Are You Regular?

This is a bonus blog.  Today is a special day, it has already been a day of hard work and progress, and when I have concluded this note and uploaded it, Lizy and I will journey down a road of memories.  Do you remember a certain road?  Perhaps the road Evan wrote about? It goes like this:

Life is like a Road

Life is like a road,
The road is often not straight,
or clear,
and sometimes the road splits,
and we must choose what direction to go.

Sometimes we can walk this road with friends,
other times we must walk alone.

But when you get to the end of the road,
and all is said and done,
nothing really matters anymore,
except for the journey,
and the love you've shared and received during it,
and the fact that this love will stand the test of time,
and go on forever.

-Evan Coleman  July 30, 2012

19 days later, Evan’s road came to an end for this world.  54 days later his life was celebrated in the carnival-like atmosphere of a mini music festival of Raucus Rock and Roll and feasting on chicken wings and copious amounts of fluids intended to take the edge of the ghost pepper wings.  It was one of the most intense nights of our lives as people we had never met, people with some serious talent, people whose only intent was to try and help us played until the police came to ask if they could be a little quieter as the neighbors weren’t into Pink Floyd to the same level of intensity as some of the musicians.  These people of anonymity are a group of some 50+ musicians from the Triangle Area of North Carolina, their name – The Regulars (http://www.regularscary.com/).

2 days later we received a monetary gift from The Regulars, between sales, auctions and donations we were gifted the final monies that was the final stroke in wiping out Evan’s medical debt, and gave us the leeway to return to society as we were able, not based on a 3 day bereavement leave that is common.  By all words, they were a God send. With these men and women we walk our road with friends.

If friends don’t let friends drive drunk, then neither do they let them walk alone nor toward an empty abyss without some measure of common struggle.  The Regulars all play in other music groups, but gather together once a quarter to join forces to help someone.  These people are not lucky in their circumstance, nor are they lucky to have friends like The Regulars, they are people in need who do not see themselves as worthy of other people’s pity but would rather just have a commonality of knowing that they are not struggling alone, that their fight is a worthy one. 

For us we knew that The Regulars were friends for life that we would support them in the causes they brought forth because the causes are worthy, because the musicians hold an intense love for their music and the community in which they live, and they always choose a good place to eat.  And that Monday evening in late September we heard that they were finalizing the next worthy event for December.   Having been on the receiving end of this gift, we know that the cautious approach to the family to be supported is done with deft and caring, sensitivity and compassion, and it often takes a little time. 

So the next concert for The Regulars is tonight. The beneficiaries of their efforts are Michelle Morrell and The Christmas Store.  The Christmas Store is a classic seasonal organization geared toward gathering new unused toys to be distributed to families with limited resources so that parents are not left with deciding if kids should be fed instead of celebrating Christmas.  Michelle is a different story, and is the more difficult to share due to her circumstances.

First let me try and share with you a little about Michelle.  She is an awesome person.  Okay too simple.  She is an amazing human being.  No, no too superlative.  Okay, she is a wife, mother of two and a high school teacher – there you have it, she could take out Superman with a simple Kleenex and a dag of lip spittle.  But she is not just all that.  It is the inner juice that flows in a person that exudes the kind of love, passion, and talent that Michelle possesses and has shared with all who have touched her life.  It is this ‘heart’ that has her loved and thought of so highly by parents of students and past students, it is the ability to relate to students and they to her that on her darkest days her wish is to get back to her ‘kids’.

And she has some pretty dark days.  3 weeks before Evan wrote about Life, Roads, Journeys and Love, this is what Michelle wrote,

It's been a bumpy road so far.  I was diagnosed late April with metaplastic breast cancer.  I had a masectomy shortly after (May 11).  Then gave birth to my daughter Kara on May 29, she was 4 weeks early.  She weighed 6 lbs. at 36 weeks and is doing great.  She eats like a champ and is gaining weight quickly.  I then had a PET scan which showed several spots on my bones.  Next I had a bone biopsy, which was positive for cancer cells.  On June 29 I had my first set of treatments...a bone treatment as well has hormone therapy.  I had some side effects like bone/joint pain as well as fever/chills.  Luckily it has gone away for now.  Now I'm just tired from having a newborn!  :)

As you can tell this story is going to get hard to bear, but she is living what you are reading and the living is often not one mass of falling bricks, but just the will to take the next step, to purposely plan for an uncertain future and to find ways to keep food on the table and love in the home as you struggle with a medical system that is (as has been written here) often less than sympathetic to the circumstance of those in treatment, and less so for those in treatment with decent insurance.

Michelle’s cancer has not abated and continued a progression beyond the ability of any ‘normal’ course of therapy.  Two weeks after The Regulars show for Evan, Michelle was admitted to a double blind study of a new chemotherapy process, and she finds herself in a battle between succumbing to the cancer and surviving the treatments.  Each successful treatment so debilitates her ability to fight off common infections that she is susceptible to uncontrollable fevers and suffers from the need to maintain a sense of self-esteem in the light of side-effects that many of you are likely familiar with hearing about of seeing for yourself.  All this while maintaining a loving home for two beautiful daughters and a loving and deeply caring husband who would move heaven and earth to bring any measure of comfort or relief to his devoted wife and champion of his heart.

But tonight she is the focus of The Regulars.  A fellow teacher, Ryan, is an amazing guitar player, and if her weren’t teaching HS science should be in a studio in Nashville working his slide guitar for the music industry’s best and brightest.  He brought the situation to the band, and how could they do anything but pick this ball up and run with it.  Simple Kindness + Killer Live Music Events is their motto, their desire is to Give Until it hurts.

Michelle started a donation website for herself, not wanting to leave husband and children holding the bag of debt at the end of this part of her journey.  Whether medically successful or not, she will be in no shape to tackle the anticipated shortfall of $13,000, and given the challenges of self-promoted self-serving charity, she has only raised 10% of her goal. 

