In some of my Cerebral Palsy blogs, I have touched on various issues around the condition itself, but I haven’t talked about how visible it was when I was a child, or how my disability was ignored.
It would go on to take me 48 years to find out that my doctors and parents knew about my diagnosis. As a consequence, all the difficulties I had eventually took their toll and manifested itself in anger issues. ‘I was an angry child living in the depths of emotional despair’ that this was my life.
The being misunderstood and continually having to fight my corner to be heard, to be listened to, to be understood instead of being misunderstood, feeling out of my depth emotionally on so many issues, being out of touch with reality because I was emotionally struggling, wanting a different reality around something I didn’t know about or what it was that I had. I had to find a way to cope with life, with my anxieties, with bad thoughts and with myself.
Trying to find a place with my family alongside my difficulties and hoping that one day I would wake up and this was all a dream. I just didn’t get it, what was so difficult? But it would be my difficulties around the disability itself that I had to deal with on my own that would take its toll, emotionally. Sadly, it took me until my mid-thirties to make the correlation between my anger, and why I presented that way.
I knew I had a bad leg and that my ‘bad’ foot looked different to my ‘good’ foot, but again it would take me many years to find out it was a ‘foot drop,’ that I had. I also wasn’t aware of a problem with my arm because that wasn’t altogether obvious. I also wasn’t aware of what my neurological struggles were. 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 wore skirts, the lack of muscle tone in my left leg was visible so people would continually stare. I would limp and would trip when I got tired. I hated that.
I also hated that I walked toe heel and dragged my leg. I hated that my father thought to pick me up on something he knew I couldn’t change and I didn’t. I hated that I struggled to fit into shoes and that when I did manage to get shoes they wore differently. I was also upset at having to wear a heal raise on the outside of my shoe for my leg length difference and that eventually I had to have shoes made for me that didn’t work, because they made my foot look even more deformed.
Not having the support so that I could at least function ‘in my own normal’ meant that I retreated into my own little world, a world that I was at least familiar with and one that was familiar with me. A world where I didn’t have to think about anything, perhaps because there wasn’t anything to think about. Perhaps I had already worked out that things would never change. Perhaps I had already worked out that it was me that would have to change. But I know that even through those times, subconsciously I wasn’t giving up. I wasn’t done yet.
It’s true to say that I failed at most things. In Games lessons at school I managed easier sports such as Netball. Where I needed a sick note to opt out of certain Games lessons like high jump, I was expected to join in. Being allowed to opt out wasn’t an option and where I needed understanding, there was none.
I was expected to be the same as my siblings, no allowances were made. My siblings also struggled around my difficulties, they seemed indifferent towards my issues, but perhaps like me, they didn’t understand my difficulties. Perhaps them being in the dark was also an issue for them, but sadly they were living on the other side of my difficulties. That can’t have been easy.