There’s a photograph I go back to, primarily because it reminds me of the life I had where I didn’t know about my physical disabilities. I was 9 years old.
It reminds me of a life lost, a life troubled, a lie. It wasn’t me. It was a different version of me. That was my life until I found out. I felt the rug pulled and guilt too, because this wasn’t something I could impart to those who needed to know.
My neurological difficulties were too bad for my condition to be ignored. I could feel myself struggling, I knew I struggled and since finding out nearly 7 years ago, I’ve had to continually work hard at bringing about a new understanding on my life and my disability. Although I understand why my parents didn’t fight for me on everything I had to deal with, it will be one skeleton that will never be laid to rest, because it’s not how that should be.
It was a coping mechanism, but for anyone like me having to live with physical and neurological difficulties they know nothing about, it’s important we know and those involved with us help us, if we are to know and have peace the other end of knowing. As I continue to talk about my experiences, I am choosing not to think about this. I understand it, but I don’t agree with it.
I lived with guilt because I didn’t know and because the non-diagnosis and lack of support held me back, particularly through my school years. I’ve had to work things out, filling in the blanks as I go. I’ve had to get to know myself for the first time. I’ve had to learn about my neurological difficulties and that hasn’t just involved me. That’s been the most difficult part.
Guilt also, because I couldn’t impart anything. I knew I had a bad leg and foot. That was it. I had no idea at the time what my neurological impairments and difficulties were. I carried guilt because no informed choices would ever be made when they should have been for those close to me, who also needed to know, particularly when it came to personal relationships.
When we know what it is we need to know, we get to make informed choices on the knowledge we acquire, good or bad; whether those choices work out, in our favour or not. We’re all entitled to make those informed choices. That was taken away from me.
Would the same choices have been made? Well, I will never know now, but it’s always important to be given a choice and in my case, sadly that didn’t happen.