Robert Fulghum wrote the best selling book, All I Really Need to Know I Learned in Kindergarten in 1986. That book was so successful because he was able to clear out the fog of a complex society and point out the simple things of what it means to be human, things we all learned in kindergarten.
A couple of decades ago, I was in a conversation with our pastor. I think I was an elder of that church and something bad had happened, were one church leader or pastor had abused another. I came up with a very complex theological position paper of why what this other pastor had done was wrong. Then my pastor said something that stuck with me, “Mike, you’re making this far more complex than it is. We are talking about basic human decency. The way that one human should treat another that even a child understands.”
With all the chaos of our present world, one has to stop and ask the question of whatever happened to human decency? Human decency is where you treat another human the way that you want to be treated. Human decency is where you know better than to trash talk another human being, lie to them, where you don’t try to physically hurt the other, where you do try to understand the other person, where you would never judge someone based on the color of their skin, nationality, political orientation, religious orientation, gender, sexual orientation, and the list goes on and on. Toddlers know this. Toddlers know it is not good to be mean. They know it is not good to put yourself at the center of all things. They know not to hit others, steal their things, and that playing nice is more fun for all. As a child we knew how to be infatuated with daisy or a cat or a sunbeam coming through a window.
God, grant us this immaturity, the childish innocence to allow us to be decent once again.
This posting below is from a year ago. I am reposting it now for obvious reasons. I did edit out some stories about my personal family, not because those stories were not true, but because I made some people in my family very angry that I had shared those stories with the public. I did not grow up in a bad family and that is not what I’m saying. I grew up in a typical family in the south in the 1960s-70s. I’m saying that wholesale racism continues in the US, especially in the south and in the White House. Complacent racism is the worst. It is like the cancer you can’t see.
WHY I’M A RACIST
I’m going to tell you my story. Everything I say is factual. Others, family members, boyhood neighbors, etc. are appalled that I would call myself racist, when they don’t consider themselves racists, having shared the same upbringing. Listen to my story and you be the judge.
First, I will define racism, from the dictionary: Prejudice, discrimination, or antagonism directed against someone of a different race based on the belief that one’s own race is superior. I was tempted to expand this discussion to bigotry, to include discrimination based on other labels such as religion, national origins, and sexual orientation. But, for the sake of brevity, I will leave it with racism.
I was born in NE Tennessee and grew up in a small community of less than 1,000 people. There were NO people in my small town except for white “Christians.” I will say that it was a typical small town in the south.
The only time a family of color attempted to move to our small town was when my mother was a young girl. A black man and his sister moved into a small, porched cabin, not far from where my mom was living. Mom told me how the community was very upset (and this was in the 1930s). Quickly, rumors started in the churches that the two were practicing incest (no evidence to support that except that they shared a cabin). Everyone wanted them run out of town as soon as possible.
Finally, a group of teenage boys when over, kicked the cabin door in, dragged the man out into the yard. They were considering lynching them both as “God’s justice.” But instead, they staked the man’s wrists and ankles into the ground and then got a sharp stick and literally pried his eyeballs out of their sockets, blinding him for life. The couple did leave after that, because they knew that they would soon be murdered.
Mom says those teenagers were seen as heroes in the town. One of the teenagers, who did this terrible thing, was the town’s constable when I was a kid.
Also, when I was a kid, the ONLY name we knew for black people was the “N-word,” which I will represent with a capital N. I had no clue that there were other ways to talk of the black community until I was at least in high school if not college. We were taught that N’s were; very dirty, even nasty, lazy, immoral, scared easily, very dangerous, and very low IQ (a term Trump still likes to use). I’m sure that I’m forgetting something here.
The nearest towns with a black community were Kingsport and Johnson City, Tennessee. From the time I was a toddler, all black communities were called N-town. The cliché that my mother (and sometimes dad) would use, if we had to drive through such an area, was “Roll up your windows and lock your doors, we are driving through N-town.” That always scared me to death.
I have many memories about those days, but I will mention one more. When I was in middle school, I was very active with the Boy scouts, which was sponsored by the main Baptist church in town. Our leader was a man in his thirties (maybe forties) whose name was Chuck. He drove a GTO, and if I remember right, was known as lady’s man.
Every Memorial Day, we would join many other Boy scout troops from across NE Tennessee and camp at the big VA (which has hundreds of acres of lawn and a huge military cemetery) center in Johnson City. We would put American flags on the Veterans’ graves on Memorial Day.
One year, and I remember as if it happened yesterday, Chuck told our troop, “Boys, I just got our camping assignment. We will have to camp just next to a troop from Johnson City, which has Ns in it. I have fought against this. I know that you boys haven’t been around Ns but I had to serve in the army with them. They are all thieves (like Trump describes immigrants), and they will rob us blind. They also stink, smelling like ammonia or piss because they never take baths.”
So, Chuck made us lock up all our valuables in his car during the weekend, so that the Ns would not steal them. I will mention that Chuck, later became a supplier of pornography, alcohol, and cigarettes to his select group of middle school Boy scouts. I found out when I went to find him for some problem in camp and found him and his four favorite scouts sitting in his GTO—windows steamed up—all of them smoking, drinking, and looking at porn.
I will tell one more story and that is one of my classmates, in high school, wanted to start an official KKK club, as part of the school. The principal told him that he could not because the liberals in Nashville would not allow it as an official school club. But that he could start one as a private club and he would support his efforts. This friend tried to get me to join and I thank God that I had enough integrity, that even back then, I knew it was wrong. It is interesting but that classmate, the head of the KKK in our school, just contacted me to be his friend on FB. I declined.
I’ve visited my hometown many times over the years, to visit my mother. Each time I leave shocked that little has changed. Jokes about the Ns are common (and still the only name you hear for blacks is N). You can also hear the hatred toward blacks, gays, Hispanics and Muslims in so many conversations, and the reason they give for hating these people is because they, the one speaking, is a “strong Christian.” This makes me want to vomit.
I don’t know when I realized that I was a racist. I know that I had my first black friends in college. But I also know that I carried the fear of blacks well into my adulthood (not realizing it was part of that racism). I think the biggest thing that has helped me to see this, are my travels around the world. I’ve said before, it is really hard to hate someone or to stereotype them, once you’ve slept in their house, shared meals, and played with their kids.
