Here we go; this is my first blog of being authentic, living my life as honest as I can be, simple as I can be with cerebral palsy. I acted bravely on the outside, but I felt so scared inside more than anyone knew and more than I knew.
To escape the reality of my disability, I would put myself in my mind; I created this whole world that I would go to when I didn’t want to feel different from the world. There were times I felt like I only belonged in the able body world, then there were times I belonged in the disability body world. Why not make a world where I was the one that could control what was going on because I couldn’t handle what people were thinking, thought, or said about me. Whenever life was getting hard or at a low point, I would put my earphones on to escape the world and go into a world where I didn’t have to deal with reality. I always had trouble putting these two worlds together as one.
Growing up, I was the only disabled child in a town that wasn’t too happy with changing the way they taught students. At this time in my life, I was in the back seat while my parents were in the driver’s seat. When it came to fighting for my needs, growing up in a farming town was not easy. Getting a good education was on my parents, and I couldn’t be more grateful for their persistence and determination. They had to fight many battles, have the same education that my brothers and the other children in the community had.
My parents had to fight my battles. It was incredible to sit in the back seat and watch. Watching and learning about this was an education in itself. I look back on it and, as I didn’t truly understand what was going on. I’m not only grateful now, but I also see where I get my strength to fight for myself now.
My parent has always taught me to be independent, as much as it can be scary; the strength they gave me by watching them gave me the power to be my own advocate in life.
Now that I’m in the driver’s seat and my parents are in the back seat supporting me, I feel like I can do life with the tools they gave me.
It was tough to get myself out of my dreamland, but if I wanted to be as independent and strong as my parents taught me, I had to take those earphones out of my ears and look at real life and not my daydream life.
For the last few years, I have been working on social media mentoring in the cerebral palsy community, getting to know myself, and mentor others in the community. While doing my work on social media, it took me out of my fear about cerebral palsy I still have a lot to learn. I will never be free of my fear of my disability and how life sees disabilities, but I can say that I’m willing to travel out of the comfort zone of my mind a lot more.
When I was deep into the cerebral palsy community, I saw all kinds of people with cerebral palsy. Some knew real life, and some were in dreamland like me. I also realize why I wasn’t comfortable being involved in the community; I also started to recognize people that were more into who they were and how they would be the one to get the cerebral palsy community notice. They were also self-absorbed in their little world; I felt like I was to turn into that world; I started to feel like I was getting lost in that world, losing my force on what I set out to do.
What woke me up was my world was starting to get more significant for me. I got my first apartment. If I wanted to make it independently, I would not have thought everything wouldn’t be what was in my daydream.
One of the biggest out of the cerebral palsy community that I felt was taking over my life.
Now that I’m more in real life and have spent the last couple of years getting to the cerebral palsy side of life, I want to share my experience in life as an independent person with cerebral palsy.