Peaks and Valleys

I recently had an appointment with my Movement Disorders Specialist in Chicago to treat my instance of Parkinson’s disease.  She tweaked my Deep Brain Stimulator and gave me a wider range of settings to try.  The most interesting thing we’re trying involves a program she set up on one of the four pair of leads to decrease the frequency of the pulses but increase the voltage.  In other words, less frequent but stronger signals being sent to my brain.

The results so far have been interesting.  Many of my side effects, including voice and balance issues, have been much better.  At the same time, the meds I take are wearing off every three hours  compared to every four to four and a half hours before, and these “off” periods are hitting harder. Up to now, my “off” periods would slowly and gradually take hold, announcing their presence first in my toes and fingers and slowly moving over my entire body.  Now, it’s like a light switch being turned off, as literally one minute I’ll be fine and the next any movement at all is difficult and I am slowed to a nearly inanimate state.

So I’m learning how to deal with these new settings.  The good part is that during my “on” cycles, my peaks, while shorter in duration than before, are higher than they were, while the bad part is that I crash down harder and faster in the valleys of my “off” cycles.

Peak:  There are trade-offs, and today I was able to use my improved voice to appear on my writing group’s radio show, which I’ve been avoiding in recent months.  Today not only was I able to read a short piece I’d written, I was also able to conduct an interview with one of my favorite writers, Michael Perry.  For a half hour, we spoke about writing, and it was great, we talked and we listened to one another, and it was incredibly gratifying to have a conversation without having to worry about my ability to articulate and be clearly understood. I immensely enjoyed every moment.

Valley:  Tonight my wife and I were playing Scrabble and having our normal great time, when I crashed into a bad off period.  Suddenly, I couldn’t make my fingers work to reach into the little bag and get my letters.  She had to help me, which she did with her usual grace and good nature, and it wasn’t a big deal, because she is so good at preventing things from becoming a big deal.  But I’d be lying if I said that at least on some dark and deeper level it didn’t bother me.  The game was nearly over, we finished and spent the rest of the valley watching the Brewers lose again.

Peak: A couple of hours later I’m straightening up my office, with music playing, Frankie Valli singing “You’re just too good to be true,” and Tucker, our ten month old English shepherd puppy is lying on the floor, and I’m feeling so good I start dancing and lip synching “at long last love has arrived, I thank God I’m alive.”  Tucker looks at me and tilts his head in confusion.

Valley:  My wife is showing me some decorating she’s doing in our bedroom, and she is so animated and content that I am overwhelmed by how much I love her, and the lyrics “you’re just too good to be true” come back to me, and I realize that she is the truest thing I know. The past thirty four years we’ve been together flash in front of my eyes, and I see us as we were then and I see me as I am now and it takes all my strength not to burst into tears.

I used to get angry when I’d think of what this damned disease is doing to me and what it’s taking from us.   Lately, I just feel sad, and that worries me.  I want my anger back, I want to be able to tell my PD to go fuck itself.  There is strength in anger, and weakness in sorrow. I want to be strong again.

I need to work at that.


Today was a good day.  I felt pretty good most of the day, and my wife was off work, so we were able to spend it at home, together.   The weather was beautiful – sunny, a little cool for July, and dry.  We were both up by 6:30, and spent the first couple of hours waking up and reading, coffee and toast for breakfast.  I did my daily Parkinson’s disease stretches, and by 9:30 I was moving pretty good, and I went outside.

First, I took the empty gallon iced tea jugs I’ve been saving out to my workshop, and funneled the old used motor oil I had lying around in various containers into them.  Two or three more empties and I’ll have all of my old oil accounted for, and I’ll take it in to the recycling center the village has established.

Then I put the new tire I’d bought at the True Value store a couple of days ago on the wheelbarrow, replacing the old one that wouldn’t hold air anymore.  Then I weeded my vegetable garden while my wife weeded her flower garden.  Tomatoes are starting to come in.  That’s exciting.

Then I burned some brush, some yard waste we’d accumulated over the summer.  It was the second of four brush piles we’ve burned; the other two are probably still a little bit too green to burn just yet.

I emptied the garbage can in my workshop into the main can we take to the curb on Tuesdays.  It was pretty full, it was past time I remembered to empty it, so that’s taken care of.

For dinner, I grilled out, bratwursts, a true Wisconsin delicacy.  We ate, then my wife worked some more in her flower garden, while I read.  We came in, she gave me a much needed haircut, and we played our nightly game of Scrabble (she won – AGAIN).  Now it’s 9:30 and getting dark, and I’ll try to get an hour or two of writing in before I go to bed.

Tomorrow, Deb goes back to work, I tutor for the literary council in the afternoon, and I have a meeting with my writer’s group tomorrow night.

This may all sound pretty routine and boring, but for me, it’s as good as it gets.  I love days like this, when I feel good enough to get some jobs, admittedly small jobs, done and crossed off of the list.  I know it’s a fraction of what I used to do every day, but I also know I can’t do most of those things anymore.  And to be honest, on some of the days that aren’t this good, the bad days, I sit alone most of the day and brood about that.

It’s more than coincidence that my wife was home and that I had a good day today.  There’s a definite correlation.  It’s not that we did anything special together or even left the yard.  It’s the fact that she is here, near to me, that matters.  It’s the comfort I take in her presence, looking out the window and seeing her in her flower garden, and showing her the green tomatoes coming in in my garden that means so much to me.  After 33 years together, we’ve become more than best friends, more than partners, more even than soul mates.  We’re tied to each other, inextricably linked.  We are companions.

While the number of good days left slowly counts down and diminishes, the appreciation and enjoyment of each one increases.  Days like today are truly remarkable and meant to be treasured.  The sun  on my face in my backyard, the sound of the breeze through the trees, the feel of a wrench in my hand while tightening the bolts on my wheelbarrow, and the image of my wife in the midday golden, green,  and red of her flower garden, are all more perfect than anyone can ask for.