Honestly, I still think there is an epidemic of racism in this country and those who are most racist, don’t see it at all. They hated Obama’s guts (not realizing it is because he is black). They think “Black Lives Matter” is crap. They don’t believe in the type of social justice that might favor minorities, to help make up (just a little bit) for the centuries of abuse and discrimination by us whites.
I pray often that God will help me to heal and change from this powerful upbringing, before my life on this planet is done. Mike
A while back I received a text from someone that they feared that cancer had turned me into an angry and bitter man. That was a bit painful to hear, yet I spent 24 hours soul searching about that. It is not true. I am no different than before, except maybe caring even less what people think about me and more driven to stand for truth.
I think this person (a Trump supporter) was responding to my showing clear anger after Donald Trump had spent 3+ years spouting racist ideas from his bully pulpit. In May of 2019 (and I watch virtually all of his rallies) he started his usual false narrative of how immigrants are raping our women, stealing our jobs, and bring drugs and germs to America when someone in crowd yelled that we should shoot them, and he laughed (I will try to post that below). He then had a four more rallies after that with the same hate speech, then on August 3rd, Patrick Crusius, a self-described Trump supporter, opened fire on Hispanic families visiting (legally) a Walmart in El Paso, Texas. He killed 23 people and seriously injured 23 more. Some of them were little children. All of them were innocent victims.
This really pissed me off. I heard Trump’s racist comments for three years while his followers were complacent. It troubles me mostly that Trump’s evangelicals were complacent. But I spoke up in anger as all decent human beings should have.
But this supporter was not troubled by Trump inciting such horrible racially motivated violence (clearly if he had not said the things he did, those people would not have been killed), but they were troubled that I said angry things about Trump.
I have the heart of a poet. I don’t write like a poet but I wish I did. I feel things deeply like a poet, both the incredible wonder of this world and things that piss me off (usually in the areas of human injustice or harming our planet). But to balance the voice I’ve given here to those negative things I want to briefly state the positive, which I deeply feel although I fail to say enough about.
I wrote about the feelings of isolation and trying to fight against it. After that post, Curt set up a zoom meeting with me and I talked his ear (and screen) off. Kevin came by for coffee. Jean called me (or maybe I called her). David, an old friend, called and we talked for well over an hour. Today Jerry is having me over for social distancing coffee and Diane invited me over for a social distancing interaction. Kristi (a mental health professional) invited me to chat. Lastly, my son Ramsey came home. It is complicated as he was tested for COVID-19 and until we hear back, we have to socially distance ourselves from one another. I am deeply grateful for those loving gestures.
So, no, cancer has not made me an angry and bitter person. My mother told me when I was in the first grade, “You’re not like normal children. You feel things very deeply.” I will continue speaking out against injustices, lying, and abusing this planet. I will also try to speak out more about the beauty I see in the universe and in people, more.
A Word about Writing:
I am still waiting for my editor to finish with Ristretto Rain. I will spend the month of June rewriting it for the final version. I’m still excited about it.
I am taking an online creative writing course taught by 5 best selling authors. I’ve learned a lot already, but one thing is that they have very different views on how to write.
I have now started two novels. One is tentatively called Narrow Places. The other one has been in the back of my mind and is tentatively titled, Eyan Bieyan; Retribution as a sequel to my Waters of Bimini. It picks up on one character, Bryan Rogers, and develops him into a Jason Bourne type Protagonist in an international thriller. I want to take the reader on a journey into the bowels of Islamic terrorism and the ambiguities that lie within. I am so deeply involved with this story I have to keep reminding myself that I’m not living Yemen right now.
Mike, the Lake Hermit
Footnote: as I was getting ready to publish his, my editor notified me that my manuscript it done. Now I have so many writing irons in the fire, that it will be glorious!
Someone once said to me, “So, you think you’re so smart.” I think it was in a social setting (reception) and I voiced an opinion on a variety of wide topics from medicine to history to geology and space exploration. I quickly corrected the person explaining that I certainly don’t see myself as smart. I see myself as a curious little boy standing in the midst of a universe of wonder and doesn’t know but wants to know the answers. It is in that spirit that I bring up this question once more, “Where, and more concerning, why are Trump supporters believing and passing on misinformation about the COVID-19 virus?” I really don’t understand how the consensus by the experts in infectious disease is not believed by this conservative group. Honestly, how did public health issues, the biological dynamics of viral infection spread, become a political issue?
I do understand why the unbelief in global warming became a political issue. The political right is well known to be pro-big business. This is not a conspiracy theory, but there is strong evidence that the funding for the misinformation about climate change comes form the fossil fuel industry.
So here are some of the messages I’m hearing from the Trumpers, the majority of whom are, sadly, evangelicals:
Mask do not help prevent the spread of the virus but may actually be harmful to the wearer.
The death toil from COVID is exaggerated for political purposes, to hurt Donald Trump.
China created the virus in a lab.
Democratic states had more severe COVID outbreaks because of their liberal ideas.
A good Christian’s trust God to protect them from the virus.
And, the most disturbing, the older people and those who are frail, are expendable and are even willing to die in order to allow the rest of us (them) to return to a normal life. In other words, the person over 70 is very willing to suffer and die from horrendous suffocation from the COVID infection so that I (they) don’t have to wear a mask, because wearing a mask messes up my hair. And they consider that a Christian position?
All of these ideas are clearly false. Yet, I’ve seen a parade of spokes people promoting these ideas, a couple of whom are doctors. But neither of these doctors have spent one second in a research project about mask or infectious disease. They both have a checkered past of making outrageous statements with a political agenda. On the other side, thousands of physicians and PhD level people who have spent their careers in virology, infectious disease and epidemiology refute these claims and do so with an unanimous voice.
So, I still don’t have my head around this phenomenon of misinformation from the right. I can guess but I haven’t seen the evidence so my guessing would only be the level of my own conspiracy theory. There is a narrative that big business has been trying to get out, that COVID is not serious or the death count isn’t that high, or it isn’t that contagious, and they have a clear motive, money. Big business doesn’t give a damn if everyone over age 70 dies from it, as long as their businesses and flow of revenues are not impeded. But is that what this is really about? If, there is a profound repentance due.
