Tuesday, July 9, 2013

My book revisited.

"So the difference is in the print format and binding?" asked a friend jokingly when he heard the news about my upcoming book and my explanation that I would never do something as self indulgent as write one about myself, pointing out that I have a blog. Interesting point, but I don't think entirely valid. To me, the difference is not in presentation, but in motivation. I started it two years ago with this idea in my head that The Jordan Klausner Foundation needed a blog. That it would encourage donors and give parents hope if we chronicled our progress. Every little miracle that happens daily at the Conductive Education Academy. That if people got to know James, Kata and myself, why we do what we do, who we are - more families would trust us with their Cerebral Palsied children. Soon I realized that the Foundation didn't have much to report on, not because there wasn't anything newsworthy going on at the school, but because we haven't figure out a way to preserve it without it being too disruptive on the school and time consuming on the Conductor. For a non profit that hasn't had its website updated in years and never viewed it as a high priority, we have never properly figured out how to reconcile the way we do business and keep things private, with a desperate need for exposure and publicity. But I had the time. I could write. And I soon discovered that in 20+ years since I first started Peto rehabilitation, not much has changed. That I can relate to those kids, that I've been through what they are going through now. I also hoped that given that all and all I turned out pretty good, seeing me and hearing from me might give those parents motivation to stay on and push harder. So, I started writing about myself. About my experiences, first in relation to Foundation's work, then more and more personal. My victories, fears and doubts. Not much different than what went on behind our doors, 20 something years later. But with one difference- you know how I turn out. As I began to drift away from the Foundation the blog became more and more personal. At first I tried to keep it light. But then I decided it would not be honest of me to shy away from the darker undertones. I'm energetic, optimistic and driven. But a disability is no picnic and it often forces you to confront some very troubling thoughts at a very early age. Like the fact that you're different. Or that you fear the future. Or that you feel like you don't belong. I started drifting away from the Conductive Education influence on my life into the general CP territory. Andrew Sutton did bring be back a few times when he asked to write about the things I remember about Budapest, about the years in Peto Institute. And those were amazing times. My childhood- full of books, imagination and wonder. With an overwhelming feeling of safety. As the blog became more and more personal I decided to move it to a separate domain. A fun and poignant nickname I have thought of for myself. I've enjoyed what I've written so far, so I decided to continue. I liked how it appears to have given me more of an ease of expression in English. I think my later posts are much better written. The blog also forced me to once again revisit some aspects of my childhood, perhaps with a more critical eye. Things I have not thought of in years. And I can only hope that from such self reflection can only come growth. After I left JKF I kept the blog. Disability causes are still dear to my heart. And as I started a new nonprofit, some of the sentiments and doubts were pretty much the same. And yes, at that point I did realize that if I wanted to accomplish what I've set out to do I need more exposure- for myself and my causes. And I have far to go. This week I've been reaching out for materials that Andrew Sutton requested. Pictures from different periods of my life, things that I see in shaping who I am. Infancy, childhood, elementary school, high school, Warsaw University, America, Gainesville. Diplomas. Lots and lots of diplomas. Between the book related tasks, dentist appointments and dealing with other attorneys I'd say it was a pretty busy week. My friend Dee, when I explained to her the concept of the publication, started calling me Carrie Bradshaw. The Sex and the City novel was also a collection of columns. Of course there is no sex in mine and Gainesville is hardly a city.

1 comment:

  1. I would love to read more about your childhood as I try to figure out how to make my daughter's a memorable one. I love the show and also love your blog!