Identity Crisis

I used to be a manager in I.T. for a large corporation.  I made a lot of friends in the time I worked there.  Beginning some time in 2003 or 2004, a group of us got together every month for a poker game.

In 2005, I was diagnosed with Parkinson’s disease.  About the same time, one of the guys who used to work for me, and one of the original members of our poker group, moved away to Silicon Valley in California.  Despite the loss of our good friend, the games went on.

In 2011, after several instances of falling asleep behind the wheel on my way home from work, and with other symptoms making it more and more difficult to do my job, I left the corporate life behind.   Parkinson’s brought an end to my corporate career.   I was now a full-time “Parkie.”

But I refused to accept that that was all I was.   With time on my hands, I decided to take a serious whack at something I always wanted to do, so I started writing.  At first I wrote about my experiences with Parkinson’s, but as time went on, that wasn’t enough.  I began writing fiction, eventually working my way up to novels, and in January, I self published my first novel, Ojibway Valley.  Now, while still a Parkie, I’m starting to think of myself as a writer, too.

The poker games continued but gradually became less frequent, as time went on and more of us went our separate ways, until last August, when they seemed to abruptly end.   As the games ended, my contact with my friends and former co-workers waned.  I understood that the shared experience of work had always been at the core of those friendships, and now that I wasn’t part of that world anymore, all I had to offer was the past, and that meaningful friendships need more than memories to sustain them.  I was busy forging my new identity, and while their world moved on without me, so too was my world moving on without them.

Then about a month ago, our former co-worker who’d moved to California sent an e-mail out to the poker group, saying he’d be in town in February and asking if we could get a game together.  So it was that we reconvened last night.

Leading up to the game, I admit to a bit of apprehension at how things would go, given the different directions our worlds were moving in and the space that had been put between us.  Would they still recognize me?  Would we still have anything in common?

The turnout was great, as we had ten participants, an all-time high.  Guys showed up who I hadn’t seen in three or four years.

When I walked in, I was warmly greeted by smiles and handshakes and, much to my surprise, by copies of my novel.  It turns out that they were all very interested in my new world, and here’s the part that really shocked me – they were even proud of me!   As the night went on, it felt warm and close like it always did, for the more than ten years since our first game, and I realized that I wasn’t the only one who’d changed in all that time.  We’d all changed, as we’d grown older and raised our families.  Some changed jobs, new members joined us and old members dropped out, but sitting around the table playing poker and telling bad jokes hadn’t changed one iota and felt just as great as it always had (that wasn’t all that hadn’t changed – I again lost almost all of my money, proving once again that I am a terrible poker player!)

So it turns out that the various identities I’ve worn – corporate I.T. manager, Parkie, or Writer – haven’t been as important as that of Friend.  Once established, friendship is strong enough to encompass a galaxy of different identities.  In our friends, we recognize and respond to the core identity we all share, that of living and breathing and changing human being.

I’ve been working for a while now on a second novel, and when people ask me what it’s about, I respond by saying that it’s about a guy who emerges from the clouds of self absorption to recognize that there is a whole world beyond him.  Little did I realize that I was describing exactly what our little get together did for me last night.  It made me recognize the sustenance that friendship provides.

Now if only I could recognize when I’m drawing dead against a full house, I might be getting somewhere …


A few years ago, when I started writing about my experience with Parkinson’s disease, I decided that if I was going to do it, I’d try to do it as honestly as possible, warts and all.  That is easier said than done.  Try as one might, it’s impossible to separate the events from the emotions, and we all know that emotions are deathtraps for objectivity.

So when something happens like the events of last Sunday morning, the natural inclination is to hide the embarrassment and humiliation and not write about it.  I’ve always been pretty even keeled, without much of a temper, and able to keep my emotions under control.  Losing my senses even temporarily is unfamiliar territory; a source of both shame and mystery. So I’ll try my best to explain.

It was Sunday morning, the day after opening day of the gun deer hunting season in Wisconsin.  My brother-in-law Doug and my son Jon and I had driven from my cabin to a butcher’s shop in a nearby small town to get Doug’s deer processed.

I was helping Doug lift his deer out of the back of my truck.  He had the front legs and I had the back legs and as we pulled the carcass out and away from the truck, I felt my balance going, and I let go of the deer and fell hard on my right shoulder on the cement floor.  I struggled for a second to regain my balance, got back up on my two feet, and immediately fell again, at the exact same angle, my right shoulder pounding into the cement.   It was the Parkinson’s balance dance I’ve become all too familiar with.  As I tried to get up again, the butcher cracked, “What, did that guy have brandy for breakfast?”  And then I lost my mind.  I don’t know where I was, but I was gone, the bright morning sunlight igniting pure white rage.  I started swearing and stumbled into my truck and started looking for targets.  I wanted to smash my fist through something; the best I could muster was throwing whatever I could find.  There was an open bag of pretzels in my truck, I grabbed it and hurled it against the windshield, pretzels flying everywhere.  At this point the contents of my wool hunting pants front pocket emptied out onto the floor, and I threw the little bag of  hand warmer, and then I grabbed my brand new hunting knife and threw that, too, unaware in my blind anger that it had opened up and that I had grabbed it by the blade.  I didn’t even notice the blood that sprayed across the inside of the windshield and stained my door.  Doug and Jon had at some point gotten into the truck and were yelling at me to calm down as I put the accelerator to the floor and peeled out of the driveway into the street, trying to articulate my rage by screaming out profanities that only lodged in my throat and further fueled my anger.  It came from deep down inside me, and as it intensified, it became more real and more honest. Fuck that asshole for implying I was drunk, fuck the humiliation of falling yet again, fuck everything that I used to be that I’m not anymore, fuck the narrow minded assholes who don’t get it, who don’t understand all that I’ve lost, fuck the past for reminding me, fuck the future for what I will become, fuck the cement floor of the butcher’s garage, fuck the early morning sunlight, fuck you, fuck me.

