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Pain Conquerors: Reflections on Sickle Cell Disease

Ayou was like the regular kind of person you’d meet in class: nice, reserved (until proved otherwise), with a strong will to learn, and a giggly, heart-lifting kind of laughter. Along the line, I discovered he was also called “super guy” by friends who knew him closely. He was a person living with sickle cell anemia. And I? His computer programming lecturer.

As you may know, anemia is a medical term for shortage of healthy, oxygen-carrying red blood cells in the body. Sickle cell anemia is an inherited condition that affects persons of African and Mediterranean descent. Affected persons experience blockage of blood flow through tiny blood vessels leading to bone pain crises, red blood cell destruction, low supply of much-needed oxygen to body tissues, susceptibility to infections, growth stunting, and a host of other serious complications, all occasioned by misshapen (sickle-shaped) red blood cells.

When two intimate partners, both having abnormal hemoglobin S instead of regular hemoglobin A in their genetic makeup procreate, they may give birth to a child with the double inheritance of hemoglobin S (“SS”) gene, also known as sickle cell anemia. A less common form of sickle cell disease occurs when the inherited genes are for hemoglobin S and C, making the person’s hemoglobin combination SC. This is why lovebirds with sickle cell trait (that is, symptom-free carriers of sickle cell disease who inherit the hemoglobin S gene from only a parent) are advised to not only consider the romantic but also the genetic side of love, but to see a genetic counselor before trying to conceive a baby.

But then, unintended consequences sometimes come packaged with certain “extra powers”. In a sense, getting to know Ayou was like meeting Clark Kent, and being privy to him wearing a Superman vest underneath his mufti. Observing persons living with sickle cell anemia from afar (as I guess you may have done too), my first impression was that sicklers (as they are sometimes referred to) were weak, feeble, unfortunate, and to be pitied for being handed a rather hard lot in life. I thought they were also somewhat odd, being frequently sick and sickly-looking. I imagined they made poor friends, were liabilities and could somehow transmit their oddity. I was never about to employ them, given the opportunity.

How so totally mistaken, and completely wrong I was! Clark Kent fooled me completely. And you too? Having now walked with, talked with and related with some friends with sickle cell anemia, I know better. I can now understand and appreciate the severe levels of pain they undergo frequently for extended periods of time. I’ve seen the physical and psychological torture they go through. The stigma, loneliness, fear, frustration. The unanswerable question of “Why me?”, the burden of being misunderstood, and the guilt of being a drain on family resources.

At the same time, I began to see their cultivated “extra powers”. I began to understand why they are sometimes called sickle cell warriors (www.sicklecellwarriors.com). Super guy showed me his strong will to live, high pain threshold, dogged tenacity, remarkable intelligence, organizational skills, and general resourcefulness.

I remember Ayou saying with a shrug, “When life throws you a curve ball, you’ve got to be able to handle it, and then move on.” He wasn’t just mouthing off. He currently juggles three different community-focused jobs! He is more than a warrior; he is a conqueror.

Yes, persons living with sickle cell anemia do need to take extra care of their health, their bodies having to take such frequent beating. Yes, they do need that we show care, love and empathy. You see, their minds house super gals and super guys. Next time you meet a sickle cell warrior, be bold enough to walk up to him or her, and say, with a firm handshake, “I see you, Super-one!”

Contributed by Awodeyi T.