Cerebral Palsy isn’t about just my physical constraints, but my emotional and mental constraints too. It is because of these constraints that I have always felt as though I am living my life inside, looking out at the world.
I have already talked about some of my symptoms, but feel I’m on my own with my thoughts and understanding of what I deal with. Understanding comes from us, but for those who have never had to deal with a brain injury, they may find it hard to understand and accept the way we are or live our lives.
Living my life with Cerebral Palsy, plays out very differently to that of my family. There are times when I have brain fatigue/fog and have to sleep to catch up, otherwise I can’t focus. During the day when I rest, my family are awake and when they sleep I find it difficult to go to sleep. When I eventually find sleep, I have difficulty staying asleep.
I think fitting my life in with Cerebral Palsy as an adult is a completely different ball game to when I was a child. As a child I had no responsibilities; so it was easier for me just to be me. I was also small so my symptoms weren’t as evident. Out of the classroom I could concentrate and deal with things, similarly to other children. Now I fit what I deal with in my life around my family and that can be hard sometimes.
There isn’t always the empathy or understanding for what I do deal with and that’s hard, but as my father once said, “when we deal with something, we’re literally on our own.”
However much others try to help, they’re not dealing with what we have to deal with and therefore don’t always understand. I believe that to be completely true of course, but we can still empathise and at least try to understand.