A Journey With Cerebral Palsy

Accepting cerebral palsy won’t always be impossible. For me, acceptance has been a process lasting years of life. It would be inaccurate to say I have fully accepted my disability. I remember one of the most challenging things for me was viewing myself. Watching video of me doing any kind of activity. So, viewing myself had often been shied away from. But, I remember being young, and wanting to try talking in front of a camera. In class, we were given an assignment to do a book report. One of the options was to be videoed while discussing the book. I thought it would be a good challenge. But, when I watched myself on the screen, all I felt was fear. The moment was scary, watching the person in the video, who could barely be understood. I remember sitting in front of the images and wondering why people even talk with me? From that point forward, I didn’t want to hear myself. Years went by before filming myself entered into mind. Then, a couple of years ago, I took video during some of my workout sessions. Recording some of our movements and exercises. Many of those recordings have been inserted into the blogs. But, somewhere along the way, I decided to stop taking them. I could blame the pandemic or the process of editing. However, it felt like I still hadn’t found the courage to watch myself. The fear had persisted. 

I remember distinctly, taping myself for that book report. Peers had been asking me through the early years of school, why I spoke differently. The question was challenging for me to understand. When I heard, myself speak inside my head. The sound didn’t seem any different from hearing my friends speak. I couldn’t truly understand what all the inquisition was about. Until the day, I watched back the video in preparation for my presentation in class. I was viewing myself sitting in front of the camera. Sitting in a chair, while talking through the well thought out notes I had prepared. It was way too challenging for me to watch. But, I knew there wasn’t an alternative. My embarrassment and shame were shoved down inside, as far down as those emotions could be shoved. The questions came flooding into my mind. Why do I sound so much different than I thought? How do people even understand the things I’m saying? How do I have any friends? I would love to tell you these thoughts from back then are gone. However, pieces of them remain when watching the videos, I take today. Back then, I forced the challenges of my cerebral palsy deeper into denial. Vowing to ignore the sound of my voice on any kind of recording, moving forward. The plan was executed for years into my future. After presenting that video to the class. My openness to listen to myself on a recording or watch myself on video, went dark. Along with that vow, went any kind of ability to start the process of cerebral palsy acceptance.   

It didn’t happen until years later. Probably, more than twenty years down the road of my life. I decided to record my voice, again. Hoping the sound of it would cause a more positive reaction. My phone was pulled out of my pocket, as I worked through learning how to record a message. The courage was found and I spoke into the receiver. I felt the fear come rushing back when I finished. Knowing it would be time to play back the sound. The play button on my phone was pressed with apprehension. I sat in my room, in a chair, and listened all the way through the recording. My initial emotions were more positive. More accepting than I had remembered them being from years ago. I wanted to try recording the voice message, again. Feeling like I could do something a little better. Not really improving on my speech, but slowing it down. It took a couple attempts. But, I executed on one that seemed to work well. The challenge of listening to my own voice was still present. However, the feeling of running really far away from it, had subsided. My ability in making the voice recording of my own voice mail message led me to other things. If I could work with that kind of recording. It seemed possible for me to record some of my workout sessions. The recording of those sessions would be another step. 

Throughout the blog there are some videos of workout sessions. They were taken before the pandemic heavily influenced our lives. The videos become a good follow up step to my accomplishment in working on my voice mail recording. They challenge was that shooting these videos didn’t last long. The pandemic did close the gym down for a while. But, even when we got back into our routine at the gym, I wasn’t motivated to pull out the camera. The questions from my youth. The ones I couldn’t handle when working on my filmed book report. Those negative thoughts kept permeating my mind and emotions. I could feel some emotions of acceptance. Signs inside of becoming at peace with the sounds and images. But, I continued to wonder why people talk with me? Or, will I end up being alone in life? Do I cause embarrassment to the people around me? They were all challenging thoughts. One of the main concepts pulling me through those videos was the idea of them helping others. Could they motivate others with cerebral palsy to push forward? Also, getting the name of my trainer out into the world. Maybe people with cerebral palsy would seek his experience? So, I went through the editing process quickly and posted some of the images. Not paying much attention to the idea of accepting who was on the screen. I continued to protect my deep denial with my addictive habits. My thoughts about the person I watched, remained mostly negative. 

The year of the pandemic changed my life. Moving me out of the addictive behavior surrounding me for years. I think the willingness to take on those challenges influenced the way I view myself. So, when I began shooting video of the workout sessions, things were different. The images I watched of myself occurred just a couple weeks ago. When I pulled, my GoPro back out of my closet. The nervous energy was racing around my body with the first video. As I opened it and watched myself move around the screen, again. It had been almost three years since the last time I had taped myself doing an exercise. My initial reaction wasn’t a whole lot different from prior years. I saw a person who moved differently and was challenging to understand. Similar negative thoughts came flooding back into my emotions. Worry over why someone would spend time talking to me? Thinking I will be living my life alone and single. Wondering why someone would want to date me? These thoughts aren’t new and they have often intensified when watching myself. But, as I continued viewing footage from the workout sessions, something happened. Instead of trying to stifle away the feelings while watching. I wanted to just watch, trying to understand what I was seeing. Not run off and try making a quick edit to post. I started to see a person with depth. Who might be more than the poor guy with a disability, who moves and talks weird. 

For the first time, I saw a person who could be accepted. Someone I might even be proud of being. These would be large steps for me to be taking. Having struggled most of my life with the person I see on video. My point of view began moving past the voice and body movements. I started thinking about the reason why. Why it was challenging for me to speak at some points, and not at others? Why I looked sturdier at times, and less sturdy at others? I started noticing the manner in which I was walking and using my arms. My watching wasn’t in an effort to put myself down. It was more so, looking at things that could be slightly improved. Thinking about how I might be able to throw the ball better. Or, how I might be able to be a better listener. Being concerned with the aspects I might be able to improve. Instead of worrying about the movements I don’t have much control over. Cerebral palsy has placed physical challenges in my life. Some of those difficulties can be seen by watching me on video. From my muscle movements to my challenges with speech. But, being able to stop myself from getting caught up in focusing on those trials. Feels like a large step forward in my acceptance of the disability. Allowing me to look at the videos of our sessions through a different lens. The idea of finding ways of improving the things I can control in life. Rather than, focusing on the things that keep me feeling sorry for myself.