My Poor Befuddled Ass

There are many things that I just don’t understand.

Several years ago, on a cold and rainy day in late February, I was driving through the small town of Mundelein, Illinois.  As I made my way down Main Street, stopped at a traffic light, I saw, out my windshield on the right side of the road, the statue of liberty, standing in the pouring rain, waving to me.

Well, I said to myself, I wasn’t expecting to see the statue of liberty this morning. I quickly went back over the events of the morning, and was able to determine that no alcohol had been consumed.  No controlled substances of any sort were coursing through my veins. I pinched myself and the resulting pain indicated that I was in fact awake and not dreaming.  I blinked my eyes hard, and when I reopened them the statue of liberty was still there, on the right side of my car, in the pouring rain, waving to me. It wasn’t a hallucination.

Finally, it occurred to me that this statue of liberty wasn’t very tall, well under six feet in fact.  I don’t care how high she held her torch, she wouldn’t make much of a beacon for anybody.  Then I realized it was a person standing in a statue of liberty costume, which, in hindsight, probably shouldn’t have taken so long to figure out.

liberty tax service

But here’s the part that I still haven’t figured out.  Why?  Why would anybody stand in the freezing rain in a statue of liberty costume, waving to the traffic that passed by?  It didn’t take me long to see the sign on the building behind lady liberty that said, “Liberty Tax Service.”

Since that day, I’ve noticed every year in whatever town I happen to be driving through in “tax season,” at least every town that has a Liberty Tax Service office, there’s some poor schmuck in a statue of liberty costume waving to the cars.

And every time I see it, I ask myself, why?  So far, I haven’t come up with a good answer, so it looks like I’m going to have to ask someone else.  Here’s what I’ve been able to determine so far:

  • The decision to advertise Liberty Tax Service with a live person standing in traffic while wearing a Statue of Liberty costume had to come down as a directive from corporate headquarters, because all branches seem to have not only their own statue of liberty costume but also their own poor schmuck.
  • For some reason, this has been determined to be effective marketing strategy, because every year the poor schmucks are trotted out.

This is what baffles me.  There had to be a meeting at the corporate office. Here’s the only scenario that I’ve come up with that makes any sense:

(The scene:  A corporate boardroom.  All of the functional vice presidents are present. The last one to arrive is Chet Campbell, VP of Marketing.  Unlike the impeccably dressed and groomed other V.P.s with their neat stacks of papers and portfolios, Campbell is disheveled and unshaven and empty handed.  His shirt is wrinkled and untucked.  He takes his seat and buries his head in his hands. The other V.P.s whisper to each other in scandalous tones:  it’s obvious that Campbell hung one on the night before.  Just then, the C.E.O., an impressive looking guy named Richard Richards, enters the room and takes his seat at the end of the table as a fearful silence overtakes the room.)

RICHARDS:  I’m going to cut to the chase and get right to the point. Things don’t look well. Our earnings are down and we’re getting clobbered by our competitors. With tax season rapidly approaching, the very survival of our company rests on a new and effective marketing campaign.  I’ve asked Campbell to give us his idea for the new campaign this morning. Campbell, the floor is yours.

(Campbell is still resting his head in his hands.  At first, he is unresponsive)

RICHARDS: (raising his voice) Campbell.   CAMPBELL!!

CAMPBELL: (waking up) Huh?  Yeah?

RICHARDS:  The new marketing plan!  Out with it!

CAMPBELL:  Huh?  Oh yeah, the new marketing campaign.  Yeah, well uh, the thing is …

ROCHARDS: Out with it! Let’s have it!

CAMPBEL:  Okay, okay, um, (obviously making things up as he goes), okay, um, what’s the name of our company again?

RIHCARDS:  Liberty Tax Services

CAMPBELL:  That’s right, I knew that.  And we’re what, we’re an American company, right?

RICHARDS:  (growing impatient) Yes, that’s right.

CAMPBELL:  So that means most of our tax customers are Americans, right?   (Richards nods) Well, what do most Americans think of when they hear the word, “liberty?”

RICHARDS:  The statue of liberty.

