I have not done health update in some time, basically because there was nothing to update. I did mention a month ago (I think) that one of my labs hinted at a possible resurgence of my cancer, but others that did not.
This morning I received the results of my most recent lab tests, and now there is no question my cancer is surging again.
The good news in this is that there are still several treatments available. There could even be a cure here now, but there has not been enough time to prove that. But if not here now, within years. But can I last long enough to benefit? My immediate response is to schedule an appointment with the Cancer Care Alliance for establishing our next step.
The bad news, there’s a lot of bad news, but the most pertinent is that I have done so well on my present chemo, from a side effect perspective. It is an oral capsule and the side effects have been minimal. The next step will be weekly IV therapies.
I always feel guilty when I talk about feeling sad, etc. The comment that I give myself via self-talk, and others have said, “Oh, others have it much worse.” But those words have never consoled my soul. I even felt guilty about that. Then I heard a Ted Talk by a psychiatrist (I think it was about depression during COVID) who made the comment that the worst thing you can say to someone who is suffering is, “It could be worse,” or “Look at the people suffering in war of famine, you’re lucky in comparison.” The psychiatrist showed that such empty words are virtually saying, “Your sadness doesn’t matter.”
Before I got these lab results, I have been feeling depressed. Too convoluted to explain here. As the example of what not to say above, yes, I know that I’m not alone and some, even here, suffer from depression much worse.
There is a verse in the Bible that says, “Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.” (Proverbs 13:12). In my case, and others may relate to, is that I’ve worked so hard to stay well and to get better. I cannot describe all the hard work I’ve done in study, diet, supplements, exercise, taking horrible drugs, and the list goes on and on. It feels like the reward . . . is becoming sicker. But I know that life is not fair. I wish that wasn’t true.
I wish that those who do horrible crimes go to prison and those falsely accused go free. I wish that those who were peace-loving poor people would not be swept up in horrible wars, incited by the rich and powerful. I wish that no one would have to suffer the ills of cancer . . . or any disease.
The emotion of sadness that comes with cancer, for me, is the loss of the future. Just six months ago, the word future was clear in my mind, expressed in years or perhaps decades. Like in the scene from Back to the Future, where Marty’s family is becoming translucent in a photo, times like this, the word future is fading and that breaks my heart.
Yes, I know about those less fortunate. I’ve seen the two-year-olds at SCCA who are in this same fight. Is that fair? I’ve worked with war refugees, where entire families were living in simple tents on soupy cold mud. Dinner, a plate full of vitamin enriched porridge twice a day and no medical care except what I could supply during a brief visit. I pity them as I should.
I ask for prayer that our next step would be clear and that my cancer would respond again. Pray for Denise and my kids. Thanks, Mike
I know that I have at least a dozen people who come here that were former patients in our headache clinic. It is with great sadness that I must announce that our last glimmers of hope to resurrect such a clinic now seems highly unlikely.
I had a 38 year career in headache medicine. In the height of that career, I was a headache consultant at Mayo Clinic in Rochester, MN. Dr. James Moren, headache specialist, had joined me about seven years ago with our shared dream of bringing compassionate, intelligent care to a very large and often neglected population of chronic headache sufferers in the Pacific Northwest.
I was diagnosed with Multiple Myeloma and associated renal failure in Jan, 2019. I had to reduce my hours to 1/2 time as I prepared to undergo a bone marrow transplant. Dr. Moren increased his work-load to make up for my absence. It was my ambition and plan to fight hard to recover from the transplant and to return to work after six months. Just before my return, the hospital had a change in its administration. Because of my illness, they saw me as no longer valuable to the hospital. The hospital therefore eliminated my position and the clinic. Closing the headache clinic was also not Dr. Moren’s ambition. We both wanted to work well into our seventies, as there are no other places for these patients to go.
We attempted to create a new clinic in Bellingham. On the threshold of starting that clinic, COVID hit. I had to go back into quarantine and Dr. Moren continued trying to create this new entity. However, because of the complexities of medical business, the hope of creating this clinic was thwarted (prohibitively expensive).
I hope the best for all of our patients and that you can find good care in our unfortunate absence.
Other: Don’t you know it’s rude to bring up politics in a public place. How hateful.
One: Donald Trump is a habitual liar.
Other: You say that because you are a liberal snowflake.
One: Donald Trump is a habitual liar.
