Last Saturday, September 22nd, 2012, I finished the last chapter to my novel.  Since then, I’ve been going back over it, to see if it’s readable, if it’s sequenced correctly, if it’s properly paced, and looking for major inconsistencies in character placement and chronology and setting and so forth.  Then I’ll have to go back through it with a keener eye and start editing, looking for the grammatical and stylistic shortcomings that are all too often overlooked whenever one reads his own manuscript.  In short, there’s still a lot of work to be done before I dare submit it anywhere.

That being said, I still feel a tremendous sense of accomplishment and pride.  Not that it’s a great book or anything, but I did it, I’ve written a novel, even if it is only a rough first draft.   This is something I’ve dreamed of doing all my life, and about the fourth time I’ve tried.  The other three attempts were undertaken at various points in my life and were miserable failures.  I’d  get about  50 to 100 pages written and realize that what I was writing was crap and was going nowhere.    More than anything, I didn’t have the will to stick with it, to get rid of the crap and salvage the scraps that were good.  I was unwilling and unable to learn from the process.

I’ve always been able to write.  In school, it was one of the few things I did well, and I was able, with a minimum amount of effort applied, to consistently have my papers read aloud by my teachers.  I recognized that I’d been born with some talent.  It came easy for me.

That was the problem.  Soon after I was out of high school, I tried to sit down and write, some short stories and my first attempt at a novel.  I quickly found that, gift or no gift, writing, when not given a specific assignment and a deadline, is damned hard work, and requires discipline and determination, two things that I had no concept of, two things that quickly sucked any joy out of the endeavor.

So any dreams I had of writing were put on a shelf somewhere in the dusty attic of my mind.  I went to school, focusing on the more economically viable and growing field of Information Technology, and started a career and raising a family.  I grew fat, dumb, and happy – seriously happy.  I loved my life as a husband and a father, and found both roles to be extremely gratifying.    For the most part, I enjoyed and took great satisfaction from work.

Still, from time to time, while putting other things away, I’d stumble across those musty attic shelves and blow the dust off my writer dreams and attempt another go at a novel, the memories of praise from high school teachers and my mom serving as inspiration.  It didn’t take long for me to realize that trying to impress your mom isn’t a good enough reason to write, especially when you realize she’s your mom, and is pre-disposed to liking anything her child produces.   Mainly, I still wasn’t ready for the perspiration, the hard work required.

Then in early 2005 I was diagnosed with Parkinson’s disease.  Not long after my diagnosis, I began to suffer from serious sleep irregularities.  I found myself up in the middle of the night, unable to go back to sleep for hours at a time.  One night, tired of playing the sports simulation games I normally passed the time with, I opened up Word and started writing.  I started by writing descriptions of vivid dreams and childhood memories that had recently been flooding my mind.  I went on from there to write essays describing my experiences with Parkinson’s.  It occurred to me that maybe my children would someday find value in knowing what their old man was going through, what he was thinking and feeling and what he was doing in the middle of the night.  I finally had a reason to write, and more importantly, a desire to get better at it.

I joined a local writers group (the Kenosha Writer’s Guild), not knowing what to expect.   It was the best thing I’ve ever done.  They were kind and generous and supportive in receiving my work.   More importantly, I found amazing and diverse talents in the group.  I’ve learned so much from their support and critique of my work, I’ve learned even more reading and critiquing theirs.

I wrote a series of essays and tried to get a collection of them published as a memoir focusing on my experiences with Parkinson’s.  I had a couple of feelers from a couple of literary agents, but they both eventually turned me down.  I could see why; I knew what I was lacking, and that I just didn’t have it in me to fix them yet.  It’s not that I wasn’t willing to put in the work, it was more a realization that the story I wanted to tell wasn’t ready yet.  This plus the fact that I was growing bored with the subject of the memoirs – me – lead me to, almost two years ago now, start work on a novel.

