So I have threatened that I would start to write again. I don’t know where this will take me or you, but I have come to an understanding that without writing, I am a lesser human being. For those who do not know me, it would be better to understand who I am from where I am and what has led me to this place. From that point it might be possible to establish a dialogue.
I am a middle age christian man. I am a husband of many years, and the father of two amazing children. One a teenage daughter is not only the apple of my eye, but also the potential bane of my existence as she struggles with the stresses of growing into adulthood as a member of a first world society while she comes to grips with all world issues. My son, Evan, died this past August. The story of his valiant fight against cancer can be found at www.e-nevusnotes.blogspot.com. But the influence of his life and the legacy of our relationship is to be the spine of this blog.
Let me be clear at the outset, I love my son, I see him through rose colored glasses and yet I also know that he was not perfect as a human being, but he was as a son. He was like many of us, a journeyman in the first world, who as he sat in judgement of others only saw their foibles and imperfections. But where he differed was in his lack of expression of those judgements and in the accumulated wisdom he held because of his unique circumstance.
As a father of a child who died of illness while existing in the first world, I carry an immense portion of guilt surrounding his death, not the least of which exists because of the first tenet of fatherhood - keep the children safe. It is a flawed and self-destructive thought process, and guilt has long been associated within the universal christian church as a sin; but it is also a useful tool of reflection to better see the past in slow motion. In this manner it is possible to explore the things that truly might have been done with malfeasance versus decisions made with the best of intentions with the best efforts of preparation.
And so begin the Observations. For those readers who have asked that the writing continue, that they enjoyed/benefitted from the musings of people going through the midst of highly challenging circumstances, we bring you life in the World.
Christians have embraced their perjorative name as a badge of pride. This original pride was for survival in the face of persecution. That it has become the baseball bat of hegemony and hubris, the weapon of choice for a dominant culture that is self-defeating and smacks of the self-righteousness, and power without restraint.
The first world, with the United States at the fore, is heavily influenced by a religious right wing that wields the name of christian as a cudgel of arrogant hubris to beat down all who disagree with their point of view on both settled and unsettled issues facing society. This is problematic enough but the resulting failure to engage any discordant voice in any attempt at fruitful dialogue has hamstrung the political right and driven the governmental gridlock to the left.
I describe myself as a conservative, but this is tempered as a follower of the christian way. I go to church, but as a good protestant I do not fully trust the leadership and hold fast to my skepticism. Skepticism that is borne from a lack of biblical study at a level worthy of discussing doctrine and dogma. My interests lie in the practical application lessons in the bible and as modelled by Christ.
As a person who has experienced the practical application of the hand of God in action, my desire for understanding is focussed on such issues as day to day survival and influencing those around me to engage in open dialogues resulting in positive growth of relationships. Like grains of sand on Abraham’s beach, the harder we try to hold a handful of people to our way of understanding, the less we can actually influence them in this life. And like the grains of sand in a hand held too tight they are blown away by the wind. Our call is not to grasp the sand, but shelter it from the winds and storms of life so that life can bloom.
This piece of prose to this juncture has been a hodgepodge of what has been mulling around in my mind these past three months. I have procrastinated and sought distractions from dealing with the 400# gorilla in my room, the death of my son.
For the past 5 years, I dedicated my life to becoming the best advocate I could for him especially in light of the initial treatments surrounding his diagnosis back in 2007. For his last 6 months from late February until he passed away in mid August, I was not only his primary caregiver but his constant companion 24/7. His loss had a profound impact on all who knew him, for me it was a cataclysmic event that I did not feel I could face. I can’t face it yet, but need to work around the grief to ensure that I am not swallowed whole by the immense sadness.
Many who are reading this will have read the postings in www.e-nevusnotes.blogspot.com and you will be able to grasp the pain and horror of facing the loss of a child in slow motion. What no one could predict was the intensity of the pain nor the motivated ability to avoid the pain. There are a series of self-destructive processes such as guilt or visits to prior places of refuge that merely serve as triggers and synergistic multipliers of the anguish.
But the defense mechanisms are hindered. The anger burns so hot inside of my heart and mind that to give it air and oxygen would threaten an explosion that would result in a fire of ill-spoken, ill-advised words of condemnation and visceral hatred. This of course is antithetical to the legacy that Evan left that we should all ultimately seek peace through love. But the necessary expression should not be tried until one has enough self-control to keep the acid bile down instead of verbally vomitting on the nearest unsuspecting recipient. I hope that I have reached such a point such that what is written here is both palatable and valued, but you will be the judge of that.
But what is there to be angry about? Did we not do the best we could against a horrific and unrelenting disease? Was Evan underserved or influenced into a poor decision path? No, and No. While we have access to the ‘best’ medical services in the world, we are still very subject to the whims and foibles of human beings who occupy the bodies of providers we have not real options to follow or reject because they frame things in manners that are in their best interests first, and not the best interests of the patient. When there is congruity in these positions no one suffers, but when a patient is shifted from a possibly curative position to a non-curative position if not imminently fatal one then all bets are off.
At the gist of the medical beefs are two primary issues. The first lies in the patent protection practices of pharmaceutical companies. This pursuit for extended profits is directly linked to litigation defense anticipation while covering the overly burdensome regulations that are supposed to safeguard the public but are in and of themselves typically knee jerk reactions to individual situations, effectively closing the barn door after the horse got out.
In Evan’s case, the drug of choice by the doctor resulted in weekly trips to the hospital for monitored infusions for a medicine he could have taken daily in a pill at home. The infusion medicine was the same stuff under a different name and cost 50 times as much as the pills, and that is before the hospital added their $1,000’s per weekly visit.
The second issue has taken a much greater portion of my anger supply. Medical providers not telling the whole truth, prevaricating to protect their position, from a christian perspective ‘sins of omission’. When it was determined by us ‘stupid’ parents that surgeries were not helping, and were likely hurting, we were told that radiation was not a viable option, that it would not work, and that it would lead to other problems. We received this news in good faith believing that radiation oncologists had been contacted, and that their curative opinions were solicited. Like good patients and parents we took them at their word.
Evan received radiation therapy in late May and early June and over 10 days received enough radiation to kill 2 grown men, but it was targeted, precise and he took it like a champ. The original tumor(s) he had been battling were crushed by the radiation, and he would have been viable candidates for surgical removal with follow up radiation and chemo. Small problem; this treatment option was left until he was a terminal patient and the radiation was to allow him to die without losing the use of his legs - not that anyone could or would tell that to him. The disease had so infiltrated his lungs that an xray taken 4 weeks before he died showed all the lobes of his lungs as opaque areas of spreading tumor.
And then the kick in the crotch, a Radiation Oncologist shared that Stage IV patients have life extending treatments withheld because any tissue exposed to radiation negates its use as a clinical trial patient for any drugs being developed. People with Stage IV diagnosis’ are not patients to be cured, they are lab rats for experimentation. How much more valuable then is a child who is diagnosed Stage III 5 years ago and Stage IV 3 years ago?
Like most problems in the first world, the quickest way to the answers is to follow the money. But more on that later.