Pain & All The Trimmings

As much as I like to keep people informed about sickle cell, there are certain aspects I simply don't talk about. For someone who is a friend or relative of someone who has this blood disorder, some topics are simply too much to bear. I'm pretty much the kind of person who works on a vibe of, "If you really don't want to know, better not to ask." I'm like that because as much as people say they want to hear the truth, the statement in itself is often a lie. Maybe that's why people are so full of 'dumb' questions, they ask so as to seem interested, but don't really want to know beyond the text book response. And yet when given the text book response, people don't take you seriously, like, 'is that all?' Translation: 'So you get a lil pain now and then, I do too big deal.' Only when you tell them that it makes the pain of childbirth look like an all expenses paid holiday, does it begin to sink in. While that is a general description of the pain, it doesn't relay how one personally feels about it, or the effect it has beyond what it does to the body.

I have two tattoos. One of the number nine, the other of the superman symbol. When people see the latter, they often think it's because being that I'm a sci-fi enthusiast, it is my way of paying homage to a favourite character. Uh - no dear, my spiritual name begins with 'S' and the symbol is a reminder that I am my own natural born superhero. Sometimes, when I'm in a crisis, I need to remember that. Because when in the kind of pain I experience, all that I can think to pray for is for death to release me from the torture of the agony. My 'S' is a reminder that I am more than this pain that just happens to be my soul's kryptonite. When in that pain, I wonder about who I hurt so bad to warrant this kind of payback. When in that pain, I cannot see my children, my family, my friends, all I can see is hell and I wonder why the tease, just send me there already. I can joke with people, because I know this is what they need to be able to tolerate being around me, but inside I am dying... painfully. I am wondering whether it is too selfish of me to want to be in a relationship if this is what he would have to contend with. I am wondering if I have enough pain relief to take my life properly, and not just cause more damage to this anomalous incarnation. When in pain I get so weak it disgusts me, but if I show anything but patience and a lighthearted spirit, the pain increases and becomes more drawn out.

Sickle Cell is painful yes, but what's worse is all the trimmings, all my worst fears playing over in my head. Fears I didn't even know I had. Fears that have nothing to do with whether or not I'll be wealthy or successful. The fear is having to endure living through another minute of it. I don't write this for the sake of pity, cuz that in itself pisses me off. I'm a capable woman with a dynamic mind that just happens to reside in a body that is afflicted by an inherited blood disorder. My rate of achievement might be at a different pace to others, but I still have the ability to achieve nonetheless. I write this because right here, right now, I simply don't feel strong enough to lie for the sake of making others feel more at ease. For the most part I cope pretty well, but just sometimes, I don't have the strength to.