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 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, and even 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 together some of my early thoughts and recollections. 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, 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 on that. I just know I wasn’t always unhappy being me. I was unhappy not knowing what was wrong with me. I also knew that deep down I wasn’t a bad child. I was an angry child, with a physical disability 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 to admit 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 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 - 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, or how the condition presented itself and why. I now have one or two medical records diagnosing me with Spastic Monoparesis at the age of 2 and although the diagnosis was wrong, it was still a diagnosis I didn't know about.
There was little to no muscle mass from my hip to my ankle, and I also have a dropped foot. As a result of those problems, I would drag my leg because I couldn't physically pick it up, so I walked toe heel all the time. On walks, my father would walk behind me and tell me to stop dragging my leg and to pick my foot up. I think as a consequence, I struggled with walking in and out of rooms, for fear of people watching me.
I also couldn’t write in front of anyone. For example, writing a cheque at a till was difficult, or writing something down seemed to be a problem. I have since been told that 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 the motor skill functions is also affected, so that will explain the problems with my handwriting.
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 wanted me to be the same as my siblings. My problems, therefore, lay dormant for many years with the sad reality that I didn’t cope at all on an emotional level. Apart from my daily exercise routine, there was no emotional support.
I know that in the 60’s disabilities were brushed under the carpet, but I feel that is still not a valid excuse. I know at the time I would have been considered an outcast. I was told by my specialist I was lucky; back in the day, I would most likely have been considered a 'spastic' and my life would have taken a different turn. Being ignored was a better option.
For fifteen years, I went for my annual trip to the hospital. I would be at 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 about my condition gave me a quiet confidence that tomorrow had the potential of a new 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 now what the condition is, 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 'fix'. 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 some of what is written here, but not all. I still have a long way to go.
He has confirmed the points I have raised. With his help, I am in a better place.