I’ve been thinking a lot about how CP affects my daily life. As a young child, I didn’t think that my disability made me much different than my nondisabled peers. I still did everything they did. I went to birthday parties, played sports, and went to summer camps.
As I grew up, I felt more and more isolated. I remember the jealousy I felt when my peers began to get their driver’s licenses when I was a sophomore in high school. I wanted to be like everyone else. I wanted to be able to drive my sibling around if they needed to go somewhere. I wouldn’t have minded running errands for my parents.
I have worked with many professionals over the years. I have had wonderful PTs, doctors, PCAs, teachers and paraprofessionals. Growing up, it often felt like I spent more time with adults than with my peers.
As an adult, I feel more isolated than ever before. Knowing that I need help with daily tasks is challenging . I wish I could just get out of bed and take a shower, or use the bathroom.
Cerebral palsy means that I have to allow people to assist me with my personal care. It isn’t easy to feel comfortable in your own body when you are constantly being looked at and touched by people helping you. Sometimes, I wonder what it would be like to shower and get dressed in complete privacy.
My body feels like it is on public display for therapists, doctors, and PCAs to do whatever they please as long as they deem it to be helpful by their standards. In many cases, when someone who I am working with makes me uncomfortable, I feel helpless.
There are times when I wish I didn’t have cerebral palsy so that I wouldn’t have to fight for everything I need. It’s never an easy process to get a new walker or wheelchair. I need adaptive equipment because without it, I would be stuck in bed.
Being disabled is hard. Cerebral palsy is much more than just a physical disability. My disability often makes me question my worth as a human being. I often wonder if I matter in the world. We are all valuable and have something to contribute to the world.
You are enough and have so much to offer. You are blessed with intelligence, empathy, curiosity, kindness and many more wonderful attributes unique to you.