Somehow Jon and Doug calmed me down enough to stop the truck and let Jon drive. I got out and switched places with Jon, and as I took my seat on the passenger side, Doug, from the back seat, handed me a brown glove and said, “Here, wrap this around your finger.”  Then, turning to Jon, he said, “He’s gonna need stitches.  Do you know where the nearest emergency room is?”  At that point, I unwrapped the glove from around my right index finger and saw how deeply I had cut it for the first time, and I saw the drops of my blood sprayed across the windshield, and I started coming back.

Jon stopped at a nearby gas station and ran in and bought some gauze and band-aids.  He came back out and neatly and patiently wrapped my finger.  I was still only about half aware of my surroundings; it still hadn’t registered, what had happened, as Jon pulled out on Highway 8 and started heading east.

Then in the sudden quiet of the truck, it hit me, and I could almost see it all unfold again in my mind’s eye, me falling on the cement, starting my tirade, throwing the bag of pretzels, and grabbing my opened knife and throwing it.  Without warning, I felt pressure behind my face and I burst into tears, crying.   I fought hard and stopped the tears, only for them to build up and burst again, and I sat there, in the passenger seat next to my son, fighting the tears and losing, ashamed and embarrassed by the scene I’d created.

Finally, enough time and distance elapsed for me to regain control of myself.  I apologized to Doug and Jon, my only explanation being that I snapped like I had never snapped before, and that I didn’t know why.  Doug was great, completely non-judgmental, explaining how he’d lost control a couple of times in the past, and that he understood.  I’ve always thought of Doug as a good guy with a good heart, but I realize now that I’ve underestimated my brother-in-law, that there is a depth of soul that I was unaware of.  I can’t thank him enough for his kindness and his support and his understanding.

We got to the emergency room and after I finished at the front desk, I sat down in the waiting room next to Jon.  Doug went to get something out of the truck, and it was just Jon and I, my firstborn son and his father.  We sat there, and quietly talked, exactly about what I don’t remember, but he was calm and steady and then I was, too.  I realized at some point our roles had reversed, and he was taking care of me.  The amazing thing is the comfort I took from this, from the knowledge that Jon was there for me.   My son is a strong and capable and sensitive man, and I couldn’t be prouder of him.

They waited for me as I went in and the doctor stitched me up, eight stitches.  He ordered an x-ray of my finger to make sure I hadn’t cut it to the bone. My shame and humiliation at my temper tantrum grew when, in the same room behind a curtain next to me, as I waited, the doctor treated a woman with cardiac problems, who was having trouble getting warm after hunting in the sub zero morning.  The x-ray came back indicating the bone hadn’t been damaged.  All told, a minor medical event caused by a major emotional malfunction.

The rest of the day went by without incident, the three of us watching the Packer game and Jon returning to his home in St. Paul.  My finger was wrapped too heavily to pull a trigger, so my hunting was done, at least for a day or two.  But that’s okay; to be honest, hunting isn’t all that important to me anymore.

So what did I learn?  I learned that as old and wise as I am, I’m still capable of behaving like a spoiled two year old, throwing things and pitching a hissy-fit when things don’t go my way.  I also learned that I’ve got more bottled up inside than I’d care to admit, and that I am capable of exploding.  I’ll have to keep an eye on that – it’s good to know,

Most importantly, I learned that I am not alone, that I am surrounded by kind and exceptional people who genuinely care about me, even when I behave like a raging lunatic.  This is the lesson that I am most likely to forget first, but it remains the most important.


For years, my life was a model of stability.  My marriage was wonderful, my kids were well behaved and stayed out of trouble, work was steady and income was sufficient.  About the biggest crisis I had to deal with was when the jar of peanut butter got too low to safely dip a Ritz cracker into, resulting in breakage and crumbs lodged too deep for removal.

Things are a little different now.

The past few weeks have been a mish mash of feelings and emotions that I’m just beginning to understand.   I haven’t been writing as much as I normally do.  Most of the writing I’ve been doing has been work on my second novel, and it’s been strangely unsatisfactory.   It’s been bland and banal, even as I work out problems with the plot and develop new characters and twists that I know will fill problematic holes I’ve been wary of for some time now.   For some reason, I haven’t been able to generate the same levels of enthusiasm I normally have no difficulty achieving.

Part of it has to do with the recent 3rd anniversary of my brother’s death.  An inevitable sadness sets in this time of year.   I can’t help but think of him and what might have been, and what I could have done differently, and I am filled with regret and sorrow.

Part of it has to do with the recent observance of my 55th birthday.  Numbers have never bothered me.   Thirty, forty and fifty came and went with no angst or despair.   For some reason, though, fifty five is hitting me.   Maybe it’s because my age is now equal to the speed limit on most county and state highways.   That doesn’t make any sense.  I guess it’s just the awareness that I’m not young anymore, and while I might hang on to the classification of being “middle aged,” I’m aware I am reaching the upper limit of that demographic.

So much of the old world I knew has either died or changed.  It’s a natural part of the aging process. It’s also why I’ve been up late a lot lately, watching movies from the 70s and 80s on TCM.  In the past couple of weeks, I’ve seen McCabe and Mrs. Miller, The Last Picture Show, Silkwood, Monte Walsh, and Modern Romance.   All excellent films that are signatures of the era they were made in, and watching them takes me back to simpler times.  They were simpler for me personally, at least, as I was young and healthy.

Change is constant.  In the past couple of years, I’ve watched my children leave the house.  I left the job I worked at for thirteen years.  Family and work are perhaps the two largest components of identity.  Add to that my diagnosis eight years ago of Parkinson’s disease, my brain surgery to implant neuro-transmitters, and my ongoing treatment.  When I look at the big picture, I realize that I’ve gone through a heck of a lot of change.

