A Journey With Cerebral Palsy

There has been a feeling with cerebral palsy challenging to shake. The emotion of becoming more than has been expected. Continuously striving to go beyond the limitation of my disability. Instead of exploring what those limitations might have been. Each time my expectations of myself were not met was detrimental. Detrimental to my ability in building sustainable self-worth. Those perceived shortcomings only knocked me into circumstances making things worse. Finding friends who I was willing to give up for, in order to be included. For my part, battling against the impact of cerebral palsy wasn’t working. Each time, the attempt seemed to fail in my eyes. Growing more and more tiresome of the energy required to beat the odds. Wondering why things couldn’t be easier for me to execute. These were the situations causing much discouragement while growing. Listening to the influences justifying my feelings of giving up on myself. Most everything around me was leaning toward the place of giving up, folding the tent. Our family was falling apart before my eyes. Which, felt in part to be resulting from a child with a disability. The courage to battle my disability was rooted in the expectation of family togetherness. The assumption of loyalty to something greater than oneself. Even through an effort of trying to understand why things were taking place. It was beyond my ability to process the reasons this support system was being dismantled.

As a person taking on the difference of disability. Normalcy becomes crucial to the ability of fortitude. Having aspects of life providing some kind of predictability. Even with a troubled father, having him around provided comfort. The family unit, even with its dysfunction, kept me fighting. When it disbanded, predictability was my priority moving forward. Something causing the battle against my disability to seem worthwhile. But, the energy derived from family togetherness couldn’t be replaced. Having me feel as though things perceived to be foundations of life, might not be that way after all. Our family had become an anchor point inside a world not created for my disability. Somewhere to go for comfort when the world didn’t understand my movements. When they questioned why the movements patterns and speech was weird. My family understood and was there to provide support. Giving me the confidence to stand on my own two feet. I thought we were all in this together. Being placed in the unique situation of having someone with cerebral palsy in the family. They always gave the feeling, whatever the unique challenges, we would tackle them together. It wasn’t just about me and cerebral palsy, we would support each other no matter the hill to climb. The theory all changed when he walked out the door, never to walk back into the home.

It seems a family unit takes on greater value when disability becomes part of life. Having people around who are closest to understanding how the disability feels. They are with me every day to witness the high and low points. Gaining a familiarity with the adjustments required while having cerebral palsy in the world. But, when he opened himself up to other desires. The valuable stability for me became fractured. The dismantling of family probably means different things to different people. Like anything else in life, cerebral palsy places wrinkles in the circumstances. When he chose to leave, an advocate for my disability was lost. Even when that advocacy only showed itself in the presence of others. Comfort was gained even when he was only putting on a show. The narcissism of my father dictated his true kindness showed up just in public. Where he could gain attention and notoriety for his treatment of his disabled child. His shift in priorities, brought on by his emotional sickness, changed those moments of care. Loosing even the small symbols of support was detrimental. Also, lost was the feeling of getting through obstacles. Watching the message be sent that running away was acceptable. Finding places to hide, rather than facing challenges placed on one’s plate. Encouraging the actions of selfishness, no matter who the actions might be hurting. The embarrassment was found in continuing to desire a place in his life.

There was pursuit of my father no matter the consequence. Desperately wanting to continue on as part of his life. Willing to do whatever he might have asked of myself. The impact of others in my life didn’t matter. He was the person I wanted to be around. Desperate for his approval and to learn from him. Not wanting to get cut out of feeling his emotional abuse. Almost addicted to being one of the ponds in his life. Anything that could be done to be around him. If his satisfaction was tied to using me in some way, the using would be welcome. Willing to become whatever he saw as productive. He seemed to look upon me, the way I saw myself. As his little puppy dog. A person having cerebral palsy without the ability of standing up for myself. The belittlement was simply seen as attention on myself. Allowing my self-worth to climb deeper and deeper into the hole being created. There wasn’t any way to escape the harm being done. We were creating an identity for myself. I was going to lack the ability to make anything of my life. Always desperately in need of his attention and approval. Wanting to show the ability to become whatever he desired. If failing at things seemed to bring us closer. Giving him the ability to continuously berate my ability. Then, continuing to disappoint turned into a means for acceptance. The idea carried itself over into other areas of my life.

Cerebral palsy became my reasoning for halting effort. Making myself into a disappointment wouldn’t be challenging. Especially when it gained me the attention of my father. Notoriety escaping me while he lived in the home. Beginning to understand his desire to be the center of attention, without understanding narcissism. The aspect of his personality causing things to take wild turns. With cerebral palsy making most every physical task more challenging. My father seemed to lean into the physical deficits like hadn’t occurred prior. Questioning my ability to do most anything. Pointing out the struggles without any attention being paid to how they might be solved. He seemed to appreciate watching me struggle. Enjoying the failed attempts, sometimes making me into a fool. Doubting my ability to attend college, then question my intellectual skill to graduate. Everything was being done to elevate his standing in life. If he wasn’t looking good, it was someone else who was struggling to succeed, reflecting poorly on himself. But, the failure gained attention from him. Albeit, emotionally abusive attention, but I didn’t understand those concepts at the time. It was about leaning into my cerebral palsy to make him look good. While, also gaining his misguided approval. We had both positioned ourselves as victims in the world. Me seeming to feel it more so than him. The belittlement felt deserved, due to my failure in rising above my disability. My slot would be to fail in life. Making him feel better about himself.

