REMEMBERING SICKLE CELL - FATIMA UMAR(6 YEAR OLD)

I think it’s about time I wrote about one of the unique things The Lord has bestowed upon me since birth; sickle cell anemia. I have had it in mind for a long time but each time I try to write something I get stuck right at the start. It is a bit complicated to write about something that I feel I know nearly so much about. But I have to start somewhere. So, here goes….

The very first crisis (pains in joint, back or chest) I can remember ever experiencing was when I was six years old (I may have had before that, I don’t really know). I had gone in for my evening bath and decided to fill up a brown plastic basin with water to “swim” in it, LOL!

As it so happened, I over stayed in the water with my navel downwards immersed comfortably in the water basin. I might have been in there the whole night if I hadn’t started feeling some very uncomfortable sensations in my back. I came out of the water, my fingers and toes all shrunken, wrinkled and ‘whitish’. I dried myself, rubbed baby oil and put on my night gown. That ‘pain’ was still not subsiding; in fact it seemed to be ‘beating’ faster and harder. OMG, what is this? What is happening? I was asking myself, I was so restless, I was scared to tell my mommy and besides she had a guest.

But bless her heart, she noticed something ‘abnormal’ about my behavior; I wasn’t sitting down quietly and I was whining with every breath I exhaled. She asked what was wrong and (as usual) my tears poured out, “mommy my back, it is paining me”. She said “You stayed in the water too long, I kept on calling your name but you didn’t answer me” then her guest suggested we rub a hot balm on my back. We didn’t have any at home, but thank God she did. She was also our neighbor. By now I was already flooding the house with tears….

The kind lady went home and came back really quick, but it seemed like a whole hour passed to me! The balm was massaged onto my back; boy was that the hottest thing on earth or what?! And the smell of that thing, urgh! It helped clear my eyes for more tears, I was a lucky kid! Well, after they had rubbed it on, I put down my gown and then a piece of cloth was tied around my waist for extra warmth. I don’t know if I was given any analgesic. I don’t remember because I took analgesic almost daily, I had headaches day-in, day-out. The pains I went through as a child, I do not wish it for any child EVER.

At this point, I would really like to explain to best of my ability how a person suffering from sickle cell crisis feels. This is an emotional write-up…forgive the smudges J The pains in the joints differ from that of the back and chest. Oh, don’t get me wrong, they are both just as bad! Any ways, as a kid, my chest and back were usually the target of the crises! (I really want to know why!?).

The back pain would start as a very slight tremor, making me straighten up involuntarily. It continues to pulsate, as if getting force from some unforeseen source, and then BAM! I’m hot because I break into bouts of sweat and if the fan or air condition is turned on, the pain increases geometrically. By this I mean those ‘tremors’ turn to ‘earthquakes’. And from what I have observed as an adult, kids have a very high threshold for pain. So you can imagine seeing a child crying and screaming in pain, grabbing any available piece of cloth to tie round his/her waist, or just running back and forth not knowing what to do…. *pause, rubbing eyes due to stinging tears* ……saying “mommy my back, remove my back” and the mom confused saying “okay come and lie down let me remove it” this is not funny! A mother that has sickle cell as kid/kids is a SUPER HERO! Anyways, she rubs the hot balm on my back (just in case we have forgotten, it’s MY story) saying “I am removing your back, don’t worry it will stop paining you soon”. Those comforting words alone, did a great deal of help, no child wants to be yelled at especially when they can’t control what they feel and how they react to it.

Maama (my mommy), had two sickle cell anemic patients as kids. I am the first and my younger sister, Mona, who died, August 17, 2001. So going to the hospital occurred weekly. And I learnt at an early age how to ‘doctor’ my younger sister when her crisis started at night. I could relate to her and she could relate to me; we were two peas in a pod. She was and still is my favorite sister..…. I shall tell her story some other time, Insha Allah.

Sometimes, the pain subsided after being rubbed, sometimes I had to take analgesic and sometimes, the clinic or hospital was the only solution. I was regularly receiving treatment for malaria, not even talking about the prophylaxis I was confined to. I mean, I get annoyed thinking, after the daily and/or weekly doses of prophylaxis for malaria I still had to take quinine as pills or injection. I always went for injection (yes! brave like that). I had to be put on drips and anti-biotics. In those days, most of the time, the normal needles were used to set an intravenous line. It sucked (N).

As for the pains in the limbs, it usually starts out as a feeling of numbness, I’m hoping to relate to everyone here now, so pay attention; have you ever slept on your arm for long and woke up feeling like ‘ants’ have invaded your hands? It feels numbed…. Or have you ever sat on your legs folded underneath you for quite a while and then you start to experience some sort of ‘pain’ which makes you want to jump up quickly? You have? Oh that is just lovely! I have the best readers in the world *broad grin*. Well those pains are just how the crises of my limbs feel like when they are starting.

I think I will save this for another story *wink*