I have never been one for fanfare. I would rather be acknowledged for my hard work in the everyday world than to be put in the limelight. The readings at church yesterday stated, “don’t hide your light under a bushel”. I don’t want to hide just my light, I want to hide all of me under that bushel.
Writing, publishing and promoting a book has thrust me into the open. The first book talks were basically for the book. I talked about how I came to write it, how I found someone to edit, the specifics of design I considered to make it easy to hold and read. Reading a few of my favorite stories made the crowd laugh. Since I wasn’t facing a whole group of people with Parkinson’s masked faces, I got positive feedback from the smiles and head nods. I made jokes about what GOOGLE said about Book Launch parties and I made sure there was plenty of food and drink. I was speaking primarily to people who knew little to nothing about the disease. I “normalized” the events to fit “them”. It is said that a good speaker knows her audience. I did. I gave them what they needed. I now wonder how different those first gatherings had been if I had let them see inside my Parkinson’s.
Who would read my book. Friends, yes. People with Parkinson’s, yes. Some Camino lovers, yes. But get this: The first on-line order was from the executive director of the drum and bugle corps our oldest son Loren marched with during his young adult years. I would have never in my life guessed that. A very knowledgeable and well read person in the Parkinson’s community read it and commented “I have read a lot of Parkinson’s memoirs and yours is by far the best”. Again, I would have never anticipated hearing that from this individual. The president of a local school board got a hold of a copy, read it in a day and wrote a lovely response. I now know I don’t need to worry about WHO will read my book. Rather I need to make it more available to be read.
We just returned from a 4000+ mile road trip which included 12 speaking engagements. These events were primarily focused on people with Parkinson’s. They were well educated people with Parkinson’s as they had heard every doctor and every specialist in their area speak to them. What they had not heard was the thoughts from one of their own. I put away my big slide slow, added a fun movement break, tied in stories from the book and talked about tough stuff that the outside world does not see. And then I urged them all to develop an attitude of adventure.
I observed, I listened. I met people who were really challenged by the disease. There were folks who felt very lonely. Partners had left on account of the disease. Some were saddened because the doctors told them not to ride their bike anymore. Others were inspired by their exercise classes. Some were single parents of young kids and worried about them. We talked about medication, and off times and falling and DBS. But the themes of depression and apathy, seeing the pain and frustration and loneliness behind the masked faces. This made me pause.
I hear how the book and my talk inspire, how I inspire people to get up and move. What I don’t get is how. I mean, why are they inspired by me? I feel like an average person.
That may just be it. Quiet, peace filled, unassuming Carol. Taking care of myself so I can get out and have adventures, and showing others they can have adventures also.
I dont think I am finished with this topic. Good smells are coming from the kitchen though and my stomach is rumbling in response.