Other: So, you are into that socialist, communist agenda. It’s destroying our country right before your eyes. You are a sheep and the wool is being pulled over your eyes.
One: Donald Trump is a habitual liar.
Other: You know you hurt me when you say that. Not only me, but your entire family. The family that raised and nurtured you, you’re turning your back on for the sake of your communists friends.
One: Donald Trump is a habitual liar.
Other: He is the one who stands for Christians. He’s our bulwark and protector of our way of life. How can you not like him? What’s wrong with you?
One: Donald Trump is a habitual liar.
Other: You are the liar. He’s a good man. I talked to my pastor, and he says you can’t be a real Christian if you don’t see that Donald Trump is standing up for us. No other president has stood up for the Christian agenda like him. Donald doesn’t want us killing babies or marrying our own gender. He’s a good man. A God fearing man.
One: Donald Trump is a habitual liar.
Other: You have really gone to the dogs. You are a socialist, communist; you don’t love your country or the country you grew up in. You want to tax everyone to death. Have a government that spends like crazy. How do you run a nation like, except run it into the ground? I bet you even hate the flag. I bet you don’t stand up for the national anthem anymore like the rest of the communists. You’re one of those black-loving commies. You’re no longer a Christian, in my opinion. You’re the one who brought up all this political stuff. People like you divide this country.
One: Donald Trump is a habitual liar.
Commentary:I don’t normally do this, but due to the overwhelming response of this post, I feel that I must come back to explain the point. No, this is not literal. No, no one said these word to me and I’m not claiming they did. This is satire and the point I was trying to make is that you can no longer make an obvious observation without it getting woven into some great political narrative. One, above, is simply stating the obvious, Donald Trump has been well-known for lying his entire life. It is clear that lying is dangerous. One said nothing about wanting America to be socialist and etc. If you are a Trump supporter and that offends you, let me make some other obvious statements and see if that bothers you. Joe Biden seems past his prime. Bill Clinton (and of course Trump) was an adulterer. Are you okay with those? I bet you are. But if you skin crawls and you pulse rises with any suggestion that Donald Trump is not, like Mary Poppins, “Perfect in each and every way,” then you may be in a Trump cultand this is no longer a political issue even for you.
I will try not to be redundant but I like to look at the philosophical presuppositions that prop up any position. I am accused of “overthinking” some things. But history is a great well from which we draw understanding of our present state.
First I will state the problem. We now have a vaccine for COVID. This is a godsend. A scientific miracle. The only way out of this pandemic is; a) we all live in a real bubble with no contact with other people (not reasonable), b) allow a natural “herd immunity.” This would mean up to fifty million people dead and many more with life time of consequences, not to mention the complete breakdown of our healthcare system, or c) vaccinations to reach herd immunity without the great suffering.
However, as many as 30% of the population says they will not get vaccinated. In the black community, where there is more distrust of the “white man’s medical system” it is more than 50%. I cannot speak for everyone choosing not to get a vaccination, but I can speak to the big trends in history and the underlying foundations for this distrust. I realize that for the black community it is larger than this ( see:Tuskegee Experiment).
As I’ve mentioned before, western civilization had a strong dualistic influence from Greek philosophers such as Plato. The Christian church adopted this view. In this view, there are two realities, the seen and the unseen. In that system, they adopted the idea that only the unseen has value. The seen, including all of nature, had no intrinsic value. Nature was there only for mankind to exploit. Men have souls (unseen) thus have value and nature did not. Some have told me that Celtic Christianity was the exception to this low view of nature. I hope so.
For seventeen hundred years this was the dominant view of western civilization. Then, Jean Jacque Rousseau and some of his contemporaries rebelled against this idea. They believed that nature in its raw form was good, but men contaminated it with their interference. It was the opposite of the Midas touch, that everything humans touch turn to crap.
This philosophical pendulum swung in the opposite direction from putting nature down, to making all things “natural” better than the artificial (meaning here where humans manipulate nature). It is now a profoundly common belief in our western thinking. As an exercise I simply ask you, which is better natural or artificial? Most will say natural. Second exercise, go into any grocery store and count how many times you see the word “nature” or “natural.” The label “Natural” sells, because people believe its better. The only things that exist are nature or humans manipulating nature. People don’t create a new substance that was not there before, in nature.