I have a backlog within the filing cabinet of my mind of dozens of articles I want to write. I put these all aside while I worked on my novel, tirelessly day after day. Now that the manuscript is in the hands of the editor, I have a window of opportunity to put some of these mental articles down in “ink.” Don’t be surprised if I do a lot of posting here for the next few days. I will, however, try and make these introductory type articles and limit them to one page. I still have a multiple page article to write, which is Part II of my City of God and will appear in a few weeks. Around that time, I will get my manuscript back from the editor and once again I will be consumed with my final rewrite for the month of June.
A few weeks ago, I did a video blog message about why I speak up here and in other social media sites on certain controversial topics. Many would call these “political,” although that is the furthest thing from my mind. I have no political agenda and would just as easy vote for a Republican as a Democrat if that candidate supported my underlying principles (which I will mention later). But the question that I want to raise this morning is why don’t others speak up? None of what I write will be accusatory in nature, but to raise questions for others to think about. I’m not the one to judge the reasons you decide to speak up or not.
First, I want to describe what my basic principles are, the things I think are worth speaking up about. While many others, including Christians, Muslims, Hindus, or atheists share these principles, for me they are intimately tied to my Christianity. I believe that life, human life and other life has intrinsic value because God created it. I believe that the material world is also part of God’s creation and therefore has great value. In respect to those first two statements, I believe in justice and basic human rights. No one deserves to be abused or exploited. I oppose racism, which is simply making assumptions about someone based on their race, religion, sexual orientation, national origins or any other surface marker. I oppose animal cruelty. I oppose damaging our environment, the nature of the world God has created. I am a lover of truth and those who lie should be opposed and I couldn’t care less of the liar’s political orientation. I oppose the valuation of wealth over human’s intrinsic value. I am an outspoken critic of Donald Trump and it has nothing to do with him being a Republican, but because he violates many of these principles.
So, I start with the premise that most people don’t speak up against violation of these basic principles and I want to discuss why, and I will mention a couple of special situations first.
Business Owner. I was a business owner once and I will be clear, in those days I would not speak in a public form on controversial topics. When I owned my business, I blogged on my site, Christian Monist and often was critical of evangelicalism. My purpose there was to agree with those who came and hated evangelicalism and pointing out that Christianity exist outside of that particular subculture and they could remain a Christian without being an evangelical. This was before the days of Trump, but if it were not, I would not share my opinions about Trump as a business owner. The reason is, there would be “customers” (patents) who would not visit our business because of my opinions, and I wanted their business. I will add, that while I would respect those customers, I personally would never make a choice of where I would patronize based on if they were Trump supporters or not. It would make no difference unless they constantly spoke of Trumpism rhetoric. I did stop visiting one barber in Anacortes because I went there twice, and she forced me to watch her favorite TV evangelist while getting my hair cut but putting a small TV right in front of me and telling me that I should watch this wonderful man and listen to his message.
Pastors: Pastors have a difficult row to hoe because their congregations, in most cases, are very heterogeneous. While he or she may share my same basic principles, they are cautious about speaking of anything that could be taken as political. I understand that. However, I do believe that some strive so hard to be apolitical, that they do not stand up for principles when they should. But there is a way to support those principles. For example, you can present the truth that refugees and immigrants are decent human beings, created in God’s image and deserving respect and dignity without ever mentioning Donald Trump and his racist rhetoric. I know that these pastors wrestle with this dilemma, but I ask, do they need to do more to combat racism, hatred, destruction of our environment and lies in these days of Trump? One of my old evangelical pastors now has a pro-Trump website.
Christian Organizations: I was curious that my old organization, The Navigators, seem to be quite silent. I still know several Navigators and they never, ever say anything about any of these topics. Even if there is something hideous like a school shooting or environmental disaster, they never comment. They actually have a policy statement (and I did not take the time to find it again link it here) that they are called to share the gospel and make disciples so they do not take social or political positions. However, with no opinions about human rights, the environment, justice, and truth . . . what is left of the gospel? Has it not been neutered? Once the salt has lost its saltiness it is worthless. I think the Navigators, as I remember my 14 years with them, is quite dualistic, seeing the universe as the spiritual and material and only the spiritual (as they define it) has merit to be considered.
I then come to personal choices. I know a lot of people who have made the choice to not speak up about these topics and they do for a variety of reasons. I’ve had this discussion with Denise as she is one of these no-speakers. For her, part of it is her public profile and is akin to the business owner’s dilemma. While she shares the same views as me on most of these topics, she would not speak of them in public, being afraid that it would reflect on her place of work. I get that. But she says that she is a private person, as her family members are, and they try to avoid making controversial statements. But when pressed, and she is normal and I am not, she thinks it is linked to her desire to be liked. She does not want to create enemies by saying things that some people find offensive. I think this is very typical. But I challenge this idea without having the confidence to say my perspective is correct.
Tied to this last view is a special consideration of Christians. Christianity hasn’t always valued being nice. However, during the Victorian age of England (last half of the nineteenth century into the first quarter of the twentieth) protestant Christianity become more and more focused on the external traits and, what some historians call, “The Cult of Niceness,” where it become paramount for Christians to appear nice or to not be troublemakers. But I ask, should we be less nice? I’m not talking about political viewpoints, but the essence of values such the issues I’ve raised. I think we must speak up for truth even if we loose friends.
If you have ever worked with a professional editor, you know the process can be brutal and cuts to the heart of you. I have mentioned before that even John Updike (a fantastic writer and one of only four of which to win the Pulitzer Prize more than once) described in his last book Endpoint, how his editor dissects and changes every single sentence he has written. He had a love-hate relationship with them.
My editor is my friend. Not literally as I only know him professionally, but figuratively. He is a book editor for McGraw-Hill publishing and we contract him on projects at Mount Erie Press. He is my friend because he is an independent expert that tells me how to make things better. I am deeply committed to making Ristretto Rain the very best it could be. Today, the editor said the following: First, the story is definitely worthwhile. It has a nice feel in its simplicity and atmosphere and will be easy to digest once a few storytelling fundamentals are addressed.
The fundamentals he is eluding to relate to my Achilles heel in writing, being too wordy. I am a writing hypocrite as I love to write long exposés but don’t like to read them. It is painful for me to cut material, which I thought was brilliant. But extraneous material can distract from the flow of a simple story.
While I have taken creative writing courses in college, I have signed up for a new one and I’m in the middle of it now. Writing means so much to me, one of the last interest things that brings me great pleasure. While I’ve never had the dream of earning a living from it, I do hope to reach a level of writing that will hold readers’ interest. So the work continues to improve.
