Tuesday, May 6, 2014

The Story Behind The Writing Of "Window Of Opportunity"

I was diagnosed, much to my surprise, with PD in early 2008 when I was 59.  I had been living with what had become severe essential tremor or ET (not the same as PD-mainly "action tremor" in hands), especially in stressful situations. Unfortunately, there had been more than a few of these in the preceding years.  My PD symptoms were mild but recognizable to the movement disorder neurologist I met with at the University of Colorado Hospital.  Mainly fatigue, dizziness, and the tremor I had attributed totally to ET.

In the months following my diagnosis, I became aware of cognition & memory problems, mainly processing and retention of verbal information.  I also started making uncharacteristic mistakes at work.  This was a big deal for me as I had come to think of my "intellectual skills" as my strongest suit.  So I started the process of trying to understand what was happening and what I could do about it.  I read a very helpful book by Thomas Graboys, MD titled Life in the Balance.  I tried to discuss my concerns with my doctors, but they assured me I did not seem to be a candidate for this type of problem.  There was not much on the internet of value at that time that I could find.

Following troubling feedback from my first neuropsycholgical exam in late 2008, I started thinking about writing a book on the subject of cognitive issues related to PD.  It seemed unlikely that I would be the only one experiencing this type of problem and it appealed to me to try to do something positive.

I hope it is understandable that I really didn't know what to expect at that point.  Was this something caused by anxiety that I was blowing out of proportion.  Was it real and, if so, would it progress slowly or rapidly.  Would I be able to write a book on this challenging subject that would be worthwhile?  Would I need assistance?  Should I try to write something in the short term for publication?  Should I wait and gather information and experience in hopes of producing something with greater "critical mass"?  If I waited, would I run the risk of not being able to finish?

I fortuitously decided (just after "retiring" in August 2008) to start writing a journal to record what I was learning, thinking, and feeling.  Without that, and a log I created to keep track of key appointments, I wouldn't have been able to write anything remotely accurate in the years that followed.

I talked to a handful of friends and potential "co-writers" over the next couple years.  One experienced writer had advised me not to wait and to write based on what I knew in 2009.  I don't know that I ever made a conscious decision about what to do when.  It was more a case of letting events unfold and trusting God to let me know when the time was right.  Meanwhile, I recruited my doctor, Benzi Kluger, to be my "medical advisor" for the book to help me make sure I was keeping my facts straight.  Neither he nor I knew what I was getting him into.

I started trying to write some type of manuscript during 2012.  My first attempts were bland, I thought.  Mostly chronological dronings of dates and events with a few fears and feelings thrown in.  But it was a start that would prove to be helpful in the end.

During the course of the next year, I changed the original working title Crossroads more times than I can remember, but here are examples:

  • Going Deep
  • Magical Mystery Tour
  • Angel's Wings
  • High Hopes
  • Illusions
  • Elephant in the Room
I changed tactics later in the year to trying to build the book around an assortment of appropriate (I thought) blog posts I had written.  The first manuscript I sent to Benzi was pathetic, but I didn't realize it.  In hindsight, it was choppy, impersonal, too technical, and too short (perhaps a good length for a short story).  I didn't realize that it was too short until I looked at the word count, which was about half the number of words in my memoir (which was just over 100 pages).  I continued to try to fix that version, but that proved to be, as far as I could see, very similar to rearranging the deck chairs on the Titanic in hopes that would keep it from sinking.  I was having trouble thinking clearly or creatively and, by early 2013, I had pretty much given up.  Fortunately, God didn't.

We travelled to Maui with friends during March 2013.  When we arrived, I started taking the Namenda (a dementia medication) Dr. Kluger had prescribed.  I literally seemed to me that "a fog had lifted" and my clarity seemed much better.  I realize that a case could be made that this was due to being in Hawaii and not the medication or maybe both.  In any case, I returned home revitalized and ready to take advantage or the "window of opportunity" that had been created by this new medication.

The next part could be seen as a little spooky, but for me was a "God thing", since I still didn't have any clear idea how I would change the book, except that Benzi's response to the earlier version was that he thought it had potential, but should be less technical and more personal.  With that thought in mind, I returned to my computer files for ideas.  The first file I opened was the chronological manuscript that started with what I had thought was an interesting story about a climb we had taken up Mt. Elbert.  There was at least five chapters filled with lots of personal stuff-just what the doctor ordered (literally)!  I was able to quickly weed out the superfluous content and weave it into the material from the previous manuscript.  I was on the right track.  Now that I had this new material, I went through the previous manuscript and also eliminated material and even chapters that no longer seemed to fit.  However, it still needed work.  What was missing?

I am impatient by nature when it comes to seeking closure.  During September 2013, I wanted to finish this book and get it published, for better or worse. I had gone so far as to have a cover created that I had conceived with dark clouds behind a bucolic field and a window in the middle.  Once again, Benzi counseled me to work on it a little longer.  Then, in early October, Linda and I traveled to Montreal for the World Parkinson Congress (WPC) for five days.  During this time, I was inspired to replace an existing chapter that was unduly "dark" and replace it with one on Palliative Care, a subject that had become meaningful to me in the last few months.  More importantly, I realized that the tone of the book needed to reflect the much more positive, hopeful spirit I carried back from the WPC.  When I returned, I contacted the cover designer and had a rainbow added.

The final piece for me was fine tuning my chapter on faith, which had turned into a central theme in the book.  It was a little "out there" but I felt good about it and decided to take the risk and go with my inspiration.  This carried over to the epilogue, which I was able to tie into the first chapter's mountain climbing story, and added some additional "out there" stuff based on shows I had been watching on the Science Channel.

Benzi and I met for a final time to go over a few items he had noted for fine tuning.  I had located a small publisher that a friend had used that, as it turns out, was very excited about publishing this book, which was a real bonus.

Order in book fomat at http://www.pygmybooks.com/BuyBooks.html (page 2) or http://www.amazon.com/Window-Opportunity-Reality-Parkinsons-Dementia/dp/0984206345/ref=tmm_pap_title_0Order in ebook format at http://www.amazon.com/WINDOW-OPPORTUNITY-reality-Parkinsons-dementia-ebook/dp/B00JG577PG/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=&qid=.  

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