What is it like living with cerebral palsy? I cannot answer that question, as for 46 years of my life I never knew that’s what I had. It was in March 2009 that I was finally diagnosed with cerebral palsy. I was born the second of premature twins.
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 and alone.
I was out of touch with reality because I had no idea what I was dealing with. I was also out of touch with my own thoughts, primarily because I had no understanding around my physical, mental and emotional issues. We didn’t talk about my disability: my issues were never brought up unless I talked about them, then they were quickly dismissed as if the condition didn’t exist. But it did.
I first had a diagnosis of cerebral palsy 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.
When 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. My dad, on the other hand, was not unduly concerned, and said everything would be fine.
Growing up, I felt different for all the wrong reasons. I knew there were things I struggled with. Although I didn’t not like myself, I didn’t like being 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 later I remember telling myself that I was glad to be me. To this day I don’t know why I said it; 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 I knew nothing about and emotional issues that weren’t being addressed or going away.
Although I spent a lot of my formative years being angry, it would go on to take 49 years for my father to say that I was the most kind, caring and considerate of his children. In order to earn his acceptance on a disability I didn’t know I had, I found myself conforming more than any of my other siblings.
My mum tried to deal with me but couldn’t cope. She was always singling me out to do exercises, at a time when my siblings were doing something they wanted to do. I became irritated with this, 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. I never made the correlation because I didn’t know what was wrong with me and because nothing was ever explained.
Questions were never asked about my condition and how the condition presented, mentally, emotionally or physically. With my notes in front of me I know the original diagnosis of Spastic Monoparesis at the age of two wasn’t correct, because I have two limbs affected not one, and my leg isn’t spastic. This diagnosis was unknown to me at the time, and for most of my life.
Over the years I have had to work everything out for myself, to bring my symptoms and the right diagnosis together. I have little muscle tone from the hip to the ankle on my left side. I have a ‘foot drop’ and my leg on my left side is ¾” shorter than my right side. Because of my ‘foot drop’ I also have a bunion. This explains why as a child I would drag my leg and walk toe-heel all the time.
Going out for walks my father would walk behind me, or so it seemed, telling me to stop dragging my leg and pick my foot up; he will have known that was impossible for me to do. As time went by and as a consequence of him picking me up on those things, I struggled with walking in and out of rooms, for fear of people watching me.
I hated looking at myself in the mirror. When I was standing straight, I was lopsided because of a leg length difference of ¾”, and I couldn’t bear to look. When I spoke to mum about my being lopsided, she would often say ‘I couldn’t have a pretty face without a pretty leg.’ With hindsight without her realising, she confirmed she was also aware of my diagnosis.
When I wore skirts, the lack of muscle tone in my left leg was visible so people stared. I limped and tripped when I got tired. I hated that. I also hated that I walked toe-heel that I dragged my leg and I couldn’t pick my foot up. I hated even more that I was being picked on for something I couldn’t change and that was becoming an issue.
I hated that I struggled to fit into shoes and that when I did manage to get shoes to fit, they wore differently. I was also upset at having to wear a heel lift on the outside of my shoe to compensate for my leg length difference, and that eventually I had to have shoes made for me that made my foot look even more deformed.
Struggling with my handwriting, I hated not being able to write spontaneously in front of anyone. For example, writing a cheque at a till was difficult, writing anything, in fact. I continue to struggle to write with uniform outlines. Since my cerebral palsy diagnosis, my neurologist has explained that the part of the brain that controls my motor skills functions is also affected, so that now explains the problem with my handwriting.
As a consequence of my parents wanting me to be the same as my siblings, my issues lay dormant for many years, as I continued to struggle. I lacked mental and emotional support. It didn’t help that I was born in the 1960s. In the 1960s, disability was brushed under the carpet.
I was told by the specialist that I was perhaps lucky, because back in the day, because of my disability, I would have been considered a spastic and would have had to attend a special needs school. He was clear about that. He also said I would have had to have worn calipers, and that having my issues ignored was probably a better option.
For fifteen years of my life I went to physiotherapy once a week, and the Athletic Institute for exercises once a year in May and the hospital once a year in February. All those visits seemed to eat into my childhood. As a result of my struggles, I lived a somewhat insular life hiding a lot of my issues behind the façade.
Not knowing what my condition was gave me a quiet confidence that tomorrow was another day and that things would change, and I would get better. To this day I believe it was because I had no idea of what I was dealing with; it was the not knowing that gave me the hope.