My Life in the SS Lane

No holiday is as perfect as the ones where you get to enjoy Grandma's pampering instead of Mummy's scolding for a whole week... and it is even better when Mummy goes away and Grandma comes to visit. Because then, you get the luxury of your cushy bed, all your video games, the PC for Solitaire (my obsession then) and all your favorite food and the tender loving care of your favorite Granny.

It started out a perfect day like that. I was a happy 7-year old bossing her siblings around and doing nothing meaningful. I remember I was by the large living room windows overlooking our front gardens when I felt a dull excruciating ache from my right knee down to my toes. I can only attempt to explain it to you: imagine that your bones are thick pipes filled with a creamy yellowish liquid (they actually are, kinda, that's your bone marrow). Now imagine that the creamy liquid starts to heat up, never really getting hot, and that the heat moves up and down in waves through your pipes. Because of the heat, the pipes get hot too, from the inside, (I imagine they start to glow an ugly red color too) and as the heat moves in waves the pipes expand and contract too, up and down in a wave motion, but only slightly, just enough to almost kill you...

That was what I experienced. Within an hour, all my limbs were on fire. I was massaged, overdosed with painkillers and prayed on like never before. As I lay on my sweat-drenched bed writhing and whimpering helplessly I saw tears on the faces of my grandmother, my 5-year old sister, my 2-year old brother and the househelp. There were no cellphones when I was 7, mummy would not be calling until later in the evening, and daddy was away at a construction site somewhere, out of reach.

"Maybe we should call Yvonne and Tyrone's mummy" my sister chimed in, rubbing my thighs with her little hands.

My grandmother ignored her suggestion with a sigh. What could our mum's best friend do that we hadn't done? By the time my mum called later that evening, I could only moan weakly into the phone. She started to cry, and promised she would be on her way as soon as it was dawn in Kaduna. The rest of the day was a blur: Grandma prayed for hours against spiritual attacks, but after a while she broke down, admitting that she was afraid and we needed some help. At 10pm she carried me on her back and walked the distance to the Teaching Hospital a few miles from our house, praying and crying and walking. Needless to say, there wasn't much help the hospital could give us. Nurses were tired and irritable at that time of the night, doctors were nowhere to be found. A nice matron offered my grandmother some sleeping pills and her cot for us to sleep. As I fell asleep I heard her whisper to my grandmother.... "Crisis le leyi o, mummy. Aromol'egun. Ko si ogun fun iru e" (This is what they call a Crisis. Rheumatism. It has no cure.)

Before that day I had no idea I was born with the dreaded SS genotype...

I lived like this for about 5 years, the pains came, I took Ibruprofen and a mixture of other drugs and cried myself to sleep until they went away just as suddenly as they came. Sometimes they lasted a few hours, sometimes a few days. Other times it was not as intense as that first day, just a dull ache that prevented me from running around as much as I wanted to or smiling as much as I used to.

There really is nothing to make it better. Hot and Cold compresses did not do much, massages really did not help, pastors prayed, my diet was changed, I used about 9 different pills everyday to keep my blood count up. But it was a part of me, this curse.

But the story gets better. One day I had to do a routine blood test for school. The doctors already knew what to expect, but when my lab results came back as genotype: AS everyone was confused. They took so much more blood from me, ran so many more tests, but the Sickle Cells were nowhere to be found. I haven't had those pains since then. Sometimes there's a twinge of something, but I'm starting to think it is just a figment of my imagination. I thank God every day for this miracle, my wonderful, inexplicable miracle. Till date, apart from that one night in the Matron's room I have never spent a day in a hospital bed, never needed a transfusion of blood or water, and I haven't been sick more than once a year, if even. But I never take it for granted.

That is the story of Me...

My friend Franque inspired this post with this article today, read here. Even though my family was spared the pain of having children who suffer from the horrible effects of the SS genotype, we should all be aware of the horrible nightmare that it is in our society. So many people die from it, and so many more suffer all their lives from the terrible symptoms that come with it. My parents admit now that getting married knowing the chances they were taking was a terrible idea. I suffered for their choice. Marriage is hard enough. LIFE itself is hard enough. All that 'Love' evaporates when life gets real and you have a child whose suffering you know could have been prevented. And no amount of happiness now is worth that life of pain... Think about it.