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Monday, August 17, 2015

CELEBRATING MARYAM AWAISU

15th August, 2015 was a very big day for me, sickle cell supporters, well wishers,  friends and family of Maryam Awaisu and Maryam Awaisu herself as she launched her very first novel on sickle cell titled Burning Bright. It is a fictional but extremely real and accurate story on the life of Nadia Habeeb who was born with sickle cell anemia, how she struggled with it, how her academics, work, social, family and even her love life were affected both negatively and positively by this genetically inherited disease. But, I'm not here to tell you, my dear readers, of the story but to celebrate Maryam whom I'm so very honestly proud of. Words can't, but will have to suffice in expressing my joy, love, respect and appreciation of this amazing, young, talented and humble lady.

I met Maryam Awaisu on line (Twitter; @Ice131Queen) when I was in Egypt in 2012 and I'm guessing it was under some sickle cell awareness campaign (very bad memory, I have). She was so excited by this blog and had apparently mentioned me to every family, friend and colleague who was willing to listen. And when I returned I was, still am being, overwhelmed by the degree of welcome, love and hospitality Mommy Awaisu showed me. I can say anywhere, no strangers (except in-law's) became family faster than myself and the Awaisu's. Now anytime I have to be in Kaduna, I have a home with no worries or stress. And it's all thanks to the way, amazing Maryam or rather, Maryamazing presented me to her family.

Now, I can't really tell you this or that particular thing about Maryam but on that day, 15th August, I discovered a lot of things I never knew with the exception of one thing I've always known about her; she is a kind, compassionate girl. So many people tend to disagree with me on that saying she's mean and evil but hey, who isn't? Anyways, all of us who were present on the book launch of #BurningBright and watched the slide show of her very young and very fruitful life were taken unawares, not really, but I was stunned, to say the least! All the good work she's done to help the needy and sick and how she's never bragged about them. For a person to organize an event to raise money for others is simply godly. It requires strength, patience, understanding and most of all very good health... Don't forget Maryamazing is a sickle cell patient and doesn't need stress... But she stresses herself so those less fortunate than her can have a day of hope or even weeks or years, when she can help it. We saw she's been her class valedictorian since secondary school days, even securing a scholarship to study in the United States of America which at this point, permit to say "Ahn Ahn, Wow!" How can you not be impressed by her?!

So much about her and so little I can tell you, but I'm not worried for good work gets its publicity by itself without much hassle and those whose lives she has touched and will still touch are forever never forgetting Maryamazing! As for me, I am eternally thankful for the day Allah pushed her in my direction so I could be a part of the first of many more special days to come, in shaa Allah and I know many people have said it but I am really very honestly and sincerely proud of her. And it is such a great honor to have been part of her special guests at the event and a part of her family.

I celebrate you, Maryam Awaisu. I love you and I am completely inspired by you!

PS: We're out of stock on hard copies of #BurningBright by Maryam Awaisu but you can order online for your digital copy on Amazon amzn.to/1Jj3ZBI. Thank you for the support 

Tuesday, August 4, 2015

JOURNEY OF A GOLDEN HEARTED SOLDIER

Fathoming what suffering really is can be very relative; depending on the type and degree of suffering one has experienced and had to deal with firsthand. For some it is waking up with a pounding headache, the prick of a thorn in their flesh, or the feel of something very hot upon their skins or tongues, while for others it is a lifelong experience of needles, pills, an endless array of hospital beds, moving and dealing with pains from the insides and outsides of their bodies on a daily basis.

The latter is the case of Bashir Sidi Ali, a 22 year old final year student of Kaduna state university. “I was diagnosed with sickle cell disorder when I was six months old, and ever since my life took a very painful turn. Haha! Actually it never turned, this is how it has always been.” Said Bashir, starting his story on how he has walked on thorns all his life.

