iamsicklecell is the name I used when I created my social media account. The idea behind the name, and what I seem to struggle with within the Sickle Cell community, is all about my ability to not let words define me. I’ve heard people say you need to say “I have SCD” and stop using “iamsicklecell” because you are allowing the disease to leak further and further in your brain and it’s going to decide how your body functions. While I can appreciate and respect the opinions, my rebellious side won’t let me just accept that.
I have always been the person who creates my own lane, I don’t like to follow people (not that it’s a bad thing, because to be a good leader one must know how to follow), but because I’ve followed my brother for years, I am able to understand how to create my path, have others accept it (despite their feelings), and can even convince others to follow my lead/my way.
For me, using the name iamsicklecell means that I am this person, I have SCD, I was born that way, I am deciding how to navigate through the lasting impacts that SCD have left in my life; I am doing all of that with a smile on my face, therefore, I am Sickle Cell.
My journey has not been easy and it’s just starting. It hasn’t been all bad; I’m grateful for what I’ve been through and I draw my strength from it all. I’m now using that same strength to turn iamsicklecell into a great foundation primarily in Haiti (but hopefully worldwide) to not only spread awareness but also to reach new milestones within and for our Sickle Cell community, to make sure that young Warriors around the world don’t have to go through what I went through; and just thinking of this makes me smile…
Smile, it could be worse!!!