At first, the thought of writing fiction, especially a long work of fiction, was daunting.  I’d become very comfortable with the essays and memoir material, learning to some degree how to craft personal experience into something a bit more universal, how to articulate my view and experience of the universe in a way others could see and relate to.  In fiction, it seems you have to create the universe first.  I’d have to articulate what I imagine, and that seems much more personal than the fact-based world of memoirs.

But that quickly went from daunting to liberating.  It was the realization that in fiction, you can still describe what is important to you, but you are no longer limited by the constraints of experience.  If you strongly believe something but you don’t have fact based experience to support it, you can just make something up to fill in the gaps.

Still, I knew nothing about writing a novel.  When I started, I had a setting that I wanted to write about, and a handful of characters, but I really didn’t have a story.  So I dove into it, and soon a story began to reveal itself.  I followed it for a while, but I quickly found it wasn’t going anywhere I was interested in.  I still liked the setting and most of the characters.  So I started off on a second storyline.   Like the first, it wasn’t going anywhere.

What I had at this point was a setting and some characters and some random, disconnected stories about each of the characters, but still nothing to connect them.  I then decided, screw it, I’d write one of the stories and see what happened.  The story was about a middle aged woman who is married to a man with one leg and has an affair with a second one legged man.   I wrote the story, and when it was done, I thought, this is the best fiction I’ve ever written, there has to be something there.   I then wrote another story, with one of the main characters from the first, and I liked the second one even more.

At about the same time, I read the book,  “The Temple of Air”, by Patricia Ann McNair, a collection of loosely connected short stories about a Midwestern community.  It’s a great book, it knocked my socks off, and for a while, I thought, that’s what I’ll do – I had all these story lines and characters, I’ll just keep writing the stories and see what happens.

Eventually, though, I was able to find the thread that connected the stories, and wrote several chapters that were strictly transitional – so it seems I have a novel after all.

Now I have to tweak it and get it ready to submit.  I am realistic enough about my own talents and the nature of the market place to know that publication is unlikely.   That probable frustration still waits – for now, I am going to enjoy and take pride in the sense of accomplishment of actually getting a first draft done!

The Good, the Bad, and the Crummy

One of my favorite paintings is Christina’s World, by the great American artist, Andrew  Wyeth.  For years now, a reproduction of the painting has hung on my living room wall.  The subject of the painting is a middle aged woman, crippled by polio, who Wyeth observed crawling to her neighbor’s field.  The painting always had an impact on me, the composition that Wyeth uses to dramatically heighten the vastness of the landscape, the absence of trees, the empty sky and the weathered buildings, and the woman, somehow both small and large, dominated by and dominating the landscape at the same time, with her withered arms and twisted feet and faded pink dress.

These days, when I look at the painting, I am reminded of my own experiences with Parkinson’s Disease.  I don’t mean to imply that I am anywhere close to the severity of Christina’s polio.  But I recognize the position Wyeth stages her in, leaning on her side, her arm bent under her, as the same position I find myself in when trying to roll myself over in bed, particularly in the morning, when it has been several hours since I last took my meds.  Everything is slow, from getting dressed to eating to taking the garbage out, and is only getting slower.  So I can relate to crawling across an open field.

If I had to summarize my current condition, I’d divide the days into three categories:  The good, the bad, and the crummy.

The good days are still the vast majority.  On the good days I feel pretty good most of the day.  The “off“-periods (times during which the effectiveness of my medications is wearing off) are four or more hours apart, and when they hit, they aren’t too bad.  On good days, my episodes of daytime fatigue aren’t too bad, usually hitting in the late morning, and a half hour or so sitting in my recliner, awake or asleep, seems to adequately re-charge me.