My new target date of having Ristretto Rain on the market will be July, after this major rewrite. It will be a good novel and I am committed to making sure that the reader will not be disappointed.
Housekeeping: The article below, while having strong Christian overtones, is not necessarily a Christian article, meaning a subject that only Christians would be interested in. It has a lot of psychological questions, which from my perspective is the same as spiritual (look at the Greek roots to Psyche and Soul, they are the same).
I have grappled with how to handle this space. I seriously considered breaking it down into three separate blogs. One part is a relic of an old blog, which I had for almost ten years, under the title of The Christian Monist. It was basically a post-evangelical site and most of my visitors were from that perspective and we understood each other quite well. My intention was to give one last respite in someone’s journey from evangelicalism into atheism. I wanted them to know that they do not have to throw the baby out with the bathwater (and the bathwater is deserving of tossing).
Then came the avalanche of the dear and caring friends at my diagnosis 14 months ago, who visit to see how I am doing with my struggle against cancer, and to check now and then to see if I am still on the top side of the sward. I am profoundly grateful for them. However, some of them are not interested in or used to my Christian-philosophical discussions and for a few that paves the way for misunderstanding and even hostility toward me, especially from the present evangelicals.
The last part of this blog is about novels and writing, which was the primary purpose of this space, before I got sick and let my illness topics take up occupancy. I have not done posting about writing of late.
When I went to investigate how to extract these three groups from this single blog page, it seemed like it would be a huge mess. I would have to force visitors to choose from the three sites, and knowing me, I would post an article on the wrong site. So, for now, I will leave this unholy blending here and I will always try to label things as Update (which is about my struggle with cancer) and Ramblings, is where I go off on any topic that has come to the forefront of my mind that week or day. However, I have added a new tool and will soon be a group of video messages in the side bar about what I believe or my theology. I do this to try and stop those who feel that they must write me private e-mails to argue with me about theological things, especially criticisms I have voiced here about evangelicalism or the church. Sometimes they frankly write to tell me that I’m going to hell because of the things I’ve said. If someone questions my Christian orthodoxy, please go to the video. I will do my best to answer your question there, and if I don’t, please don’t send me private e-mails to entice arguments because the videos are the best I can do in explaining my positions. I have never had thick skin, but it is worn even thinner after this struggle with cancer. I have a hard time dealing with people who write to tell me that I’m not a very good Christian, as compared to themselves, or that I’m going to hell. I have an equally hard time with people who suggest to me that I’m not handling my cancer correctly. But, with that said, I am deeply grateful for the vast majority of those who come here and get something out of it. I am even more grateful for those who are concerned about my health and keep Denise and me in their prayers.
Palpating the Edge of Trial’s Boundary
It is a common cliché within Christian circles and virtually all parts of our society, that you will not be given more than you can handle. It is loosely based on the Bible verse found in the book of 1 Corinthians 10:13 which says exactly the following from The Message translation:
13 No test or temptation that comes your way is beyond the course of what others have had to face. All you need to remember is that God will never let you down; he’ll never let you be pushed past your limit; he’ll always be there to help you come through it.
I seem to remember a Hindu telling me that there was a comparable verse or parable within Sanskrit, although I do not remember what that was. All Christians don’t think the same and I’m sure that’s true for Muslims as well, but some of the Muslims I knew and spent a lot of time talking about religion and philosophy would say that God will prevail and save you from trial, unless he doesn’t. If he doesn’t, it is because you deserved the destruction you received, based on your or your family’s sins.
It is always easy to write articles or to give mini sermons that confirm what people already believe. But that is not my nature. I am a scalawag. I like to challenge what I think and what others think. This does not win me a lot of popularity contests where conformity is king. Sometimes my writing generates this hate mail, as mentioned above, especially if they perceive that what I said conflicts with their religious or political dogma.
So, as I approach this topic, I will not simply assume that our understanding of this principle, that nothing will be given to us above what we can handle, is rightly understood or true.
First, I want to look at this cliché to see if it is rightly understood. In The Message translation of the Bible (by Eugene H. Peterson) Dr. Peterson sees the original Greek text as saying that it is a trial or temptation that will not be beyond the limits of what we can handle. I looked up this word itself and the Greek root is close, and is the same word used for Jesus’ temptation when he was in the wilderness. That major temptation was for nutrition (food and water) and power. Since the former is more objective than power, I will stick with nutrition as my example.
Considering this passage in 1 Corinthians, it is first stating that we can take comfort knowing that we are not alone, that others have suffered as much or more in the trials they have faced. I have no qualms with that part of the verse and history supports that. However, getting into the later parts of the verse, it becomes more complicated.
If we looked at the one area of temptation of nutrition, from the reading of that verse, you could conclude that God would never allow starvation from food or water to his faithful servants, that you would physically survive until water or food comes your way. The problem is, from history, we know that is not true. I could give thousands of examples of devoted Christian men and women who starved or thirst to death within history. This happened in times of war, times of persecution, and through accidental abandonment, such as shipwrecks. Some of my Muslim friends would explain this as they had it coming. Some of my Christian friends would explain it that the ones who starved didn’t have enough faith to trust God to save them. . . or maybe God had some higher purpose in their brutal deaths, such as teaching someone else something trivial.
The best example that comes to mind was Lt. George W. De Long. He was a profoundly devoted Christian man who led an expedition to find the Northwest Passage on the USS Jeannette in 1879. They, however, got caught in the ice for two years. In his diary, he quoted this same verse from 1 Corinthians and told his men that God has given him a promise that he would save them from hunger. I hate to give away the ending, but they suffered slow and horrible deaths, even the last survivor eating his own arm.
Simply, we have three conclusions to make. The first one is that the Bible isn’t true, or if it is God’s word, he lied. The second one is that the thousands of faithful people, like Lt. George W. De Long, failed in their faith, or thirdly, that we have misunderstood the intent of this passage. While I suspect that most of my Christian friends, especially the evangelicals, will take the second position, I really think it is the last one which makes more sense. I mean really, if Lt. George W. De Long was not a faithful servant of Christ, I really don’t know who is.