Bashir, fondly called Snoozy by his friends and loved ones, like a lot if not all sickle cell patients, had what we can call a very rough childhood. His own case was especially different because the only kids that came close to him didn’t do so to play or be friends with him but to make fun of his big head and thin frame. Some kids even went as far as holding his hands just to measure how thin it was, measure the size of his head against his very thin neck. “Looking back, I can't even blame any of them. Why, they couldn’t understand why I was the way I was or why I was as weak as I was – I just couldn’t keep up. I couldn’t understand why I was that way either, I just knew I was different and weak because of my big head. Sometimes when all the kids won’t play with me I’d ask myself why my parents chose the kind of body they chose for me instead of a normal one. I’d cry myself to bed every single night. Haha! We were all just a bunch of ignorant kids.” Bashir went on. But like any other predicament with a bit of an advantage, Bashir always came top of his class in school because there was no one to play with even if he wanted to. He was always in class, studying and playing with what he refers to as his “one soldier circle of friends” – HIMSELF. But then like any and every other child, he wanted to have fun, participate in inter-house competitions, play football and police and friends with his mates among other things – he was jealous of the other kids. No one invited him to do any of those things, and even when someone did, he couldn’t keep up. Losing a 6 year old brother to the sickle cell anemia and having a tall, energetic younger brother who everyone mistook for his elder brother were especially heartrending for him while growing up. As the years went by, before moving to Kaduna from Lagos, Bashir had a few friends. “They didn’t always tell me what they were up because I couldn’t keep up with them. So it was just me trying to impress and forcefully play with them. But I couldn’t even be the imposer for long – I’d get tired after a moment’s try, slowly go to drink some water, and come back again. The struggle was tiring and endless.” Like he said, IT WAS ROUGH.

“As an adult I thought people would see beyond the blood disorder and accept me for who I am, but reverse was/and is still the case. I meet people and we start off great, they think I’m this great guy they can roll with and be friends with until they know I’m a sickler. I’ve lost so many friends, especially girls, to the fact that I’m a sickle cell patient that I’ve even lost count.” He went on, “but then those that are down with me, are down with me all the way. I’ve acquired friends that love me for who I am. We respect one another and are loyal to one another. And I think that’s all that matters in every relationship. But finding a woman that would love and stand by me is something I’ve almost given up on, to be honest. I don’t even see it happening.”

Bashir Sidi Ali describes sickle cell crisis as unendurable, heavy-handed, excruciating, and nearly unbearable. Like every sickle cell patient, Bashir invented a couple of tactics to help him ease the pain in times of crisis; “in times of crisis I’ll use a piece of clothing or a belt to tie the area of pain up or rest my weight on the spot when possible. Other times when I ache all over, I just shut the pain out in my mind and think of JANNAH (heaven). I believe whatever suffering I’m going through is a thing of this world, and I won’t take any of it with me when I die. So I just shut the pain out and picture myself doing, in heaven, all the things I couldn’t and still can't do because of my blood disorder and somehow it goes away. It’s going to be beautifully painless up there in shaa Allah.” When asked about the one crisis he would never forget, he said the one that lasted months on end. “It lasted for months back in secondary school. I couldn’t stand, talk less of walk – I was carried everywhere. My hands were off, my legs were dead. Sometimes I couldn’t even feel them. I couldn’t do anything then, and so I had to miss two terms. School didn’t even matter then because I knew I will always be left behind for the rest of my life. I thought I would never get pass that crisis. I suffered.”

Bashir Sidi Ali sings when he's not too busy with school or fighting sickle cell, and he does that very well too. He finds solace in singing. He refers to music as his safe place; a place he runs to even when all he wants to do is run away from the whole world and even from him. “Music is my biggest escape” said Bashir, “because hearing people say they love my songs go a long way in uplifting my spirit. I feel I'm not a loser and it helps my depressed self. It’s like I have something to do that is beautiful and people love me for it.” even a deaf, dumb, blind and lame man could hear, see and feel the joy radiating from his whole being as he spoke about his music. The sheer passion! “Music is my safe haven; even sickle cell can't find me in my safe place. Music to me is just rrrrrrrrrrrr.”