CAMPBELL:  The statue of liberty, ooh, that’s a good one.  I was thinking of puppies, but the Statue of Liberty is even better …

RICHARDS:  Campbell, do you even have a campaign?

CAMPBELL:  Yes, yes, of course I do.

RICHARDS:  Then out with it!

CAMPBEL:  Well, here’s my plan.  We take, uh, some poor schmuck – we should have at least one in every office – and we, uh, we buy him a statue of liberty costume and make him stand in traffic outside of the store.

RICHARDS:  That’s it?  He just stands there?

CMAPBELL:  No, he doesn’t just stand there in traffic!  That would be ridiculous!

RICHARDS:  So what else does he do?

CAMPBELL: He, uh, he waves.

RICHARDS:  He waves?

CAMPBELL:  Yes, he waves to the cars as they go by.

RICHARDS:  Then what?

CAMPBELL:  Then, he waves again.  Until the day is over, he stands there and waves.

RICHARDS:  That’s it?

CAMPBELL:  Yes, sir, that’s the new marketing campaign.

RICHARDS:  I’m speechless.  Anybody else want to comment?

JENKINS:  As the Vice President of human relations, do you mean to tell me that we’d be asking our employees to stand in traffic while wearing a Statue of Liberty costume?”

CAMPBELL:  Yes.  Why?

JENKINS:  Don’t you think there’s a safety concern?

CAMPBELL:  Well, it wouldn’t be just any employee. It’d be just the poor schmucks.

(A murmur of disbelief and laughter runs through the board room.  Finally, Richards calls the meeting back to order)

RICHARDS:  Okay, enough is enough.  Campbell, in all my years, I’ve never heard such a, a ….

CAMPBELL:  I’ll go clean out my …

RICHARDS:  I’ve never heard such a brilliant plan!!  It’s so simple!  It’s beautiful in its simplicity!  Jenkins, I want a listing of every poor schmuck working for us from every branch office.  Wilson, order us a statue of liberty costume for every store. And Campbell, effective immediately, you are here by promoted to my job!

CAMPBELL:  But what about you, sir?

RICHARDS:  I have no choice but to let myself go.


RICHARDS:  I’m firing me, because I didn’t come up with your brilliant plan. You are the one, the only one who can save this company from collapse.

(Then the scene shifts, to the inside of a car.  A man and wife are driving through town and talking …)

WIFE:  So who are we going to get to do our taxes this year?

HUSBAND:  I don’t know. With the capital gains, the inheritances we received, and the complications with our LLC, they’re going to be incredibly complicated.

WIFE:  So we’ll have to find someone who is very good, a very advanced and senior tax accountant.

HUSBAND:  Yes, it’ll have to be someone we can trust ex … wait, what’s that?

WIFE:  Why, it looks like the statue of liberty!   What is she doing?

HUSBAND:  She’s waving!

WIFE:  Yes, she’s waving to us!  Look, there’s a Liberty Tax Service office!

HUSBAND:  Well, problem solved!  I guess we know who’s doing our taxes this year …

HUSBAND AND WIFE TOGETHER: Liberty!  Liberty Tax Services, that’s who!

I’ve Been There, Too

I’ve been a die-hard Green Bay Packers fan for almost 50 years now, starting in 1967, which was the year of Bart Starr and the “Ice Bowl,’  Vince Lombardi’s last year as the Packers’  coach, and the year they accomplished what was never done before and hasn’t been done since – winning the third of three consecutive NFL championships.  I turned nine years old during that season, and became a lifetime fan, despite the fact it would be twenty nine years until their next championship.

Twenty nine years filled with mediocrity, incompetence and disappointment.  Then, in the 1990s, we were treated to the Mile Holmgren and Brett Favre years, years in which we won one Super Bowl but were contenders almost every season, with the most exciting player in football leading us.  Then Favre was gone and replaced by Aaron Rodgers, who unbelievably is actually better than Favre, and who, in the 2010 season, with Mike McCarthy as head coach, lead us to another Super Bowl win.

