Sharing the lessons along the way…


There is no real way to describe to you what it is like working with an editor on my book while experiencing the symptoms of my illness with the baclofen pump dose decreasing.

But I am going to try.

We are working on the beginning of the book, tweaking the order, and in these parts, I am essentially grappling with my inability to describe the symptoms.  I think I just shared something similar in a blog because I really wanted to share with you what was different about the 15% decrease.  I had no understanding back then and have spent ten years trying to figure it out.

My editor friend and I have met the last three Thursdays.  We spent the first two fine tuning the first chapter.  The order of things has been changed since my original version.  The focus was the event that would be the last time I drove a car six months after the symptoms started.

More specifically, it involved my inability to smoothly press on the gas pedal, which happened while I was actually driving.   If I had to drive with my left leg and foot today, I would not be able to because it is doing the jerking movement when I extend it out in a seated position.  This is what both legs did back then.

It is that indelibly imprinted memory,  that is now finely tuned to begin the book, that makes it more of a challenge to stop trying to wonder which of the decreases will mean I can no longer drive.  I never want to be on the road again like that.

Today, I awoke wondering what next week’s decrease will mean for my daily life, and my morning was filled with the parts of my story where my ability to walk had deteriorated to a wheelchair full time, and how that drastically altered the landscape of my world.

It is almost a bit too ironic.

concentric circles

(Photo credit: Creativity103)

When I was getting my day started, I almost canceled the editing session.  I knew if I did, I would feel even crankier because at least keeping the meeting is productive and moves the book forward.  Boy, did it feel like it might just be too much this week.

It wasn’t.

In fact, it seems that my editor friend and I are getting more in sync each week.

Just the same, the process really sets the stage for much reflection.  So far, I am spending more time nearly in awe of the irony and full circle nature of then and now.

There are parts of the story I can change this time because I know more, and certainly parts of the story that might appear quite similar regardless of what I do differently.  The editing process is providing an interesting clarity and reminding me to keep my eyes on the parts I can change this time around.

I like that.

By the way, did you know there were book excerpts here on the blog?  You can find them under the book’s working title “Can You See Me?” menu at the top right.

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Comments on: "Circles, Irony and Editing" (2)

  1. Why is the baclofen decreasing? I also have a baclofen pump.

    • Hi Connie,
      I am reducing the dose in preparation to have this pump removed. You can read more about it in my previous posts or you can click on the Intrathecal Baclofen Pump menu at the top right of the blog. It was a painful decision to have to make.
      Best,
      Tawny

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