A Thousand Shards of Glass

1 DYING THE AMERICAN WAY

To the living we owe respect,

but to the dead we owe only the truth.

Voltaire

At the time of this writing, in the next room, my dear wife is dying. It is only a matter of hours, I have been told, until the brain tumor that has tried to take her for over five years will finally end her existence and its own, in a rather odd victory.

The beginning of our family ordeal arrived with a whisper. First came the soft, terrifying voices and later the auditory hallucinations that my wife worried might be the first signs of madness. After being assured that was not the case, she found that the hallucinations lessened, only to be followed by a persistent headache that intensified each day.

On a sunny California morning she rose and said that the headache had worsened and then said, ‘You don’t think I have a brain tumor, do you?’

Seeing the concern in her eyes I immediately hugged her and said, ‘Oh sweetie, no. It’s probably those allergies of yours acting up again,’ not for a moment thinking that such a horrible thing could be true, for Kris and I still lived on that side of the river where the illusion of past well-being lulls one into a sense of present security. It is finally illness that wakes us from such dreams and in a moment we find ourselves on the opposite bank looking back to see who we once were.

So began our descent into the bowels of a brutal and savage corporate medical business, one that would prove nearly as traumatic as the tumor itself. For in America, from the beginning, my wife, as with millions of others, was not looked upon as a patient but rather as a consumer, which meant being seen as an opportunity by some and a liability by others.

In all my travels throughout the world, I have never heard of terminal patients being referred to as customers except in the United States, and that alone speaks volumes about who we are and what we value. It is no wonder then that, from the beginning of Kris’ illness, patients, doctors and nurses told me that in America a patient must have an advocate. How strange.

The (second) definition of advocate in the Oxford English Dictionary is ‘a person who pleads a case on someone else’s behalf’. The word ‘pleads’ is quite appropriate in our case, for I have had to plead and threaten, trick and yell and cry and yell again and write endless letters and threaten with violence to get what I needed for my wife’s care. And we are the supposed ‘lucky ones’ with insurance.

One can quickly see why someone thrust into such savagery at such a vulnerable time needs an advocate. But why is the system, and let’s be frank, the system is ‘us’, in such a state? The reason is quite simple: it’s the money. No ethics apply, for the idea of ethics is but a quaint afterthought in the United States, something that is said in order to allow people to live with themselves and avoid seeing the monsters they have become. Yes, monsters do exist.

The American medical business is best described as a giant machine with a million moving parts. Each one of those million parts is owned by a different entity, most of whom do not communicate with the other because they are in competition and thus adversarial. It becomes apparent very quickly, once someone is trapped within the system, that all of the talk of ‘service’ and ‘choice’ is a constructed fiction for the protection of corporate interests and the promotion of a ‘product’ which is, at its heart, the illusion of security. The promises made prior to an illness quickly evaporate at the most desperate of times to reveal a labyrinth of conditions, ever-changing rules and small print that not only fails to soothe or elucidate but terrifies instead.

Contained within this machine is an endless Kafka-like nightmare that buries the ill and their families in sheets of paper that no one can understand, resulting in endless calls from strangers demanding more and more money. The faceless people manning the machine reach out their never satiated hands to unendingly ask the ill and dying for more of everything. In this, the United States is unique when compared to any other western industrialized nation.

When a woman from the hospital’s business office called to tell me that I owed the hospital more money, I reminded her that a doctor at the hospital had made arrangements for my wife and I not to be bothered again concerning fees. ‘And I wish that the doctor had never helped you and your wife with those arrangements,’ she said.

I suspect she thought us unworthy of any consideration since I’d questioned so many indecipherable bills, or perhaps it was my audacity at going over her head and expecting that my wife would be treated with empathy and courtesy. During the five years I was dealing with such people, it always felt as though I were in a den of jackals that saw my wife as nothing more than a line item in their budget. Their callousness and indifference filled me with fear, leaving me to think that I needed to be ever vigilant so as to protect my wife from their intrusions and demands while she fought for her life.