Through the years, there have been more disappointments than triumphs, and some historically bad losses.  There was the game early in the 1981 season, against the Atlanta Falcons, that the Packers went into the fourth quarter with a 17-0 lead before self destructing and losing, 31-17.  There was the 1997 Super Bowl, against an inferior Denver team with John Elway where the Packers couldn’t stop Terrell Davis and Holmgren abandoned the run in a frustrating 31-24 loss, there was the “4th and 26” playoff game against Philadelphia in 2003 when Donovan McNabb completed a 28 yard pass to Freddie Solomon on said down and yardage to put the game in overtime, which Favre promptly ended by lobbing up an interception to Brian Dawkins, and there was the 2007 NFC championship game at Lambeau, which again ended with Favre throwing a first possession interception in overtime that lifted the New York Giants instead of the favored Packers to the Super Bowl

But none of those compare to this year’s debacle, the incredible choke job the Packers executed to lose the NFC championship to the Seattle Seahawks.  There were about ten plays that the Packers inexplicably screwed up on, any one of which having been run properly would have ensured a Packer victory.  Each of these had an individual, either a player or a coach to point at.  But none was as glaring as the on-side kick.

By now, you’ve seen the play.   I don’t have to describe it.  There was just over two minutes left in the game.  All the Packers had to do was recover the kick and they’d win.  Game over. So it came down to a little used, third string tight end named Brandon Bostick, who had caught two passes for three yards ALL SEASON.  It was his moment, with the eyes of all the world on him, and in that moment, he tried to catch the kick, even though he had been instructed to block the Seahawk who ended up with the ball, so star receiver Jordy Nelson could do what he is one of the very best  at – catch the  ball.  But Bostick panicked in that moment, and leaped up to catch the ball, only for it to deflect off of his helmet into the Seahawk’s hands.   Put in simple terms – he screwed up.

After the play, after Bostick came back to the sideline, television cameras showed the Packers’ special teams coach in Bostick’s face, screaming at him.  The Packers went on to blunder their way through the rest of regulation and overtime, losing the game and the chance to play in another Super Bowl.

After the game, Bostick, who probably didn’t talk to a single reporter all season, found himself in the eye, the center, of the press hurricane.  He patiently listened to the questions and straight forwardly answered them, pulling no punches, accepting complete responsibility for the screw up, acknowledging the teammates, the coaching staff, and all the fans he’d let down for simply not doing his job.   He spoke softly, and the hurt in his eyes revealed a bruised soul.

With age comes maturity.  In my younger days, I’d brood about a painful packer loss for days.  Now I still get disappointed, but it’s rare that I yell at the television.  I find that, shortly after the game is over, I’m able to move on, and find some perspective.  The sun will still rise in the morning, and the world will continue spinning, and whatever other cliches you can find for life going on.  It’s only a game. This is easy for me to recognize.  But for Bostick, it’s made hazier by the fact that this is his job, this is what he does for a living.  Not only does he have family and fans, he has his teammates, his co-workers, depending on him to do his job.  And he’s let them all down.

Looking at Bostick as he answered the reporters’ questions, I recognized the look in his eyes.  It was the look of eyes that know sleep won’t come easy, that feel the weight of anxiety, that question the daily assumptions one makes about one’s self.  I recognized in his eyes the same story that I’ve lived, the same pressures and self doubts and anxieties I’ve felt in times that I screwed up.

It’s hard enough to face friends, co-workers and family and admit that you’ve failed them.  The most difficult thing is, in the dark of a sleepless night, to stare down your own fears and anxieties and self perceptions and admit failure to yourself.  It’s the unavoidable truth that keeps you awake and exposes the lies and illusions we tell ourselves that most nights go unchallenged.  We make mistakes every day, but normally they are unimportant and undetected, and by the time we close our eyes in sleep at night they are long forgotten, as is the fact that we’re all human and all capable of making that critical mistake at that critical time.

Then comes the day when we make that critical mistake at the critical time, when our fallibility is exposed.  How do we get through times like these?  How do we reconstruct ourselves, our self-esteem, out of the shattered pieces that lie scattered before us?  How do we ever find “normal” again?

The answer is through the grace and understanding of the very people we’ve let down – our friends, family, co -workers.  We gain strength through their caring and understanding.    The same things that make failing them so disappointing are the things we gain strength from.  It’s the bonds of love and respect and lived experience.  It’s the shared and pulsating heart of humanity.