Those who are against vaccines usually have this mindset, that if it is an artificial herd immunity, it is inferior to natural herd immunity, maybe even dangerous.
But here is the truth. It does not matter if you are an atheist or a Christian (I won’t mention other religious views for the sake of being concise), nature has wonderful things and harmful things. It gives us a fresh oranges (although the big beautiful oranges that we have now are the results of artificial breeding by humans for hundreds of years), but nature also gives us poisons, toxins, cancer, and many other things, like viruses. The human immune system is excellent, but imperfect. I don’t understand where Christians get this idea of “I depend on the immune system that God gave me.” It is a fundamental doctrine of Christianity that this world is imperfect (The Fall, is the term that they use.) But in the case of our bodies and immune system, somehow we are not fallen creatures?
Before the invention of modern, evidence-based medicine, the life expectancy for humans was around 28 years, and those years full of suffering. Most of those deaths were from infectious diseases. It is the “artificial” or humans manipulating the good attributes of nature making them better, that has increased the life expectancy to almost 80 and with far less suffering.
Now don’t get me wrong. In the grand scheme of things, humans have done irreparable damage to nature. Deforestation, fracking, spoiling of water, climate change, and the list goes on and on. These are complete moral failures. Humans, when left to their own devices, often do more harm than good.
To get into specifics, the COVID vaccines is using new technology, RNA-based, that made it quicker to develop, but not less safe. These are probably safer than previous vaccines, by a long shot. I am unaware of any vaccine in history being pulled from the market after long term side effects were discovered. These new vaccines should be even safer. The risk of death and long term harm of having COVID is tens of thousands times more likely than with a vaccine.
If you have a vaccine phobia, I will mention that I’ve personally had 21 vaccines in the past 90 days and am scheduled to have 5 more next week. I’ve been getting 7 at a time because my childhood vaccines were erased by my bone marrow transplant. I got these vaccines and I’m in poor health due to my cancer. But my side effects have been limited (typical). It appears that those who know the most above vaccines, trust them the most.
I have read volumes of information sent to me by anti-vaxxers. None of it has credibility from the research. Much of it supported by baseless conspiracy theories. I have though held a child as he died from tetanus on the border of Pakistan and Afghanistan. It was a horrible death. I’ve seen the consequence of polio and measles. The position of being an anti-vaxxer is the luxury belief of affluent societies.
I want to pivot here and talk about evidence-based and “natural” medicine as a tangential topic. I will try to be fair, looking at the positives and negatives of each. I will make that a part II that you can read if you’re interested.
As a resident of Anacortes it is a holiday obligation to watch the classic, Rudolph the Red-Nosed Reindeer. The reason is, the beloved narrator/snowman was voiced by our local resident, Burl Ives. He passed away a number of years ago, his wife, Dorothy in 2016. His home was sold just about three years ago.
My son painted the interior of Dorothy’s house. Tyler asked, “Who’s the wooden bust?” She said, “My late husband, Burl Ives.” Tyler said, “Never heard of him.” But he loved the movie about Rudolph when he was a kid.
I watched it for the forthiet time (at least) the other night. I was struck again by the Island of Misfit Toys. I will not be the first to draw lessons from the movie. Mine, this time, is how blessed the misfits really are.
Rudolph: The misfit due to a blatant physical deformity.
Rudolph had a nose that lit up like a lightbulb. No other reindeers did. Included in this category are the people born with some physical characteristic that is the first thing that people see. Do you have a missing leg, deafness, paralysis, cerebral palsy, or some mental defect? But there are others that are not as blatant, but dominate someone’s life. A tendency toward obesity . . . or being too skinny. A problem with your personality, such as the spectrum disorder (see the Queen’s Gambit), where you don’t understand the rules of social engagement. Being too tall, or too short.
I was twelve years old and sitting in my pediatrician’s office, when I heard the bad news. Based on growth charts, he estimated I would be six-foot and four inches tall. I cried on the way home. I played basketball and I wanted to be seven-foot tall. I didn’t understand genetics at the time, thinking I could grow taller by not smoking and drinking lots of milk. My tears would have turned to frank depression if I had known that I would never grow again, not even a quarter of an inch after that day.