Now days I am involved with leading the local Parkinson’s support group, I am on the board of my writer’s group, and I just started training as a volunteer for the local literacy council.  And I write …

Last night, while watching Albert Brooks’ wonderful film Modern Romance, I was struck with what was missing in my novel writing lately.  I’d gotten into the characters and the plot to a point where I’d forgotten why I was writing about them, what it was about them that I cared about.   It wasn’t personal enough.   What made all those movies I’ve been watching lately so good is that they were all intensely personal statements by the directors.  Whatever the genre, whatever the setting or plot, or whatever the point of view, I respond to art that expresses something that matters to the artist.  And it occurs to me that even a neophyte hack like myself must have something personal to say.

I need to return to the things that prompted me to start writing this novel, this particular story, in the first place.  It’s not the plot elements or new characters I might introduce, it’s finding something in them that relates to the things I care about.

So if this is in fact the dreaded mid-life crisis that I’ve heard about for so long, then let’s just get it the fuck over with.  I’m bored with it, and I’m losing patience with myself.    I need to pull my head out of my ass before the peanut butter jar level gets any lower.   I can only deal with one crisis at a time.

We Could Be Heroes

(This is a piece I wrote several  years ago, after attending my oldest son’s college graduation – I re-post it in honor of Jon’s birthday)

The first thing I remember writing was a poem to a girl named Anita when I was in second grade.  Anita was morbidly obese.   Immature as I was even for a second grader, however, I never joined in the cruel jokes and insults that too many of the other kids constantly abused her with.   I never made any remarks about her weight, and I was impressed by her ability to ignore and shrug off the meanness.  So it remains a mystery what inspired me to write the following ode and present it to her on a folded up sheet of paper:

                     Anita, Anita
                    I smell your feet-a

Being understandably proud as I was of this little masterpiece, you can imagine my surprise when she burst into tears and showed my note to our teacher, Miss Berg, reinforcing her well established opinion of me as a disruptive good for nothing.  I remember being shocked at Anita’s reaction, thinking she would find my little rhyme humorous.  After all, I made no reference to her weight, and had seen her silently suffer much worse insults from many of the other kids.  Maybe it was the fact that I had found something else to pick on her about, maybe it was the fact that one of the few kids who didn’t make fun of her had now joined the many that did.  Whatever might have been the reason, it was beyond the grasp of my six year old brain.

Despite the critical failure that was my first literary work, it didn’t take long for me to realize that writing was one of the few things I could do reasonably well.  I found out early on that with little effort, I could not only get good grades on writing assignments, but also that more often than not, my papers were chosen to be read aloud.  This was a rare and significant exception to the normal relationships with my teachers, most of whom shared Miss Berg’s opinion of me.  It was an extraordinary boost to my ego to have teachers recognizing me for something other than being immature and disruptive.

The best part was that this praise was earned with such a minimal amount of effort.  I could put off semester long assignments until the night before or the morning of the due date, quickly scribble something down, and get a rare A, with complimentary notes from the teacher penned in the margins.   I knew for certain, just as my Sister was born with a gift for art that I had been granted the gift to write.  In my private dreams, I invested heavily in this gift, seeing it as a vehicle to the fame and fortune I secretly knew I would achieve someday.

This God-given talent plus the fact I hated school and was a bad student convinced me, upon my High School graduation, that college would be a waste of time.   After all, I was gifted – what could college teach me that didn’t already come naturally to me?    No, the obvious direction for me was to leave home, get a job, and write in my spare time.  So it was that I left the suburbs of southeastern Wisconsin and returned to the ancestral home lands of Northwestern Wisconsin where I had been born.  I took a job at Norco Windows in the town of Hawkins, rented an efficiency apartment on the third floor of the historic Gerard Hotel in Ladysmith, and purchased a cheap used typewriter (this was 1977, nearly a decade before the birth of the Personal Computer).  The plan was that during the day I’d work my job and by night write a series of great American novels.

It didn’t take me long to realize two things about my “God-given talent”:  one, my classroom experiences had left me overrating it and two, no matter how much talent one is or isn’t blessed with, writing, when not specifically assigned by a teacher, is damn hard work.  So hard that any satisfaction I expected to experience was quickly stifled by a blank sheet of paper and a ticking clock.

Two and a half years after moving north to become a famous writer, I instead returned to my parents’ home in Union Grove, broke and unemployed.   After finding a job loading delivery trucks, I decided it was time to further my education, and enrolled in night classes.  Knowing now how difficult the work of writing actually was, I put aside any God-given talent inspired dreams and instead focused on something more practical for my major.  Thus it was that I entered the data processing program at Gateway Technical Institute in January of 1980.  The rest, as they say, is history.

The most significant historical event to occur was, early in that first semester, meeting another student, a lovely and sincere girl with long brown hair and green eyes so deep that you could see all the way to her soul.  I was quickly smitten, and, much to my surprise, she found something in my eyes, too, and soon a romance began that is still, over thirty years later, alive and deepening and redefining the world it has created.

That world has included marriage, the purchase and remodeling and adding-onto of a small house in Pleasant Prairie, the birth and raising of three children, and jobs that combined to form a career.   Nearly but not completely forgotten in the busy days and nights of this world was the God-given talent to write and the fading dream of fame and fortune as a published writer.  From time to time this dream would rise from the depths of my subconscious, and I’d entertain it for a while with abortive night time attempts to write one of the great American novels I always knew I had in me, but invariably all attempts would fade under the burden of hard work that writing still presented and the mediocrity of my output.  Part of the problem was the “you write what you know” concept, and my happy but seemingly uneventful and unexceptional suburban existence was all I knew, and struck me as so common and dull that I found nothing to draw from it that anyone would find any interest in.

Then in 2005, I was diagnosed with Parkinson’s.   At some point, it occurred to me that something interesting had finally happened to me, something that maybe I could communicate with my “gift”.  This plus the fact that early on, shortly after my diagnosis, I found myself playing little movies of  many long forgotten events from my past over and over in my head, with no idea why.   I was fascinated and found meaning in them that I hadn’t seen before.  At some point, I started putting these down on paper, and found the process extremely satisfying.