It’s not forgiveness that Brandon Bostick needs right now, it’s recognition.  If we look into his sad and haunted eyes, we’ll recognize our own reflection, and we’ll understand.

Channel Z

Normally I’m pretty good about observing important anniversaries (never forget a birthday or my wedding anniversary) but yesterday one almost slipped by me.   Which is surprising, since I literally can’t get it out of my head.

Yesterday, at about 10:00 or so in the morning, was exactly five years since I had electrodes installed in my head as the first part of my Deep Brain Stimulator (DBS) procedure.  I woke up in an operating room  in Northwest Memorial Hospital in Chicago with my neurosurgeon, the amazing Dr. R., literally in my head, listening to the sound of my brainwaves amplified on what looked like a pretty impressive sound system that played nothing but static.  I had to be awake as Dr. R.’s team talked to me and bent my elbow and listened to the sounds of the static to make sure they were accessing the correct parts of my brain.  Every now and then, Dr. R would turn a knob or something and the static would get louder and my leg would start to shake.  I’ve chronicled the experience in greater detail previously here:

This was me after the procedure:

dbs 5 years

When they were complete,  Dr. R. visited my wife in the waiting room and handed her this device,


saying, “here’s the remote control to your husband.”

It was two weeks later that Dr. R. completed part two, the second  surgery, while I was asleep, when he installed a neuro-transmitter in my chest and ran the wires from it up my neck and to the electrodes installed in part one.   It’d be about a month later before my new Movement Disorders Specialist, Dr. Z, configured and turned on the transmitter, programming it to send impulses to my brain to trick it into thinking it’s getting the dopamine that Parkinson’s has taken away.  Since then Dr. Z has taken excellent care of me, tweaking and adjusting the settings of the transmitter according to what I am experiencing at the time.

About a year ago, Dr. R. was back, to perform a simple, out-patient procedure to replace my transmitter’s old battery with the new one.  Once again, I was awake and lucid as Dr. R and his team went about their business, answering Dr. R’s trivia questions as he played classic rock on the sound system, correctly identifying Ringo Starr as the drummer on Tom Petty’s “I Won’t Back Down.”  They must have had me on some pretty good happy anesthetic, because I remember enthusiastically singing along to that and other songs, which the two other people in the world who have ever heard me sing know I only do when under the influence of extreme amounts of alcohol , and that these two people carry with them deep emotional and psychological scars from the experience.  So my apologies to those in the operating room who had to suffer so – may your therapy be swift and effective.

Five years later I know what DBS has and hasn’t done for me.  It was never intended to be a cure for Parkinson’s, and it hasn’t alleviated the need for medications.  I still wear on and off, just less frequently and to a lesser degree than before.  There have been side effects, such as impaired speech and handwriting and balance; these are adjustable by changing the settings on my “remote control” device.  Essentially, if I turn the voltage down, the side effects are minimized while the wearing off periods increase in frequency and severity, turn the voltage up, and the peaks and valleys of the meds cycle is largely flattened out, while the side effects worsen.  I’ve learned how to balance these, and there should be sufficient voltage capacity and tweaking that Dr. Z can do to effectively manage these symptoms for a long time, even as the disease progresses.

Last October, I participated in a three day clinical study designed for PD patients with DBS installed.  For parts of the study, I had to go varying times with the transmitter turned off, and for most of these times, my PD symptoms were unbearable.  It served as a sobering reminder of what life would be like without having had this wonderful chunk of hardware installed in me.


“Gentlemen, we can rebuild him – we have the technology.”  Aside from the occasional involuntary hop whenever the toaster pops, or the overwhelming urge to walk backwards when I hear the beeps from nearby construction sites, my DBS experience has been overwhelmingly positive.  I want to thank the incredible team of doctors and specialists and nurses at Northwest Memorial, in particular Dr. Z. and Dr. R., for the care and attention they have devoted to me.  I am lucky and blessed that my experience with this rotten disease is navigated by such brilliant and good people.