The bad days are the days when the wearing off occurs more frequently, sometimes as frequent as every three hours, and are more severe.   At their worst, my entire body is overtaken by a discomforting rigidity, or stiffness.   At these times I shuffle more than walk, and at the very worst, every movement, no matter how minor, is very difficult.   This is how I wake up most mornings, and getting dressed, particularly bending over and putting socks on, can take several minutes.  If I’ve eaten too much or the wrong things since I last took my meds, my wearing off periods are accompanied by stomach nausea and/or severe acid reflux.  On the bad days, the fatigue persists, and becomes incapacitating.  The bad days typically occur a day or two after doing something physical, after overdoing it.  There is also a greater likelihood of loss of balance during these times.  I’ve had four falls during the last month.

I built a wooden compost box for my wife’s flower garden, to generate good planting soil.  She puts yard waste, coffee grounds, egg shells, etc. A few days ago, while moving the new box into place next to our barn, I leaned too far forward and fell over the side and right into it. It took me about five minutes to get myself up and out. Another time, about two weeks ago, I was in a public men’s room at a gas station, urinating, when, as the trickle slowed down, I moved forward a bit and apparently had my head bent too far forward. I felt myself falling forward, right over the toilet – fortunately, my head broke the fall, smacking loudly into the wall – I put a small dent in the drywall but didn’t break through.

The scariest fall happened the day before yesterday.  I was carrying an armload of dirty laundry down the basement when I lost my balance and fell hard down the last three steps.  The scary thing about these falls is you can feel yourself losing your balance, it’s like it’s in slow motion, but you can’t get your arms or hands up quick enough to brace yourself.   I was lucky in that I only wrenched my right knee, it could have been a whole lot worse.  But, of course, the next day not only did my knee hurt, but the off-periods were more intense because of it.

I’d estimate that currently the good days outnumber the bad days by about three to one.

Then there are the crummy days.  A good day or a bad day can also be a crummy day.  Crummy days are the days when I think about my condition, days when I realize how bad the bad days are, and days when I realize that even the best good days aren’t as good as the most average run of the mill days prior to my diagnosis were.  The crummy days are the days when I realize how much I’ve declined, and how much worse it’s going to get.  I also feel, on the crummy days, an incredible sense of isolation, and that I am, like Christina in the painting, a solitary figure in an empty landscape.  In short, the crummy days are days when I feel sorry for myself.

I don’t have too many crummy days.  I normally try to stay positive and keep them at bay.  But I’d be dishonest if I said they didn’t exist.   I think it’s important to do whatever one can to minimize the crummy days, and I think it is equally important to recognize they can’t be completely avoided.  I think it’s important not only that I understand this, but that the people close to me do, too.

I’ve written a great deal about the new perspective I’ve gained since having Parkinson’s and the new found appreciation of every day miracles I never noticed before.  These things are true and real, and they bring me comfort, but in the end, one thing above all remains true:

It sucks to be sick.

If Al Pacino Was My Dentist

(I’m a big Al Pacino fan.  I love the moment that occurs in almost all of his movies where, after being on edge for so long, he finally loses it and explodes – whether it’s “Dog Day Afternoon” or “Scent of a Woman” or “Scarface.”   Nobody explodes like Al Pacino.

For some reason, frequently after watching a Pacino movie on television, I fall asleep and have the same recurring dream where Pacino is my dentist.  It goes something like this ….)

Pacino:  So how have you been?  Any problems with your teeth?

Me:        I’m fine.  No problems with my teeth.

Pacino:  Okay, we’re just going to do a cleaning today and a quick check-up.   Open wide.   That’s good.  (Starts poking around, stops, hits a nerve on the uppers, middle right side.)  Does that hurt?

Me:   (water in my eyes)  Just a little.

Pacino:  There’s some decay in that tooth.  (Pulls his hands out of my mouth and sits back) Have you been flossing?

Me:         Flossing?   Um, yeah, every day.

Pacino: (slowly and softly)  Every day.

Me:        Yep, that’s right.

Pacino:  (slowly and evenly, building)  You’ve been flossing ever day.   Every day.  Yet when I look in your mouth, I’m up to my ELBOWS IN PLAQUE.  AND I’M SUPPOSED TO BELIEVE THAT YOU’VE BEEN FLOSSING EVERY DAY?