What am I calling on you to do?  How can you have a positive impact on a family in need during the season of giving? Simple, make a donation to the Michelle Morrell Cancer Fund.  The donation will not be tax deductible, it will neither save her life nor cure the financial wound cancer has caused to her family; but it will leave you knowing that when you saw someone in need you did not turn a blind eye.  This is not an appeal for $12,000 or $5,000; but could you see your way to committing $5 and 2 minutes of your time?  Could you share this story with others?

Would you give your mom a hand if she needed it?  If you saw the mother of 2 young children struggling to get her groceries into her car, would you help? If your favorite High School teacher needed a letter of recommendation of a former student, would you write?  Michelle is each of these people and represents an opportunity for you to make a difference in 4 people’s lives this year.  So I call on you to not live this season as Luther and Nora Krank nor Ebenezer Scrooge; but dedicate yourself to being just a regular Joe or Jill.  Reach out a helping hand with The Regulars, visit Michelle’s website http://www.youcaring.com/medical-fundraiser/michellemorrellcancerfund/24118

And become one of The Regulars by seeing a need and not turning a blind eye.

Fallout

Fall Out

I never followed leaders
I got no machine
An' I paid my dues all along
Always says your freakin' 
When I mess with other people 
'Cause I knew that I was really alone

Fall out, fall out with all the leaders and guys

I saw my education
It was my indoctrination
Just to be another parking machine
Always says your freakin' 
When I mess with other people 
'Cause I knew that I was not very clean

Fall out, fall out with all the leaders and guys

-Stewart Copeland, 1977

Gun shy is no way to live one’s life if one is to report on one’s observations in an OpEd format.  And that is what happened to me over the past 48 hours.  A person of interest that I had made some observations of in a previous posting demanded a meeting to discuss what I had written. They did not grasp that what had been written was a tool of my observations not an accusation of their actions, omissions or personal failings.  While my opinions will be filled with critical elements, this writing is a tool of emotional expression, a methodology and process of healing.  To believe that this page will change the world or is a call for change in anyone but me is folly and hubris worthy of Icarus. 

If you as the reader gain some insight into your condition as a human being through my eyes, then I have written well.  If the writing hits close to home, it is not a demand for your change or a condemnation of your failings as a human being. Nor is it a call for you to demand a personal meeting with me.  I am not God, nor can I claim to be a called and ordained member of the Pastorate.  Granting absolution of others is above my pay grade.  The best I can do is to forgive someone else especially when I have a hard enough time forgiving myself when I screw up.  So what I do is recount the observation and in that manner relieve myself of the burden of carrying around the anger, bitterness and extreme dislike of certain people and events.

It is neither my calling nor duty, nor am I qualified for judging anyone else given awareness of my own shortcomings.  But for my own health and welfare I must put pen to paper, or fingers to keyboard, or mind to work so that the troubles I see and feel do not get bottled inside my head.  That happened over the past 48 hours as I waited for and lived through the demand of another human to meet with me; and during that time I have performed as a less than stellar human being.  Only the oasis of the training pitch, the hijinks of teenagers and the momentary satisfaction in the feeling of a well struck soccer ball gave me the break from the self-destructive cycle brought about by feeling obliged to control my thoughts because another person didn’t like them.

Like a spoiled three year old, I hold onto my thoughts, ideas, emotions and opinions like the well-worn and loved Pooh Bear of my daughter’s childhood.  This stuffed creature of love, originally yellow but now more the color of new born baby poo from all the love/dirt it has been carried or dragged through, is the truest companion of her childhood.  Pooh only has one ear as the other was bitten off in a fit of love by the family dog of her childhood.  Like the song, he is stuffed with fluff, his seams are splitting, and he will never be allowed to leave given his loyalty through thick and thin.  This is how sensitive I am as a person.

I cannot tell anyone why I have been as successful as a soccer coach as I have been. I no more know the answer to that than I can tell you why my wife continues to love me even though she knows all my flaws, failings and dirt in the cracks of my very soul.  And yet the essence of that part of who I am is the most prevalent face I chose to show the world.  As Evan struggled through his battle I became more available to share the inner workings of a man and a father dealing with the unimaginable.  And the world saw inside my soul and my heart.  Like the naked world, the inner workings of the human heart have places of beauty and love, but just as there are many places filled with darkness and shadows of fear, anger, doubt and sadness. 

So I met with the disgruntled/confused reader, and listened to their demand for an explanation of why I had written what I had written.  I explained that their perception was their reality that the purpose of my writing was to share the inner workings of the heart of a less than perfect person.  I heard demands for clarification and felt defensiveness.  I heard justifications, explanations and rationalizations that did not jibe with the information garnered from my own inquiries that led to my original observations.  And I left a 2 hour meeting exhausted and overcome with self-doubt, angst and increasing distrust of those seeking to operate using the bible not as a tool for self-reflection but as a weapon wielded like a claymore in the hands of a hobbit.

For the record, if I have a problem with you, please be forewarned that I will be direct, blunt and will wield a battle axe of righteousness with such swift and strength as to behead your soul where it stands before you have a chance to raise a hand in defense.  Your body will have to reassemble the pieces of your inmost being to continue forward.  For confirmation of the vitriol of my verbal attacks, please feel free to consult with former sparring partners (brothers and parents) or victims (wife, daughter, father-in-law, players, league commissioners, and former employers among others)  If I need to return to the fight, I will ascribe to Matthew 18, but do not fool yourself into believing that I will lead with that thrust as a feint to the inevitable blows I will rain down on you.

Please also recognize that any personal allusions to deceit or lying by implications that these writings are in violation or perceived violation of the 8^th commandment (Thou shalt not lie) is a failure of your perception and a blame shifting tactic of avoidance for the conclusions of your own self conviction.  There is a wonderful song by a Harvard satirist named Tom Lehrer entitled “The Irish Ballad” on the album “You can’t be satirical without being offensive to someone”. In this ditty he details the murderous rampage of a young Irish maid who upon getting caught she confesses all to the police because she lying she knew was a sin.

Suffice it to say that I have a new found appreciation of JD Salinger, the recluse writer of “Catcher in the Rye” who upon completion of his novel went into a life of a recluse refusing interactions with anyone seeking an understanding of him or background information on his writing.  He instead limited himself to those he deemed worthy of respecting him for who he presented himself, not as a façade that needed further discovery behind the curtain.

