Normal. Normal for me is sleeping late on Saturday mornings, playing football or basketball with my friends, watching CNN with my grandmother, reading a sci-fi or action novel, talking really fast, collecting hot wheels, watching sporting events and ESPN, and most of all…..EATING. Normal for me has also been learning to deal with having Sickle Cell disease. For a good bit of my 15 years on Earth, normal has also included blood transfusions, hospital admissions, MRI’s, x-rays, needles, and living with pain. Normal for me has included learning to deal with being smaller that other kids, getting picked on and bullied, missing a lot of school, and being challenged with having to catch up through make up work and tutoring. Blood donation is important to me because through a regiment of blood transfusions, I do not have as many pain crises caused by sickle cell disease.
My future normal will include either a career in engineering or culinary arts. I have time to figure that out. I have good friends but they don’t always understand what I go through. For the majority of them, a “normal” life doesn’t include hospital stays and monthly doctor visits. But that’s ok. I’ve figured out that it is my job to be a spokesperson for the kid who can’t express their pain in words. I came up with this phrase when I was younger “I’m small, but I’m strong”. It was something that my granddad used to remind me of all the time. You see, being strong is not a matter of size. Being strong is being faced with a challenge and persevering through the challenge. But that’s not all. After you’ve persevered, you have to pass the lesson learned on to someone else. That’s my normal. Is it easy? Absolutely not! LOL!!
If I have to describe the pain the pain that I face on a regular basis I would say that it feels like a hammer beating on your entire body, under the skin, muscle, tissue and directly on the bone. And when it’s really bad, I have to go to the hospital to get stronger narcotic medicine which for me may only take the edge off. Truthfully the pain never really goes away 100% but I’ve learned coping techniques that help me not to think about it so that I am able to focus at school, home, and church. I have a great support system with my family, friends, church and community group. I like the fact that unless you see me in a hospital or if I tell you, you would never know that I have sickle cell disease. You would see me as a “normal” teenager. That’s cool!