When I was asked to highlight an aspect of my Sickle Cell experience by the Believe LTD team at the tail end of 2018, I was excessively excited. Most importantly, I was excited about the opportunity to continue my Sickle Cell advocacy. But selfishly, I was also eager to use this medium as a trial to all the injustices I felt my doctors and nurses had put me through that year. After a brief cooling off period forced on me by the holidays, I’ve become acutely aware that the only injustice here would have been me writing yet another article on how life sucks living with Sickle Cell. And it truly does. Generally speaking, life does suck living with Sickle Cell. Every single day there is an obstacle, a new challenge, something to remind you that although you look normal, you seemingly aren’t. It’s a painful existence, admittedly, but if you harness the power the disease gives you, you have every opportunity to make it a uniquely special life. Every day you’re blessed with new opportunities to learn, overcome, and understand. I know it might seem strange to highlight positives in something that brings so much sadness, but here is my frequently overlooked positive Sickle Cell Experience:
“The ability to move from failure to failure without loss of enthusiasm is success”, according to Winston Churchill. In my case, the ability to move from crisis to crisis without loss of hope can also be described as success. I’ve been very successful at making my weakness my strength; I wake every morning filled to the brim with resilience – sometimes it seems like there’s nothing I can’t overcome. Living with Sickle Cell and enduring a revolving door of hospital admissions, ER visits, and many, many pain-stricken nights has ultimately equipped me to confront the myriad of obstacles life lobs my way.
“You’re the strongest person I know.” Every Sickle Cell warrior has had that superlative used to describe them by loved ones, it’s almost become a cliché. But that statement is as true as steel. Sickle Cell has made me stronger mentally and physically. I’ve been told I have the body of an eleven-year-old, but I can assure you my childlike figure wields incomprehensible strength. The silver lining to being in pain from constant tissue and organ deterioration is that your body inevitably adapts - you build tolerance to the pain. At work, I perform at a higher level than my employees and colleagues. At home, despite pain – I’m alert, active, and present. On a Saturday, you’ll find me on a ladder installing another gadget or gizmo. I often wonder how much a part Sickle Cell played in my addiction to excellence. Surely my personality trait can’t be the only culprit.
“Live healthy or die trying.” I spend a good chunk of my time getting my mind and body to a healthy place, it’s something I work on constantly. Zig Ziglars approach to self improvement has been pivotal in my life: “People often say that motivation doesn’t last. Well, neither does bathing – that’s why we recommend it daily.” I’ve come to learn that motivation and inspiration is fleeting and acquiring moments of them is a lifelong pursuit. I draw inspiration from sports, movies, books, and even daily life. I find inspiration in something as mundane as a caterpillar leaving the safety of its cocoon. I use it all as motivation, I’m always on a mission to build a better me. Mentally I achieve this by communicating. I’m fortunate enough to have an ear to cry to, someone is always there when times get tough. I never let my mind get stagnant. I’m always changing scenery and stimulating my oblongata by learning new things. Physically I try to do everything by the proverbial book. I eat clean, stay away from alcohol and eliminate or keep my vices to a moderation. Adopting this lifestyle has had me labeled a square, but with everything I’m fighting with Sickle Cell – not adopting this lifestyle is equivalent to friendly fire.
Don’t get me wrong - sometimes acknowledging the situation sucks is refreshingly comforting. But looking at it through a positive lense, living with Sickle Cell has been like rocket fuel to all my dreams and aspirations, although they might become statistically harder to achieve. Sickle Cell has a tendency to confine its sufferers to a bed, but if you learn how to harness the power in your struggle – I promise you’ll spend less time in bed and more time achieving your goals.