My mind mirrors my world.  It is a minefield, and those who think they are worthy of stumbling around in either are likely to end up hurting themselves and me, because I am left to pick up the pieces and fill out the paperwork.  The sides of my personality and person I wish to share with the world can be found in these writings, in my home & Evan’s garden and on the soccer pitches where I coach.  If you wish to interact at some level with my thoughts, opinions or observations please do so in the arena in which you find them.  Don’t ask for meetings to discuss what I have read, have the courage to share your concerns in the open.  I find that the daylight is a refreshing place to air ideas, receive feedback and seek correction of my slanted perspective.  If you take offense to those positions or the venue, then voice them in the same place.

Take courage, have heart, you will not be abandoned but you might find release and revelation in a similar manner.  But if you have a problem with me and seek to change the venue, I am no longer willing to accede.  In the tumult and angst that the foreboding of face to face confrontation I chose public places so that I will be forced to maintain control, the seething in my heart and brain at this time threaten to boil over into a verbal conflagration of biblical proportions that will embarrass both of us, the gathering crowd of onlookers and likely involve the police.

The buildup to yesterday’s meeting had the following impacts on my life and the lives of those I need most desperately, my family:  I could not sleep, I woke up late causing my daughter to get to school late, I could not write coherently, and I was less than available to my wife.  All of this trouble caused because a person demanded a meeting to confirm that I wasn’t lying or being deceptive to the world about them because their perspective is screwed to a different compass than mine.

After two hours it was determined that perceptions and the accompanying problems and circumstances are individually oriented and that we must each take ownership of our own issues before we assume ill of others.  And matters of Truth/Fact will be seen differently by different people, not unlike eyewitness accounts the little truths of personal perspective if held firmly are not points of contention or conflict but should be items that we will agree to disagree upon.

Now that hunk of bovine scatology has been lifted from my heart and head, perhaps I can get back to making observations about the world rather than my own life  Evan’s lesson for the day: share the truth at all times but do so in a manner and circumstance causing the least casualties and the maximum effect. Or share the truth in love.  Corollary: Sometimes the truth hurts.  Evan’s advice for the day: Lick your wounds and get on with life, because it’s getting on fine whether you participate or not. 

Next up a little bit of a snoozer the good and the bad of generic medicines by/and through a simple look at how medicines are created and interact in the body.  

Do You Live Today?

I hold it true, whate'er befall;
I feel it, when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.

-       Alfred Lord Tennyson

o    In Memoriam:27, 1850

Life is scary.  Life is fragile. Life is precious. Life is dangerous.  But for all these statements, the overarching conclusion must be: Life is to be lived.  And to actively live life is to entertain risks.  We risk our hearts, our prestige, our stature, and our souls; and yet we are the beneficiaries of a constant reward system.  How is this true you may ask?

To take a stand whether as a bell weather or champion or as a meek member of the flock or rank and file our very existence is a stand for life.  When we actively live it we are actively risking some measure of understanding about who we see when we look in the mirror.  What we cannot see readily is that we do not exist in a zero sum game.  All wisdom emanates from experience, and the greatest growth usually occurs from those times we have risked and ‘lost’.  So if you are successful, you will benefit directly from the success but have not won everything because you cannot fathom the wisdom gained by the person who was not as successful.

Should we then aim to win at all costs just to be successful? Or aim for something different and search for the wisdom borne of failures?  My personal observation is to put forth one’s best effort in the pursuit of success.  There will be plenty of opportunities along the way to that goal for there to have been none too few failures to enhance the wisdom factor of any attempt at success.

And there in perhaps lies the generational gap of our times; the pursuit of happiness is a journey fraught with hazards.  Happiness or success is not guaranteed; what is guaranteed is that you will be a better person for having taken the walk rather than being Star Trek style to the finish line.  I come across this on a daily basis as I coach soccer.

Coaching any person whether in life or in a sport is about living the journey as the ongoing existence in one’s ‘happy place’ There are highs of winning games, successful interactions or scoring goals, but the happiest most successful place is that location where the player or student grasps that the success is a byproduct of embracing the methods of hard work, perseverance and insight.

Part of this philosophy is an understanding of learning that is espoused in the medical community when class room knowledge must be wedded to practical application.  Sometimes this wedding is a serene and quiet affair, sometimes with pomp and circumstance, but often times it is s rushed and ragged shotgun wedding of circumstance, need and not enough time.  It is at those times that the teaching method of: See it, Learn it, Do it then Teach it is at its most valued. 

How can we ever truly appreciate and fully grasp what we know and hold dear; until we have taught someone else what we know?

Sports can be seen as analogous to living life without the long term relational consequences.  If you get in a verbal altercation with an opponent, it is unlikely that it will lead to a divorce.  Or if you engage in a series of partnerships on the field of play, it is unlikely that this will lead to 2.5 kids and a house in the country with a white picket fence.  But moment to moment lapses of judgment or skill will result in setbacks, some larger than others.  Those setbacks can lead to losses felt by other members of your team, and the drive to give better effort so that you don’t let your teammates down is critical to a sense of self-worth.  

And while the loss of a game stings and feels like it will last a lifetime, short of being Bill Buckner, few people will remember an individual gaff beyond the game it occurred in.  The hope of all coaches at moments of loss is that the lesson from the experience sinks in.  That it might come from internal awareness is desired and most long lasting.  There is a scene in the movie Invictus about the post-apartheid South African Rugby Team where the captain of the Sprinboks played by Matt Damon hands out bad beer to his teammates after a disgraceful performance on the field.  He demands they all take a taste of the beer that they be reminded of what failure tastes like, and demands that they never taste it again.

But to have even stepped on the field of play, to have the courage to engage your fellow human beings in any activity is based upon two essential elements of life: courage and confidence.  Confidence without courage is like living life as a paper tiger; one stiff breeze from the wrong direction and you are blown away.  Courage without confidence leads to self-imposed solitude.  The missing ingredient to this recipe for moving forward is love; the act of selflessly giving by one person to another.  It can come from parent, coach, friend, sibling or lover; but it’s origin is always divine.  Love is an act of the will, the actions that embody doing for another without hope of self-serving benefit.