(I wrote this over the span of a couple of dark nights about three and a half years ago)

When I was a kid, as I lay in the hushed dark before sleep, I’d wait for the comforting sound of the furnace blowing warm air through floor vents, or for the familiar rumbling of a train in the distance. If I was lucky and tired enough, one of these sounds would come to me, and I’d fall asleep before they reached their conclusion.  If not, they’d be replaced by the murmuring voices of the nocturnal people who came to life in the silence of the night. From my bed I could hear them, unseen and distant, from under the floorboards and from inside the impenetrable blackness. I could never make out what they were saying, but I knew it was something dark and mysterious.

I didn’t like the voices. I’d pull the blankets up over my head and shut my eyes so I wouldn’t see any of them. As I listened, I’d convince myself that if I were to pull back the covers and open my eyes, they’d be there, standing motionless in the dark in my room, next to my bed, waiting for me to see them, and then they’d know, they’d know that I hear them, and neither they nor I could pretend the other didn’t exist anymore.

The voices would start out as a barely audible whisper, coming from the other end of the house. Uninterrupted by the sound of the furnace or a distant train, they’d gradually get stronger, from a soft murmur to a dull drone, steadily getting closer and louder, until they were in my room, above and around me. What syllables I could make out sounded like a strange and ancient foreign language, like they were speaking in tongues.

Eventually I’d fall asleep and the voices would be forgotten until the next night. This went on for a few years until I outgrew them and learned to put a chain on my imagination, until I learned to distinguish between the real and the unreal.

                                                            . . .

September 1981: Driving south on I-94 in my 1978 Chevy Nova, already rusting out from the big dent in the rear passenger side panel, with the setting sun painting the western sky shades of red and pink, I pass County Line road, highway KR; then highway E, before taking the off-ramp on Highway 142 and heading east toward Kenosha. I make my way to and then through the intersection with Green Bay Road, through the lights on 39th and 30th Avenue, until the red light forces me to stop and wait for the green left turn signal on the intersection with 22nd Avenue.  But I can’t wait; I haven’t been able to wait for over the past hour, from the time the last delivery truck finally pulled into the Open Kitchens loading dock off of Highway 20 in Racine. I couldn’t wait for that stupid truck to finally get in, and I couldn’t wait to finish unloading it, and I can’t wait now, as the left turn green arrow finally comes on. I make my turn, and then, as I turn left on 43rd street, the clock on the dashboard and the vanishing pink rays of twilight in the west and the headlights of the oncoming traffic and the streetlights that came on at some point between 39th and 22nd avenue all tell me it is about 7:00, and that September is nearly over.

We’ve been married now for about a month and a half, and she is waiting for me, like she is every night, and when I finish climbing the back stairs to our apartment and open the door, she’ll be there, with that indestructible smile and her open arms, and we’ll embrace. I feel a smile of my own form on my face. I am only 22 years old, but as my heart pounds out the exhilarating anticipation of coming home to her, I wonder if I can really be this deliriously happy, and I am aware of how ridiculously innocent and corny our love is, of how completely lost in her I have become, and I don’t care, because no matter how hard the cynic in me tries to point out how whipped I have become, I know it is real, more real than anything I’ve ever felt before, more real than the darkness, the loneliness,  the hunger, and the aching ever were.

. . .

March 18, 2011: It’s been a crazy day, on the phone with company lawyers and retrieving data for hours, making sure the test and quality environments are nailed down in time for UAT to begin on Monday, and that we have a strategy for implementing the vendor patches for the IRT application. At about 3:30, suddenly everything falls into place, all the fires are extinguished, and I take a breath for the first time all day. I clear my mind and read through those e-mails I haven’t had a chance to yet, and I feel myself relaxing. It is near the end of the day, but more than that, it is Friday.

Next thing I know, it’s a quarter past five.  I’m feeling pretty good, and I decide, with the office almost empty now, that it’s a good time to pack up some of my things. I go about gathering the old mementos, books, and knick knacks I’ve accumulated over the past almost 13 years. I go through old files and photographs. I don’t feel a lot of emotion – no sadness, no loss, no pain – rather I feel the warm and pleasant tug of nostalgia. I make a couple of trips out to my car, and I tell myself, I’m getting down to it, in a few days I won’t be seeing any of this anymore.   I won’t be walking up this stairwell to the back entrance, I won’t see the labyrinth of first floor cubicles, I won’t see the late afternoon sunlight on the parking lot and the pond. I tell myself this is all ending, I should be feeling stronger emotions, but I don’t. I can’t work myself into an emotional tizzy no matter how hard I try. Even though I have only four working days left, and even though this is the last Friday, somehow it still doesn’t seem real.