The question was what to do with these writings.  My first thought was to get them down for my family, my children, as a record of my life and my experiences with the disease.  This made sense because eventually, as the disease progresses, my ability to communicate will be impacted, as my verbal and motor skills will continue to deteriorate.

The more I wrote, however, the more the old dreams of fame and fortune returned, and I started to think of publishing my work in a book aimed to help other Parkinson’s patients deal with the disease, especially the early stages of the disease, which I found to be deceptively complex.   So I had these noble reasons to write, to put my experiences down – as a record for my children, as a mechanism for others to better deal with the disease – and there was at least some legitimacy in these goals.  But the truth be told, my intentions were not really this pure.  I found I still wanted the fame and fortune of my life-long writer fantasies.  The dream had never left, and my ego remained hungry.

Meanwhile, I found myself asking the big questions.  Aware as we are of our own mortality, we humans spend a great amount of energy trying to find meaning.   We’ve invented God and religion, and concepts like faith and truth, to help us fill in the blanks of the mysteries of life and death.   The biggest question is why do we die?   Right up there as another biggie is, why do bad things happen to people we love?

At some point, while standing in super market lines, I started noticing familiar looking headlines in the National Enquirer.   The National Enquirer, tabloid that it is, has to be given its due as one of the longest running and most successful publications still in existence.  While newspapers everywhere are folding and struggling with the changing landscape of the Internet, the Enquirer continues to flourish, even occasionally achieving relevance as one of the few effective investigative journalism outlets, breaking stories like the John Edwards and Tiger Woods extramarital affairs long before the mainstream outlets catch wind.   The reason that the Enquirer has been so successful for so long is that it understands its audience, and it understands the stories they love to read.

The familiar looking headlines I noticed had to do with Patrick Swayze and his battle with cancer.  There was a reason these headlines looked so familiar.  One of the stories the Enquirer has been most successful with over the years has been the famous celebrity stricken with a terminal disease.  The story always follows a similar arch – how tragedy strikes when least expected, often times just as the celebrity has finally found some peace in their life, then on to the courageous and inspirational struggle, complete with some short-lived triumphs, followed by the shocking photos of how the once-beautiful icon we all remember has decayed once that struggle goes south, through to the brave final days, followed by death and memorial.  These stories are as sadly predictable as they are inevitably true –whether it’s Patrick Swayze, Christopher Reeve or all the way back to John Wayne.

The reason these stories sell so well is the meaning we derive from them.  It’s the same story that we see played out amongst those we’ve loved and lost.  Whenever someone close to us is sentenced to a prognosis of a terminal or incurable disease, we react the same way the Enquirer acts – we rail against the senselessness of it all and then take inspiration from their “brave” fight or their “positive attitude”.   It’s all a part of our attempts to find some meaning, and to make some sense out of what appears to be evidence of the chaotic randomness and fundamental meanness of existence.  It’s the same reaction to the awareness of our own mortality that drives us to the belief in an afterlife and the creation of personalized images of Heaven.

Then comes the time when this “senseless” and “tragic” fate becomes our own life sentence.  Having seen this story play itself out countless times before, it informs the expectations we have of ourselves, and also the expectations of those around us. It doesn’t take long to realize what a burden these expectations add.  And, if we stop and think about it honestly, we’re surprised to admit how much importance we place on how we are perceived by others.

Our first child, our son Jonathan, was born at about 8:30 on the warm late summer night of September 5th, 1985.  To say he was in no hurry to enter the world would be an understatement.  It took a pair of forceps and 35 hours of labor to bring him out.  But that’s Jon – stubborn and independent to this day, he’s always been his own man, and his entry to the world, like nearly everything that has followed, would be done on his terms, his way

I was, of course, thrilled beyond words when the doctor pronounced, “It’s a boy.”  Deb and I had been married just over four years, having bought our house in Pleasant Prairie the previous November, and we were ready for children, ready to begin raising a family.  We had purchased a modest house in what was still a pretty rural neighborhood, on 2 ½ acres of land that was once part of a large apple orchard.  When we bought the house, there were still 35 mature fruit bearing apple trees on the grounds.  Across the street from us was a large meadow that ended where 37 acres of old growth Oak woods stood.  At night, in the winter, deer would make their way out of the woods and through the meadow to eat the remaining apples that had fallen on the ground in our yard.  One evening, Deb and I counted seven deer feeding in our front yard.  We were convinced this was the right environment for our children to be raised in.

The first night Jon was home with us, we put him in his crib in the bedroom next to ours and watched him fall asleep.  Moments later a severe thunderstorm hit that shook the rafters of the house for hours.  With each crack of lighting and boom of thunder, we were awake and in his room, the two of us, amazed every time to find him still peacefully asleep.

It seemed for the next two years that that would be the only night he slept through.  We had these cheap baby monitor walkie-talkie gizmos, one listening in his room and the other broadcasting in our room.  My ear was trained such that when the slightest sound of static would carry over these airwaves, I’d wake and shoot like a rocket out of bed into Jon’s room, and if he was in fact awake, I’d get a bottle out of the fridge, sit him on my lap in the wooden rocking chair we had put in front of the big window in his room, and rock him to sleep.  This was our nightly ritual for nearly all of the first two years of his life.  I almost always got up before Deb, even the nights when I’d lie awake and wait for either his crying to stop or Deb to get up, whichever came first, until I could stand it no more and got up, at which point Deb would stop pretending and fall back asleep for real.

But I didn’t mind waking up and spending that time with my boy.   I was head over heels in love with him.  There in the soft lamplight of the night in that rocking chair in his room, I’d talk to him in hushed, soothing tones, comforting him and reading to him.  Over the course of several months I actually read to him in its entirety Jack London’s “The Call of the Wild,” knowing full well that he understood little of it but happy to have an excuse to re-read the favorite book of my own childhood.

