Status Report

Over the past few months, I’ve been tweaking my memoirs project, getting rid of things that didn’t work, changing things that needed changing, adding new material, and experimenting with the ordering and grouping of the individual pieces that make up the collection.    For the longest time, I wasn’t getting anywhere and was beating my head against my desk.   I was having difficulty putting together a coherent sentence (a possible outcome of beating my head against my desk), and whatever words that would come to me would be even clumsier and more nonsensical than usual.

One of the problems was the main character.  When writing a book of any sort, it always helps to have an interesting main character, not just to advance the story, but also because as the writer, you and this character are going to spend a lot of time together.  This has been a problem on the memoir project – the main character is me.  I’ve become so sick and tired of myself that I can hardly stand to look in a mirror.  Putting my shoes on, I am disgusted with the sight of my feet – so you can imagine how bored and impatient I grow spending so much time in my head,  exploring my memories and my perceptions and observations of the world around me.

Then one day, a couple of weeks ago, things started flowing, and the progress that had eluded me for weeks suddenly occurred.   I have a couple of chapters to revisit, but the bulk of my changes and additions are complete.  I have no idea why the dam that had been blocking me suddenly burst, but it did.   There will be time later on to figure out how and why, for now, I am happy to ride the current and see where it takes me.

I have assembled a new list of agents to submit query letters to, and I hope to begin that process this week.  I am also exploring alternate publishing methods.  For those that aren’t aware, I thought I had completed the project earlier this year, and had sent sample chapters to a respected New York agent, who responded very enthusiastically and asked for the entire book.  I sent him what I had, and for whatever promise he found in the sample chapters, he found the book as a whole lacking and backed out.   It stung badly, but I recognized what he found to be missing, and I reluctantly went about applying his cryptic remarks as constructive criticism.

Objectively looking at the version of the book I submitted, I now see how right he was.   There were large passages that were overblown and pretentious, and in fact had little to do with the overall story I want to tell.  Simply put, the manuscript wasn’t nearly as ready as I thought it was.   In poker terms, I had fallen in love with my cards, and over played their value.  It’s very easy not to see the flaws and mistakes in your own writing, especially when you know that parts of it are good.  This is exactly where I was – the parts I recognized as being good were blinding me to the parts that weren’t.   Only after the agent’s rejection was I able to begin looking at my work more objectively.  Whether I’ve been objective enough remains to be seen.   This is one of the lessons I have learned – you need to be brutally honest and unsentimental when reviewing your work, because potential agents and editors and publishers, who are reviewing literally thousands of documents, have no choice but to be brutal in their assessment – and you only get one crack at each of them.  The other thing I’ve learned is that once you get past your own ego, and recognize and address the flaws, your document will be indisputably better.

Despite the flaws that still surface in my frequent reviews and the self loathing I am too often subject to, I remain convinced that the assembled collection has a worthwhile story to tell.  My affliction with Parkinson’s disease has changed me and the way I view the world and my own past.   It has taken my life’s journey on an unexpected and dark detour.  My hope is that, for the reader, my book can shine a light, however dim, and help illuminate the dark paths that are as unexpected as they are inevitable in everybody’s journey.

So, as Walter Cronkite used to say …  that’s the way it is.  Stay tuned for additional developments …


DBS – Part One

(I am considering using this exceprt as the revised opening to the memoir I’ve written – the overall gist of which is to describe what life is like for an early onset Parkinson’s disease patient – any feedback would be appreciated)

January 14, 2010:  I wake up and I am half sitting in my hospital bed in a large room.  The heavy metallic frame that was screwed into my head earlier in the morning has been attached and locked into some larger metal base that I can’t see.    I can hear the usual blips and beeps of hospital equipment, plus the low hum of static.  It’s chilly, and there are people in scrubs milling about.  One of them notices I am awake, and the next thing I know my neurosurgeon, Dr. Rosenow, is in front of me.  He tells me the static I hear is in fact my brain talking, the impulses it creates converted to audio, and that they’ll be listening to it and talking to me as they install the first set of electrodes in my brain.  The fact that my brain waves sound like static is somehow not surprising to me.

As I sit there, awake with neurosurgeons literally in my head, listening to the white noise my brain is broadcasting, I look around the room, at least the portion of it I can see through my peripheral vision, as the bracket my head is mounted to prevents me from turning.  I see to my left and right a curtained off area that goes in a half circle around me, there is a man, a neurosurgeon I’ve never met before, sitting to my immediate right, and Dr Rosenow is behind me now, talking to me, apparently on the other side of the curtain.   He explains that they are now to the part of the procedure where, before they install the first electrode, they have to make sure they are in the right spot, and that they’ll be “listening” to my brain.  For the next hour or two, Dr. Rosenow, for the most part unseen because, just like the wizard of Oz, he does most of his work from behind the curtain, explores my brain by doing whatever the heck he is doing back there.  This must involve turning a dial of some sort, because sometimes, I can hear the static gradually getting louder, and then I feel my right leg and foot and then hand start to tremble and shake, slowly and gradually at first, then more and more rapidly and violently, until he turns the dial down and the shaking diminishes.  The other neurosurgeon takes my arm and bends it, and when he feels the Parkinson’s cog-wheel effect, they listen for the resulting quick change in the static to know they are recording the symptom; as they go on, I learn how to listen for these slight changes in the static patterns that indicate whether they are in the right spot in my brain.

This is all part one of the two part procedure known as Deep Brain Stimulation, or DBS.  When part two is complete, two weeks later, I will have two electrodes installed in my brain; they will be connected by wires which run from my brain down my neck to the right side of my chest where a neuro-transmitter will be installed.  Once programmed and turned on, the neuro-transmitter will send signals to my brain that will drown out the noise caused by Parkinson’s disease, the noise that is largely responsible for my symptoms of rigidity and stiffness.   DBS treats the symptoms of those Parkinson’s patients who are in an advanced state of the disease yet still young and healthy enough to lead an active life.  For these patients, it is viewed as a second chance, an opportunity to regain capabilities that the disease had stolen, and to retain a level of independence and freedom required to carry on a normal life.   It is not a cure for the disease, and does not prolong the inevitable outcome; rather, it treats the symptoms for a period of time.  I’d been eagerly anticipating this second chance for the past six months, as various complications delayed its start, and between work and Parkinson’s, life was declining in an increasingly repetitive exercise in fatigue and discomfort.  I felt like I was gradually fading away.