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.
