How My Origin Story and Sickle Cell Disease Shaped My Childhood

I am going to take you behind the scenes of how this column, “Sickle Sagas,” came to be. I will show you everything about how I became an incredibly successful sickle cell advocate and storyteller who changed the world for the better.

OK, I’m being slightly dramatic. I haven’t cured sickle cell or found world peace (yet), but it got you to keep reading. That’s what every good story does, it draws you in and makes you want to know more, right? Who is telling the story? How does the story end?

Well, my story is far from over, but as an anime fan and a lover of stories, I’m a sucker for good character development and overcoming the odds. In all of my favorite stories, the protagonist always goes through something insane (such as everyone they care about getting lost), but somehow, they find the strength to keep moving forward.

Maybe I relate to these protagonists because over the years, I’ve learned that living with sickle cell is far from a “normal” life. My journey has been full of character development. I’m the protagonist of my own story, born with sickle cell to a world not ready to understand it. I’m continually trying to overcome the odds and prove myself to the world.

Allow me to give you some examples of young Dunstan before he knew how important his story was.

I became conscious of the fact that I had sickle cell when I was about 5, during one of my first memorable hospitalizations. In the midst of learning how to read, doing schoolwork, and running around like all little boys at that age, I was faced with a realization: I am slightly different from everyone else. I didn’t immediately become a sickle cell advocate and live happily ever after, but that’s where my development began.

It took years to understand what was happening to me. When I got excited about things or was extremely exhausted, I’d end up in serious pain. Imagine a young boy trying to stay calm during recess or when he got a new toy. Imagine feeling like your body will punish you for too much joy. Let’s just say that I had to learn the hard way, to the point that I rarely got excited about things because I feared I would end up in pain — or worse, back in the hospital.

Understanding what sickle cell meant for my body at a young age was an obstacle by itself, but like any decent story, that was only the beginning of what I needed to overcome. Explaining sickle cell to other kids was horrible. Anytime I would say the word “disease,” kids would run away from me. They had no idea what sickle cell was, but they all thought that “disease” meant something nasty and contagious (which, of course, isn’t true for sickle cell, a genetic condition). The 2021 equivalent would be like trying to explain to a child today that you are sick without them thinking you have COVID-19 and are going to die.

Because I didn’t fully understand my story, or why I wasn’t “normal,” I slowly became increasingly isolated as a child. I was quieter than most. The best metaphor I can think of is my younger self sitting on a swing on the playground with no one to push me, just wanting to be like everyone else. To this day, I wonder if this quieter being is my inherent personality, or did sickle cell cause me to be that way?

There were several points in my life when my younger self thought sickle cell defined me, and there were just some things in life that were not for me. Was my story predefined, or was I just not as strong as the protagonists I looked up to in all of my favorite shows?

Join me next week to see if I ever found an answer to this question.

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Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell anemia.