I find it funny that not too many people, in my lifetime, have really asked me what it is like to have cerebral palsy. I feel blessed that I can express myself in the way that I can. The majority of the cases of cerebral palsy occur before or during birth. Cerebral palsy is not a disease-it is a brain disorder when oxygen is deprived to the brain for a period of time. Like a unique fingerprint, every instance of cerebral palsy is different, ranging from mild to severe.
I was four months old when doctors made my diagnosis. I wasn't hitting my developmental milestones, especially when it came to my motor skills. I was unable to hold my head up. The doctors thought I would be incapable of walking, talking or learning. They were surely wrong about some things.
By age two, I was able to crawl. There wasn't much chance I was going to be able to walk. Walking was what everybody else did; never experiencing what it felt like, I didn't think I was missing out of anything; I had a wheelchair. Every day that I went to Meeting Street School, I crawled down this long corridor to get to my classroom. I remember falling on occasion, scraping my chin or bumping my teeth, but I got up every time. I had to learn to control my body which sometimes didn't want to be controlled. The other thing that I remembered doing is sitting in a straight back chair with no arms at my desk. Having no belt around my waist to hold me in, I learned to balance. I used to look at the floor periodically and think: "That's a long way to fall." My mind played head games with my muscles, jerking me from side to side to test my reaction.
It wasn't until years later that I deduced I was being controlled by an invisible puppeteer above my head. Imaginary strings overrule my every move I make. I reach to grab an object on a table and the puppeteer pulls in the opposite direction, struggling to keep my hand from reaching that object. I will not be defeated-I will get it. Having cerebral palsy is battling the puppeteer every day. He laughs that subdued cackle that nobody hears. I won't be defeated.
I feel defeated by the puppeteer when I involuntarily hurt somebody with one of my muscle jerks. The miscalculation stays with me for a period of time, sometimes, even years. I know it is not my fault, but I still feel guilty. I have learned to keep these incidents at a minimum by hooking my arm underneath an armrest, or keeping my feet tied secure. Some people think restraining my arms and feet is archaic and mean-I think it's a physical comfort I need every day.
Speaking clearly to be understood is another aspect with having cerebral palsy. I think before I speak, figuring out what words will be likely understood. When the words come out, they sound normal to me, but a lot of the time, I need to repeat myself for the person that I am talking to can understand me. It really makes me angry when people pretend to understand me. I rather repeat myself a thousand times rather to be passed over. Even though my words may sound jumbled, I do have something important to say.
The next time you see a person with cerebral palsy, take from this that we are people who want and desire what everybody else wants in their life-to be a contributor in their community and to have the love and respect of their peers.
