My early life

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.


5 Mar, 2018

6 thoughts on “My early life

  1. So young, so sad. But you somehow stayed upright, with your distinctive characteristics, lovely in every respect.

    You are far far away from the snakes and bugs now Ilana.

    1. Your words mean so much. Thanks Tim. Yes, deep down somewhere in my psyche, the universe was telling me not to give up. That feeling of ‘just knowing’ although not understanding ‘the knowing’ stayed with me.

      But without my experiences, without having gone through this life, I couldn’t do what I do today with my website, in what I do. Through some very dark days, I feel I’ve come through even brighter.

      As my story shows, through opportunities we have a choice. The sad reality is that although people see their opportunities, as I saw mine, they’re too scared to open the door for fear of what’s on the other side.

  2. This makes such sad reading, especially when it was all so unnecessary.

    You can take some comfort in that those who could have changed things and put you first, are listening to you now and are probably very proud of you and your achievements.

    Hard as it was for you and no child should have been subject to that, I believe you went through it for a reason. I believe your Diary is that reason.

    1. Yes, although there is abuse and negativity tied to my experiences, I am not choosing to see it that way.

      I feel it doesn’t do us any good to hold on to our past. Holding on is like holding on to coals because we’re the ones that get burned.

      It doesn’t take away from those that are responsible, whether they own up to their responsibilities or not, but it does bring understanding into the equation.

      Not only for me but for others with their own story to tell.

  3. I was a very angry child myself, seeing as I was the youngest and had a lot of issues that I didn’t know how to deal with.

    They may not have been the physical issues that you dealt with, but the lack of concern and compassion from your parents, sounds all too familiar.

    I was acting out in ways that most parents would have considered disturbed and horrifying, but they barely batted an eyelash. It was the reason I started drinking and doing drugs, seeing as I couldn’t even stand myself.

    I didn’t want to be crazy like my mother or a drunk like my dad, but it turned out that I was just like both of them and so much worse. I have spent most of my life trying to forget who and what I was, which hasn’t really worked since you can’t escape from yourself in the end.

    I’m guessing that you don’t like to spend a lot of time thinking about your childhood either, seeing as I know for me it only makes me so very angry to the point of rage.

    I guess both of us grew up in a different time where they didn’t seem to notice things, like you walking toe to heel or for me the way I was acting out. It just boggles my mind as to why, would both of our parents go so far out of their way to act like nothing was wrong?

    I’m sure that is why I have battled so long with that feeling of I’m Not worthy, considering how my parents treated my siblings and I, as if we were such a burden.

    My early life was a hell that I remember all too well, seeing as I had a fantastic memory when I was a child and couldn’t forget even as much as I wanted to.

    Now at 49, I have memory issues and have a hard time remembering what I had for breakfast yesterday, so I kind of have to live ‘in today’ and make the best of it, whether I really want to or not.

    1. Thanks Randy. You weren’t the burden, your parents were a burden to themselves. Sadly, you were the scapegoat of their many issues. You weren’t the issue.

      For myself, I was trying to come to terms with what I had to deal with, to bother or think about anyone else. But I know I wasn’t the problem. I presented with a problem.

      This isn’t yours to own and try not to feel bad our beat yourself up about it. This is their issue and their issue alone.

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