I wish I could give a reasonable explanation what the verse really means but I won’t for two reasons, 1) it would take a lot of space and 2) I don’t really know. But I do think the verse was meant as a general statement in the same way I would say to one of my kids, “I will never let anyone hurt you again.” While I may mean that and the statement gives comfort, I know the limits of what I can do. Not that God is limited, but his willingness to intrude into history is restrained by his own volition. I believe that he does allow cause and effect play out in the wonderful universe he has created, although some of those consequences are not pretty and reflect the brokenness of this world.
Finding the Boundary in the Days of Covid-19
Putting the above stated conclusion in practical terms I will say that as we face trials, there is real mortal danger. While God will surely comfort us and may intervene, he may not intervene. Lt. De Long assured his men, who had not eaten for weeks, who were sleeping all exposed in -40 degrees weather, and the nearest settlement was 1,000 miles south in Siberia, from that verse that they were safe and no mortal harm could come to them. I wonder how many of those men lost their faith completely as they drew their last breaths.
So, what is this danger that we face?
I used to think that if I faced enough stress that I would “loose my mind” or “go nuts.” A psychiatrist friend of mine explained that it is highly unusual for anyone with no prior history of mental illness to have a psychotic break (professional name for “going nuts”) from stress after the age of about 25. Depression, anxiety, or panic attacks? Yes, that could happen. I think the biggest mortal danger comes in two forms. One is the indirect way where our stress ruins us so much that our health fails. The second one is where we take our own lives.
I have been candid that I seriously considered suicide a year ago. It was because the suffering I was experiencing was unbearable and I felt alone in that suffering. I can’t even begin to describe it, no more than could I adequately describe the Grand Canyon to an Eskimo who has never left the permafrost. The only thing that stopped me was the promise I made my family, that I would fight this cancer to the end.
Before I move deeper into my own story I want to say, this isn’t meant to be about me, but it is all of our stories. Most people are living under some type of COVID-19-world stress. I only share from my perspective because that is what I know the best. I will also add several caveats based on how I’ve heard some people respond when I start to share difficult things.
The first of these, just like the 1 Corinthians says, yes, I know that I’m not alone and that some people are suffering more than me. I’ve heard horrible stories such as where someone lost their job, their husband got COVID-19 and dies. No one will pick up his body and they are also taking care of, in the same house, their elderly mother and three grandkids because their daughter is hooked on drugs and this caregiver has breast cancer that is going untreated due to the pandemic.
I also know that there are people who come here to this blog who are suffering more than me. Besides some medical problem with profound symptoms, that they live completely alone. At least for me, Denise does eventually come home at night.
The last caveat I must add is that yes, I am grateful for the good things. I am extremely grateful that I have three acres and live on a lake. While I don’t see Denise nearly as much as I would like, I am grateful that I have her. I am also grateful for my dog who keeps me company. I love the beautiful Pacific Northwest. I am also extremely thankful that I’m not suffering like I was a year ago, especially that I’m not on dialysis. So, I do look at the bright side. With that said, I am also keenly aware of the dark side and I think denying that is not healthy for me or anyone. If you live with magical thinking, where you believe that you will be spared before being stressed beyond your limits, then you don’t plan or prepare for the inevitable. It is like those who say God will protect them from COVID-19, therefore they do nothing to follow sound public health recommendations.
If I were to design the most challenging mental trial for myself, I don’t think I could “improve” on the one I’ve been handed. Because I was almost taken captive by the Taliban in NW Pakistan in 2006, I often think that being held hostage by them, where I’m deprived of food and water for days and must experience frequent mock beheadings, as bad as it gets. Maybe. However, there are days I would change my present situation for that. . . just for a “change in scenery.”
But without going into the grisly details once again I will say that going from a state of excellent health with many plans for my life and a very productive full-time profession to, overnight, being slammed into a hospital bed with tubes in me and an attending physician who was telling me to prepare to die as she was not sure she could save me, was a shock in the least. Then to endure nine months of such a level of suffering that I never thought a human body could survive something like that, fighting the whole way for the sake of my family, and then a long and slow recovery. I do feel much better now thank you, but with lingering troublesome quality-of-life robbing symptoms and the evil cancer still inhabiting my marrow, trying to decide if it will give me many years of peace or crawl out and finish me off almost any day. Then, after fighting so hard to come back and to not have the results I was praying for from the stem cell transplant. I also fought hard to build my energy so that I could reclaim my profession and my patients, but was totally blindsided when I went back to work and was abruptly told my career was over and I was being laid off; that alone was almost more than I could bear. Then to have a glimmer of hope in creating a new clinic and have COVID-19 come out of the woods and rob me of that, like a masked bandit that it is to me, and all of us, is heart breaking.
The final blow for me is this extreme isolation that we are all familiar with. Because of my cancer and bone marrow transplant I can’t be within six feet of any human being, save my wife, who works 11-12 hour days. Nope, I am not looking this morning for pity, but I could not design a more challenging mental trial than this. Are you sure someone my age can’t go mad?
Do I have suicidal thoughts now? Not really. The tipping point of keeping me on this side of the dirt is my family and the fact that I’m not suffering as bad as I was, but that suffering is still in my shadows as a ghost of what was… and could be again.
The boundary of my trial is not taking my life by my own hands but having the will to live. In fighting cancer, the will to live is paramount. Many patients have committed suicide by cancer, simply by not following the plan. I won’t do that, but I respect that place of mind to the point that I must act now to steer away from it.
Like most homo sapiens, I start my day in bed. Each morning I lay there trying to think of a reason to get up. I really have none, but to engage in this mental war. I ask myself what purpose do I have? Am I only defined by the oxygen that I consume? The only answer I can find is an abstraction, God created me, therefore I have intrinsic value. I get up, I listen to the horrible news as I make my breakfast and then try to get on the trails before anyone else does. If someone beats me there, I have to return home to my isolation. After two miles with Greta, I come home to exercise, to practice archery, to write, to kayak, to fly fish for trout, to do home chores and repairs. I have to tell myself to keep moving and don’t stop (I actually feel better physically when I’m moving) for a rolling stone gathers no moss of hopelessness. I am thankful for Curt reaching out via Zoom, Jerry whom I occasionally call, Jean and Diane who have called, Kevin who came by keeping six feet away, but having coffee, and a couple of Zoom meetings with my kids. Otherwise, I have no other human contacts except of course Denise when she comes home but exhausted from a day with people.
Some have asked me, “Do you ever pray?”
