My name is Modupe Babawale and I am living with Sickle Cell Disease. Shocked? Don’t be, just need you to hear my story.
Sickle Disease is a blood condition that affects the oxygen carrying molecule in the red blood cell, known as Hemoglobin (HB). This causes the normal oval red blood cell shape to assume a rigid and abnormal shape.
Ok so you all know the farm tool called a sickle, yes that one, that’s exactly how most of my blood is. Sickle cell Disease comes with a lot of health complications like stroke, liver diseases, and many more. Now that you all catch the drift of what sickle cell is all about, I won’t bore you with any more scientific jargon….that’s not the point of this piece.
My parents are both carriers i.e. AS genotype and didn’t know about that until I was born. And ever since I was born, my life has been characterised with struggle, pain, fear of death, pains and low self esteem even as a little kid growing up. Sickle cell took most of my childhood away from me. I didn’t experience all those memorable moments as a kid owing to the fact that I was always ill. I was miniature in size; couldn’t ride a bike (still can’t); didn’t have a lot of friends – most of my age mates couldn’t be around me as I was always sick. I had a very big head, yellow coloured eyes, thin arms and I looked very scary to other kids and they would run away because they thought it was contagious – they would often tell me that their mum said so and people like us are infected with witchcraft. I was often laughed at and picked on, believe me. This made me very sad, withdrawn and with a lot of low self esteem. I was over protected and even if I wanted to go out, my low self esteem would kick in and I would prefer staying home because I thought I wasn’t beautiful enough and most of my dresses didn’t look cute on me.
To be honest, I became very angry at my parents at a young age and also at God! I became a very rude and angry kid. I was always temperamental and for a little kid growing up, I had a very fierce temper! To my parents, I thought it was a deliberate attempt to bring me into this world to face pain, struggle and stigma. To God, they say He does everything for a purpose abi? So I’m wondering, God created me and His purpose was to make me live on drugs, blood transfusions, fear of death and painful bone crisis! Ha! God doesn’t love me, because if he does, he would give me a very good answer to all of my questions because I had a trunk load. I didn’t believe in Him and I shut people up when they talk about him to me.
Fast forward to my teenage/ adolescent years, I became tired of all the numerous criticisms, I was termed weak and couldn’t do all I wanted to do, I didn’t have my freedom, I was limited and my health was always an issue, why?! Getting into the University, there was no month that passed that I didn’t end up waking the whole hostel up because the ambulance had to come take me to the clinic! Not long, I became very popular because I was always sick. Dating was wahala as the guys would use that as an excuse to misbehave or cheat because you don’t matter and the opinions of a sickler girlfriend was no opinion at all, sigh!
Now it’s not my fault I have sickle cell but they don’t understand.
With all these frustrations, I turned all my attention to books! I trained my mind, I became a bookworm (still am), I became very studious, I can read everything and anything. Graduating from the university, I wanted to know more about sickle cell. I got a masters in Biotechnology and specialised in Molecular Hematology, I did a lot of research, I was preparing myself because I knew i was going to do something about sickle cell but I didn’t know what it was yet (still not completely sure to be honest).
I started talking about sickle cell disease, my health; I became proud of it (not of the disease per se but of myself) and with that I was able to break free from the stigma, the trauma and all that. I could tell people I have sickle cell without shedding tears. I had that consciousness of a warrior not a sickler bacause I am a fighter!
Settling back to the Country in 2014, I thought to myself: is there a sickle cell community where warriors can have a sense of belonging, a conducive environment where they can come to and express themselves without being judged? Its incidence is very high in Nigeria with about 4 million Nigerians affected. So I thought a sickle cell community is needed to make noise about sickle cell. With lot of thoughts and prayers, I created Nirvana Initiative.
With this initiative, I plan to break the silence about sickle cell and what it entails using personal experiences and how it relates to every aspect of life. I plan to use this to alleviate the stigmatization and ignorance associated with sickle cell, I plan to inspire other warriors and have them realise that they can be whoever they want to be, against all odds.
To all warriors ~ this is a movement! We are tired of pity, criticisms and ignorance. There are a lot of things that should be done about sickle cell but no one is going to know if we don’t speak out. Don’t suffer in silence, join me. This is a community designed to be there for warriors anyday, anytime. We are family, we learn from each other and with your help we can create a strong sickle cell community that will fight this disease and make life easier for generations to come because believe me, sickle cell is here to stay.
Over the years, I have mended my relationship with God and with His help and grace, I have created a healthy self esteem for myself and I want all warriors to do same, that’s why this organisation is an extension of myself. I hope to inspire people with my story and share not just preventive measures but how to live a beautiful life with sickle cell disease.
Today, I define my illness, my illness does not define me. So I say, join me in this journey, I promise to it worth your while…so what do you say??…
Signed: Mo #Warriornotsickler.
Contact : 08094393646.