Everyone probably experiences times where a little help would be nice. Sometimes help may be necessary. If your car breaks down and you’re unfamiliar with the finer points of repairing an engine. Other times, help might simply make something easier. It could be a project you could handle yourself, but the assistance of someone close takes away some stress. Cerebral palsy feels slightly more complex. There are things I may know how to get done, but lack the physical ability to accomplish them. The intention tremor in my hands can lead to a spill or tight quarters can inhibit much of my physical ability. In these situations, help may become almost necessary. Most physical tasks are performed more easily by others and their assistance is often helpful, providing a difficult balance between staying independent and accepting the help. For something to be easy, it is achieved without great effort; presenting few difficulties. Many physical tasks are made more challenging with cerebral palsy. Living in a world created to be easier for able bodied individuals, I’m thankful for the generosity of those around me to make things a little easier.
There is a book I read recently about an individual with cerebral palsy. He has spent his life in a wheel chair. While reading his book, I found words he used to describe emotions I share with him, but have trouble voicing. In certain situations, he has found himself feeling gratefully embarrassed. The first time I read his description of this emotion I was halted in my reading tracks. Thinking grateful embarrassment was a unique turn of phrase and beginning to understand its relation to some of my emotions. Cerebral palsy of any degree seems to lend itself to feelings of occasional embarrassment. There will always be occasions with CP where assistance from others may be required. Lacking the full ability to be independent in some scenarios and requiring help, can leave me feeling a bit embarrassed. On the other hand, those feelings of embarrassment can overshadow the emotion of gratefulness for the assistance. There can be a mixture of emotion between gratefulness and embarrassment. I found myself in a couple of these situations this week. People close to me, going out of their way to help.
It’s a joy to celebrate an engagement. This week I was blessed with the chance to celebrate the engagement of my cousin. We had a family dinner including the family of my cousin’s fiancée. In anticipation of the family dinner, just like most family dinners, I experienced some anxiety. The dinner would involve interacting with some people I was unfamiliar with. I also anticipated sitting in a confined space gathered around the table. The confined space would make it challenging to physically maneuver; help pass plates of food, or reach for my drinking glass. To my surprise, I was invited to sit at the head of the table. It wasn’t because I was the honored guest, that distinction went to my cousin and his fiancée, nor was I the most important person at the table, or head of the household. My Aunt and Uncle simply placed me there because it was the seat at the table with the most space. It caused me to feel less confined, allowing me to be less concerned with my physical movements and more involved with the conversations around the table. With my Uncle and Aunt on either side, they helped with the food and gave me a straw to assist with drinking the glass of water. It was one of the most comfortable family dinners I’ve been involved with. Everything was made a little easier than it had been prior.
Growing up I never found the courage to request comforts. I always felt it pressed upon me to avoid becoming a perceived inconvenience and to this day I still struggle with that courage to request help. Most likely from emotions of embarrassment and a desire to be void of cerebral palsy. However, writing has given me a voice to articulate the challenges I face. It’s humbling to find people around me who read about and respond to those trials. This experience has opened my eyes to the love and support that can be found. Throughout life I have tried desperately to conceal the challenges of cerebral palsy. Living in the fear I wouldn’t be accepted if I were more open about CP. I’ve found there to be a great deal of assistance upon my ability to recognize and accept the way loved ones can help. It has also required the process of releasing personal embarrassment over CP symptoms. For the second time this week, I found myself struggling with that nagging embarrassment emotion. Only this time, it was on the ski slopes.
Downhill skiing has always been an interesting venture. It’s a sport I’ve historically shied away from, experiencing difficulty finding someone to learn with. Recently, skiing has become an activity shared with my brother. We each continue to enjoy going up to the mountain, spending time learning the craft. Skiing as a younger man felt like it was easier. Today, it seems I’m learning to ski from scratch and the loss of those skills of my youth can frustrate. For the first time this week, I took a couple falls. It was more challenging to get back up, collect myself on the skies, and continue then I recall. Honestly, I don’t know how long it would have taken without the help of my brother. The situation caused that mixture of embarrassment and gratefulness. I wanted to believe I could get up from those falls on my own and maybe with more experience that goal will be achieved. But, through my embarrassment and frustration, he stuck with me. Helping me get back up, get back into my skies, and continue our day on the slopes. My brother was making things easier, so I could continue to overcome the challenge of skiing with CP. It seems there was little to be embarrassed about and much more to be grateful for, but sometimes negative emotions win. Those emotions of embarrassment and gratefulness continue to battle inside. Cerebral palsy can leave my frustration overpowering my gratitude and hopefully, as time progresses, that latter emotion can take over the former.
It’s an interesting dynamic living in a world that wasn’t created for you. Most activities are made easier for able bodied individuals. From the cars, we drive to the glasses we drink out of and most things in between, these everyday things weren’t designed for someone with cerebral palsy. Still, I’m required to adapt, finding ways to achieve more independence. Sometimes with help, I experience relief from the physical challenges life has provided. There are times in my life when that gift of assistance can also feel embarrassing. The emotions can lead to frustration over my lack of physical ability. It seems to become a selfish cycle. Only broken when I remind myself of the blessings people heap upon me with their willingness to help. They allow me to achieve things without great effort; taking away the difficulties that might be present. Those actions help me enjoy a family dinner and pursue the goal of becoming a better skier. I’m thankful to those loved ones for that.
A Journey With Cerebral Palsy 