What the hell do you think? Is that a serious question or sanctimonious exercise? I have a connection, like a Bluetooth earpiece, directly to the heavens where I constantly plead with God for mercy, day and night. And to suggest to me that my cancer has turned me against God… how profoundly ridiculous! I am on the tag team with Jacob and we wrestle in the dirt. The intimacy on the wrestling mat is greater than that on the lovers’ bed.
So, I depart from my story as not to bore you, but to ask how are your trials? I write this about all of us. Have you palpated that dark boundary of your limits and you know what lies there? What are your mechanisms of life to steer away, to keep in the clear of losing your freaking mind?
On a positive note, after going six weeks without labs, my kidney function tests are still stable, awful but stable, with a GFR of 22, where normal is above 60 and dialysis starts at 15. The anemia is slightly worse but not worth worrying about.
Looking at the cancer, the evil proteins (IGG Lambda light chains) are slightly less, which is a good thing. The fact I skipped chemo and then switched to a new one could have allowed these dangerous proteins to rise, but they didn’t. They are slightly better.
With a direct look at my cancer via blood tests (the last were done in September) still shows a minimal amount (M spike = .1). This of course could be much worse. However, my cancer load has never been high, just that it did terrible things like killing my kidneys by producing the evil proteins. Also, our prayer for the bone marrow transplant was that there would be no trace of cancer (30% achieve this end point called stringent remission) and unfortunately, that was not my outcome so I’m still considered in partial remission. We will do a bone marrow biopsy next month which is the most definitive test of the extent of the cancer. My prayer that less than 10% of my bone marrow has cancer, that is considered remission. If it was much higher it would be that I would be near a crisis point.
We buried my dear aunt Helen this morning, who was like a mother to me. I say “we” while of course I could not go to Tennessee to attend. She had a good life but it is still painful to say goodbye.
I just went six weeks between tests and seeing my oncologist, which is the longest since I’ve been sick. I was getting labs every other day, then once a week, then every six hours (after my bone marrow transplant) then weekly, biweekly and now this long jump. The space between was defined by the fact that I’m now doing chemo at home and that my kidneys have been stable, horrible, but stable.
I only have a preliminary report from yesterday and it seems my kidneys and anemia (or lack of) are still stable. I will have those numbers tomorrow. We also got tests to measure my cancer. Things are going much better with this new chemo from a side effect perspective, but if it is not controlling my cancer, then it is a losing situation. This first group of tests will not be definitive, but will start to look for a trend. If they are getting worse, then I will need to move to a new chemo by summer.
Speaking of summer, I was due to go back to Seattle for a 1 week comprehensive workup at the one year mark since my bone marrow transplant. However, they called Monday and canceled that (due to COVID). So I will need to try and get those tests done in Anacortes.
So, please pray for good numbers on my tests.
I got my first communication back from my editor yesterday, regarding my novel Ristretto Rain. I was hoping so much that he would have nothing but praise and it could go straight to the presses. However, he was impressed with the story but suggested that I do yet another rewrite to eliminate some of the expository narrative. This was profoundly discouraging, but typical. It isn’t just for me and my writing. I know that I’m still a lightweight and learning.
One of my favorite authors, John Updike, in his last book, Endpoint, described the brutal process he went through when he submitted his books to his editors. He described the back and forth until they had rewritten every sentence he had written into a strange language that they only speak on Mars (my paraphrase). He was a great writer and the winner of many prizes including two Pulitzers yet he had to endure this process.
At first I was discouraged and was tempted to throw in the towel on not only Ristretto Rain, but all my endeavors at writing, even this blog. But then I thought of how much I enjoy the creativity of it and to loose it would mean me losing the few parts of me that are left.
I want to be humble and I want to be a learner even at my old age so I decided to endure. In a rebellious moment, rather than throwing in the pen, I decided to start my next novel (which had been lurking in the back of my mind). It is a novel, with a strong autobiographical thread about a man my age with a new diagnosis of cancer. Haven’t decided to make it Multiple Myeloma or something else. He takes a course in his life that . . . well, you will have to wait and see. But I started with the following rough draft while I was sitting the the Merle Cancer Center waiting to see my doctor. Remember it is only a rough draft
Before I post this piece, I want to say something briefly about this space of my blog. I may say more later. I have a strong desire for honesty and candor. I come here to write about reality, not idealism, whether it is Christian idealism or human idealism. From my experience, I know that some people, I would assume with good intentions, come here with a critical eye into my private world (which I open for them). I haven’t had many such communications, but several that suggest that I’m not handling my cancer well, especially for a Christian, or the most common, I’m not a real Christian based on what I’ve written, or I don’t have a good relationship with God.You get the drift. My atheist and pantheist friends (or whatever philosophy of life that you follow) are kind and silent. But I want to have the freedom to write honestly without this second guessing. I did the same when I was an evangelical. Now I call it unorthodoxaphobia, or the fear that I may not be the ideal Christian that they had hoped for. But understand, that is not my goal or agenda. My goal is candor. If you can’t come here without feeling sorry for me, or feel that you must warn me that I’m going to hell, please go away. My life is too short for such strife.
I will keep writing here as long as people are coming. For some reason that I cannot explain I’m still having about a thousand visitors per week. I know it isn’t the quality. Maybe it is is the pity (wink).
Rough Draft, Opening Paragraph of Narrow Places
The air of the cancer ward was gelatinous; thickened, and barely penetrable. It took an effort to cut through it, to push it back and to the sides in order to create space through which I could walk, live, or breathe. The gravity in the waiting room there was stronger than elsewhere, for it pulled me into the hard-plastic seat making it difficult to stand to follow the nurse when my name would be called. The gravity was continuously tugging at me there, pulling me down as to lure me back into the earth.
The essence of the air was fear. It was an all-encompassing worry, thickened, yet isolating and deeply personal. I could see others within this gelatinous mass, but their images were distorted within the periphery of my isolating concern. But they too must share this dread as I could see it in their eyes, blurred through the thick hanging air and my lack of focus on them. The people were also talking as I could see their lips moving through the viscous air and at the boundary of my field of vision. Were they talking to me? I didn’t know, nor in that moment did I care.
