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 that I was finally diagnosed. I was born the second of a premature twin.
How did I feel as the child then, the adult now? Those times were enormously difficult for me. I was an angry child living in the depths of despair. Some days I felt isolated, angry and misunderstood. Other days I felt frustrated insular and alone.
I was out of touch with reality because I had no idea what was going on. I was out of touch with my own thoughts on what I was dealing with because I had no understanding. It also wasn’t something my family talked about. “There was never anything wrong with me.” It was also 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!
Sadly, I don’t 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 now have a letter in my possession for a referral to a Specialist, as there were concerns about my balance.
I 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 that when I tried to crawl I was finding it difficult to balance. My dad on the other hand, was not unduly concerned and said it would be fine.
I grew up knowing I was different. I knew there were things I struggled with. I felt different for all the wrong reasons. Although I didn’t like myself, I didn’t always enjoy being who I was because I was so angry, although every now and again my kind side would appear, and I would somehow be able to separate the two issues. There was the angry Ilana with the condition and there was the real me.
A few years down the line and I remember telling myself that I was glad to be me. To this day I don’t know why I said it, I have no understanding on that, I just knew I wasn’t always unhappy being me. I also knew that deep down I wasn’t a bad child. I was an angry child with a disability and emotional issues that simply weren’t being addressed.
Although I spent a lot of my formative years being angry, it would go on to take many years for my father to admit that out of his children I was the most kind, caring and considerate. In order to become accepted I seemed to conform more than any of my other siblings.
My mum 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 siblings were doing something they wanted to do. It was never when they were doing homework. I wasn’t comfortable doing exercises and nine times out of ten ‘I would fight the system and become angry’ at the injustice of it all.
My mum would tell me I couldn’t have a pretty face without a pretty leg. Again, I didn’t understand the concept because nothing was ever explained. Questions never seemed to be asked about my condition and how the condition presented itself and why. But I now have my medical records with a diagnosis of Spastic Monoparesis at the age of 2 and although the diagnosis was wrong because I have two limbs affected, it was still a diagnosis I didn’t know about.
There was no working muscle from the hip to the ankle. I have a drop foot and a leg length difference from the knee to the ankle, which explains why as a child I would drag my leg and walk toe heel all the time. Going out for walks my father used to walk behind me telling me to stop dragging my leg and pick my foot up, but he will have known that wasn’t something I could do. As time went by, and as a consequence of that, I would struggle 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 struggle to write with uniform outlines. My Neurologist has now explained that the part of the brain that controls my motor skills functions is also affected, so that will explain the problems with my handwriting.
My parents wanted me to be the same as my siblings, therefore my problems lay dormant for many years with the sad reality that I didn’t cope at all on an emotional level. Apart from my daily exercises, there was no emotional support.
I know that in the 1960’s, disability was brushed under the carpet, but that is no excuse. I was told by my Specialist I was lucky because back in the day I would very much have been considered a spastic and my life would have taken a different turn. Being ignored he thought was a better option.
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. That gave me hope.
Knowing what the condition is now, I know that will never happen. I now have to learn how to deal with it properly in the knowledge that it is not something I can ever sort out. In my head yes, physically no. Before being signed off at the age of 25, I was told that I would have to continue to exercise daily. The Specialist was clear about that.
Thanks to an MRI scan and knowing that I have Cerebral Palsy and working with my Neurologist I have now been able to bring some closure on some of what is written here. I still have some way to go but with his help, I am in a much better place.