I am sick and tired of being sick and tired! Seriously, this chronic illness called Sickle Cell Disease NEEDS our voice, it desperately need awareness and most importantly, our attention.

UGHHH!!…

Excuse me while I vent but, I am just fed up hearing news about the death of yet another warrior, she lost the fight but her light lingers on and beams on the faces of family members left behind, friends and acquaintances alike, who are so fond of her. But for one second, I wonder what they (loved ones and friends) will do with that light. I hope in my hearts of heart that they carry on where she left off, I pray that WE (all of us) stop passively supporting a cause such as Sickle Cell Disease, but so quick to jump on the bandwagons of illnesses like ALS or Cystic Fibrosis (not to down play these diseases or anything) come on! Sickle Cell Disease is not the kind of disease that can afford us such handling, people are dying daily in the hands of SCD, lives are being changed dramatically from the claws of SCD.

It’s nice seeing the testimonial about who, Awele/Ivie, was and how inspirational and instrumental she was BUT seriously, I wish all these people would join in on the effort to bring this issue to the government and make demands for policies and researches to be put in places, for things that will contribute to the improvement in our plight to have access to better treatment and cure for Sickle Cell Disease.

Truth of the matter is, it NEVER gets easy hearing about the plights or worse the death of warriors, especially vibrant ones like Awele, who I did not know personally but have mutual friends with. In fact, my knowledge of her came about some months ago, I don’t quite remember where/how I landed on her youtube video about Sickle Cell. In many ways she reminded me of myself, I connected with every word she spoke in her video diary, at one point I shed tears because as a warrior you identify with that pain, fear, uncertainty, insecurity, vulnerability, but at the same time the strength, the courage, the stubbornness to fight and prove a point each time. Yea, I totally knew her (kinda).

Anyway, that was that, I didn’t think much of her because I did not know who she was, or so I thought, so I moved on with life. Well, I woke up to statuses about her death, and got a link to her youtube video from another friend, that was when I realized I had actually seen the video before, that was when it clicked that this was the same girl my friends wrote about in their statuses and changed DP for. At that moment, I felt the loss was personal. Then I went on instagram and saw I was tagged to a post dedicated to her, that’s when I realized she and I had been following each other for couple of months now but not really introducing ourselves. my heart sank.

I remember seeing her instagram posts every now and then; pictures with the celebrities she met randomly, colorful pictures of her day, and there was that one video of her and a friend I assume jamming in the car. She struck me as a fun loving, happy person, I always wondered in the back of my mind every time I would see those IG posts, “who is this babe” “geez she’s having fun”. I wish I gotten to know that fun having babe a bit, I wish I had sent her a message (as I usually would really) and got to know that force of beaming light. AND she was part of the founding member of SCAF, I had NO IDEA! Gosh 😦

I say all of this to reiterate that we are all a part of each other, we are ALL connected one way or the other, and are affected by Sickle Cell Disease in one way or another. I cannot stress how emergent it is to advocate for Sickle Cell Disease. People like Awele did not cross our path, your path, just so you can continue to sit comfortably and unbothered while these people you call daughters, sons, cousins, sisters, brothers, and friends continue to suffer to the point of death without you doing something about it. I just wish the movement would get the same kind of love we show these fallen warriors after the fact… I wish I could turn all those “RIP”, the IG/FB/Twitter posts, the status and DP dedications I read and turn it to actual voices making noise with us, for Sickle Cell, crying to the governments to pay a much needed attention to Sickle Cell Disease.

I just wish things were different.

Awele, although I did not get to meet you officially or get to know you deeply, I knew enough to know that I am you in a sense. I admire your strength in the face of adversity as shown in your diary, and that heart… I did not need to meet you to know it, you were full of life and laugh – you laughed your way through the whole video foggosake (lol), I love that. Not only did you fight to live, but you fought for the cause of Sickle Cell, no one will ever understand that – to fight two battles simultaneously, one of which you have no control of and it wears your body down. I must say you fought fiercely and won as far as I am concerned.

Rest well warrior, you have fought a good fight and earned your medals.

You can watch Awele’s diary here or get to know her better on IG

Support her movement here