The only thing I thought about was the meeting with the oncologist. He would soon walk into the exam room, me seated on the exam table, with his imaginary sack slung across his shoulder full of numbers… somewhat like Johnny Appleseed. He would pull a handful out of the burlap sack and toss them to me, and the seeds would take root in my heart as relief, elation, or the early sprouts of a coming nightmare. Those numbers would decide my fate or tell me how fate has decided me. Will I continue to recover or will I start this march into unbearable suffering once more and a certain death. But this is just one of a thousand such visits and I wonder at times, how much can the human heart bear?
Conversations, either online or in person, are typically where my ramblings are conceived. I had such a conversation recently with someone who thought the COVID-19 closures of our society are ridiculous. His point was, we are all adults and therefore we should have the freedom to make our own decisions about our health. In a Darwinistic way, you could say what he says makes sense, that those who take the greatest risks are most likely to get sick and even die. I pointed out to this man, however, that if he gets sick, he will go to the hospital and then all these teams of caring frontline people will have to put their lives and the lives of their families at risk in order to save his. Not only that, he will be exposing a lot of people along the way, including his own family and the public. But his response took me by surprise. He said he did not care if he was responsible for killing everyone in the “healthcare industry,” because he hates them all (which, I guess, includes me).
The conversation above ended at that point, so I do not know what this man has experienced in his life that created this level of bitterness toward our entire healthcare system. But most people agree that there are problems within it, especially here in the US. Maybe, in these days of the COVID-19 global pandemic there is more benevolence toward our healthcare providers than in more typical times (save this one man I talked to), but we do know that there are problems and those problems will come to the surface once more when this is over.
There has been a copious amount of material written and views expressed about what is wrong with the healthcare system. These views come from the perspective of a variety of people including politicians, physician groups, patient groups, insurance companies, and others. They each carry a perspective and an agenda. It is like the proverbial story of the group of blindfolded people examining an elephant and describing what they feel.
I think I bring to the table a unique perspective as having a 38-year career in the practice of medicine as a PA, and now a high consumer of healthcare. Before I was sick, I rarely used the healthcare system as a patient and took no medications. The other thing I bring to the table is that I am very candid. I say things that are true, even if people do not want to talk about them. But with that said, the main point I am going to make in this article is not “The” problem with healthcare, but one of at least one hundred issues that could be raised.
The Dark Matter of Medicine
The brightest astrophysicists have no clue what dark matter (or dark energy) are, however, these entities make up 95% of the universe. But they do know it is there, mostly by its gravitational fingerprint on everything else. Modern medicine has its own version of dark matter, and that is the great complexities of our human body including the vast number of things we know and the humble admiration for the even greater things we do not.
The science of medicine was built on the shoulders (to loosely borrow an idea from Newton) of giants in the field of biomedical research. We have come so far in the past one hundred years that it is mind boggling. It was less than 100 years ago when penicillin was discovered, which revolutionized medicine at that time. However, seeing an area of bacterial clearing on a petri dish around mold (the essence of how penicillin was discovered) is at the level of a middle school science fair. We are light years beyond that now.
This profound knowledge of biological systems also exposes the vastness of the biological universe that we still do not understand and that is the real dark matter of medicine. As far as we have come, we are only standing waist-deep on the shores of the Pacific Ocean looking out into the vastness of the abyss. This has never been clearer to the public than during the COVID-19 pandemic, when there is frustration that we do not know more about this novel (new) virus, and yet, amazed about how much we do know about viruses in general.
We have long ago gathered the low-lying fruits of the apple tree (such as discovering penicillin) and the cost of discovery and the complexities there-of grow exponentially going forward. This is one of the major economic forces in medicine, where the cost of a medication, which requires a one-billion-dollar investment and a decade and a half of time to finally reach the market. Since insurance companies have to carry the brunt of this increased cost, they cut corners in other areas, such as paying for the time a provider spends with the patient. This indirect facet frustrates both the patient and the provider, but that’s another story.
I want to summarize how this issue of the dark matter of medicine directly impacts the practical application of medical care and the healthcare system from the provider’s and patients’ perspectives.
Providers Perspective. A high school friend’s uncle was a physician. This was 1973 and this uncle was still practicing, and I think he was well into his nineties. He started his medical practice around 1905, at the tender age of 20. In those days, premed and medical school could be abbreviated because the pool of knowledge in medicine was vastly smaller than today. Not only could he start his career without a residency (and without debt) but once in practice, making a diagnosis and treatment was relatively simple. He could see a patient in ten minutes and focus nine of those minutes on more social aspects of the visit such as asking the patient about their family, their work, and even hobbies.
It was also much easier for a provider to make a good living one hundred years ago than today because you could see forty or fifty patients per day as the diagnosis and treatments were so simple and the documentation of the visit, if any, were reduced to a one sentence scribble. The costs of running a practice were vastly lower than today as well. I will not diverge into another facet and that is the laborious problem of documentation in medicine, to satisfy the malpractice lawyers and the insurance companies. That is a facet within itself.
Even fifty years ago, seeing a patient was like someone coming in saying their bike was not working right and you have 15 minutes to figure it out and fix it. But now, it is more like a patient arriving in a very complex Boeing 747 and tell you that it isn’t working right, and you still have only 15 minutes to make the diagnosis and treatment plan. For example, in my area of medicine, fifty years ago a patient would go see their doctor and say they suffer from headaches and their doctor would say, “You are not handling your stress well. Here’s a stress pill.” However, we know vastly more about headaches today. A good headache clinician knows that there are about 110 different headache types and it takes time to go through the history very carefully and examination to arrive at a proper diagnosis and treatment plan. This plan will be based on the complex pathophysiology of headache that involve deep brain structures and a complex cascade of events that play out on the outer membranes of the brain.
But I want to focus on the part of the dark matter which, like in the astrophysics counterpart, is the vastness of what we do not know about disease and treatment.
I first entered the world of healthcare when I took a job in a hospital while I was in college studying premed. One part of the healthcare provider (used in the broadest sense, including nurses, nurse assistants, and etc.) culture I observed was that patients are considered as not knowing much and have the tendency to be hysterical. This same attitude continued to be part of my own medical education, both in the PA program I was in and with the medical students that I shared space with. It is a running joke about how stupid and hysterical patients can be. This attitude made me feel uncomfortable even then.
I had one professor during my PA school experience that was the exception to this culture. He was a psychiatrist and taught our psychiatry medicine lecture series. He was a nice guy and was the spitting image of John Denver. He started each class by telling a fascinating patient story to illustrate a diagnosis or issue that he wanted to discuss that morning.