Me:         Did I say every day?  I may miss a day or two now and then.

Pacino:  (Calmly) Tell me, Dave, how long have I known you?

Me:        I’m not sure …

Pacino:  How long have I been your dentist?

Me:        Well, let me see now, it’s probably been five or six years.


Me:        I might have overstated the frequency a bit.


(The hygienist enters)

Hygienist:  Doctor, the x-ray machine seems to be out of order.


Me:        Maybe I should come back some other  ….

Pacino:   YOU AIN’T GOING NOWHERE.  I’M JUST GETTING WOUND UP!  Now, when was the last time you flossed?

Me:  (nervous)  The last time?

Pacino:  (wielding a drill) Just answer the question.

Me:   (sweat on my brow)  Oh, I guess, a week or two ago.

Pacino (revving up the drill):  SAY HELLO TO MY LITTLE FRIEND!

Me:   Ok, not a week or two.   I confess!  I’ve never flossed!   I don’t even know how to hold the stuff! (Suddenly a defense mechanism kicks in and in the dream, I turn into Jack Nicholson)

Pacino:   Okay, that’s better.  Now let’s take a look at that bad tooth.  Open wide.

Me (Nicholson):  Sorry, Al, no can do. All work and no play makes Al a dull boy.

Pacino:  I said, open wide.  I need to LOOK AT THAT TOOTH !


(At this point I wake up with an overwhelming urge to rinse)

Empty Nest

They call the process of a woman giving birth “labor.”  If that’s the case, my wife, at 36 hours spent in the old St. Catherine’s hospital, put in almost a full week’s worth in giving birth to our first child, Jon, born on September 5, 1985.  I think it was threat of overtime that finally motivated the doctor to grab a set of forceps and pull the boy out.

That was 27 years ago.  Until this past Monday, when we returned home from dropping our youngest child, our daughter Hannah, off at college, that marked the last time my wife and I were the only two residents of our house in Pleasant Prairie, Wisconsin.  Much has changed in that time, including the house, which we added a 2nd level to in 1996, effectively doubling its living space, as well as cultural and technological advances that will include me dropping a “Happy Birthday” message to Jon on Facebook. 

This past weekend, at our cabin in northern Wisconsin, was one of the increasingly rare times when all five of us were together as a family.   We hosted a cook out, and Jon drove over from his home in Minneapolis, and Nick and Hannah drove up from Eau Claire.   We had a great time, laughing and sharing memories of our time together.  At some point, as always happens when we are together, I looked at the three of them and felt the same combination of pride and sorrow and gratitude.   I am grateful that the fates smiled upon us to give us such healthy and vibrant and beautiful children.  I am proud of the people they have turned out to be:  strong, independent, smart and caring. 

It’s the sorrow I have trouble with.  I am left with such wonderful memories of each of them; of Jon sitting on my lap as I mowed our grass with our lawn tractor, of the winter’s day that I watched Nick, maybe two years old, through the window as he discovered his shadow, or the mornings I would bring Hannah her breakfast, pretending to be her loyal servant, announcing “Your breakfast is serrrrrrrrrrrrved.”   These memories have always brought me great joy; the pangs of sorrow that now accompany them seem somehow incongruent.

I think what brings me sorrow, what I am mourning, is that time goes by so quickly that when you are living it, it’s impossible to truly appreciate how wonderful life is.  When my children were small, they were with us every day, and every day some magic, some small miracle, unfolded right before our eyes.  But our eyes, as eyes too often are, were distracted, were filled with bills to pay and work and other trivial matters that seemed so important at the time but have since been long forgotten. 

It’s only years later, when our children become adults and the old house becomes an empty nest, that we realize what we missed in our preoccupation, and just how remarkable those times were. 

But then I look at my wife, and after 31 years of marriage she is still as beautiful to me as she ever was, and I love her more than I ever have, and I realize, even in these days of empty bedrooms and silent hallways, that is pretty remarkable, too.