You may remember me posting (ranting as some might call it) about a particular video on “the youtubes”. If you missed that post, make sure to check it out here.
What you guys don’t know is that Battabox responded to my comment on the video, which in retrospect one would say is officially the first time I shared a bit of my story with anyone outside my circle. See, I’ve always been passionate and vocal about sickle cell disease BUT what most people don’t get is WHY. This is a bit of me that most people I’ve known for years most definitely do not know about me, not that I sort out to live this secret life really, but in the midst of growing up in a society that treats people with any illness that they don’t understand harshly (and don’t even try to understand) and basically isolating them, I quickly learned to just keep my shit to myself, and not once thought it made much difference to share my story with anyone – so it became a “need to know” thing for me. What that meant was no one needed to know that piece of information about me unless they were on my healthcare team, my immediate family member OR a close friend e.g. I am friendly with you to the point where I spend a lot of my time around you. In which case you knew for the purpose of any health emergency that could come up when I’m with you, that way you won’t freak out on me, but be able to play an advocacy role if I had to go to the ER or need you to call 911 or something.
Aside those people… yea, there was absolutely no reason for me to bare that info to anyone, plus I did not want to be treated differently – thank God for my friends who knew but never once treated me like an alien, they’ve never judged me, they’ve stood with me when I collapsed and cried in pain, paid me visits while I was in the hospital, they have inspired me and loved me no less. Shout out to you all, every sickle cell warrior needs people like you for real.
Going back to my point, even though I’ve always been vocal in my own little way and have always planned on doing something to help the communities of SCD patients worldwide, it wasn’t till that Battabox video that I voiced my passion to the world, yea I’ve shared with friends and family but it was different this time because I started taking initiative and owning up to that burning passion. That comment resulted in a long month sickle cell awareness on all my social media platforms, which led to me meet amazing people that are just as passionate and dedicated to bringing awareness to the world starting with my people, my Nigerians.
Which brings me to the update on my post about the video. Since my comment on the original video, there has been a couple of emails between myself and the amazing Battabox team, I was highly appreciative that they wanted to post my response on their site to their audience. It brings me such joy to share not only that, but it has brought about the chance for me to officially announce myself and my blog to my world, my friends most of who will be reading my blog for the very first time 🙈🙈🙊🙊🙈🙈, hi guys! And now the world.
I realized, I don’t have to share my story. Quite frankly, sickle cell anemia does not define me, it never has and never will. However, it is a part of me, a part of my story, I represent that population and I have a lot to contribute by bringing awareness to this disease. Sickle cell is my blessing in disguise, that might sound like an oxymoron but it has and continues to teach me a lot about myself and my individual strength. Chimamanda Adichie during her TED talk “The Danger of a Single Story” highlighted the importance of sharing your story, with that being said I encourage you to read a bit of mine HERE!
Thanks to the amazing people at Battabox for lighting the fire and giving me this platform. I can’t wait to continue to work with you all in the effort to bring awareness to our people and the world. To the few of my friends who knew about this small blog and encouraged me to keep writing even though I’m not really a writer, I have kept with it because of my passion and the zeal to help bring awareness to this disease in any capacity, I say thank you!!
The movement has only begun and we look forward to the things to come.
Sidenote: I just read about Dimeji Bankole’s loss of his 7 years old daughter to sickle cell. It’s always sad to hear these stories and my heart goes out to him and his family. It’s stories like Yewande’s that drives my passion to continue to advocate and be persistent in raising awareness for sickle cell.
RIP doll – your big sickle cell warrior sister💛💛.
wow rip to the little angel and thanks for enlightening peeople about sickle cell it not the end of the world i have cousins that live their life to the fullest there is more us than a diagnosis
“There is more to us than a diagnosis”, I couldn’t have said it any better if I tried. Thank you
Hi Big Sis.
My name is Crystal, and Sickle Cell has been my (blessing/curse?) for the 24 years I’ve lived on this earth. Its been an amazing journey, one I never even thought I’d see this far (I’m the rebel who drinks and smokes occasionally and wont take her drugs to prove I’m just as strong and “normal” as anyone else). I’m not gonna bore you with my rather funny story, not now. Just wanted you to know that YES, someone’s listening. Keep telling our story. Keep fighting this good fight. Maybe one day……..
Hey Crystal, thank you for your kind words it means a lot.
Also, as a big sister, my advice to you is to do anything and everything that makes you and your body happy. Don’t live trying to prove anything to anybody, you don’t owe them. Just do you. Only you know your body and its limit, live for yourself but pls be mindful of your body girl 😉.
I have to applaud you for sharing your story with us because it can be difficult for some to be that open and honest. It is interesting to note the differences between the African American experience, and what seems to be a nonexistent dialogue here in the United States. I wrote about this in a recent article, and I would love to know your thoughts! You can read it at http://exm.nr/1rEkbB8, and thanks again for visiting my blog as well!
Omg just read your post, permission to reblog please! I actually wanted to write per the work the Black Panthers put in at the beginning and how it’s basically non-existing now. Wow, great minds.
I would love to rub minds!! The situation has to change both here AND in Africa, we’re facing the same challenges.
I agree completely! It is so important for us to all be in this together, and if it were not for brave people like you we would not even begin to understand the whole story. I was hoping you would want to collaborate! I look forward to working with you toward making a difference. I will reblog your story as well.