Tuesday, September 4, 2012

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 5th 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!


  1. Love this post! My son is 14 months old and it's hard to imagine how much independence he'll have when he's an adult. So many of the CP blogs are written by parents about their kids. Thanks for sharing your story about your "silver palsy"!

  2. You're Welcome! I am sure that you son has a bright, happy and independent future ahead of him! :) Happy World CP Day!

  3. Fantastic! There's nothing wrong with you; you're perfect. And, if I may say so, very beautiful! :-) x

  4. Hi Melissa - it sounds like you have a great atitude! Thanks for sharing your story! As a mom of an almost 2 year old with CP, I love reading about your experience. I actually did a guest post for a blog about why CP doesn't rule the roost in our house: http://beautifulsideofhectic.com/2012/08/a-greater-introduction-to-anchel/ and I blog weekly for a Canadian parenting mag (http://www.todaysparent.com/blogs/special-needs-parenting). Your wedding photos are beautiful and I'm looking forward to reading your blog!
    Anchel (@anchelk)

  5. I love this story! So sweet and honest. Thanks for sharing about "silver palsy."

  6. Hi Melissa, it is great to meet you and read your story, I have a 5 year old granddaughter who lives with Athetoid Cerebral Palsy. It may sound silly but one of my biggest hopes for Hailey is for her to grow up and find love and have someone who loves her very much, and to have independence. You have just confirmed that these things are possible. I love the wedding pics! visiting from C.P. connection and will be back soon!

  7. How beautifully written. Thank you for sharing your story. :)

  8. How beautifully written. Thank you for sharing your story. :)

  9. Hey Melissa I have 3 words for you dear: Facebook Like Button. If you had one at the end of your posts it would make it easier to share your writing (: That's blogger to blogger.
    Now CP grown-up to CP grown-up, thank you for your post. Please email me (it's on my blog) I have thoughts I'd rather not leave in comments. Great Post.

    1. Hi Katie,
      How do I get the facebook like button? I cannot figure it out?

      By the way. I love your latest blog post. So Cute! Do you have a page on facebook for your blog?

  10. Hi! I stumbled on your blog from a friend's. I am also (almost 30) and have CP! I also have an amazing husband (and 2 kids...to which I am certain you will get in due time), and I too had that walker and walked that journey.

    I just wanted to say Hi, and say I have spent the last hour reading your blog. Thanks for sharing your life!