Silver Palsy

As a little girl, when someone asked me why I used a walker, I always told them, very proudly, “I’m Melissa and I have Silver Palsy, so I don’t walk like you.” This was not a matter of mispronunciation; I really thought that it was called Silver Palsy and that it was somehow associated with the silver caps I had on some of my baby teeth. I remember thinking that when those teeth fell out that I would be able to walk just like my sister. Though, I don’t remember asking anyone if it was true. I had the kind of faith and certainty that only small children can muster. Even when the last silver capped tooth fell out, and nothing changed, I wasn’t disappointed because grown-ups didn’t have Silver Palsy. At least, I’d never seen any so surely it would go away eventually and I would be normal.

Of course, now I know that what I have is called ‘cerebral palsy’, the reason I never saw any adults with CP is because in the 1980’s most of them were probably living in nursing homes and although normal is possible, every experience in life with CP is not.

What I find most interesting though, is that I was never ashamed of my CP. I wanted to get better mostly because it made other people happy.  When I did well in surgery and improved afterward, my doctors were happy. If I balanced longer, or learned to use crutches, my physical therapists were happy. If I could walk across the living room or sit up unassisted, it made my Mom happy. So I knew if I could walk like my sister, everyone would be REALLY happy. I just wanted everyone to be happy. But walking like my sister was never really as important to me as it was to them. I already knew how to do everything I wanted to do; and if I couldn’t, I had a twin to help me or show me how. Why did I need to walk?

This point of view might have been due to the fact that, until I was nine, I went to school with a lot of other kids who had CP; my best friend at the time even had CP very similar to mine. I was not lonely, and I did not feel isolated. None of us did; even with all the adults poking at us, trying to make us normal. We looked around the room and we knew we were normal. As young as 4, I had community and solidarity.

That all changed when I switched schools and became the only kid with a disability. Teachers didn’t know what to do with me. Despite making friends, I was left inside on field day, sent home from 5^th grade camp and excused from gym. I found a group of friends and surrounded myself with them like a protective circle. They were my advocates, encouraging others to let me join in and be a part of things, but my own voice was fading.

In High School, I moved away and left my friends behind. My protective circle crumbled. I felt exposed, alone and ashamed. Needless to say, I didn't much care for it. I was smart enough to know that there was nothing wrong with me, that the fault lied with them. But I was too shy to speak up, too afraid of being laughed at or left out, and so I was silent for most of High School.

In college, I decided to start brand new. I didn’t reinvent myself exactly, but I left the shame behind me. I started college the way I had started pre-school: with a smile and enough confidence to capture anyone’s attention. I told people who asked, that I had cerebral palsy and I moved on, and to my surprise so did they. I had rediscovered my pride, but also my indifference. It didn’t matter much whether I could walk or that other people saw me as normal. I could do anything I wanted; and if I needed help I had people that loved me, who were willing to help.

Now I am thirty and I still have Cerebral Palsy. I am that adult that I never saw as a child. No one makes me walk or go to physical therapy anymore. No one tries to fix me. I am not broken. It is simple: My name is Melissa. I have Cerebral Palsy, so I don’t walk like you.

If you want to read more stories about living with Cerebral Palsy; check out the CP Connection!