“Nobody knows anything about blogging. They just make it up.”
This is me. I am a writer, but I’ve never blogged before….mostly because I thought what I had to say wasn’t important enough to go on the internet, or interesting enough for people to read, or blah, blah, insecurities, period.
When I excitedly told my friends and family I was “taking the leap of faith,” and wanted to name my blog, “The Spastic Diplege: cerebral palsy in canvas shoes ” some nodded in approval while others gave me a silent look that I naturally tried to decode. I think some were worried that I was being over presumptuous in my observations about living with cerebral palsy….that by naming my blog in reference to the type of cerebral palsy I was born with, I was self-labeling and self-handicapping myself somehow.
What is cerebral palsy? By definition, CP is a neurological condition marked by impaired muscle coordination (called, spastic paralysis) due to damage in the brain before, during, or after birth. Spastic Diplegia cerebral palsy is a classification of CP affecting two limbs, most commonly the legs. (Ever wonder where the insult, “Spazz!” came from?!)
Coincidentally, cerebral palsy is the most common disability in children. There are so many stories floating around out there about these kids, stories about bravery, hope, and resilience. My story is not the only one, and rest assured the ONLY story I’m trying to tell is my own. Perhaps the only thing I can offer of value is a wealth of personal experience.
If only I knew where to start. Let’s just say, having “a disability” doesn’t mean as much as “having cerebral palsy,” does. Yes, it is a label, just like The Spastic Diplege is the name for this blog. I prefer not to think of cerebral palsy as a label, but as a diagnosis. Something I’ve learned while trying to run away from a piece of myself: the more open you are about your condition, the less scary it is. Ownership of having CP has always given me a sense of empowerment. The CP isn’t going away, so there’s no sense in running from it. I’ve tried, and it didn’t work. But like I always say, CP is just a part of who I am, not all of who I am. You have to make it fit, like the perfect pair of shoes.
That being said, living with CP has presented me with a mixture of both triumphs and struggles. Learning to walk at 3 years old. Having three major surgeries before I turned 11 and one more before my 18th birthday. Being able to walk went from being something natural to being a gift and a blessing.