When the night would get too long and it was time for him and I to both get back to sleep, I’d position the rocking chair so we could see the night sky thru the big window in his room, and I’d point to the bright star in the west and tell him the story of the Jon-star.  The Jon-star, I explained, was the one star out of the millions of stars in the sky that burned brightest for Jon and Jon alone, and no matter when, no matter where in the world he might find himself, if he was ever lost in the night, all he had to do was find that star and say, “Dad”, and no matter where I was, I’d hear him, and know he was lost.  And at that moment, I’d look to the sky, and the Jon-star would also burn brightest for me, and no matter where I was or how far away Jon was, I’d follow that star and I’d find him, and he wouldn’t be lost anymore.

Flash forward to early May of 2010.  Deb and I are boarding an airplane to Minneapolis to attend Jon’s graduation from St. Cloud State University.  It’s the first time I’ve flown since my Deep Brain Stimulator surgery in January.  I show the card saying I have a medically implanted device to security, and, instead of going through the metal detector I am manually pat searched by a guard, who seems to be more embarrassed by the intimacy of the experience than I am, apologizing and saying things like, “I’m now going to pat your backside with the back of my hand.”

We land in Minneapolis, where Jon picks us up.  After stopping for some coffee and checking into our hotel room, he takes us to his new apartment, not far from the airport, not far from where he’ll be working for Mesaba Airlines as a Material Parts Coordinator.  We then go to a nearby furniture store and, as a graduation present, buy him a table and chairs and a couch to help furnish his apartment.  He is excited, as only Deb and I can tell, since he’s never been the most demonstrative kid in the world, to be out of school and starting his life.  As a parent, it is of course a bittersweet moment, as I’m glad he is getting to feel the excitement of starting his career and entering the workforce, and careful not to dampen that excitement with the knowledge that this is it, boy, the start of your working life, and the inevitability of jerk bosses, dead-end jobs and stress and disappointment that await you.  There will be plenty of time for him to learn about those things, though – this moment, this weekend, belongs to him.

Then we are off on the hour long ride north to St. Cloud and the ceremony.  Jon is driving and I’m riding shotgun.   Deb is sitting in the backseat. Halfway there, too late to turn back, I realize I forgot my Parkinson’s medication, taken every four hours, at the Hotel.  It’s already been three hours since my last dose, and in addition to the stuttering, slurred speech that is a side effect of the Deep Brain Stimulator surgery, I start to feel the stiffening and rigidity that is my primary Parkinson’s symptom.  Two thoughts occur to me:  this is going to make sitting through the ceremony an uncomfortable experience, and what does Jon think seeing me move slowly and hearing my impaired speech.  This is only the second time he has seen me since the surgery, and I am sure that he measures the time in terms of how much the old man has gone downhill since the last time he’s seen me.  I sense his patience when, getting in the car, he waits silently for me as I struggle to strap on my seat belt before he heads out of the gas station.

This is his weekend, and he seems to truly enjoy playing tour guide for his Mother and me.   I enjoy his company and hospitality, and am genuinely proud of the man he has grown up to be.  At the same time, inside, my bitterness and anger at this God Damned disease rages like an out of control inferno.  Damn this disease for all it is going to take from me, and Damn it all to Hell for what it has already taken from me and my son.  Damn it for the respect it has taken from his eyes and the sorrow and pity it has replaced it with.

The ceremony takes place in the hockey stadium, and the graduating class is enormous.  Deb and I watch Jon take his diploma from our seats at the bottom of the upper deck, and as the ceremony goes on, and on, we quietly leave and wait outside where we told Jon we’d meet him afterwards, where I can suffer my discomfort in more private surroundings.  As we sit outside in the bright spring afternoon parking lot, I think of those nights rocking Jon to sleep, and I think of the Jon-star, and how Jon has undoubtedly long forgotten that corny story, and I wonder how long before he forgets there ever was a time when he believed he could rely upon his father to find him if he was lost.

The story the Enquirer sells, the story we tell ourselves, about someone’s “brave” and “courageous” battle against the devastating odds of terminal disease is, of course, almost complete bullshit.  The “battle” isn’t really a battle at all, it’s just not giving up, and that’s not heroic, it’s just not cowardice.  The “positive attitude” is also just a weak façade, a public display that could easily be seen through if we had the guts to look.  Behind it is fear and despair, emotions that are much more real than the positive attitude we all try to project.  It’s important that we recognize these for the lies they are, and not punish ourselves too much when we fail to live up to them, for the moments when our self-pity and self absorption overcome us.  After all, these moments are more real than the facade.

But then we are reminded that there are those close to us, whom we love and who love us, and the unique needs they have of us, and us of them.  They need to continue to find comfort and meaning with us, and it is for them and for us that we need to put some kind of face to our suffering.  It is hard, for example, to tell who needs the parent to be a hero more, the child or the parent.

As I sit here, it is 9:45, the night of May 31, 2010, the end of Memorial Day.  Tomorrow I go back to work after the long weekend.  I’ve been sitting here for a good part of the day writing this.  I started out with the hope of determining the real reason I’m writing, whether it’s a continuation of my adolescent dream of fame and fortune as a published writer, whether it’s to leave a record behind for my loved ones, or if it’s to provide help and insight to others similarly afflicted.   In the end, I’m still not sure which it is, or if it’s a combination of them all or none of the above.  Whatever the reason, and whatever the outcome, maybe it’s not so important why I write this all down.  Something keeps driving me to my desk, and maybe that’s all that needs to be understood.

(May 31, 2010)

See the Lights

If they’d listen to me, I’d tell them all to lighten up.  Up close, things are never as clear as they are far away.  The things we tangle ourselves into knots about are almost always not important, at least not as important as we convince ourselves they are.

What is important is the people we are thrown together with via genetics or random chance.  We are shadows and light, “stardust” as Joni Mitchell put it, and our time together is limited.  This is so painfully obvious, yet it isn’t real to us until we are separated.