So now I paraphrase and mangle Lord Tennyson’s work some 160 years after the writing of his famous line:

I hold it true, whatever happens;
I feel it in my heart, when I sorrow most;
It is better to have lived, lost and been wiser for it
Than never to have lived at all.

So whether you Livestrong, or liveweak; don’t forget to live and do not fear losing as much as you should fear not loving the life you live.

Write and Be Free

“If you want to change the world, pick up your pen and write.” 
― Martin Luther

I am fairly confident that I am not going to change the world, but I definitely change my world and my perspective when I write. Perspective is a brilliant tool of interpretation and reality that must be qualified with an open mind or result in the drowning of the visionary in their own idealism.  Please see the hard line tones of the far left and far right of US politics, having gained the reins of power in very tenuous perception of majority = mandate.

Similarly the reins of power held by the Papacy 500 years ago was ripe for the internal queries of naked human power and greed by those willing to give voice to the observed ills.  Fast forward 270 years and the power of the vocal few incites a revolution that fundamentally altered the way the world sees Democracy and just 95 years ago the power of the people swung so far as to entertain an 80 year period of Communism.

Why does this matter? Look at Luther and Calvin; or Henry, Paine and Jefferson; or Marx, Lenin and Mao.  What is their commonality?  They had ideas and observations in their heads that they needed to release.  If other people understood them, if they made sense and wrote pieces that became rallying cries for change and rapid revolutions of necessity because evolution was too slow.  But more than that they wrote because they needed to give voice to those situations they felt to be wrong or unjust.  They did not write about the problems, but they identified them and promoted possible plans of action.  They even espoused the concept of Common Sense over accepted doctrine and blind obedience and fealty.

But what is the risk of speaking one’s mind.  Ridicule, disdain, anger, bigotry, pain. . . . I have felt all in the past week.  While I wrote of Evan and his journey, his situation meant afforded me a shield.  With Evan’s situation resolved, I write with a sharper pen, not laced with poison, sarcasm and cynicism; by pen seems to cut like a scythe, leave the fallen grain to be winnowed by fork and wind.  But sometimes there is light in the darkness that a step taken by anyone can spur on a cascade of steps by others.  Today I was bathed in some of that light as I met with a friend for coffee and they desired to be authentic and share.

I almost fell out of my chair laughing when I heard this.  My friend is about as authentic and genuine as a person can be.  He loves his wife, his kids, the dogs, his job and Jesus.  Not necessarily in that order, but he has never hidden his feelings on any subject with me, even the subjects we disagree on.  That is why he is such a good friend because he keeps an open mind and does not condemn me for a different point of view.  I encouraged him to write, to get his thoughts into the sphere of appropriate influence.

Ah yes, The Sphere of Appropriate Influence.  There is a story of a big tent country revival in the farming bible belt of the United States of America.  For all those reading outside the USA, please envision your most backward, straw in mouth, Praise Jesus, Hallelujah and pass the biscuits sort of picture.  And every God fearing man and woman from three counties came each night for this event of Hellfire, Brimstone and Altar Call worship.  And one single farmer came each night to this revival and he was stirred by the preaching, praying and singing, and for each of the first 4 of 5 nights he gradually moved seats from the back toward the front. 

On the fifth night of the revival, after the sermon concluded, the pastor called for public confessions and repentance by the faithful, just as he had done the previous 4 nights.  And just as had happened on the previous nights, the congregation, hands raised, singing with the choir shouted out their sins of greed and gossip, bad living and foul mouthed antics.  And to everyone, the pastor yelled back his encouragement of cleansing and peace.  The single farmer was so moved that he finally stood and yelled, “I have drunk too much hard liquor!” and the preacher cried out, “We feel your pain, let it out!”  and the farmer encouraged and feeling the power in the moment confessed loudly, “I have fornicated with loose women and gambled away my money!” and the preacher also sensing the power of the moment replies, “Jesus loves you, let it all out!” and the farmer did, “And I have slept with my sheep!”

The tent is instantly silent, the farmer standing and beaming like a prize rooster, the choir is slack jawed, open mouths gaping and every person in the tent looking at the man.  The preacher walks over to the man and quietly whispers, “I don’t believe I would have let that out!”  

What is it about daylight in a dark space on someone else’s public authenticity about the unshared/unsharable that scares us or inspires us to keep watching the slow motion car wreck?  Where is the call to action?  And if the hue and cry are raised why do we or do we not respond?

“I cannot choose but adhere to the word of God, which has possession of my conscience; nor can I possibly, nor will I even make any recantation, since it is neither safe nor honest to act contrary to conscience! Here I stand; I cannot do otherwise, so help me God! Amen.” 
― Martin Luther

King David is one of history’s great mysteries.  Lauded in the bible for his military skill and for being a man after God’s own heart, he was not accepted as a real figure of history in secular circles until 1993.  But it is not his greatness but his failing that is of interest to Nathan, an observer.  It is this reference that I share with my friend.  Someone has to tell the world that the Emperor is not wearing any cloths, why not you?  If there is pressure to recant, ask yourself why is there a push back, what do the powers that be have to fear the light of day.  This isn’t uncovering bestiality, at best it is an open discussion of poor choices reached hastily without due diligence or in the name of pride or prestige that pale in comparison to future health and safety.

“Reason is a whore, the greatest enemy that faith has; it never comes to the aid of spiritual things, but more frequently than not struggles against the divine Word, treating with contempt all that emanates from God.” 
― Martin Luther

I leave you with this quote to contemplate and comment upon.  I have just received comment in another forum that our progress as a race is built upon the reasoning and rationalizing of the collective sum of humanity as it sways between the dichotomy of pure good and pure evil.  Where is Pascal and his damned square of Divine reason.  But that is for another day.

