I was born a sickler. There’s no other life I’ve known other than the one I live daily which revolves around hospitals and drugs. It’s been tough being a sickler because there are a lot of hurdles to cross which will be relationships and psychologically within oneself. Having friends that will accept you for who you are, friends that will stick with and stand by you through thick and thin. I have managed to come across such friends and I am grateful to them but their sticking around always came with a price. Especially when I was at the University during my undergrad days.
Growing up, I took different kinds of drugs, I even nicknamed them because it was hard to keep up with what drug. I always wondered when I was small why I had to use such drugs but as I grew up, I figured out the reason why. My parents were only trying to preserve my life because sicklers don’t get to grow up. They die because of their crisis. So the race to beat the odds began. My mom’s inspiration was and still is the 90-year-old sickler who happens to be my ex-schoolmate’s grandma.
I can’t remember precisely when my mom met this legend but she got to talking with the woman to find out what her secret to her long life is and honestly, the next insane and disgusting idea for my ‘race to beat the odds’ was unveiled. I had to drink my urine. Extremely insane and disgusting because why will someone drink what their body is passing out? I think I forgot to add that I am a stubborn child. Very stubborn so I refused to drink my urine. I will not be caught dead doing that. So, I went back to my concoctions and folic acid and Jobelyn and various other drugs from GSK. I honestly don’t remember their names and I will get to why.
I scaled through my education beautifully despite my constant trips to hospitals and various carryovers because of my admission to hospitals. At 23, I was already a Masters graduate. I’m thinking of going for my PhD but that will have to wait. I already got used to the fact that I am a sickler because all the mentions of cures and all don’t interest me to be honest. I mean adjusting to the fact that I can lift a heavy object and not suffer the consequences a week later scares me. I am fine this way. I have made a life for myself with my genotype and I know with God on my side, I will continue to make that life.
Except I didn’t believe that last year when I went into a coma.
On the 14th of November 2016, I had a really terrible crisis where I learned that I gave up for a few minutes and my mom had to perform CPR to bring me back and when she did, I asked, “why did you bring me back?” My mom couldn’t take it anymore so she had to take me to the hospital around 4am thereabout. I remember going in and out of consciousness because I was sedated, I remember having a little kid with his mom and grandma in my ward but I don’t remember anything after that.
I learned when I finally regained consciousness that I’d gone into a coma on the 17th of November, I’d been taken for an MRI to see what was actually wrong with me and it was discovered that I had cerebral malaria, and a lacunar infarctus which I later learned was a stroke and I was in my early twenties. I was a lost cause according to my medical reports.
It was a miracle that brought me back. The doctor told my family that if the last resort he was going to use for me didn’t work, then I’d be declared brain dead but I beat the odds.
I regained consciousness and the doctor still told my family that I may never use my limbs again. I had a physiotherapist come teach me how to use my hands and legs again. I have never hated myself more for having these things because just when I am getting comfortable with the idea of being a sickler, a stroke had to be added to my CV. I was at my low. I had gone from a mature young girl to a toddler because I had to be wearing pampers and I had to have POP round my neck because my neck wasn’t stable. I also learned that I got seriously injured while I had a catheter in me.
Worst of all is I forgot my family and my friends. My true friends. I forgot everything in my life. Everything I loved, everything I hated, everything that mattered to me, I forgot them all. My uncle came to see me at the hospital and he wept. I’ve never seen my uncle weep save for when his mom, my grandma died. That was how bad it was. I was placed on a six-month bed rest where it was hell, literally. I couldn’t keep food down, and I couldn’t do anything else, all I wanted was to sleep. I just wanted to sleep.
Slowly, with determination, I remembered everything about my life but I also decided that I was going to turn my life around. If God thought I was worth bringing back, then I am going to live right. I will try to live right.
I’m grateful to God because He gave me a family that never gave up on me. He gave me my friends.
I don’t know how this story is going to inspire someone but if it will, if you’re a sickler out there, honestly, I think it starts with you making a decision not to die. Making a decision to live and shame the world and their opinion of us.
Secondly, you have to live right. If you don’t think you’re worth it, God certainly seems to think otherwise.
Thirdly, surround yourself with good people. People that love you, inspire you, never let you think low of yourself at any given time. People that bring you up when you’re down. Lastly, do the things you love. I dream of becoming a writer. Paint, draw and sing, anything that will take your mind off of my difficulties. Read:As A Sickle Cell Disease Patient, I Have Endured Countless Hospitalization and Surgeries”-Dr. Lakiea Bailey
Written by: Morohunfayo Olubusola Iginla for Diaryofanaijagirl.ng