I want out. I didn’t used to be this way. I used to be pain free. Pain. Free. I can’t even fathom a day without pain anymore. I’m coming up on 5 years of pain every second of every day now. It has spread almost everywhere, you know? It’s like this is a joke for you. Well, you’re the only one laughing, Body.
You’ve taken so much away from me. I don’t go out as much as I used to. I can’t do the fun, active things my friends and family do. It’s not like I can go and hang out with them while they ice skate and I sit on the side lines. I want my social life back, Body. I used to be a dancer, if you remember. Had you not done this to me, I would have competed at World’s. My team went and they won without me. Thanks, Body. This disease is genetic, and I’m not having children so I don’t spread this dreadful disease. Like almost every woman, I want to have my own kids. I want a little fashionista running round hyper as can be, just like I was. You snatched that from me like a bully would. I want to go a day without taking pain killers to only dull the endless pain. It’s damaging you for me to swallow these white powdery tablets, but you don’t seem to care.
I feel as though I’m inside of this body-this isn’t me. I’m banging on the rib cage, desperately trying to escape. As this pain tortures me with superficial and deep pain, I bawl. I again realize this is my reality. There is no escaping it. Ehlers Danlos Syndrome, you make my days unbearable at times. Hate is a very strong word, but I hate you, Body.
I’m grateful for so much in my life. I have great parents and home. I’m going to a solid university that is paid for. I am bright and confident. This isn’t going to kill me, and I could have it much worse. But why me, God? Why anyone? This disease, and many other diseases, are not caused by someone’s sin. This isn’t Gonorrhea. I’m a good, clean kid. This is all for your glory, Lord, and I’m trying my best to stay strong. But I’m weak, oh so very weak. It’s weird to be praying to the God that gave me this pain to take it away. Job 1:21 says “The Lord gave and the Lord has taken away; may the name of the Lord be praised.” But that song, Your Grace is Enough, it makes me mad. I struggle to sing it. I struggle to praise Your Name as my entire body cries out for this misery to be defeated. I am surrounded by huge guns at all angles, and I have a butter knife as my weapon. I sorrowfully raise my white flag knowing my odds. There is nothing I can do. You win, Body. How does it feel?