A few weeks ago my sister was in town, and needed me to meet her at a church close to where I live to do her a quick favor. I met her after the service and we were all taken to a small office. Once all the official business was over the priest started chatting with my nieces and nephews, asking them about school and how old they were and all the things you usually talk about with children that you have just met. We were about to leave so I stood up and the priest looked first at my face then at my legs and then back up at my face again.
I knew something was coming. I was expecting maybe a “God Bless You,” because that’s what I normally get when someone looks at me like that, especially in or near a church. Instead he said,
“So, what do you have going on there?” I was shocked. Really? What do you got going one there? From an adult? In front of my nieces and nephews? I was there for my sister, and didn’t want to make a scene in front of the kids. So I bit my tongue and told him very politely that I had Cerebral Palsy.
“Oh,” he said. As if he is somehow relieved. “Well, you know about those stem cells right? I mean can’t you do that? They take them right from your body! “
Every fiber in my body wanted to shout, “Oh my goodness I didn’t know, let’s get in the car and find a doctor right away! My suffering is over” But again, I am trying to be diplomatic, so I said,
“The research is still being worked out on that, but I might give it a try when the time comes.”
The priest smiled at me and touched my shoulder. He wished me the best and reminded me that when the time comes to use my own cells not the embryonic cells. Mom was holding open the open the door to the office at this point so I just smiled and nodded and we all wish each other a good day. Once through the door my sister leaned over and said,
“For a second I thought he was going to perform an exorcism.” We all laughed and got in the car to head to my Mom’s for lunch.
This post, despite its beginning is not going to be about church, or religion. I am not going to go into the stem cell debate. The conversation did get me thinking though, because it was only a few years ago that I had stated publicly and adamantly that I would not take a cure for CP even if it was offered to me by John Travolta in a gold plated syringe. After all CP has not been a burden to me, without it I may not have the great friends I have, I might not have met Tom and I certainly would have never written this blog. I have always felt that I was meant to have CP. That it was not and accident of fate, but something I was given purposely. And yet, I had just told this man, whom I had never met that it would be something I might consider.
Maybe I was humbling him; maybe I was just being polite. But as I left the church I was shaken a little by the idea that maybe it was the truth maybe I would take a cure. After 30 years of CP I can tell you that some days I am just tired. Tired of being in pain, tired of explaining myself to people who ask questions they really have no right to ask, tired of being stared at, tired of falling, tired of not being able to really play with my nieces and nephews, tired of trying to keep up, just tired. Some days I do want a cure. Maybe that makes me weak, but I don’t think so.
If wanting a cure makes me weak then not wanting a cure would makes me strong. I am not strong. I am just me living my life. My life with CP, not in spite of it. My life that allows me to help other people with CP see that anything they want is possible, to find the humor in even the most painful or embarrassing situations, to always look for a creative solution instead of giving up, to educate people, to put an end to the pity, and to write and share my story with anyone who wants to hear it.
So yes, some days I do want a cure, but if it never comes I will be okay. We will all be okay because I believe that we all are exactly who we were meant to be and a cure won’t change that.
The only thing I am ashamed about is not telling that priest to mind his own business; politely, of course.