The disease that struck down Kris was no one’s fault but the dreadful behavior that followed was. This is my opinion of course, but an informed one based upon many unpleasant experiences that never seemed to end and which increasingly robbed my wife and me of the time we had left together. I have often wondered if any of those people ever thought that such abhorrent conduct might put murder in people’s hearts. It did in mine.

The machine is also unjust to the point of farce. After not being able to get a claim settled as Mr. Michael Katakis over a five-month period, I resorted to using my appointed title of ‘Ambassador’ and spoke to a supervisor from our insurance company, who settled the claim in less than forty minutes. I asked him if he thought it appropriate that as Mr. Katakis I could get nothing done but as Ambassador the claim was settled in a matter of minutes.

‘What about others who are sick but have no advocate, or are not so persistent, or are not ambassadors?’ I asked, and was met with a silence that thankfully seemed a bit like shame.

The machine is also incompetent. When my wife received calls from the hospice nurses asking if they should come, Kris would assess how she felt and sometimes tell me, ‘You know, I am feeling fairly well today. Let’s not burden the nurse. She’s already spread very thin and this will give her a chance to spend more time with someone who really needs her today.’

Kris did that often. She is a kind and considerate human being but the machine does not reward such behavior. When the time came that Kris and I did need hospice respite, she was declined. Terminal tumor aside, the machine had decided that because Kris had been coping without hospice care for so long, she was not sufficiently unwell to need it now. This suggested to us that going forward we should use all resources available to us, even when not needed, so as not to be denied other services that were. Such is the efficiency and wisdom of the private American medical business.

When the insurance executive was called again by me, the Ambassador, the problem was rectified within thirty minutes but by then, after a week had already passed, Kris was too ill to be moved.

Then, there was the nameless woman who called and asked for Kris only days after she had returned home from her first brain surgery in 2007.

‘Yes, you have an outstanding bill of twelve hundred dollars. When might we receive payment?’

‘As you might imagine things are rather difficult here at present after Kris’ surgery and diagnosis. I have just received something from the insurance company saying it has paid seventy-five thousand dollars, with I think another eighty thousand pending. I don’t have the paper right here.’

‘What are you talking about? My wife was told that we were completely covered.’

‘Well, you are completely covered here, but not for doctors’ fees. The doctors here do not accept payment from your insurance company.’

‘But that means we are not fully covered. That is not what we were told by a doctor at the hospital. Are you saying that we are covered and not covered at the same time?’

‘Well, I’m sorry, but you were misinformed. Now the bill is twelve hundred dollars and how would you like to pay?’

‘Yes, we were misinformed and you have misinformed me again. You said that we are covered and then you say “except for . . .”. But if there is an exception then you cannot say we are “fully” covered. Also, we were misinformed by one of your doctors and it would seem it was done to keep my wife in your hospital. I am going to have to check things out before I pay anything because now I’m worried and confused. Are you saying that all doctors’ fees concerning my wife’s treatment will not be covered?’

‘But that means another ten or twenty thousand dollars, right? I need to find that somewhere. The hospital at the University of California, San Francisco takes our insurance, so why don’t you? And why would a doctor misrepresent the facts and not advise that we go to what is one of the best brain tumor facilities in the country, which I have just learned is UCSF?’

‘Well, Madam, I have not had brain surgery and I can barely understand you now. When calling in the future, please ask for me. My wife is in no condition to speak to you and I do not want her upset or worried. It won’t help her recovery.’

‘Please be advised then that if payment is not received within the time it is due it may be referred to collections.’

Some days later the business office called again and asked to speak to Kris Hardin. Once again I told them that Kris was not to be disturbed. They must not ask for her. I continued, detailing how we had been billed for mental health in Bakersfield, California. I told the woman that we had never been to Bakersfield nor had Kris received any mental health assistance from anyone, anywhere and I was not prepared to pay any bill until I understood it. The woman began to negotiate with me.

‘Okay, you don’t owe twelve hundred dollars, you owe eight hundred and fifty. How’s that?’