. . .-

August 1, 2011:  I take inventory of my physical limitations. My handwriting is no longer legible. My speech has deteriorated to the point that unless I am reading from a script and intensely concentrating, people have difficulty understanding me. When I am stressed or tired, tremors in my right hand and arm frequently occur, making it temporarily impossible to type on my keyboard or navigate a mouse. My meds are wearing off now about every four hours, and for about an hour, or about a quarter of the time, I suffer from the same stiffness and rigidity that occupied about half of my time before my DBS surgery.  I sleep on an average of four to six hours a night, still better than before the DBS but not the seven hours I was consistently getting a year ago.  I am off of work now, and take about an hour’s nap every afternoon.  I often stay up late, and do most of my writing at night, but I am always up before my wife leaves for work in the morning.

What the future holds, despite my constant speculation and conjecture, is beyond my ability to fully grasp.  I appreciate this, because I know that eventually it is going to get real bad.  When I try to imagine what it will be like, I try to imagine myself trapped inside a marble statue, unable to move or speak, and I can never really get myself there.  When my meds wear off and my living rigor mortis starts to set in is when I come closest to getting it, but even that is always temporary, and I can’t wrap my head around what it will be like when it becomes permanent, when the off periods finally overtake and eliminate the on periods, and what it will be like when the good days are all spent and gone.

I’ve been aware, maybe too aware, of the limited number of good days still left, and I’ve made many pledges and promises about how I’d spend them. I’ve tried my best to honor these pledges, but old habits are hard to break, especially when the old habit is life itself.  Life remains about 80% routine and tedium, the same routine and tedium that it’s always been.  It’s true that there is beauty and wonder in that tedium, and it’s true I have been able to see that more frequently since my diagnosis, but the nature of tedium is such that it just occurs, and that’s how it has to be, because it’s the tedium that gets us from day to day, and if we were to always stop and savor and celebrate the miracles in it all, well, we’d never get a damn thing done.

Now I am just a few months shy of my 53rd birthday, and it’s been over four months since I stopped working. Tonight I’m thinking about those invisible nighttime voices I heard when I was a kid. I write them off as the product of a child’s overactive imagination.

But if those voices weren’t real, I ask myself, what else have I imagined? What is real?  Did I really have a career as an I.T. Manager? Were all of those projects and deadlines and all that work and stress and all the triumphs and failures real? Or did I imagine it all? My wife is upstairs sleeping. Considering the mathematics of infinite time and space, did I really meet and love and marry my perfect soul mate? And she loved me, too? This is all getting pretty far fetched. The odds are incalculable.

Maybe Parkinson’s is the only thing that is real. Maybe in fact the thing I can’t imagine, the eventual imprisonment of my mind and soul in the statue my body will become, has already happened, and maybe everything I’ve experienced has occurred within my imagination. Maybe those voices I heard when I was a kid were the last echoes of the real, outside world, and maybe everything else, all the pain and suffering, all the love and beauty, the incredible and the trivial, has taken place inside my head, a rationalized universe of my own creation to get me through the nightmare that is reality. This would explain the combination of the unlikely and unreal that has been my life so far.

Maybe beyond the horizons of this world, beyond the walls of infinity, a catatonic middle aged man sits alone in a wheelchair in the dusty corner of an institution for the insane and demented. Doctors and nurses shine bright lights in his eye, and see no activity, no hint of recognition. But a flashlight can’t illuminate the universe, or the infinity that lies behind and beyond those eyes.

In the end I’ll have no choice but to let Parkinson’s take me wherever it will take me. As it progresses, as I deteriorate, all I am and all I know will fade away, and I will be taken beyond – beyond the physical, beyond the emotional, beyond the boundaries of sanity and imagination, beyond death.

And when I am taken away from my friends, my family, and especially my wife, I will be taken beyond this Heaven, real or imagined, that I have been blessed to spend all my days in.