“World Sickle Cell Awareness”
Whenever I hear that, I usually just think of annoyingly large groups of people, walking long distances with less than average musical bands playing horrible renditions of what should be good music, wearing ugly red tee-shirts with some slogan or the other about living with sickle cell, and some noisy unpleasant old woman being a very serious nuisance with the help of a very loud speakerphone.
World Sickle Cell Day was last month, and I’m not particularly sure if it was a simple coincidence, or an act of God, but I became very aware of the sickle cell disorder in that same month as well. My girlfriend’s little brother happens to live with this disorder, and he had a breakdown. Through the years, I’ve heard about people having breakdowns, but I’ve never quite grasped the severity of it. How in the time of crises the dance with pain is hard and exhausting, and quite often, may be hijacked by Death. I never quite understood what it felt like to know that someone who mattered to you was in a pain so severe, and yet you could do nothing to stop it. All you would be able to do is try to help make them as comfortable as possible, and wait. And pray that when Death should try to cut in on their dance, they would politely decline.
For the 72 hours in which his crisis lasted, I began to understand. I saw the tortured expression on his face and the contorted form his small frame would take as he was racked through with pain. I winced as I watched his sister try to be strong even though what this little guy was going through was hurting her almost as much as it hurt him, because she knew that was what she needed to be for the both of them. I held her when she couldn’t be strong on her own anymore, and crumpled from the pressure that fear and frustration bring at those times because her brother was in so much pain, and she couldn’t make him feel better. I felt myself choke at some points when I wanted to say how everything would be fine and he would be okay, because even as optimistic as I attempt to be sometimes, I just didn’t know. And then when he was finally better again, I felt the relief wash over all of us; and I heard myself tell Death, “Not today dude…not today.”
Sickle Cell awareness has taken on a new meaning for me. It’s not particularly about the press, the media campaigns, the noisy awareness walks, concerts and talk shows. It’s not about the people walking about wearing those tee-shirts and wristbands, proud to be associated with some charitable movement. It’s about the people who live with this disorder. It’s about the fact that once in a while, some more regular than others, they fight battles that the rest of us may never have to comprehend or contend with. It’s about the fact that some win these battles, and then come out to tell the rest of us “We’re still here. Help us if you can, but love us all the same. ‘Cos we’re not going anywhere.” It’s about the families that stand by them, no matter what, crisis or no crisis. They hold their hands and help them stay strong. They bear the pain and the fear and the pressure, because that’s the way it’s meant to be.
As you may have guessed, I’m new on this blog. But, I do plan to be here for a little while. I’m the Capoeira Panda. You may call me Panda. What’s most important though, is that I’m Sickle Cell Aware.