Have you ever wondered what it is like having severe cerebral palsy? Or what all are involved in limited mobile? There are a lot more than you can imagine. Even if I write twenty blog posts, it still wouldn’t cover everything we deal with on a daily basis. The list could go on and on. That’s another reason why I have written a book. Honestly I didn’t think about blogging until someone mentioned it. My book covers most of the angles of what it is to have cerebral palsy. I am going to share two of the biggest challenges my body deals with on a daily basis. 

When doctors tell parents that their kid has cerebral palsy, there will be lack of coordination involved. How much muscle control their kid will lose? Nobody knows. When I turned three, I wasn’t walking or talking. My parents had no idea whether I would improve or stay the same. Having the lack of coordination is more than being unable to do certain things. Some parts of my body move more often than others. Over time muscles begin to fight against each other. That causes problems with bones leaning further than normal. A lot of people put us in physical therapy when we’re little, so we can develop the right muscles. Is that the real reason? Personally, I think physical therapy helps people like me to avoid hips or spine problems. With years of not having PT, I have developed a subluxed hip. Meaning the bone is partly out of the hip joint socket. It does not hurt yet, but that bone causes my leg muscles to fight even more. At different times they get painful. I used to get multiple shots around my hip and down the leg to loosen up the muscles.. Losing a lot of muscle controls is a big deal. 

Spasticity often comes with cerebral palsy. Flying arms and kicking legs. Often my body makes sudden movements. This is what people are afraid of when being too close to me. I would be too. I never want to hurt anybody, however that does happen. My family knows it is a part of cerebral palsy. Not everybody knows that. They think I am a violent man. If I had super long nails, I would be. The person I hurt the most is myself. Different wounds on my face and hands. Even my parents don’t know how many times I scratch or hit myself. Sometimes I try to make up funny stories. The other night I hurt my eye and told dad that I am getting ready to be Nick Fury for Halloween. I am always hurting myself. “Sometimes I just have to laugh. I can’t complain about hurting myself. There is nothing I can do about my swinging arms. It is a part of living in a body of cerebral palsy. The harder I try to prevent hurting others or even myself, the less control I have over my body. I once told my parents that it is hard to have people really close to me when I start jerking. Then I am afraid that I might hit somebody which makes me jerk even more. … For me, that is one of the most frustrating things about having cerebral palsy. Even though it is so embarrassing, I am glad my body doesn’t go out of control often.”

Am I stubborn? Maybe? I don’t know. Most people would say no. They think I am the nicest person. A few people called me an angel. However, my family has something to say about that. The correct answer is yes. Many of us think being stubborn is a negative thing. A lot of it depends on how we look at that word. Born with a physical disability, I have to be stubborn. Otherwise how am I supposed to get what I need or want? Without being able to fully communicate. 

Another way to look at it, babies keep crying until they get what they need. Caregivers and nurses think people with disabilities are too picky. If people don’t get certain things right the first time, how are we supposed to be happy when knowing we would be in pain later? Like putting shoes on the wrong foot. Luckily I was able to correct my family quickly. There were a few times when my personal items went wrong. I was in pain for a period of time. People are not always around to help. Who wants to be in pain for hours? They don’t realize that we can’t help ourselves when stuff starts hurting us. Same principle applies. I don’t want to do my homework twice because I listen to my parents instead of doing what my teacher taught me. 

There are nine words that made the biggest difference. In the early intervention programs, my parents were told, “never set limitations on what I would be able to do”. Since then, they never forget that phrase. It guides them in their decisions of letting me go to a regular school, play flag football, be a high school basketball manager, etc. If they hadn’t put me in a normal school, we would have never known how smart I am. It was the best decision they made. As I was going through school, I learned to stand my ground when everyone else is trying to tell me what I can’t do. Always figuring out a way to do certain things or make stuff better. Being stubborn not only helped me to get what I want, it also got me where I am today.

When people hear the words “physical disability”, they first think of people who can’t walk. There is so much more than just being unable to get up and walk. Even if they can walk, getting dressed and climbing in a vehicle is still challenging. Going places takes a lot of time and effort. When people are incapable of putting on their shoes and socks, it means they need help from others which require much patience. That is just one simple thing. 

What about those who are more limited? How much time do you think they wait around on a daily basis? If many people are like me, we would be averaging between two and three hours. Some days are longer. Waiting to get dressed or use the bathroom multitude times a day. Waiting for someone to give me a drink. Waiting until somebody makes a meal and feeds it to me. Even waiting for each bite. If I want one of my family members to set up my tv, that means more patience. I am always waiting. 

In my book, I had written a paragraph that fits along with what I have been saying. “Not everybody can pick me up. Have you ever found yourself laying hopeless in bed? I never want to wait for somebody to get me off my bed, so I can fully communicate with my device. I never want to wait to get up, so I can move on with my life. I never want to wait to climb out of bed, so I could go to work. It is all a part of living with a physical disability. I learned to be patient. Life would be less meaningful if I didn’t develop patience. “Tonia, you are the most patient person.” people commented. ‘No, Michael is the most patient person.’ mom informed them. Not being able to get up and walk is tougher than most people can imagine.”

There are so many questions about cerebral palsy. “What causes cerebral palsy? Where does cerebral palsy affect? Can cerebral palsy be cured?” A lot of questions have been answered, but some of the answers to questions are unknown. Some people who have CP are still able to walk and talk while others can’t. A few people can do certain things with their feet. Most of my brain damage appeared in the motor area. There are different muscles I can control better than others. In my book, I created a story to help to give everybody a better understanding. 

“Out in the middle of the ocean, visualize 650 navy ships line up as a stickman human figure. That is how many muscles there are in our body. A circle head. Long body with ten fingers and toes. The head captain on the first navy ship sends you out to an island located in the head of stickman. The island is like where our brain is located in the body. You put on a heavy radio backpack and climb into a small boat in the middle of a storm. A bunch of loud thunder and lightning. Once you arrive, you notice the radio broke. There is no time to go back to the ship and get another radio. After several minutes of messing with the radio, only certain channels work. Each ship has its own channel. Would you be able to transmit messages to all 650 navy ships with just a certain number of channels? There is absolutely no way. It would be nearly impossible. That is how the cerebral palsy brain works. Person ended up with a half broken radio. That explained why each individual with cerebral palsy is different. There are body parts I have more control over than others. My radio mostly works with the ships around the island. I can move my head, eyes, nose, jaw, and neck really well. The rest of my body, not so much. Some people with cp are lucky to have most of the channels working. Living in a body of severe cerebral palsy is like being stuck on an island with a broken radio.”