A Church Full of Sinners, Just Like Me

A couple of days ago I saw a bumper sticker, “Losing my faith in humanity, one person at a time”  And as a middle aged christian man I am acutely aware of the various hypocrisies that the church represents to the world in spite of or because of the variety of virtues that are brought forth in light of mission outreaches. 

Some years ago I was honored to be an Elder (A Big Muckity Muck) in a church of some 2000 regular members, I had no idea what I was doing, but tried to not embarrass God anymore than I already did as a regular sinner.  One Friday night in spring of some forgotten year it was my responsibility to sit in on a Confirmation Exam.  This event was the most feared aspect of the two year confirmation process of a Lutheran teenager.  In front of God, family, friends, pastors, elders and any other member of the church or public the Confirmands had to stand in the center of the dais in front of the 30’ cross and 3 tone granite altar (It looked like it had been imported from Stonhenge) and answer questions on doctrine, dogma, and humanity in light of divinity.

From the adult perspective it represented a time of reflection on their own examinations, but from the point of the Elders it was intended to allow us to ensure that the teaching of the pastors was in order with the beliefs and polity of doctrine, dogma and denomination.  But however we adults saw this affair, the teenagers saw this as the ultimate in Gestapo like techniques of bright lights and unforgiving questions, a wrong answer condemning the poor soul to hell or worse recycling into the next years confirmation class in a humiliating do-over.  

One young, tall and lanky teenage boy, the grandson of the Lutheran School Principal of some renown was at the microphone when he was asked to share his thoughts and interpretations on the following somber question. “Dr. Luther has taught us that we can find the very evil we seek to avoid in every church.  Where did he teach us that we might find it in this church?”  A blank look followed as a bead of sweat trickled down the side of the young man’s face, he shuffled nervously from foot to foot.  It was clear to everyone watching that he did not know the answer or at least not on the tip of his now dry tongue.

The Pastor sensing the deer-in-the-headlights look took it upon himself to coach the young man with a little nudge in the right direction, “John (name change to protect the convicted) where do you think we might find evil in this church?”  Now it must be shared that the church building was a towering brickfaced edifice of the modern architectural style of the 1950’s not lightly taking some of the design elements of Frank Lloyd Wright.  The basement held a full commercial kitchen and seating capacity for several hundred, there is an elevator from basement to the balcony of the choir loft, the narthex is a towering structure of glass and steel, and the sanctuary is high ceilings of angled polished timber with walls of brick.  Stained glass windows lined one side of the church, while 8 x 8 inch timber formed a massive cross beside the 3 ton table of polished granite.

Finally a response was uttered in a tremulous less than confident voice far removed from his physical and social stature of his peer group, “The basement?”  After the laughter died down, the pastor pointed out that the ladies group who were at that moment down stairs making refreshments for the post grilling celebration would not appreciate their preparations being associated with evil.  And the young man relaxed and remembered the answer.  “Evil may be found in the hearts of every man”

The church, international, national, regional and local are all made up of sinners.  Sinner are the type of hypocritical people with who the aforementioned bumper sticker is complaining. As a good sinner I went to church yesterday in part because misery loves company, but also because I was indoctrinated as a child, love my God and want to share a part of my joy and thanks for life to an entity that needs neither.  And like the inexorable rite of passage that Confirmation exams herald annually, my faith in the church took yet another blow.

Sin within the church is nothing new, and there are no special sins that are specific to or restricted from members of those august bodies.  Religions over history have established rules of conduct that are intended to facilitate a harmony and prospering of the relationships that are the true structure of their existence.  Whether it is the Ten Commandments, the Golden Rule, or The Seven Deadly Sins, the goal is the same thing; and yet in their very existence lie the pitfalls of sins of judgment, gossip and pride.

A Child dies: why do they not come back to church? Why are they still grieving? Why are they not grieving? How can they laugh? How can they not laugh?  They are just too sensitive?  I am so sorry that God didn’t answer their prayers?

A nineteen year old boy likes a 15 year old girl, they have been meeting at church and church events for over 8 months when her parents find one side of the shared love letters.  His intentions are honorable as are hers, but the parents get the elders and the Pastor involved. Threats of criminal charges are leveled – without basis, threats of restraining orders are leveled - without basis, participation in events are proscribed, and attempts at denial of communication are entertained.  The model of love as shared by Dr. Martin Luther and Katrina von Bora are ignored.

Communication continues, an intervention without parental representation is made, more elders are involved and the boy is told that he is evil, criminal, going to hell and should leave the church.  This was 6+ months ago.  The boy and the girl still love each other, more actually for having mutually fought the storm of denial foisted on them by parent and church alike.

A child with a chronic disease is mercilessly ridiculed by a classmate in Sunday school about the way he looks, the teachers don’t intervene, the pastor does not intervene when told, and so the offending child, parents and the teacher think that its okay to make fun of those with physical afflictions.

A man is suddenly left widowed.  He is castigated by rumor, innuendo, and pastoral inquiry that he has not let enough time pass since the death of his wife to seek out the companionship/friendship of someone who understands his loss, a woman. 

“You are not only responsible for what you say, but also for what you do not say” 
― Martin Luther

And people wonder why I have issues with the church and its leadership.

“Since then your sere Majesty and your Lordships seek a simple answer, I will give it in this manner, neither horned nor toothed. Unless I am convinced by the testimony of the Scriptures or by clear reason (for I do not trust either in the pope or in councils alone, since it is well known that they have often erred and contradicted themselves), I am bound by the Scriptures I have quoted and my conscience is captive to the Word of God. I cannot and I will not recant anything, since it is neither safe nor right to go against conscience. May God help me. Amen."

(Reply to the Diet of Worms, April 18, 1521)” 
― Martin Luther, Luther's works, volume 33 : career of the reformer iii

The Christian Church of the western world is divided into two primary veins: Roman Catholic and Protestant.  The Orthodox church has made inroads, but the dominant faiths associated with Jesus are RC and P.  At the core of the belief systems lie two thoughts: love your God with all your heart, soul and mind, and treat your neighbor as yourself.  But to clarify this and to ‘ensure’ that the correct interpretation is applied, the church well before reformation established the code of The Seven Deadly Sins.  The commission of these sins whether by action or omission were deemed by the Church Fathers (There was no room for Mothers, they should be home making dinner and raising the children, lol truly intended for humor) was to commit such heinous affront to God that the offender would spend all eternity in the pits and fire of hell.