I had a friend once, Tom, who was six-foot and eleven inches tall. His brother seven foot. I envied him. Then one day, while we were in a mall, just having watched a movie, he confined to me that the envied me. He hated being a freak. He said that not one item of clothing in the whole mall would fit him. Beds don’t fit him. Girlfriends didn’t fit him. Cars and airplanes didn’t fit him. While he loved sports, he never played basketball out of pure rebellion. This was Kentucky, where your worth was defined by your ability to play basketball. All tall boys were expected to play. Tom hated his life.
You can also include those who have acquired a physical trait that is remarkable, something that defines them. Accidents that took legs or arms. Severe, disabling pain. Reactive depression or anxiety. PTSD.
You can also include things like aging. We live in a society that values the young, especially the thin, muscular with thick hair. If we are lucky we will live long enough to be old. We will be seen as the old man or old woman. Our society doesn’t value age.
A physical diagnosis can also define us. Heart disease. Lupus, Multiple Sclerosis, diabetes . . . or cancer. You become known as the person with x disease, not a real person anymore.
God bless the Rudolphs of this world.
Hermey The Dentist Elf: Those who do not conform to expectations.
Hermey didn’t want to make toys. He wanted to be a dentist. But, all elves make toys at the North Pole don’t they? He faced immense pressure to conform.
Have your ever made choices that take you against the tide of conformity? It could be, like Hermey, a career choice. It could be a choice of who you love or marry. It could be one or more of a thousand factors that fly in the face of social pressure. That pressure could be trying to mold you into what it says is a good American, a good Christian, or a good person. The pressure could be immense and painful, yet you decide to be true to yourself . . . not a phony.
God bless the non-conformists.
Dolly: The Rejected.
Do you know why Dolly ended up on the Island of Misfit Toys? She had no physical defects. She had made no choices that contradicted society’s expectations. Simply, Dolly was rejected by the girl that owned her.
Have you ever been rejected? Rarely, a child is rejected by their parents and put up for adoption. More commonly, a father or mother walks out of their lives. Sometimes, it is the lover, husband, or wife that finds hope in someone else, leaving you alone. Even more often it is being rejected by a friend, a school, or employer.
God bless the rejected.
The Island of Misfit Toys reminds me of Jesus’ sermon on the Mount. This is what he would have preached if he had visited the island.
3 “You’re blessed when you’re at the end of your rope. With less of you there is more of God and his rule.
4 “You’re blessed when you feel you’ve lost what is most dear to you. Only then can you be embraced by the One most dear to you.
5 “You’re blessed when you’re content with just who you are—no more, no less. That’s the moment you find yourselves proud owners of everything that can’t be bought.
6 “You’re blessed when you’ve worked up a good appetite for God. He’s food and drink in the best meal you’ll ever eat.
7 “You’re blessed when you care. At the moment of being ‘care-full,’ you find yourselves cared for.
8 “You’re blessed when you get your inside world—your mind and heart—put right. Then you can see God in the outside world.
9 “You’re blessed when you can show people how to cooperate instead of compete or fight. That’s when you discover who you really are, and your place in God’s family.
10 “You’re blessed when your commitment to God provokes persecution. The persecution drives you even deeper into God’s kingdom.
11-12 “Not only that—count yourselves blessed every time people put you down or throw you out or speak lies about you to discredit me. What it means is that the truth is too close for comfort and they are uncomfortable. You can be glad when that happens—give a cheer, even!—for though they don’t like it, I do! And all heaven applauds. And know that you are in good company. My prophets and witnesses have always gotten into this kind of trouble.
Merry Christmas to all of you who don’t fit into the ideal. To those who are not Kardashians, Brad Pitts, or LeBron James. Most of us are misfits in one way or another. God bless us all.
Well, I said I would focus on my book and not write here for at least a month. However, after spending 3 hours, in my sauna, working on my book each morning, I usually go outside and work on chores. But it has been raining. The Pacific Northwest monsoons. are here. So I end up inside, thinking and . . . well writing more.
I am reading four books right now. I’ve been working on The Stones of Summer (novel) for a year and that book takes at least a year. I am working hardest on How Dante Can Save Your Life (non fiction) and am 3/4 the way through. I may write more about it when I’m done.
I am also getting ready to read a George MacDonald book (novel) and a C.S. Lewis book about George MacDonald (nonfiction).