One day he came in and sat on the front of his desk. He smiled and then started to speak, “The Internal Medicine Clinic (at the University of Kentucky) sent me a patient one day with the diagnosis of ‘delusions of being a cat.’ I scratched my head as I had never heard of such a thing, although I guess it is possible to have delusions about anything. This well-dressed lady came into my office and took a seat on my couch. I asked her, ‘So, what’s going on,’ to which she replied, ‘I’m coughing up hair balls.’ ‘Really?’ I asked. Then I asked her, ‘Can you cough up one for me?’ She answered, ‘Sure.’ I handed her a box of Kleenex and she started coughing and then spit out a wad of long red hair. It was incredible! I immediately sent her to our pulmonology clinic, where she was eventually diagnosed with a bronchial teratoma, which is a type of tumor that can grow hair, fingernails, or even teeth. Her doctor had never asked to see the hair balls but had assumed that she was hysterical.”
The point that this psychiatrist wanted to make was to treat patients with respect by listening to them and believing them, even if you can’t explain their complaint. While their self-diagnosis may not be correct, their observations of something being wrong is accurate. Because the patient is not medically trained, they may not know the right terminology or understand the biochemistry of our bodies, but most the time their observations are based on something real. He also pointed out that it is quite rare that a patient is truly hysterical and just makes up symptoms.
One of the rabbit holes I refuse to go down, when it comes to my own health, are the “what ifs.” What if I had gone to see my doctor two months earlier? I did go in four months before I became ill and asked specifically for a Multiple Myeloma work up, which was done and was negative. If I had gone in as soon as I had symptoms, I would still have Multiple Myeloma but probably not the degree of kidney failure. I will try to explain why I did not go in. But this is not about me and my story but the much broader point that I am trying to make about this one facet of health care.
March is Multiple Myeloma Awareness Month. I saw a sign one day point this out and then listing the ten signs and symptoms of Multiple Myeloma. Oddly, I have never had one of the ten. That is why this was so confusing for me, even as a medical provider. My early symptoms were all neurological, coincidentally the field I have spent my entire career in.
At first, I thought I must have ALS and I was in no hurry to see my doctor because I knew he would only send me to the neurologist. It would take three months to get in to see the neurologist and then he would end up telling me I was going to die and there was nothing he could do about it. So, I told Denise to prepare to become a widow and I continued my life the best I could, working as hard as I could in my own clinic and taking care of our house in case I was gone.
My neurological symptoms continued to spread from my motor system into my autonomic system. Besides twitching and myoclonus all over, I started having difficulty swallowing and defecating. But the strangest one, which I still have although less intense, is that if I coughed or sneezed I would have about 30-50 places in my body go into spasm. They are clearly visible to the observer. However, I never developed the muscle wasting that you typically see with ALS. This created a very confusing picture for me and for all my medical providers since.
I will be honest and say that my hesitation about going to my doctor at the early point was that I knew that these symptoms didn’t fit any neurological disease state and I was afraid I would be labeled hysterical or some kind of whiner. Then I developed a new symptom, a sudden onset of severe neck pain and numbness down my arm. For that reason, I went to see my doctor.
When I saw my doctor, I told him about my neck pain, but also talked about my bigger problem of the neurological symptoms. I told him that if I forced a cough my entire body goes into spasms and asked if he wanted to see it. He said no. Then he focused on my neck pain and told me that my neurological symptoms were “stress” related to my neck pain. I knew better, but it was what I had feared.
To make a long story short, he did order a CT scan for my neck and to get a CT scan, over the age of 60, you must get renal function tests. My renal function tests came back extremely abnormal and I was sent from radiology directly to the ER and then to a telemetry unit at Peace Health in Bellingham.
Since that time, I have met countless medical providers who had no interest in seeing my twitching or spasms (which are impossible to fake) and have hinted over and over that either I’m making up the symptoms (hysterical) or they just shrug their shoulders and don’t want to talk about it. But these neurological symptoms are so severe, although slightly better now, that a year ago I was becoming suicidal (considering all the things I was facing, but these 24-7 neurological symptoms being the worst).
It wasn’t until I went to the Seattle Cancer Care Alliance did anyone ask to see the twitches. It was a PA in the bone marrow transplant unit. She was impressed and confused by the physical signs that no one could fake. But before that, and since, I’ve spoken to at least ten physicians who have no interest in seeing these twitches or talking about them, and if I keep bringing it up, they suggest I’m being hysterical.
I have read every study published anywhere in the world on neurological symptoms of renal failure. I found only one paper that presented three patients who had renal failure and this type of twitching all over their bodies, but all three also had seizures, so it was not the same syndrome. But that paper confessed that no one knows why neurological injuries can happen during renal failure and that it could manifest in ways that have not been reported.
My point here, is that there is a problem when you teach the medical providers that they know everything about medicine and anything that does not fit within that vast knowledge base, isn’t real. I hope that I knew better than this when I was a medical provider. I tried my best to listen to my patients and take what they were saying seriously. I even wrote an article for a national magazine back in the nineties on this very subject, titled, No Silly Symptoms.
I remember one of my patients who had a rather complex group of symptoms that I could not explain, nor could any of the doctors she had visited. However, I kept telling her that I think it is real, but it is something that has not been described yet in the medical literature. During this time, she visited the ER in Bellingham and there the physician told her (once again) that she was just hysterical, and she was not having the symptoms she was claiming to have. She told him, “Mike Jones believes they are real” to which she said that he replied, “Mike Jones is nothing but a PA and an idiot.” I didn’t know the man, nor did he know anything about me.
But this attitude of out of sight out of mind, or if I didn’t study it in medical school, it isn’t real, creates a lot of dissatisfaction among patients. It would be so much better for a provider to say something like, “That must be terrible. I don’t know what it is, but I will do some reading to see if I can figure it out. If I can’t, I would be happy to send you to a specialist and see if they can figure it out.”
This change in our healthcare delivery culture requires the patient to not demand simple and certain answers but to understand the limit of our medical knowledge without thinking the provider is an idiot or does not care about them. It also requires the provider to understand their own limitations and to drop this preconceived idea that most patients are dumb and hysterical. It means listening. It means looking at the signs (the visible manifestation of symptoms) and taking the patient seriously and be honest enough to say, “I don’t know” and to be motivated enough to seek answers by study or referral.