For the sake of review, the 7 sins are:  Pride, Lust, Gluttony, Envy, Sloth, Wrath and Greed.

So Observation of the day: Who rules your Heart, Soul and Mind? You or your Higher Power? And knowing that you are guilty of committing the seven deadly sins (if not this moment or today, then in all likelihood this week, and for sure in this year and with certainty in your life), does this affect how you move forward in your journey?  Should it affect how you travel at all?

Enjoy the rest of your day, I know that I will. Because I have no perceptions that I am perfect and no expectations beyond a commitment to do as Evan did, that is to do the best I can with what I have, today.

Tough Days are like Roses

It can be truthfully said that all days are tough right now, but some days are tougher than others.  Today was a tough day, not from the day or date, but because we took some things back to the hospital that we had borrowed from the Recreational Therapists.  The easels had held Evan’s last works of art from his first art show.  We also took unopened LEGO kits for the Christmas room, and some munchies for the staff, and pictures of Morgan, Pixel and Evan’s garden; and most importantly for the nurses and staff, we brought ourselves and our broken hearts.  We understand that misery loves company, and just as we are healing broken hearts, so is the staff at the hospital.  Anyone who had come to know Evan is trying to mend their hearts and make some sense of his death.

The hour commute to the hospital gave us a chance to reflect on the many trips we had taken with Evan.  We stopped for breakfast at a familiar haunt and then for gas at a familiar station then we parked in the familiar parking lot and tool the long familiar walk over to the clinic.  Then we saw the bittersweet faces, the joy at the courage to show ourselves, and the bitter memories of how we had come to be so familiar.  And there was a new analysis on grief that entered our discussions. We unilaterally added to the five stages of the Kübler-Ross model of grief. To Denial, Anger, Bargaining, Depression and Acceptance we have added the element of Parental Guilt when a child has died.

As a general rule, it can be safely said It is patently ridiculous to believe that a parent may have committed some act or omitted a prayer that intentionally contributed to their child’s death.  There are of course those cases where parents under extreme emotional distress have harmed their children but for parents of sick children there is nothing more they could have done to save their child within the scope of their knowledge, diligence, faith and money.  But perception is reality, and parents of children who have died perceive they are living in hell. 

Every morning brings fresh confirmation that their life is not a bad dream that the child is not sleeping quietly down the hall and the cold dull emptiness in the stomach is confirmation that their precious child is dead.  And with that pain comes the nagging ‘what-if-I’ questions or the haunting memories of decisions made and the 20/20 hindsight of retrospective judgment. 

Parents, like the US military, understand that the first goal is to get everyone home safely. When a child dies; whether by random accident, violent act or disease, the first thought through a parent’s mind is, “What could I have done better to protect my child?” and then in short order, “What if I had only left earlier/later or stayed with them a little while longer or asked for more/less/different medicines/treatments?”

There is a fraternity of parents who have lost children.  Some lost children at a young age, some teenagers, some as adults.  Some saw their children die from accidents or carelessness.  And yet others watch in agony as their child is taken from this world by the actions of microscopic cells and an inability to understand or effectively combat those forces.  But none of them can claim to truly know the pain; there is merely the silent up nod of a knowing face that is carved from the granite of pain that only melts into a gargoyle of anguish if pushed in the wrong direction.

It is at times like these that those who think they understand will offer the dumbest platitudes with the best of intentions; because if they truly knew they wouldn’t say anything because there are no words on the telepathy of a hurting parent.  We have come to know some of those unfortunate souls.  There are those who lost children to miscarriage, and others to new born deaths.  Here are the parents of a 7 year old who was hit while riding a bike or the other to encephalitis or to a form of leukemia.  Or the fifteen year old killed by a drunk driver or the 30 year old who died of lung cancer when they had never smoked a day in their life. 

And the overwhelming common theme to their grief is the personal unrelenting guilt.  This is guilt of reflection and of condemnation. This sense of inadequacy is the feeling of guilt, of unfulfilled expectations and unmet dreams.  And along the way are the three common statements, “How are you?”, “You were the best parents”, and “He was so talented”. 

The truthful responses are, “As well  as we can be, because this sucks.”, “If we were so good, how come our child is not here?” and “Yes he was very talented and showed great potential that the world will never get to experience because of our failings as parents.”

This is not a ploy for pity, frankly it is profoundly troubling to hear attempted words of comfort from those who have never experienced this loss. (NB: The loss of a child is completely different than the loss of a sibling, parent, or friend.) The unspoken look, the acknowledgment of circumstance  is as good as it gets in this arena.  This is because the loss is as unique as the child, who no one knew better than the parent.  The child into whom the parent poured love, time and more love to enable future success and happiness, no longer lives; except in our hearts. Their bodies having been broken on the rocks of death as the storm of life raged on in blind testimony to the fragility of life and the eternity of death.

And all of the above was lived out again in that brief visit back to the hospital.  Next on the schedule of our day was a visit to our other favorite place, Hospice.  A the Hospice office we dropped off an ornament special to Evan for their Christmas tree of Remembrance that celebrates the lives of all the people they had provided hospice service to in the past year.  This was the last day and the last hour that they were taking ornaments, and Evan’s LEGO Nutcracker from 2011 was only the second ornament on the tree.  Please come along on this journey, the Hospice office helps 5-10 live patient families at any given time, or about 20 patients/month, or meeting the final support needs for over 250 people in a year.  And only 2 families had found themselves with enough strength to realize that just like the nurses at the hospital, so too did the hospice workers need the timely reassurance that the love for their patients did not go unnoticed.  But death has a way of robbing everything: Life, support, love, joy and faith.

