Meeting the Challenge of Living with Cerebral Palsy

Being born with cerebral palsy can lead to a challenging  life for people with the birth defect. But for this blogger with cerebral palsy it has been a very blessed and fulfilling life. My future is so bright I’ve got to wear shades.

James Carter, born with mild Cerebral Palsy

Cerebral palsy or C.P. is: the term used for a group of non-progressive disorders of movement and posture caused by abnormal development of, or damage to, motor control centers of the brain. CP is caused by events before, during, or after birth. The abnormalities of muscle control that define CP are often accompanied by other neurological and physical abnormalities.

I have a little recollection of all the stages of my life living with cerebral palsy but I will try to piece some of my early thoughts and recollections together. I know that I first had problems at birth and later referral to a specialist, at Children’s Orthopedic Hospital, as there were many concerns about my balance. I simply couldn’t balance right.

How did I feel as the child then, the adult now? Those times were enormously difficult for me. Some days I felt isolated, angry, cheated, misunderstood and frustrated. Other days I felt insular and alone. It wasn’t something my family talked about. There was never anything wrong with me. It was never brought up unless I talked about it then it was quickly dismissed like hot breakfast as if the condition didn’t exist. But it did!

When I was beginning to crawl I would fall, try to get up, then fall again. It was never something I could control but how I wished I could. My mother noticed it right away when I tried to crawl that I was finding it difficult to balance. My father on the other hand was not unduly concerned and thought it would be fine; although my father recollects that it was the other way round.

I knew I was different then. I knew there were things I was struggling with. I felt different for all the wrong reasons and didn’t always feel comfortable in my skin. Although I didn’t despise myself I didn’t always enjoy being who I was, although I could sometimes separate the two issues. I knew there was James with a condition and there was James the person.

A few years down the line and I remember telling myself that I was glad to be me. I don’t know why I said it and to this day I have no understanding about why I did, I just know I wasn’t unhappy being me. I was unhappy with being physically restricted. I also knew that deep down I wasn’t bad in any way. I was an angry child with issues that weren’t going away.

Although there were many times when I was angry, deep down my parents knew I was kind, caring and considerate and those kind times did peep through occasionally. In order to become accepted I seemed to conform more just my sibling.

My mother almost always deal with me and did a fantastic job, When I was younger my mother use to always baby me. It wasn’t something I was ever comfortable with and nine times out of ten I would fight the system and become angry at the injustice. As a child I thought that was unfair because my sister got to do more than me.

My parents just accepted that I had a leg and an arm that just weren’t working properly. There was little bulk from my hip to my ankle. My left foot was a different shape then other foot.

I drag my leg. I don’t seem to be able to pick my leg up, so I walked toe heal all the time. When we went for walks my father would walk behind me and tell me to stop dragging my leg and pick my foot up, none of which I could do. I think as a result, I struggled with walking in and out of a room, without thinking people were watching me.

My handwriting was another result. I couldn’t write in front of anyone. For example writing clear at a chair and desk was difficult, or writing something down for myself seemed to be a problem. My outlines were different and still are. That I believe is the Cerebral Palsy scenario of my particular brain damage. I struggle to write like everyone else and still get it wrong. My Neurologist has explained that the part of the brain that controls my motor skills functions is also affected, so that will explain the problems I have.

Those experiences lasted a good part of my early life. For many years I couldn’t walk into a room without seeing people watching my every move. I couldn’t walk out of the same room without fear of people watching me. I used to turn and walk quickly to avoid eye contact.

My mother and father found asking questions difficult, questions that may have perhaps helped me; instead they would go with what the specialists told them. So I became completely cut off from the outside world. They seemed very accepting of what the specialists had to say and never delved deeper to find out more. They always believed the specialists opinions, as they were the specialists. They were happy.

There didn’t seem to be much to unravel as a result. They wanted me to be the same as my sibling. My problems therefore lay dormant for many years with the sad reality being that I didn’t cope at all on an emotional level. Apart from my exercises I was to do daily there was lots of family support. My parents  give me all the support and love growing up that any kid could ever ask for and then some. They dealt with me the only way they knew how. In the 60’s disability got brushed under the carpet. I would’ve been considered a freak, and would have been outcast from society. I got lucky. I was ignored somewhat.

For twenty-one years of my life I went to the hospital once a year, the athletic start for exercises once a year and physiotherapy once a week. All those visits seemed to eat into my childhood. I lived a somewhat insular life hiding a lot of my issues behind the problems I faced .

Not knowing what my condition was gave me a quiet confidence that tomorrow was another day and that things where different, I would get better, my foot and arm would somehow magically right themselves. I always felt confident of that because I had no idea what  I was dealing with, I was always optimistic.

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James Carter

James Carter has a real passion for online "stuff", is an avid WordPress fan and user, and gets great satisfaction out of helping others. -- so in his spare time, he's busy doing community service with his church, spending time with family and friends while creating post for this blog.

2 Comments:

  1. Thank you so much for this beautiful article! As I read it, I realized that this entire article is me right now.. every worry.. every question.. this really hit home with how I’ve been feeling. We just encountered one of the gloomy doctors who crushed our hearts, but it didn’t take long through prayer to overcome the sadness and have hope for a bright future for our boy. He will be 6 months on the first. Suffered from lack of oxygen at birth and was diagnosed with HIE. We were told he would not make it. But he did. Now the concern stands with CP as he gets older. Also concern for his vision. He is seeing all his therapists and we work with him every single day. He is behind on milestones, but is making leaps and bounds every single day and never ceases to amaze us with his strength and how far he has come. This article brought peace to my heart! Thank you again!

    • As someone who was born with mild cerebral palsy I can honestly tell you Tracy that I can do whatever I put my mind to even with C.P. My mother and father always told me that I could do whatever I put my mind to. Thanks for visiting my blog and sharing your story and taking the time to write a comment on the blog.

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