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The Adult Child struggles with a genetic blood disorder

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I only started openly discussing being born with Sickle Cell Disorder a few years ago.  Before then, it was just on a need to know basis. If you weren't family or if you hadn't helped me through a painful crisis,  you didn't need to know. I'm not ashamed of it and I was never taught not to talk about it. In fact, my parents never really taught me how to speak to others about it. They were just busy trying to keep me alive and paying outrageous medical bills.

I am also not sure that I know how to discuss the topic without avoiding pity. There's that moment when people discover and they give you "eiyaaaa eyes". Then you now start feeling like an egg,  a breakable sometin shaaa.

 

Pity is not the same as empathy so I do appreciate the people who are empathetic and still treat me like a normal fully functioning human being.

It's also not easy explaining to some people why your leg hurts but you didn't fall down or hit it against anything or how you could be fine now and in the next minute, you're rolling on the floor/bed screaming in pain. 
H'aunty! H'uncle! Das jus the way it is mehn

It's strange behavior to some people. You could just be seeking attention, or maybe you're a weakling, you're soft. You need to man up! Eheeeeen!  To that Ghanaian nurse who was yelling at me to stop crying and behave myself years ago at North Ridge clinic in Accra; "no that is not how Nigerians are! How dare you Madam!!! I don't know how you became a nurse if you do not know how to handle a patient in pain and... your wig was ugly"

It's World Sickle Cell day and so I thought I would give it a shot and share a little bit about my experience being Hb SS. The whole science of it, dumbed down, is that the disorder is genetic and it affects your red blood cells in such a way that they take on a different shape when they're produced. That's the sickle shape. You know what a sickle is if you're a farmer or if you remember your Agricultural science. 
This is the farm tool
This is an illustration of what the red blood cell looks like

 Because the red blood cells are so oddly shaped, they have difficulty passing through blood vessels and such and that's what causes painful episodes.

Fun fact: I have had a painful crisis nearly everywhere I have been to: church, school, my office, sleep overs, your house(i might have not told you), the airport, every country I have visited.  I have sha never been in an ambulance yet so...score!!!!

There are different kinds of painful crises and they generally affect the limbs, joints and such. SCD also makes you susceptible to infections and there are complications from it and that's what kills most people living with the disorder. I have had only one complication: Acute Chest Syndrome and recently, a chest infection that affected my aortic valve, I was told (I was out of it a lot so pardon me if i was not listening).

Ironically, stress is a trigger for a crisis which is really messed up because living with the disorder is a very stressful condition in itself. You will just be avoiding stressful situations like you were in a minefield. You can't be too hot,  you can't be too cold, you can't exert yourself emotionally or physically(alas, my dreams of body building have been dashed), you have to drink a tank of water every day(a constant struggle of mine), you have to take drugs everyday for the rest of your life(Codeine is nice, i like codeine but it has killer side effects). To crown it all,  I'm NIGERIAN! That's stressful on it's own mehn.  We have had rubbish power supply in my area since May! Fashola, what's happening??? Eko is starting to baje oooo!

With all the depression, pain and fear that's  attached to having this disorder, I am still grateful that my parents had me. I see a lot of people comment on blogs or posts about SCD and advise non AS and AS pairings so that there will be no more children born with SCD. That's fantastic. Someone even suggested terminating a pregnancy once it was discovered that the baby would be born with the disorder. 

Alrightyyyyyy then! I have not fully come to terms with how I feel about people trying all these things just to avoid having a child like me, but I do understand the fear. However, as cautionary as people should be, they should also be better informed. There's this thing called probability which means that it's not certain that whenever couples with the AS genotype get together, they will birth a "sickler", it's a chance. In fact,  it's a 25% chance. There is still a one in four chance that your child will not have the disorder.  Still I respect that you may not be willing to take the odds. Just have all your facts first. Visit a counselling center (National Sickle Cell Center, Idi-Araba) and make an informed decision.

NO this does not mean your fourth child will have SC or that one of your children will. It means there is a one in four chance that you might have a child with it and a one in four chance that your children might be affected. Also means there is a one in two chance that your children end up being AS. Chance chance chance chances!

We have come a long way with information on the disorder from when we used to call children with SC "abiku" and "ogbanje". There's even a cure now, a bone marrow transplant so that you will be producing fresh, juicy, sparkly, well shaped red blood cells. Sexy red blood cells. It's a very manageable disorder. You can still live life to the max, just...at your own pace.

One thing people living with SC need is a strong support system, so check up on that person you know who has this disorder once in a while. Don't go and be giving them "eiyaaa eyes " oooo. I know  that there's a special place in my heart for everyone who's ever helped me through a crisis.  I'm naming all my children after you.

They call people living with SCD "warriors" now. That's apt because it is a battle. It's been 27 years(19! I mean 19 years!!!),  no stroke, no leg ulcers and amputations, pulmonary hypertension, eye damage...etc (just a few complications from SCD) aaaaaaand i walk out of every hospital! It's clear that I'm definitely winning this battle.