One of the critical pre-death preparations for patients and families is validation of a higher power (I use the lexicon of twelve step programs because I do not wish to confuse doctrine and dogma and positional authority with the essence of the circumstance which varies from individual to individual) The presence of a higher power allows for the introduction of faith (Higher Power does exist) purpose (My death has greater meaning) love (I matter enough that the higher power has other things in store for me) and comfort (When I am gone, there will still be a higher power looking after my loved ones)

Post-death higher power awareness takes on a completely different set of words, meanings and emotions.  Most shared, “What were you (the HP) thinking? I don’t understand how you (The HP) believe that this was in my best interest or the best interest of my loved one?”  Secondly,  “If this is loving me, could you love me a little less?” 

In the pre-death world, the living hold up glass mirrors that they peer into for reassurances of love and peace, hope and joy.  At the moment of death, the mirror is ripped from our hands, shattered on the cold stone floor of life. And we are left to either try and piece back the pieces by ourselves or to let our higher power create the most amazing and beautiful mosaic of life if we have the patience and the peace.  If we do not possess these skills and attributes, we are destined to try and patch the pieces together with the help of narcissism, self-loathing, depression drugs or alcohol.

Completing those two activities before 2:00 pm meant it was time for a small repast and then onto making birthday party invitations for our daughter’s 18^th birthday.  She is doing a Build-a-Bear party, how cool, how ingenious, how mature to recognize living with a child’s joy is the true goal of adulthood.  And then Home Depot for materials to permanently mount Evan’s LEGO under Christmas tree train track.  And finally home for pizza and some quiet time to reflect on a ‘tougher’ day made more manageable because my wife took the time to ensure that there would be just enough time for reflection and memories while getting things done.  She is a modern day miracle worker of balance, efficiency and help.

Now if I could only get Pixel, Evan’s dog, to better mind her manners and keep her nose out of dirt and garbage. . .  but that is definitely for another day; but for now it’s off to work in Evan’s Garden and then onto to youth soccer coaching.

Day 100

Let Observation begin with the presumption that most people who will read this are pursuing success in one field or another.  This pursuit may be in a work environment or in a recreational pursuit, or even an academic field; but almost assuredly you are seeking success. And it may be surmised from this pursuit that you either equate the effort to accomplish or the actual success with your ongoing happiness. But how do you know when you are successful?

In the zero-sum world of near unadulterated capitalism there is typically only one winner for any given competition.  Let it be interjected here, in a tip of the hat, that there are new trends in business management; working models of sustainability look to change the goals of businesses from pure shareholder equity growth via limiting progress measured by profit line comparison to long term strength of relationships with customers, suppliers and the community in equal measures.  But most people who are reading this will have developed their sense of success on the old zero-sum, winner take all approach.

So let the Observation shift to a look at 5 people in the battle against cancer: The Patient, The Nurse, The Doctor, The Hospital, and The Pharmaceutical Company.  My personal experience with Insurance Companies leads me to believe that their role in the cancer puzzle is remarkably neutral, only when we realize we did not have enough coverage do we find ourselves calling for insurance company or health benefit reform.  This complaining comes because we often hold the extension of life more precious than the life that is lived to the fullest.  Once again a topic is touched upon that is worthy of its own separate discussion; so more on that later.

For this moment let’s look at our 5 people and see how they define success: The patient would appear to be the simplest but that view is almost always seen from any point of view but the patient’s.  Success is not just beating the disease, but beating it while remaining intact.  To keep one’s body whole along with maintaining vibrant healthy relationships with family, friends, and co-workers is no easy task on a day to day basis for those of us not fighting for our lives against an invisible foe.  To accomplish while fighting against millions of uncooperative over-replicating automatonic cells is virtually impossible. 

It is in attempts to compensate for this inadequacy the patient will seek either solitude, or to develop the acting skills of a Meryl Streep or Laurence Olivier.  For the cancer patient success is defined as actually beating the disease or presenting the façade of not letting the disease beat them?  If they do beat the disease, rarely are they left whole either having lost body parts, friends, family or all three.  If they manage to fool the world into believing that they are going to be okay with the ultimate sacrifice, the world showers them with pity and love until pass away, and the legacy of their fight is perhaps memorialized in obituary or on a headstone.

The Nurse is the most challenging person to try and define success.  Decision making is limited, so the consequences for patient outcome are minimized. But as the hands on part of care giving, the Nurse receives the most input from patients, family, Doctors and hospital.  Much of this is positive input even if demanding, but the few negative inputs coupled with the realities of caring for people who are in all likelihood going to die from their disease takes an immense personal toll.  Many oncology Nurses can only handle 3 years or so before the stresses make it impossible to continue giving the best care and they become jaded and in need of either counseling, medication or both.  The sure cure to this situation is of course to move onto another field, but some are so touched by the strength and courage of their patients that they commit their lives to this field. 

Success for the oncology Nurse may be as simple as being to go home each night and getting a good night sleep before getting up the next day, returning to work and greeting the new day with a smile.  Success can be defined as perseverance of a compassionate heart in light of all the tears and pressures to address all the administrative crap that comes with the job.

Success for the Hospital, a corporate person, is defined as keeping the doors open while seeking to gain the largest market share of patients.  To accomplish this goal it must balance a quantity of patients many of whom are un- or underinsured against maintain a quality that allows them to keep accreditation, recruit a working supply of adjunct staff and nurses, while keeping the Doctors as happy as possible.

Much of this is done on the financial backs of those patients who have adequate insurance coverage.  Adequate is a subjective term here, subjective to the Hospital’s perspective.  Over charging for procedures, services and supplies is moderated by Insurance company standards of ‘Reasonable and Customary’ charges.  Such modifications by Insurance companies still compensate typically in excess of 200% of actual costs, indicating that a 200% profit on all insured patients should offset the unrecovered costs of the un- or underinsured.  Consider the most expensive and expert building contractors only charge 20% for overhead and profit. 

