I hate that colour.
No, I don’t have anything against mangoes, roasted plantain or Ghanaian taxis.
The thing is for as long as I can remember, I have been the girl with the yellow eyes.
‘Ei her eyes are yellow papa!’, a 27 year old guy would loudly whisper to his friend as they passed by me at the Political Science department.
‘Tɔ plantain chips. Ɛyɛ ma wo nni’, the plantain chips seller would offer as I used the GHC 2 note to gesture towards the cocoyam chips in her basin . She would proceed to give me a 30 second lecture on the properties of plantain and how it is good for the eyes, right before the trotro sped off. She meant well, in the typical Ghanaian ‘it’s none of my business but I care’ kind of way. You know, that kind of concern that makes a complete stranger stop to recommend an antidote for your screaming baby or pay for your fare if you accidentally left your wallet. Ghanaians mean well. She meant well.
The first time the coolest boy in my class spoke to me directly, this is what he called me.
Everyone in my class laughed. Even me. But my laughter was a mask. I was also crying inside.
It didn’t matter if I was first in class or if I could draw. It didn’t matter if I could out sing everyone in Music class. I was just the girl with the yellow eyes. All because of sickle cell.
I also hate that word.
Funny how Microsoft Word doesn’t even recognize sickler as a word.
When I was in class 5, I could not concentrate in Math class- simply because one of the girls said ‘They say you will die at 18 because you are a sickler.’ My palms became cold and my heart couldn’t stop pounding. I can only imagine how my parents felt when I asked them if it was true. Growing up didn’t make it any easier- someone would shout across the salon:
‘Dum AC no, ɔyɛ sickler oo!’ (Turn off the AC, she is a sickler)
Every single eye in the salon would then turn to look at you in pity like you were on your deathbed and you had not given your life to Christ, heading straight for the unforgiving flames in hell.
Studying for an exam always landed me in crisis mode. Always. It didn’t matter how much water I drank, how many folic acid tablets I took or how well I ate. I stayed away from PE, I always kept warm when it was cold and always stayed cool when it was hot. I couldn’t get too close to the water when we went to the beach. I couldn’t have kelewele or french fries like everybody else.
After a while, hospitals kind of become your second home. Regular eye checks, physiotherapy, blood count checks, the whole show. Your ward mates become your friends, some nurses become your foes. There was a time when I was convinced that I would marry a doctor. It was love at first sight with Dr Twumasi when I was 12. He always smiled whenever he came to my bedside. He made taking my pills feel like the coolest thing to do. There was even a day when he stayed overnight just to make sure I was okay after a surgery. He even had a special greeting for me: ‘How is my favourite warrior doing?’ Who cared if he had a wife and two kids? He loved me. I could tell from the look in his eyes when he came to my bedside.
Not every doctor was like Dr Twumasi. They didn’t have the patience to pray with me when the meds weren’t working. They’d rather shake their heads in despair like I was some lost case, like I wasn’t worth saving. There were days when I wasn’t sure if I was worth saving, to be honest. I remember crying myself to sleep and wondering why I wasn’t ‘normal’. There were nights when I would plead with the nurse on duty to take out the drip because my hand was swollen. I remember wondering if I was going to die next the day the girl in the bed next to mine died during the night.
Nurses are another story- some are great and some are just not called to that profession. I have had a nurse stay up and sing to me because I was in too much pain, despite the cocktail of painkillers in my system. I have also had a nurse refuse to give me water to drink at 2am, simply because she suspected that I was going to try to kill myself. I had to wake up at night and drink from the bathroom sink. I didn’t die that day either- after all, I was Dr Twumasi’s favourite warrior. I wasn’t going down without a fight! I lived through the night and reported her to her superiors in addition.
I try to live a ‘normal life’ and make as many memories as I can. I have friends and I cherish the moments outside the walls of a hospital. I definitely don’t entertain the idea of a crush for longer than 30 seconds. Yep, if he was not put off by my yellow eyes, or by the fact that I could not do this or that, or go here or there, or eat this or that, and we made it past the relationship stage, his aunties would wonder why he was marrying a sickler. His mother would beg him with tears in her eyes to find someone who wouldn’t give her imperfect grandchildren. We would break up and I would end up entertaining thought of overdosing on my medication. No, it hasn’t happened to me but I have seen it happen to other people and my heart can only handle so much pain at a time.
Funny enough, the worst part about sickle cell is not the medication, the pain or the not knowing. It’s the people. People like you. Yes you. Mr and Miss Educated. You who are so wide read that you know there’s something wrong. I must go to the hospital and get checked because you’ve read about it and you say so. And you, the one who just met me and couldn’t ask about my red top or what I do, or where I live or anything. You just had to ask about the one ‘flaw’ and tell me it’s not normal. Like I don’t already know that. No, you didn’t imagine me rolling my eyes. That was real. And you as well- you’ve known me for a while so it’s now okay to use those labels or express empathy by telling me how you have ” 3 of me” in your family. I didn’t know I came in multiples.
Of course, there is also always the ‘name calling’. The day you told Kofi that ‘chale your head bola o,’ that day you told the storekeeper that your friend, the ‘fat one’ would come and pay for the stuff , you were adding to the burden. Surely there is a better way to describe someone- a human being with a name, a personality, multiple gifts, talents and abilities, amazing creativity, and many other amazing complexities other than ‘the skinny one’, ‘Obolo no’, bowlegg3 , the one with the crooked teeth, sickler, retarded, etc etc.
They may not mean much to you when you say them. You’d probably even forget that you said anything, five minutes after the words tumble out of your mouth. It could even be just a joke but for the person it is said to or said of, it becomes something that the mind refuses to forget. Yellow takes on a new meaning. Sickle becomes more than just a tool for harvesting rice. Head becomes the only body part Kofi thinks about. Fat is significant. Teeth become the reason why the person never smiles. You become the reason why Maadjoa refuses to wear a skirt that shows her bowed legs.
Be kind. Use your words wisely.
Thank you for reading! Don’t forget to share the story as well as your thoughts with the hashtag #OurTaboo.
Author’s note: Today’s Taboo touches on the life of a sickle cell patient. It doesn’t have to be World Sickle Cell Day (19th June) before we talk about the condition. Remember to be compassionate to the sickle cell patients you know and be kind to everyone. Stay awesome, guys! ❤
The Taboo series is a collection of stories that highlight conditions and stories that are generally buried in Ghanaian everyday living. Each of these stories is based on a true story and is shared with permission from the persons who shared them with me. To share your own story, please email Keni at firstname.lastname@example.org or send her a message on Facebook, Twitter, Instagram or LinkedIn. The social media links are in the home menu above. Thank you!