The pattern of behavior was learned and transferred. It seemed to become my way of fitting in with people. Wanting them to shine in the spotlight. As my father had demanded most of my life. The actions also served a purpose for my social interaction. Allowing me to blend into the crowd. Not wanting to be seen and have my disability noticed. The problem became the toll taken on myself. Thinking of myself as someone to be seen and not heard. Bending at the whim of others around me, becoming what they seemed to want. The thought process took a heavy toll on my self-worth. Conceptualizing my worthiness as being the prop for someone else. It felt like the only way to gain acceptance. The practice of shifting myself to gain approval started with my father. When he walked out the door in pursuit of other things, my actions didn’t stop. Finding other people in my life who seemed to want similar actions. Desiring that my personality fall into line with their thinking. Having been raised to mold myself around someone else’s wishes. It felt like the natural friendships to pursue. Turning itself into a life lived in fear. Having to juggle the ideas my father had for what I should be around him. While also wanting to fit in with friendships. Their needs seemed to be, for me to help them feel like better people. Room was running out for me to think about my wants. Eventually only thinking about how to make other people happy. The wrong kind of people.

Growing up around narcissism was challenging. Though it didn’t feel challenging at the time. It felt normal, like all men operated this way to some extent. Almost bordering on something to be idealized. Wanting to soak up the actions, learning how to make myself the center of attention for others. Through my eyes, my father was worshipped by others, not often being alone. While cerebral palsy caused me to feel different and alone, his manipulation had people around him. So, I begged for his attention, even after the things he carelessly did to the family. Still, wanting to idealize who he was as a person. Possibly the age-old story of a son and their father. Unable to truly understand the things he had done. Often thinking there had to be a logical explanation. Justifying my desire to remain part of his life. Without recognition of the impact on me from being in his space. The time spent with him only contributed to my ongoing problem with anger and rage. The emotional abuse brought on by his psychological sickness was being defended by myself. People just didn’t understand my father, causing them to treat him unfairly. When time began pointing out, I was the one lacking understanding. Unable to admit the poor treatment being heaped upon myself. Treatment that was beyond my control and far from being deserved. However, during those times, my goal was to be just what he wanted. His sidekick, justifying his abusive behaviors, thinking if I were better, things would be better.

My buddy from the bus had similar traits to my father. Making it any easy transition for him to fill the partially vacated role. The role of becoming the sidekick for someone else as well. Thinking filling the narrative for both people in my life was doable. Feeling I could be exactly what they both wanted. The education had been there for most of my life. The cerebral palsy helping me feel deserving of that sidekick persona. Leading me to believe I needed taking care of by them. While in return, they could treat me however they saw fit. The relationships were a tremendous battle for periods feeling unending. Always fighting to find ways of making them feel better. Concerning myself with speaking to them and of them correctly. While providing information that never should have been dispensed to them. Learning later, all they did with the information was turned it around. Manipulating the confided stories into hurting others, gaining advantage for themselves. Placing me in positions of again looking like the fool. While destroying any trust people might have had in my discretion. They were situations I continued to place myself within. The old adage that if you fool me once, it’s on you. Every other time I was fooled by trusting them, well those times fell at my feet. The more desperate attempts made to gain their approval, the further into sadness I fell.

The sadness inside was challenging to understand. During that time, things didn’t feel sad. It wasn’t the emotional description coming to mind. Frustration would have been the term in my thoughts. Overwhelming feelings of frustration, boiling into angry outbursts. Living in constant confusion over my inability to make people happy. Even when it seemed as though everything was being done to make them happy. Still, it felt like the emotional abuse, bullying, and manipulation could not be stopped. Without any idea about those terms, or an understanding that these things were happening. My emotions just registered the pain being felt. Thinking it could be fixed by becoming a better person. Which meant giving in more and more to their wants. Along with taking the insults and attempting to change my behaviors. Making my behaviors more in line with their liking. Looking back on those situations today. The cycle was vicious, lasting so many years of my life. Believing it was deserved because of my disability. In the case of my father, thinking I was doing something wrong, because cerebral palsy wouldn’t disappear. While in the case of my buddy, believing I had trouble acting the way he wanted. Thinking his friendship and protection couldn’t be lived without. My challenge of cerebral palsy required his help. Feeling as though others wouldn’t take the time to understand. My self-worth was being tied up with cerebral palsy in ways appearing detrimental. Giving me the inability to feel worthy of speaking up, or standing up for myself. Believing I needed others to stand up for my emotions.

The sacrificing of my inner voice was pricey. Allowing my thoughts about cerebral palsy to be negative. Quieting my ability to believe in myself. Leading me into adopting the ideas some had about myself. Giving up on the concept of continuing to fight. Without the ability to understand it wasn’t about my actions. The relationships holding so much turmoil over my life were more about other people. It had far less to do with the actions I was taking. Far more to do with the psychological makeup of them. Going from a father who struggled with psychological challenges. Moving right along to a buddy who struggled with psychological challenges. Wanting to believe these personality traits causing so much pain in others could be healed. Showing a willingness to take the backseat role. Believing cerebral palsy left me deserving of falling into the sidekick pattern. While simultaneously hoping, it could do some good for these two people who seemed to struggle. It didn’t seem to help them along their way at all. Realizing later in life, they were going to cause emotional injury no matter what happened. Their lives didn’t seem to be fulfilled without belittling those around them. Waking up to the possibility of it having nothing to do with my actions. Pulling my life away from them. Their hurting of other people continued taking place. Other people who got emotionally hurt were typically developing. They simply looked for victims wanting to help them feel superior. My mistake was raising my hand and making myself available.