I grew up feeling like I didn’t have a voice.
Or better yet, it took me a long time to understand the power of my voice.
I’ve always recognized that I wanted to make an impact on people, and taught for many years, and so I assumed that was the extent of the impact that I would make. I’ve always yearned for more, though.
Last year, I had the opportunity to speak at the Annual Sickle Cell Disease and Thalassemia (ASCAT) conference in London, and something clicked inside of me. I realized how meaningful my story is, and how strong a voice I do have.
You see, growing up with Sickle Cell Disease I always felt small. There were so many limitations placed on me – so many expectations of what I could and could not do, and so I internalized these things.
And it’s funny because although I internalized them, I didn’t buy into them — if that makes sense. I knew from early on that Sickle Cell Disease would not be the cause of my demise. I don’t, and have never viewed myself as sick, even when I have been hospitalized, and deathly ill.
I have lived a practically normal life – as much as I can possibly define normal.
I travel more than some healthy individuals. I don’t allow myself to be limited in the decisions I make. I led a group of junior high school students, some who had learning disabilities, on a college tour, because I wanted them to understand that the sky is the limit, and there is no height they can’t reach, regardless of the labels, which were placed on them.
I have moved all over the US, and lived in Nigeria for several years during my adult life.
So I have internalized stigmas and expectations placed on me, on the one hand – but on the other hand, I have lived a pretty free, and amazing life.
I have always lived within this dichotomy of power and limitation.
So as I am continuously evolving, I have come to a point now where I decide to live to my fullest – not just in my physical life, but also in my thought life.
I had a stroke at the age of 12 because of sickle cell.
I received blood transfusions for years and years to manage sickle cell.
I take medicine every day and have been doing so for over 26 years, because of sickle cell.
I was pregnant with twins years ago, and lost them because of complications of sickle cell; the doctors said it was either me and them, or them.
Serious relationships have ended, because of sickle cell.
I have been in and out of the hospital with crises, pneumonia, chest syndromes, so many different symptoms and sickle cell-related reasons.
My sister, who was my best friend, and my brother passed away, because of sickle cell.
So it is has been natural to allow these things to make me feel like a victim.
But today, and tomorrow and forever, I choose life, freedom and purpose!
As we continue to go through the next several months or maybe even the rest of the year on lockdown because of this pandemic – we too must decide to stand for ourselves. Accepting the limitations of the situation, but not allowing the limitations to limit us. And not allowing them to define our peace of mind and peace of heart.
I have been homebound with my two year old daughter for the past 3 months, or 91 days, or 2184 hours. Just me, her and her grandma. And it has been difficult because I am used to traveling, getting away – having my own space. It’s been really hard for me over the last weeks to stay sane – to stay composed. And to not let out my frustration or anxiety on my daughter. And I will be honest and say that I have had my moments. But I have come to the conclusion that it is so important to live in the present. To enjoy each situation – as much as I can, even when it looks hopeless. And to look for reasons to smile.
To dance. To laugh.
These are things that I have had to do throughout my life to make it through the difficult, scary and heartbreaking times.
This is what has kept me in the place of power over my limitations. Power over sickle cell disease.
It’s a really funny balance, but daily we all must choose our reality, and confess the reality we have chosen. We must choose our joy, our peace, and our love, so that we can live fully in the power that truly belongs to us.
Sr. Coordinator, Sickle Cell Disease
To correspond with Yemi, please email her at OMOSES@PRDPF.ORG