began to wonder “why me”, as I’ve had so many visits and stays at this particular hospital and now one of their most popular patients. I kept questioning God why it has to be me, as my parent and younger ones has never stepped into any hospital for treatment. I began to feel like I wasn’t part of the family.
As years went by, I knew more about my problem (Sickle Cell Disorder), the “must do” and “never do” Even though I’m grown now and totally know how to take good care of myself. I owe it an obligation to advice intending couples on the need for genotype compatibility. Yes! There’s known cure for the Sickle Cell Disorder, but you shouldn’t know what it feels like raising a child with such disorder.
I’ve lived in pains and aches for almost all my life, and it’s not an easy thing. Indeed life is beautiful, but you have to paint it as bright and beautiful as you want it to be. And the first step to doing so is by knowing your genotype and getting married to someone whose genotype is compatible with yours.
For those whose relationship ended due to genotype incompatibility. Take heart and be strong, trust me you won’t want to raise a child suffering from Painful episodes (crisis) such as Acute Chest Syndrome, Chronic Pain Syndromes, Vertebral Body Collapse, Leg Ulcers or Arthritis

This Is The Best Moment To Be Alive

I’m a survivor

DISCLAIMER: this isn’t a true life story, today is world’s sickle cell day, Nigeria has one of the highest number of patients living with the condition (blame it on illiteracy n ignorance)
everybody should know how compatible their genotypes are before marriage, no love is enough to bring this kind of pain on your offspring…my prayers n thoughts goes to everyone living with it,
you’re brave, you’re a warrior and a survivor.

(C) Dandelion Udechukwu Dumas

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