There’s a photograph I go back to, 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 felt the guilt too.
My Neurological Difficulties
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.
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 they know and those involved with them help them, if they are to know and have peace the other end of knowing. As I continue to talk about my experiences, I understand it, but I don’t agree with what happened. Not sure anyone would.
My guilt had nowhere to go
I lived with guilt because that guilt had no where to go. I’ve had to work things out as I go. I’ve had to get to know 'me.' I’ve had to learn about my neurological difficulties. That’s been the most difficult part.
Guilt also, because I couldn’t resolve anything. I knew I had a bad leg and foot and that was it. I had no idea what my neurological impairments and difficulties were. I carried that guilt for years.
Informed Choices
When we know what it is we need to know, we make informed choices on the knowledge we acquire good or bad. We’re all entitled to make informed choices on what we deal with, but we have to know first. Those choices were taken away from me.
Would the same choices have been made had I have known? Well, I will never know for sure, I think not, but it’s always important to be given a choice and in my case that didn't happen.
This guilt isn't yours to own. You were a child and your parents' took a decision that you were not to find out about; until later in life. That wasn't your decision, but theirs.
While you had to live with the consequences of their actions, (or inactions) you were innocent of any responsibility. You tried to speak to your family but you were ignored.
Again this is not your responsibility, but theirs. There should be no place for you to feel guilty and I am sure if your parents were around to ask, they would have to agree.
Thank you. I have now found an acceptance on the decisions that were made by my father particularly, in the early years.
But when we move on with our lives and introduce other people who are not part of that scenario that can leave us with guilt, because others will always be unaware of our neurological, emotional and physical difficulties; unless we tell them or they were part of that scenario.
People who we come into contact with later on won't have been given a choice to know and that's not right or fair.
I was about to ask why you feel that way. But then I thought about victims of abuse and how they often feel guilt for being abused, especially if the abuse happened in their adolescent years; we should pay more attention to that.
The guilt is not yours to burden Ilana, give it to the very people who deserve it.
Thanks Tim. When it comes to any form of neglect or abuse, others will know their part even if they don't admit their part.
It's always very difficult to know what we're going through at the time. It's not always obvious, but it's only when we look back that we think about and equate what we've been dealing with.
Often, other people's behaviour towards what we deal with either makes it easier for us to let go of the guilt we feel, or serves to continue to reinforce where we are. I think that will be the problem for many of us dealing with a disability.
There has to be an acceptance and an understanding from everyone on what we deal with, particularly if they're dealing with us; dealing with it.
Not to just reinforces the guilt we feel. Writing my blog and reading your response/s has helped with the process of letting go.