What is it like living with cerebral palsy? I cannot truly answer that question as for 46 years of my life I never knew that’s what I had. It was only in March 2009 I was finally diagnosed.
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 cakes as if the condition didn’t exist. But it did!
I do not have a recollection of all the stages of my life living with cerebral palsy but I will try and piece some of my early thoughts and recollections together. I know that I first had problems at the age of two as I have a letter in my possession for a referral to a specialist, as there were many concerns about my balance. I simply couldn’t balance.
Where my twin 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 mum noticed more or less straight away when I tried to crawl that I was finding it difficult to balance. My dad on the other hand, was not unduly concerned and said it would be fine.
I knew I was different then. I knew there were things I was struggling with. I felt different for all the wrong reasons. Although I didn’t despise myself, I didn’t always enjoy being who I was, particularly when I was in my angry phase; although every now and again I would sometimes separate the two issues. There was Ilana with the condition and there was Ilana 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 as to 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 a bad child. I was an angry child, with physical and emotional issues that weren’t going away and weren’t being addressed.
Although there were many times when I was angry, it would go on to take many years for my parents (my father particularly) to know that I was kind, caring and considerate and those times did peep through occasionally. In order to become accepted I seemed to conform more than any of my other siblings.
My mother tried to deal with me but couldn’t cope. I was always being singled out to do exercises, but it was always at a time when my brother and sisters would be doing something they wanted to do. It was never when they were doing homework. 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 of it all. My mother would tell me I couldn’t have a beautiful face without a beautiful leg. I didn’t understand the concept because nothing was ever explained.
Questions were never asked about my condition in front of me and how the condition presented itself and why. I don’t know whether my parents actually knew, but it could be that my parents knew what was wrong with me, but found it difficult to deal with, so 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. I also have a dropped foot. I used to drag my leg. I couldn’t pick my leg up, so I walked toe heel all the time. When we used to go 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 consequence, I struggled with walking in and out of a room, for fear of people watching me. My handwriting was another consequence. I couldn’t write in front of anyone. For example writing a cheque at a till 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 with uniform outlines. My Neurologist has explained that the part of the brain that controls my motor skills functions is also affected, so that will explain the additional 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 also walk out of the same room without fear of people watching me. I used to turn and walk quickly so as to avoid eye contact.
My parents found asking questions difficult, questions that may have perhaps helped me; instead they would go with what was said 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. There didn’t seem to be much to unravel as a consequence.
They wanted me to be the same as my siblings. 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 which I was supposed to do daily, there was no support. They dealt with me the only way they knew how.
In the 60’s disability was brushed under the carpet. I would have been considered a spastic and would have been outcast from society. I’ve been told I was lucky, because I was ignored. For fifteen years of my life I went to the hospital once a year, the athletic institute 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 on a daily basis. Not knowing what my condition was gave me a quiet confidence that tomorrow was another day and that things would be different, I would get better, my foot and leg would somehow magically right themselves.
I always felt confident of that because I had no idea what it was I was dealing with, I was always optimistic. Knowing what the condition is now I know that will never happen. I have to learn how to deal with it properly in the knowledge that it is not something I can ever sort, in my head yes, physically no. I need to exercise daily not being able to do that will put me in a totally different place which I will have to deal with when the time comes.
Thanks to my Neurologist I have brought closure on most of what is written here. He has confirmed the points I have raised. With his help, I am in a much better place. I am more at peace with myself now.