The fact that sickle cell patients have at a point, if not all their lives, had to deal with depression is an all too familiar news to everyone who has come into contact with an SCD patient. Having to deal with pain and sometimes even discrimination on a daily basis is bound to do that to just anyone, sickle cell patient or not. A lot of people when faced with difficulties for a period of time, in desperate need for serenity and comfort, fall back on drugs (either overdosing on prescribed drugs or self medicating). When I asked Bashir how he dealt with depression through the years, his reply clawed at my heart. “I still am a depressed person and I don’t think that is ever going to change. Over the years, my parents taught me better than to seek solace in drugs. It was and is still not on my list of option. Even in the hospital, in times of crisis, there is this pain relief injection; I would cry out for it when the pain becomes unbearable. My doctors, God bless their hearts; don’t always give in to my cries in a bid to make sure my body doesn’t get addicted to it. Till date I don’t even know the name of that injection, saboda tsaro.”

Bashir is evidently a person that sees the good in every situation, and as such is easily loveable by everyone and anyone that gets to know him. A golden-hearted soldier. He says the most credit for helping him hang on and actually fight sickle cell goes to both his parents; his father for always being ready to finance treatments and for giving him manly support, and his mum for always making sure he was comfortable even at the expense of her own comfort. “They are my support group. I'm sure they suffer the pain of seeing their child live the way that I do. They may not say it out loud, but I’m sure they suffer even more than I do. It has not been easy on them. But then Allah knows what’s best for all of us, and that’s what keeps me going. I just want to be successful in life. I want to be able to help people someday. That’s my goal and motivation – what keeps me going.”

Bashir sidi ali never talked about sickle cell with anyone for fear of being discriminated against and for other reasons best known to him. Until now he has seen no need to come out in the open and embrace his predicament. now it’s not just him; a lot of other people out there hide their genotype realities for fear of discrimination and maybe even fear of being labeled a weakling and a thing to be looked at with pity. They just want to be looked at and treated as any normal person would be – so they act normal, carrying their pains around with a smile and wearing their selves out in a bid to keep up with the rest of the world. I'm not saying sickle cell patients aren’t normal or that meeting suffering with a smile isn’t a good thing to do, but what if the whole world accepted them for what they truly are? I mean if you can see the substance a person is actually made of, how beautiful and loveable they are, their capabilities and resourcefulness as human beings without knowing their genotype or HIV status and what not, then you can love them regardless of what runs through their veins. What makes a person is not the type of blood that runs through their veins, it is what they carry in their hearts, their mindset, their strength and their overall attitude and approach towards life and the people they come in contact with, and frankly, sickle cell doesn’t affect any of those places. I have personally met a lot of healthy people with very sick attitudes – so accepting and loving someone goes way beyond the structure of their blood cells. I also don’t mean to belittle other people’s pains and struggles, but a sickle cell patient’s pain is second to none. Calling them strong doesn’t even begin to describe what they are. They are the strongest amongst the strong, warriors, fighters with hearts that never give up on hope – on life. So I call on whoever is reading this to help advocate against discrimination against sickle cell patients. Embrace them and support them in every way you can. There’s enough love in the world to go round, don’t deprive them of it. You never can tell whose sickle cell journey you can make easier by showing a bit of care. God bless us all!

I want to say a very big thank you to BASHIR SIDI ALI for trusting me with his story and letting me share it with the world. It has inspired me a great deal and I hope it inspires whoever reads it too. May God almighty continue to strengthen you and bless the work of your hands!

{To support, listen to and download Bashir Sidi Ali’s songs; go to https://notjustok.com/p/sirbash_ ++ If you're a sickle cell patient and this story has inspired you in anyway and you want to share your story with us, kindly contact 08050651935 or send an email to mimsado24@gmail.com. YOUR STORY CAN MAKE A DIFFERENCE!!!}