I’m ever thankful to God for leading me to the project I undertook for my thesis: Researching Sickle Cell Anaemia. I am grateful to all of you who filled out my questionnaire. I got so much rich information. I learnt so much, so so much.
I have also been changed. It took me down memory lane, reminded me of people I had not wanted to remember.
First there was Chi-chi. Funny I can’t remember her surname right now. She was the daughter of my mom’s friend. I was 8 to her 18. I can't remember the details of her face but I do remember she was lanky and fair. Chi-chi was always full of life, laughing all the way and trying to engage precocious me. She was my grown up hero….except when she was sick. I never saw her ill but I heard the whispers ‘another crisis’, ‘bad’. Then one day I eavesdropped on a conversation between my sisters and heard them talk of Chichi’s illness and how it was a pity but she was likely to die at 21.
It was a blow to my heart. My puppy love shriveled in fear. I remember how I started watching Chi-chi. And started a mini countdown in my head...gone in 3 years.
I told my little heart to love her less, cause even then I understood that loving too much causes heartbreak. I also began to avoid her place. Thankfully, I can remember saying anything hurtful to her as children are wont to but in retrospective, I wonder if she noticed the stares, the pitying glances and people who avoided her cause her ‘life represented death’. How very awful lack of information is.
I don’t remember what happened to her cause the family moved away from Aba the next year.
Then there were Wunmi Ogundiran, Ekom Ukpong, Seun Oguntade. All three were classmates from secondary school, living with the cell. Ekom’s bunk was adjacent mine in JS1 and many a time I escorted her to the school clinic. I don’t know where they are now and I am trying hard to convince myself that Sickle Cell Anaemia has not claimed them.
I also remember Joke, a JS1 girl who died when I was in SS2 from a terrible crisis. We only had a small clinic in school, ill equipped to deal with a child who developed a severe crisis at 9pm in the night. She was buried there at school and that was my first funeral.
Fast forward to 2008, during mybanking days, I met a corper who carried herself ever so wonderfully and daintily. Bissy is 5’8, chubby and ever so chirpy. I did notice she was very careful not to exert herself(that’s where the dainty came from) but I thought she was just being ajebo or a lazy corper.
Nope! girl was managing her illness the only way she could, to avoid a crisis!
I remember one day in the pool car we were having a rousing argument about ‘how carriers who marry each other should be shot, diced and quartered’, ‘how people who have SCA must hate their lives and their parents’ etc etc. Bissy was quiet, listening and smiling. Then she goes ‘Ginger, I hope you know I am a sickler and contrary to your opinions I do love my mother very very much. I don’t like being sick but I love my life all the same’!
Bissy 100: Ginger 0.
I never forgot that lesson, and for once I didn’t have a comeback. I loved that girl even more.
It was like an epiphany:
Sickle cell does not always manifest physically. Yep. Not every slim, yellow cornea colored person has SCA.
Someone with sickle cell lives a normal life most of the time; cares about fashion, parties, boys, careers, etc etc
Someone with sickle cell can be whatever they want to be
Someone with sickle cell also wants a woman/man to love, marry and raise children with.
The course of illness varies in each person, Some mild, some severe.
With proper care and management, someone living with SCA will live as long as they were destined …. just like we all need to care for our bodies if we want to live long and healthy lives!
I never treated Bissy in any way different following her revelation but happily covered for her when she needed time off. But my best advice to her when she asked me if I thought banking was a good career for her from my experience was, ‘darling, you need to do an Usain Bolt here. You don’t need this stress :).
Fast forward to 2011 and I’ve discovered so many more wonderful people living with the cell. There is Tosyn Bucknor of These Genes and a blogger, most of you know Nutty J, another blogger. There is Toyin Adesola of ‘Touch a Cell’ who was interviewed recently on Moments with Mo, Wande, a brave brave lady who is currently undertaking bone marrow transplant to rid her body of the troublesome sickle cells (you can read about her journey here) and Tosin Ola-Weissman of Sickle cell Warriors (don’t you just love the idea of brave warriors fighting sickle cell and hacking off its lethal curves with a sword?!). You should visit her page sometimes and read the interviews of interesting men and women who have the cell but have refused to be defined by it. There’s never a gloomy moment there!
So why am I writing this? First, this month of September is Sickle Cell Awareness month. Second, I was sitting here writing my thesis discussion and all these thoughts came flowing.
Twenty years ago maybe there wasn’t much hope for those with Sickle Cell cause of lack of appropriate medication, not enough counseling services, poor understanding of health personnel, racism etc. But as each new day comes, new discoveries are being made and hopefully one day in the near future, there will be a super pain reliever and smoother chelating system and crisis will be a thing of the past.
But while we wait, let’s make the world a more welcoming place for those living with it. I have heard statements like:
“I am AA, but I can never marry a sickler”
Yet I also hear, “Carriers who marry carriers are selfish”
Then “Carriers should not abort sickle cell pregnancies. Abortion is murder”!!
“If carrier parents were foolish enough to get married then they had better be prepared to give birth to the child and raise it”
Finally you go on to say this about the child born with sickle cell “They hate their parents and wish they had never been born”. So many contradictions! Much as we preach prevention and say do not abort sickle cell pregnancies, we must be more positive about Sickle Cell!
I notice this strong theme of blame for carriers of Sickle cell gene. I was on that camp before, but I have seen the light now. If that is where they have found love why judge? There are options available to assist reproduction like adoption, prenatal diagnosis/selective termination, adoption, IVF using sickle free eggs and sperms, surrogacy innit?
Moreover, Love is hard enough for single ladies and guys out there (sorry I have to use the cliché). Let’s try and celebrate those who have found happiness in each other and wish them well or what do you think?