‘Eight hundred and fifty dollars for what? In the last conversation I had with someone from your office I stated that we had never been told about doctors’ fees, had been misinformed about being completely covered by a doctor at the hospital, that I was going to get to the bottom of the issue, but that my first responsibility at present was to my wife’s care. I also said that my wife was not to be contacted and here you are asking to speak to her days later. Do you understand that she has just undergone brain surgery for brain cancer and can’t even do basic math at present? What is wrong with you?’

‘I’m so sorry and yes, I will make a note, but you will have to take care of this balance.’

One day, unknown to me, Kris came into the room while I was fighting the same people over the same problem that no one could or would solve. After seeing me so upset she said, ‘Perhaps it is time for me to take my life now.’ I jumped up, kissed her and held her as she cried.

The Hippocratic oath speaks of doing no harm and yet so many individuals who are the cogs in this machine are not required to take any oath whatsoever but they should be, for they are indeed doing grave harm. All of the executives and workers in the insurance and drug companies and in the medical billing offices of doctors and hospitals are somehow excused from the dreadful conduct of the entities they work for, but this is rationalization at its most grotesque. Many of our fellow citizens are like the ‘good’ Germans now, who follow without thought; the cogs that make the machine work and prosper. They say the predictable things that people engaged in dreadful deeds always say: ‘I just work here and I’m following procedures’ or ‘I have to feed my family’ or ‘I need to pay my mortgage’, as if these needs are any excuse for the brutalization of others.

Sadly, when they or their loved ones cross over to that other bank, as we all will, clarity may finally descend upon them. They will look for kindness and support at their most desperate hour only to find that those around them are the same kinds of people they had once been. It is they who will then be surrounded by the cogs that have taken their places and who will now take everything away. All these workers, our neighbors and friends, are part of the tyranny and inhumanity, for the system itself cannot function without them. We are, in many ways, the disease itself.

Yesterday the hospice nurses were trying to get to Kris, as was the pharmacy, with a delivery of morphine so as to help with her pain. The difficulty was that the nurses and drugs could not reach her until later in the day because of an event here in Monterey and Carmel for the Concours d’Elegance, a fancy auto show of sorts where people with expensive cars smoke cigars, drink, have a grand old time and seemingly accomplish little beyond hedonism. The old trick of mentioning that ‘Some proceeds go to charity’ is perhaps employed to help assuage any need for self-reflection. It would seem that, in all the carnival planning, the mayor, police chief and city council had made no provisions for a situation like my wife’s.

Here in Carmel we all pretend to be what a lot of American towns pretend to be these days: a community. Carmel is not a community. It is an opportunity. The town sells itself cheaply and often, to any salesman trying to sell one thing or another while using the natural beauty of the area as a backdrop, reducing it to a Hollywood set of sorts. As a result, people like my wife simply don’t rate any consideration, not even where death is concerned. It does not matter that my wife, an anthropologist, inspired young people in Sierra Leone to become teachers and doctors or that she helped develop and build a well system so children there could have safe drinking water. It does not matter that she is a profoundly modest and kind human being whose friends adore her. Her qualities of humanity and quiet generosity do not matter either. My dear wife had to suffer for the most banal of reasons, because no one, from the police chief to the mayor to the city council and the business people, seemingly gave my wife, or anyone in a similar situation, a passing thought. There was no malice: it is just who they are. And that is dying the American way. It is just who we are.

In a little while I will go back into our small bedroom filled with friends and I will read to Kris, as we have done for each other for over twenty-five years. This morning I was reading to her from Saint-Exupéry’s The Little Prince when I came to the passage where the fox reveals the secret. It remains a secret only to those with closed hearts who, long ago, forgot that the riches we have always possessed are not the ones we hold in our hands, but are each other.

I think I have come to understand that the quality of a life lived is not determined by the contents of a person’s pockets but rather by what is contained in their heart. It is what someone has stood for and how they acted or not upon their humanity that finally informs. The fox is right, for what has always been essential is invisible to the eye and we Americans would do well to remember that.

Author note: After a brief conversation with someone at Carmel city council, I emailed a copy of this essay and offered them the opportunity to write a rebuttal that would be included verbatim in this volume. No response was ever received.