Another Step

The acceptance of cerebral palsy can be challenging. This process can take many twists and turns through life. For me, the acceptance and understanding of cerebral palsy has been ongoing. While growing up it was challenging to think about my disability. Days were spent placing it out of my mind, attempting to work at physical tasks without CP holding me back. Most things could be done, but the time to achieve them was often longer. Completing a task could also take on a different form from those who weren’t disabled. One of the most difficult things was watching myself on any kind of video. It was uncomfortable to see the struggles going on with my movement. In the same way, hearing my voice on any kind of recording, also brought uncomfortable emotion. Those situations happened during my childhood. So, for the better part of twenty-five years, one main objective has been to avoid seeing myself on tape, or hearing myself speak. It has kept me from truly seeing myself, or giving myself the ability for acceptance of my disability. Acceptance is defined as the action of consenting to receive or undertake something offered. Even with the definition, it feels challenging to truly understand when something has been fully accepted.

Shame can be described as a painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior. In my life, cerebral palsy has brought about shame. Performing a physical task incorrectly can bring on feelings of humiliation. Those emotions have caused me to experience shame when thinking about my cerebral palsy symptoms. It was challenging to experience those emotions while growing. So, to save myself from dealing with shame surrounding cerebral palsy, it seemed easier to simply remain shielded from viewing or listening to myself. For me, these actions turned into my form of denial. It seemed to save me from facing the fact, things were different for me, as compared to my peers. That fact of being different would bring on emotional pain and sadness, things challenging to handle. When looking at myself on tape, it was easy to understand that something was slightly off during my physical movements, but by not looking, it felt easier to ignore. So, this became my method for twenty plus years of my life. I knew something wasn’t right, but didn’t want to acknowledge it. It was difficult to understand how to deal with the differences between my peers and myself. The pain had to go somewhere, so it became about trying to ignore those emotions.

Those feelings of fear around cerebral palsy persisted for years. The journey toward concurring fears never feels easy. Often the path can be extremely slow moving, almost leaving us wondering if progress is happening at all. But, then something happens to open our eyes, helping us realize how far we have moved forward. This fall has included a couple of those experiences. After years of putting in hours of exercise in an attempt to strengthen my body, we took a video of myself performing an exercise. It was one of the more challenging physical tasks during my time at the gym. The movement involved tossing a lacrosse ball against the wall with my left hand, then catching the rebound with my left hand. The left side of my body is the side most effected by cerebral palsy symptoms. So, tossing and catching any kind of ball with my left limb felt impossible before we began working on performing the task. However, with practice and patience, the process of catching the lacrosse ball with my left hand has become achievable. We have made the work with the ball more complex, as practice makes each step easier.

After working with the lacrosse ball a few times, it was my idea to record our work with it. The exercise seemed relevant to share with other people who struggle with cerebral palsy symptoms. So, the idea would be to take a video and possibly post it for other people to watch the progress we have made. The challenge for me, would be finding the strength to watch the video. If viewing myself was productive and without too much fear, there could be strength to post the recording for people to watch. Having success with this process would be a change from my childhood, when watching myself could not be achieved. When sitting down to look at myself tossing the lacrosse ball, anxiety crept into my emotions. The memory of watching videos in the past, with the shameful feelings attached were with me, but didn’t overwhelm enough to look away. What was found when watching myself perform the exercise became that unfamiliar feeling of acceptance. It filled my emotions with the sense of relief, as anxiety from cerebral palsy began to ease. One of the first thoughts to enter my mind was, the CP didn’t look so off-putting anymore. The man in the video moved differently from other people, but I looked pretty sturdy, and much stronger than in my youth. The recording showed me just how much the hard work in the gym has paid off, while proving maybe there isn’t so much to be embarrassed about when thinking about my cerebral palsy symptoms.

Having found relief from watching the video of myself, it became time to embrace those new emotions. One way to become more familiar with my new-found acceptance was to watch the video multiple times. Each time the acceptance of cerebral palsy seemed to escalate. Finally, after viewing it for a few days, and only becoming more comfortable watching it, it was time to post the video for other people to watch. It was surprisingly comfortable for me to upload my exercise video. When the process was done, there was no hesitation to take the video down. As time went on it only gave me the confidence to look at another aspect of cerebral palsy that had caused fear. The next aspect of cerebral palsy that has hampered me has been my speech. It has never been easy to listen to my voice. The feeling of hearing myself speak has often caused deep upset about my disability. However, after the process of watching the video had gone relatively smoothly, why not try listening to myself speak. If it became possible to get over this hurdle, maybe full acceptance of cerebral palsy would be achievable.

The challenge always seems to be finding the courage to overcome feelings of shame. Those feelings of courage can be fleeting at times. When they do come, it seems advantageous to use them in a positive manner. One afternoon, those emotions of courage came over me and it was time to take on the next challenge of acceptance. That next hurdle would be speech and the thought was to create a personal greeting for my phone. If recording the greeting and listening to it back could be achieved, then I would be furthering my acceptance. But, just like during my childhood, there would be emotions of fear when listening to the greeting. Talking into the microphone on my phone would be the simple part of this process. Hitting play and hearing my voice speak back, would be the emotional aspect. However, in this circumstance it didn’t seem to bring on the shame felt in childhood. The experience of this situation was successful, it had me re-recording my greetings, listening to the playback multiple times until it sounded somewhat comforting to my ears. Even that my speech had become somewhat comforting to my own ears seemed to be a large step. Acceptance of cerebral palsy had taken another step, as listening to my own speech hadn’t left me running away in shame.

Courage has a couple of interesting definitions. The word can be defined as the ability to do something that frightens one. Courage can also be strength in the face of pain or grief. For me, it’s often an emotion that is felt strongly at times. While, other times courage tends to elude my feelings. This fall, that strength seemed to be part of my emotions more often. It gave me the ability to take looks into my battle with cerebral palsy, finding acceptance. The work that had been going on for years was reducing the fear inside. So, taking a look at myself no longer revealed someone who appeared fragile. Sure, my movements look different due to my disability, but they don’t appear unstable. As for the speech, it has slowly improved from childhood as well. Listening to my voicemail didn’t sound so bad, leading to a more accepting emotion over things beyond my control. That experience also reminded me, if my speech can slow down a bit, it’s easier to understand. Therefore, taking my time will be helpful for everyone involved. The biggest lesson from this fall has been, when those emotions of courage show up, try using them to improve things that may have been stuck.










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