[Image description: Young woman with straight red hair, wearing thick-rimmed purple glasses. She is smiling widely at the camera.]
This blog post was written by Kaitlyn Meuser, UCP’s Marketing Specialist. She is a young woman living with Cerebral Palsy. This blog reflects her personal experience.
I was diagnosed with Spastic Hemiplegic Cerebral Palsy (CP) at the age of two years old. My parents didn’t really know what to expect when they were given the initial diagnosis. “Would I hit normal milestones?” “Would I be able to walk?” “Would I be able to go to school with my peers and be in a “mainstream” classroom environment?” These are all valid and real questions for any parent trying to navigate the world of CP.
Cerebral Palsy itself is an “umbrella term.” This means that CP has many different variations that affect how each individual is impacted. CP takes on many different forms (Spastic, Ataxic, Hemiplegia, Diplegia, etc.) and has a vast range of symptoms. This means that no individual with CP is alike.
That’s what Cerebral Palsy Awareness means to me. It means understanding. It’s not just acknowledging that CP is apart of my life, it’s understanding the impact it has on the 17 million people around the world with CP. For me, it’s about understanding that my CP impacts every single day of my life. It means having to acknowledge and grow to understand the things that I love and hate about living with Cerebral Palsy, and just knowing that this is the experience that I get to have.
For most of my childhood and adult life, I never really acknowledged that I live in a near-constant state of pain. My knees ache, my muscles have spasms on occasion, and the worst part is that I fall a lot. I probably fall once every two days due to my poor balance and having to overcompensate for having an off center of gravity. I trip over cracks in the sidewalk, bumps, rocks, or even my own feet. It happens all the time. That’s the worst thing about my CP. It takes a physical toll on my body. I was told by one of my doctors that my joints are that of someone more than twice my age. As individuals with CP, it’s been said we use three times the amount of energy as our able-bodied counterparts. As I get older, I have to acknowledge that the feeling of near constant fatigue and subtle pain is a part of my life.
The CP “adventure” isn’t all bad. For me, coming to terms with my disability and how it impacts my life, is a constant, ever-evolving process. As I grow, my knowledge and understanding of the complexities of living in a body with disability, grows with me. It’s a little strange to think about what I “love” about living with CP, because for me personally, it’s not about trying to stand out from a crowd or about trying to blend in. It’s about understanding that being different isn’t a bad thing, but that disability isn’t the only thing I have to offer. I’m a daughter, sister and an aunt to my three nieces. I love books, music, art, and dancing. I am not just a woman living with cerebral palsy, but it shapes how I view the world. It has taught me how to adapt to world that sometimes isn’t the easiest to navigate, but I make it work. It’s just a small piece to a very complex puzzle.
What does CP Awareness mean to you?