(This is a piece I wrote more than three years ago, after attending my oldest son’s college graduation)
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:
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)