Growing Up With Sickle Cell, I Just Wanted To Be Normal. Now I Know I'm Special.

Since my sickle cell disease diagnosis at age three, I've done everything possible to ensure my illness doesn't limit me.

Twenty years ago, I would never have thought I would be alive at the ripe old age of 41. I heard a lot of different stories, from a lot of ignorant people, all of whom had already sentenced me to death – not for a crime, not as a punishment, but for having a crippling, blood disorder called sickle cell anemia.

Growing up in the 1980s in London, sickle cell disease was still relatively unknown to the masses. Since this blood disorder is commonly found in people from an African or Caribbean ancestry, both interest and research took time to be revealed.

I was first diagnosed with sickle cell at the age of three. My first trip to the motherland of Ghana caused my first ever pain crisis. If you were to ask me now what it felt like, I wouldn’t be able to recall – however, my emotions are already beginning to rile thinking about the painful bone crises I’ve experienced more recently. I would never want a toddler to go through something so painful, so disintegrating, so soul-destroying.

With ten years of experience of the illness under my belt, the issues of having a blood disorder began to show me just how ignorant people could be. Not all disabilities are clearly visible, and sickle cell disease is one that cannot be seen. As a pubescent poster boy with hormones raging all around my body, I felt the need to compete. I’d compete against my peers, against my teachers and even against myself. I just wanted to fit in, which was already difficult since I was studying in a predominantly white private school – where the white boys would call out ‘w*g’ or ‘c**n’ as I walked down the hallway.

The only way I could express myself was to wear my Dr Martin boots like Will Smith in The Fresh Prince of Bel Air (loose laces and all) or attempt to get those spoiled private school boys back on the rugby pitch. The latter always had severe consequences to my physical health – with all the rough and tumble in the cold muddy pitches, I was readily prepared to go into crisis, even if it meant that I would potentially be going to meet my maker. I was tired of not being ‘normal’, and if those were the consequences for being ‘normal’ so be it.

However, I learned there is nothing ‘normal’ about being rushed into the intensive care unit of Kings College Hospital London after having a cardiac arrest on medication you are allergic to. There is nothing ‘normal’ about floating above your lifeless body, looking down on yourself and seeing your mother press the emergency cord, rush out and call the sister and nurses. There is nothing ‘normal’ about recalling getting into the lift, going down two floors still floating above your lifeless body and seeing yourself being pushed into the intensive care wing. There is nothing ‘normal’ about waking up two weeks later and being able to recall exactly what happened to you to your mom and her look at you in shock at the amount of detail you are sharing.

But the truth is I’m not ‘normal’. I’m ‘special’. And the one thing I want all my brothers and sisters with sickle cell disease to know is that we are superheroes. And I can prove it – my ‘sticky’ blood cells transform under stress, just like Dr Bruce Banner’s blood cells transform when he is under stress or gets angry and turns into The Hulk. My near-death experience has already shown me that I can ascend in to my ‘astral form’ just like Doctor Strange. My eyes have even had red lasers beamed into them due to a serious retinal vitreous bleed that left me blind in one eye. Just call me Superman.

When I look back now, exercise and fitness has always been a part of my life. I remember when I first had to walk again – coming out of that coma I had to start all over again from scratch. I remember wheeling myself around the hospital and enjoying the pain in my muscles. I was determined to wheel myself up every floor every day until I could stand. Through physiotherapy, I slowly started to use crutches and would make it my mission to walk up every floor, until I walked out of that hospital. That’s where this fitness ‘thing’ all began for me. The one thing I do know after all these experiences, is that the body is simply a vessel for the soul and for the spirit. We need to ensure we look after both in order to protect our ‘supernatural’ spirit.

If you look at me, I am not a poster boy for a crippling blood disorder. I have broad shoulders, a chiseled chest, and abdominal muscles that looked like they were carved out of stone. I have done everything possible to ensure my illness does not define me. I am not a stereotype. I think I’m a hero-type.

To learn more about my story, and others living with sickle cell disease, visit untoldsicklecellstories.com. Find Emmanuel on Instagram at manny_maximus_beezy_/ or on Facebook at My Fitability.