The costs absorbed by caring for the un- or underinsured should be covered; and yet the pursuit of the co-pays, deductible and co-insurance of the insured is a tenacious job worthy of the meanest pit bull.  To all the pit bull owners of the world, I am sorry for the comparison, your dogs are worthy of much better company. It is these incidental fees that often cripple the financial health of the patient.  In Evan’s case, the main hospital billed over $475,000 to our insurance company, the insurance company paid almost $300,000 of these fees, and we were left to pay over $28,000 in other fees.  Had we not had insurance, the expenses would have been written off or upon legal pursuit, been wiped out in a bankruptcy proceeding.  All this after the Hospital had already received a king’s ransom.

If this were any other business, a poor outcome would have resulted in non-payment, price adjustment or refund, but Hospitals success is like that of a professional baseball player.  If they get it right 3 out of 10 times they are considered good, 4 out of 10 they are elite.

As complex as the success for a Hospital might be, success for the Pharmaceutical Company is a lot simpler proposition.  Make enough money by selling those items that no one else can produce while keeping the R&D moving forward and keeping regulators at a safe distance.  For the last 18 months of treatment at our local hospital Evan received an injectable medicine called Temsiorlimus it was listed at $5,000 on the hospital bill, was being administered ‘off label’, given once per week and required Outpatient Clinic Administration. 

Temsirolimus is an mTOR inhibitor. mTOR is the acronym for mammalian target of Rapamycin.  Some time after the completion of the Human Genome Project, a number of scientists looked at the effects of certain previously established medicines upon cellular functions.  Rapamycin was one such drug, and it interacted in a manner that restricted the amount of proteins any given cell might produce in the body.  Because proteins are the building blocks of cells, Rapamycin was considered a possible cancer fighter. 

Once a drug is discovered, a patent is filed with an expiration date of 14 years.  So from discovery to the end of the patent is the maximum period of profit, because after the patent has expired, then anyone can manufacture the drug at cost and sell for a modest profit.  The discovering agency has a window of opportunity to make enough money to offset discovery costs and make as large a profit as possible before generic drug makers enter the market and sell the same medicine at cost plus a reasonable profit.

Discovery costs are broken into two categories: Efficacy studies and Safety studies which are supposed to run side by side and be overseen by the FDA.  Rapamycin as an already approved drug with an expired patent would never be the researched into cancer treatment because the discovery costs could never be recovered before generic manufacturers undercut the price. 

So Wyeth purchased the drug and set about developing an insignificant change to the chemistry of the medicine so as to gain a new patent.  The drug Serolimus was developed without intent to take to market, but it establish a patent protection window.  In the midst of patent protection Wyeth reconfigured Serolimus to create Temsirolimus and sought to take the drug to market for a rare cancer that would not get the attention of the generic manufacturers.  Upon approval in that field Wyeth began the effort for widespread use of the drug in other oncologic fields by promoting study centers and paying grants to doctors to research the newest medicine with the longest patent protection.

US consumers bear the greatest brunt of cost recovery due to the high returns on health insurance for those that are covered.  As a result, the Temsirolimus that was sold at $5,000/dose before hospital delivery costs, is available through a Canadian pharmacy for $200/dose, and Rapamycin a drug that does the same thing but doesn’t require any hospital time $53/dose.  For my money, Pharmaceutical Company success is judged as being to milk the US American public for the most money for the longest time.

Enter the final person for observation today, the Doctor.  I respect the frontline clinical physician as one of the most underappreciated and least respected occupations in the world; however the greater the degree of specialization and sophistication the less enamored of them I become.  My personal experience has led me to see the best surgeons as the most arrogant which is to a certain degree necessary for the person who is willing to cut into a body to make it better.  And given my own hubris, I have found myself at odds with such arrogance.

But the Pharmaceutical Oncologist is a beast of another color.  They accumulated enough knowledge in such an odious field to be considered the best clinicians in the cancer arena; but as they wear the uniform of clinical physician they do so as they walk around in the masquerade guise.  Their real identity is that of the Experimental Scientist.  Except instead of cell lines, rats or mice, the subjects of their experiments are human beings.  And this is where the ethics gets fuzzy until you look at the money. 

As compromised as the Hippocratic Oath has become, at the core is the fundamental motto that we assume all physicians hold dear, “First, do no harm.” And as we all desire the best care when faced with unique or life threatening diagnosis we flock to teaching hospitals and seek out the ‘best’ doctors in the field.  When needing a cardiologist or cardiac surgeon, there is little to be discussed as the workings of the heart are well known and understood, it is the skill of the Doctor in interpreting the individual cases that sets them apart from their peers.

But what sets an Oncologist apart from their peers.  As much as we advance the knowledge of cancer as a field, we still know so little about the individual specifics, and more research is done on how we respond in generalities to various protocols of processes rather than to curing the individual.  The emphasis is on the disease process rather than the individual.  So the best Oncologists are not necessarily those who have had the greatest success, but the one’s who have been published the most in the most respected peer reviewed journals.

As Doctors are evaluated on how many patients cross the threshold of the hospital, the Oncologist who develops the highest profile by having the most/best articles published getting the notice of the referring physicians is critical to status.  The clinical physician disguise is maintained throughout the course of treatment, but once a patient enters Stage IV they are immediately evaluated for what locally available study is open to them.

Locally available means that a pharmaceutical company is willing to fund the research, the hospital still gets its cut from insurance, doctor gets to double dip as they are also paid out of the grant as well as regular fees and gets to do the research that may lead to publication, and the patient is given ‘hope’ while having been transformed from patient to guinea pig.

So unable to ask this question during treatment or upon revelation; Why was Evan denied Radiation Therapy?  I can now answer: He was denied because that would have led to less income and prestige for the doctor/scientist.  Triaged with a black tag upon entering one person’s Stage IV, he would be of no further value to the pharmaceutical oncologist if his tissues could not be used for experimental treatments.   

Today is 100 days since Evan suffocated to death because of the among other reasons, the hubris of doctors, the unadulterated profit motive of pharmaceutical companies, and a lack of unencumbered ethical oversight by a disinterested third party board at a hospital.  

When I began to pursue admission to medical school to be a better advocate for Evan, I was naïve but motivated.  Now that I have seen the system and recognized its need to be reformed, I find myself stuck in a place lacking motivation.