A few months after I left work, I went out to lunch with a former co-worker.  Afterwards I decided to drop by the office and see what everybody was up to. Big mistake. Most of the desks I stopped by were empty, their occupants off to meetings, and the few who were at their desks were tied up in phone calls.  Of course they were, I’d already forgotten how crazy hectic work was.  I walked past a windowed meeting room and there in a meeting were a number of my former co-workers.  They motioned me in, I stopped and exchanged a couple minutes of small talk, but that was all, as they had important work to do, work that no longer included me.  I left the meeting room and then the building, and as I got in my car and pulled out of the parking lot, I realized for the first time that my departure was permanent.  It hurt.  I actually felt it in the pit of my stomach.  The work I had, for better or worse, thrown myself into for the previous thirteen years, had no place for me anymore.  I also began to understand that the relationships I’d formed and treasured with my co-workers were almost all framed by the shared experience of work, and that my departure had severed those connections.

There were several reasons why I left when I did, all having to do with my instance of Parkinson’s disease, and all valid.  There were the tremors that intensified with stress, the micrographia (illegibly small handwriting), the incoherent speech, the stiffness and rigidity of my wearing off periods when I could barely move, and the episodes of falling asleep, in my office usually in the late morning, and almost every evening while driving home.  Waking up behind the wheel and across the center line, in the glare of oncoming headlights, was a terrifying but all too frequent occurrence.  I remain convinced that it was the right time to leave.

Needing something to do, I decided to take a whack at a long put off dream, and started writing.  I threw myself into it, and now, two and a half years later, I’ve finished a first novel (still trying to get it published) and am about halfway through a second.  Although I’ve made a number of new friends in the writer’s group I joined, it’s still largely a solitary existence, especially compared to the high energy, high stress corporate world I was part of before.   I love writing and I think I’m getting better at it.  I approach it with all the passion and energy I can muster.  I thank the heavens that I have something I love so much, because if I didn’t, there’d be nothing to deflect the pain and loss of losing my job, my career, and the emptiness would be all consuming.

Work gives us a sense of purpose, a sense that we and what we do matter.  These things are often illusory, or at least exaggerated.  What is the most real are the relationships we form with our co-workers, dear friends or bitter enemies, accomplices or obstacles, the people we spend more of our waking time with than anyone. It’s only when these relationships are lost that we realize how precious and fragile they were.  I never imagined I’d lose them this quickly, or how much their loss hurts.

A long time ago, at a different job, I had a boss explain to me that working is like sticking your arm into a bucket of water.   Whey you leave, you pull your arm out.  The water ripples for a few seconds, but soon is smooth and calm, all evidence of you having ever been there vanished.  And that’s the way it has to be, he said, because there is too much at stake, too much is dependent upon the simple fact that time and life go on.

But memories endure.  I pull them out from time to time and watch them shine.

The Universe a Step at a Time

Today my wife and I drove down to O’Hare to pick up my daughter , who returned home after studying in Florence, Italy for six weeks.  She had the time of her life, and as a parent, it’s incredibly gratifying to have been able to give her this opportunity, as well as seeing what a wonderful and capable and beautiful person she has grown up to be.  As I write this, her and a large number of her friends are in my back yard in a surprise welcome home party in her honor; I can hear their laughter through my open window.

While she was in Europe, I had the good fortune to attend the Lee Silverman “Big” Physical therapy at United Health Center, under the watchful eye of my physical therapist, Jennifer Werwie.  Developed for people with Parkinson’s, it’s a great program that can be customized to fit the individual patient’s needs.  For me, that meant exercises to help with my balance and posture.  I’ve been doing the stretches and exercises Jennifer gave me every day, both in the therapy sessions and by myself at home, and, with the therapy complete now, I will do them every day for as long as I am able.  The goal is, by doing these exercises which incorporate and exaggerate every day activities, to increase my nuero-plasticity, or, as I understand it, to recalibrate my brain so as not to forget how to walk or stay upright.

So far, as long as I continue doing my exercises, the results have been impressive.    My wife has noticed improvements in my posture and gait, and the exercises truly energize me.  The other day, while picking up some tools in my barn, I fell, but now I know why – I didn’t give myself a broad enough base and let my top get too far over my bottom – both of which are addressed by exercises I learned in the therapy.

When you have Parkinson’s, there is a natural tendency to view the universe as finite and diminishing, and the future with fear and dread.  When I look in my daughter’s eyes, I see an amazing young woman who still sees a universe full of wonder and awe and potential, and through her eyes, I see that universe again, too.

What I hope to accomplish with the therapy then is that my daughter sees her father walking normally, and that she now and then forgets her dad has an incurable disease.  Instead of spending any time worrying about her old man she can focus all of her energies on living life well and not losing sight of the wonder and the awe.  Because as long as she can see it, so can I.  It’s only a step away.

Pitch Count

Next weekend I’ll be attending the annual Writer’s Institute conference in Madison.  I’m looking forward to going, to meeting new people and learning more about the craft and trade of being a writer.  It will also serve as the occasion to launch the first edition of the new annual literary journal, “The Midwest Prairie Review,” which is going to include a short story I submitted, “A Leg Up.”  I am looking forward to seeing the finished publication, and, of course, seeing my work in print.

The most highly anticipated part of the conference promises to be the live pitch sessions with literary agents.  I have signed up for sessions with two agents to try and get representation for my first novel, Ojibway Valley.  The sessions are eight minute one on ones where the author pitches his or her work.  It’s a rare opportunity to have face to face contact with the people whose job it is to wade through thousands of anonymous query letters.

I’m very proud of Ojibway Valley, but I’m also realistic.   I know the odds are stacked against me.  While I think it’s a good book, when I look at it now, I tend to only see the things that I could have done better, and I assume that’s what the agents will see.  Still, I’m preparing what I’ll say, and trying to summarize the book into short and concise statements that reflect what it’s about and why it’d sell enough copies for a big publishing house to take it in.