A Nigerian film maker and family friend of mine(i must famz!) did a series of interviews with people living with SCD and released it today to mark World Sickle Cell day. Check out the first interview.



Thursdays are for throwbacks

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Today's throwback will feature those popular songs of the 2000's that you sang with all your heart but didn't understand the meaning. Maybe you didn't know the lyrics o, maybe the song was in a different language but when the song came on everyone was like:


and we sha didn't know what we were saying

So in no particular order, let's start with this popular number:

1) "Oye Mi Canto" N.O.R.E. ft Nina Sky, Gem Star, Daddy Yankee and Big Mato

You might be already yelling "Boriqua! Morena (I used to say "Borera") Dominicano! Colombiano! For some reason "Reggaeton" became popular in this part of the World for a bit in the 2000's and this was one of the popular songs from that genre. We would be belting out the lyrics as if we knew what "Boriqua" was. It means "Puerto Rican" by the way (yay Google!). At that time, I didn't care. This was my jam and i would mumble through all the Spanish bits and yell out that "Woah ooo" part.

Side note: Whatever happened to Nina Sky? They were so cute.



2.)  "Who let the dogs out?" Baha Men

This Grammy award winning number(Best Dance Recording) was very popular during the early 2000's. Even our parents knew the words to the chorus. At least my parents did. Now the song was recorded in English so we could understand the lyrics. However, did we know that the original writer of the song intended it to be a male bashing song? Here's how he explained it:

 It’s a man-bashing song.  I’ll tell you why.  The lyric of the song says, “The party was nice, the party was pumpin.’” When I said the word “party” I was being metaphorical.  It really means things were going great.
The “Yippie-Yi-Yo,” that’s everybody’s happy, right? “And everybody was having a ball.” Life was going great.

“Until the men start the name-callin’ / And then the girls respond to the call.”  So the men started calling the women “skank” and “skettel,” every dirty word you can think of.  The men started the name-calling and then the girls respond to the call.  And then a woman shouts out, “Who let the dogs out?” And we start calling men dogs.  It was really a man-bashing song.

There is another theory that the Baha Men were referring to ugly women in the party and that's who they were calling "dogs" sha. I know for sure that I had no idea about the real song meaning. I was just happy chanting "All doggie hold ya bone, all doggie hold it!"

You know, I read somewhere that the real lyrics are "Who let the dogs out? Woof! Woof! Woof! Woof!"(you know? like dogs barking) but it will always be "Who let the dogs out? Who? Who? Who? Who? Who?" to me.




3.) "Gasolina" Daddy Yankee

Reggaeton is baaaack! So Daddy Yankee was to Reggaeton as Sean Paul was to Dance hall music. When you heard "A ella le gusta la gasolina!"(real lyrics)/"hey la le hutala gasolina!" (my version), you responded "Dame mas gasolina" (real lyrics)/ "Damy man gasolina!"(my version). I was not interested in the meaning of this song, I just wanted to turn up to that fast tempo part that was in my opinion the best part of the song.

Damy man gasolina!



4.)  "Like glue" Sean Paul

I miss the Sean Paul era so much. He gave us so many incomprehensible hits, had us in a dance hall frenzy. That Dutty Rock album was fire and he was sooooooo fine.

*love sigh*

 I'm picking "Like glue" for this list because it was the one I didn't understand the most. I didn't understand Jamaican patois and Sean Paul used a lot of it in this song. I mean what is the meaning of this? "just gimme di gal dem, now dem all a pressure mi cellular; seh a mi a di dappa dem waan fi be dem big poppa". It was just so catchy, you didn't care what he was saying, you just wanted to dutty whine. He always had some hot steppers in his videos too.

This was a jam and a half.




5)  "Premier Gaou" Magic System

This is arguably one of my favourite songs ever! The first time I ever danced at a party was to this song. Everyone was so surprised and impressed, they started spraying me o. I took home N5,000 that day. That amount of money was a big deal to a small child in those days. I will never forget. The song is sung in French. I took a few French lessons and learned the  meaning of the lyrics to the song. So the song is basically about this babe named "Antou" who was basically a "ho". She left him when the money left and resurfaced when he had a hot single on the airwaves. Typical "runs girl/thot/whatever they're called these days". My favourite part of the song is:

"J'ai dit chéri koko qu'est ce que tu veux manger"  He's asking her "my darling, wetin you wan chop?"
"Sans même hésiter Elle me dit poulet braisé"  She sharply said she would eat barbecued chicken. See her mouth
"J'ai dit chéri koko c'est poulet tu veux manger"  he's like ehen, na chicken you wan chop
"Poulet est trop petit ca peut pas te rassasier"  he's like chicken too small. dat wan no go reach you
"C'est caïman braisé, je vais te donne"  na barbecue caiman(some sort of reptile) naim i go give you
"Kedjenou d'éléphant o, tu vas manger"  is Kedjenou with Elephant that you will eat! Nonsense!! *Kedjenou is an Ivorian dish made with chicken and vegetables*

Antou was like:





Which songs did you make up your own lyrics to? Let me know in the comment box.
Sings in gibberish

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