I’m nervous about these scheduled sessions.  I really want to go the traditional route, have an agent who hooks me up with an editor and finds a publishing house and gets the book out.  I have no illusions about it ever being a best seller or making millions of dollars off of it.  I’d be thrilled if it was just published and looked professional and if a handful or readers got a hold of it and found something worthwhile inside.    I suppose the self publish or e-publishing paths are options worth pursuing, and something I may look into eventually, but first I’d like to give the traditional route a try.

I’m nervous for a number of reasons, chief among them being that I hope to have my work validated and see my dream of having a published novel come true.  Adding to the pressure and the stress is my instance of Parkinson’s Disease, which, among other things, impacts my speech and my handwriting.    With only eight minutes to make my case, it’s going to be imperative that I communicate efficiently, that I am clear and concise, and I want to make a good impression.   Typically, the more stress I am under, the worse my speech is, and I stutter and stammer and slur my words.  So I have to decide, do I tell the agent up front about my condition, and waste valuable time discussing my condition, or do I just start my pitch, and risk sounding like a babbling moron?  Hopefully, stress won’t initiate the tremors it sometimes does, and I won’t be shaking or jerking about too much.

It’s awkward enough going to these conferences anyway, because one of the things Parkinson’s has taken from me is my handwriting.  I never had good handwriting, but now it is completely illegible.  If I don’t have my laptop with me (my phone has texting capabilities, but with my unsteady fingers, I do not) I can’t jot down a phone number or add an item to a grocery list.  This means while at a conference, I have to lug my laptop with me to take notes or engage in writing exercises.  It can become clumsy at times, and another thing I have to think about when I am in my pitch sessions – do I bring my laptop with me?  It seems rather impersonal in a one on one meeting to open up a computer and start typing.

Parkinson’s is the elephant on the table.  It’s the reason I’m home all day, the reason I left my job as a manager in I.T. two years ago.  It’s the reason I’m writing now – it’s how I fill my time, and as long as my fingers can work a keyboard and a mouse, it’s how I’ll spend my remaining time.  Writing’s been my attempt to make the best of a bad situation, to fill my time with purpose and meaning.  The thing is, I don’t know how much time I still have left.   I’ve read stories of other authors taking as long as twelve years to get their prize winning novels published – I don’t know if I can wait that long.  So it adds an element of desperation to my work.

I don’t have a bucket list.  I just don’t see the point.  I’m happy as long as I have my family and my writing.  When I started writing Ojibway Valley, I was just beginning to transition from memoir writing to fiction writing.  Now, I’m addicted to writing fiction.  I’m about 40% through my second novel, and everyday I’m learning more about how to create fictional characters and situations, the different ways  to tell a story.

I dream of having my work, particularly my novels, published some day.  I’ll do whatever I can to make that happen.  In the meantime, while I wait for someone to publish my first novel, I’ll finish my second novel.  When that’s done, I’ll start my third, and I’ll continue until, to paraphrase the National Rifle Association, they have to pry my keyboard from my stiff and rigid fingers.


Not Anymore

I used to be a fidgeter, but not anymore.  I used to toss and turn in bed at night, before and after falling asleep.  Now, when I go to bed, I quickly find a position I’m comfortable in, and stay that way until morning.  More than once, my wife says, she’s woken up in the middle of the night to find me so still she has to check that I’m still breathing.

This afternoon I visited our vacation cabin for the first time since last November.  Our cabin sits in the woods on a dead end dirt road that in the winter is only partially plowed, up to and not far after my driveway.  It’s always very quiet here, but never quieter than in late winter.  There is literally no traffic on the road. When I got here today, it was cold out, and there was about a foot of snow on the ground.  I had to park my car in the street and trudge through it to my front door.   I opened up the cabin and found everything was how I left it.  My deer hunting coat lay hanging on the same hook, the refrigerator remained unplugged with its doors propped open, blankets remained neatly folded on the beds.   Everything was in its place. I started a fire in the wood stove and unloaded the things I’d packed and waited for the cabin to warm up.

This evening, I went out for a bite to eat and picked up a couple of things for breakfast and lunch tomorrow.  When I came in out of the dark and cold, the fire was still burning in the stove, and the cabin was bright and warm and quiet.   I started reading, but soon an “off” cycle hit me hard.  “Off” cycles are when my Parkinson’s disease medications wear off, about every three and a half to four hours.  When they hit, I take my prescribed dosage of Carbidopa / Levodopa and wait for it to kick in.   Most of the time, the off periods aren’t too bad, it’s a discomfort that I’ve gotten used to.  About twice a day, though, usually after I’ve eaten a full meal, they’re pretty rough, as the rigidity or stiffness that is my most prominent motor symptom makes movement of any kind very difficult and extremely uncomfortable, and if I’ve eaten a lot, they’re accompanied by severe nausea and acid reflux.   I’ve learned to eat less at dinner time, for example, but sometimes it still hits me.  About all I can do when these bad off periods occur is take my pill and find a place to sit or lie down and ride it out.   Usually after an hour, longer during the really bad spells, I feel the pill kicking in and gradually start feeling better, and about an hour later, two to three hours after the off-period began, it’s over, and I’m good for about an hour and a half until the next off-period begins.

I was alone in my cabin when tonight’s bad spell hit.  I took my pill and lay down on the couch and waited for it to kick in.  As I laid there it occurred to me that I wasn’t moving, not a muscle, and I looked around the silent cabin and saw all the things that were in the same place I left them last November, all of them still and unmoving. I thought of myself, lying there among them, just as still, and I thought of how I often find myself in the morning, in the same position I fell asleep in several hours before, just like the things in the cabin that remained unmoved since last November.

I used to take comfort in the site of my cabin being unchanged from how I’d left it, but not anymore.

Now it terrifies me.