I will say that so far How Dante Can Save Your Life will not go down as my favorite book. For one, to me the writing is plain. I say that after reading many spectacular books over the past year. It is odd for me to say that because the author, Rod Dreher is a professional writer, having a degree in journalism and spending a career in writing for newspapers and magazines. Now he has fared better than me in that he has landed book deals with major publishing houses like Simon and Schuster. His books have sold a little better than mine and his reviews have been about the same as my Ristretto Rain. As I read many of his reviews, they were mostly 5 star and the poor reviews seem to pertain to his mis-representation of Dante’s work. It has been a while since I’ve read the Divine Comedy. So my criticism of his work seems isolated to me.
My issue with him, besides the plain writing, is him being self-reproachful from a Christian perspective. To solve his personal problems he follows Dante into a deeper and deeper place of looking how horrible the sins of his life are. Very medieval. I will say more about that later when I can be fair.
But the one thing that has caught my attention is that in the story of his life, his younger sister, Ruthie, develops lung cancer (never smoked, took very good care of herself) at age 40 and died.
During the 19 months between her diagnosis and death, the author talked about how wonderful she was handling the diagnosis. No self-pity, seeming joyful, and involved with her husband and three daughters as if nothing was wrong.
But now, in a later chapter, he reveals something more about her. She was living above her cancer so well because she believed, 100%, that God had promised to heal her. Her faith was unshaken. She would not succumb. She would not die.
Now, at first glance, you would say that this was a good thing. Faith like stone in the times of trial. But she was so convinced that even when she started to go downhill, losing weight, becoming frail, her faith was not shaken. Then she suddenly died. But she was so much in denial of what was happening to her, she made no plans. She said no goodbyes. Her husband and three daughters had no post-Ruthie plans. They had no financial plans for her death.
This has awaken within me, once more, the thoughts about how we face death and dying. Personally, I hate the thoughts of death. It is often a taboo topic and to talk about it makes many people uncomfortable. I remember when I first came out of the hospital, some people would not make eye contact with me and talk around me as if I were already dead. It is because our society prepares us so poorly for relating to the topic of death and dying. Most people, and that included me before I was diagnosed, see death as abstract, with the hope that it only comes when we are 99 years old and we die peacefully in our sleep.
To me death is a tragedy. From a Christian perspective, it is part of the dark fall of the universe. It was not God’s intention. So, within that model, we have the freedom to hate death. To weep as Jesus did at the tomb of his friend, Lazarus. To the atheist, it is the failure of evolution to conquer all the ills of nature, thus there is real suffering and death without a particular meaning.
I think our approach to death is unhealthy. I doubt if any society approaches it correctly. There are extremes, like in the case of Ruthie where there is a total denial. Then there are those who think about their death all the time and it robs them of the joys of life.
I won’t go through the story again, but to summarize, I first had to confront my own death on January 11th, 2018. I was in ICU and the nephrologist told me that she was trying her best to save me (extremely high potassium 7.0 from renal failure) but she was not sure she could. The treatments were not working and I was at high risk of heart failure due to the elevated potassium. She told me that I had to come to grips with my possible immediate death. I will just say, it was profoundly painful and sad for me, but I did it. My perspective changed on a dime. Many of you have had near death experiences I am sure.
In many ways, I have not left the honest mindset of the fragility of life. For me, everything I do I have to hope for being on earth for another 20 years . . . or suddenly declining and dying in a month or so. I prepare for both.
So, I think I’ve found the balance of profoundly enjoying this world, which I see as God making, yet, knowing that I could be gone tomorrow. All of you could be gone tomorrow. Are you ready for that? It is a hard balance to keep. You don’t have to hate this world to make death more palatable either. I think too many older people are taught to live, mentally, in Heaven as a way to cope with their approaching death.
Most Christians, especially American Christians, have a concept of Heaven based on extra-Biblical traditions. This is a good summary of that false narrative.
Everyone who has a chronic cancer, and many other illnesses, are faced with the roller coaster ride of recurrent lab tests that tell you if you are living or dying. I was having the blood tests daily, then weekly, and now monthly. So the tension only comes once a month. I think I handle it well. I have to or go nuts. I don’t click on my results until I’m fully awake and have had my coffee. This past Sunday I had one lab result that could indicate my cancer is growing. I had about 6 more tests that would fully paint the picture. Those came in this morning okay. But this is typical and now routine.
I have had people suggest that I don’t have enough faith, otherwise I would be healed or that I would only be thinking about Heaven (the traditional, extra-Biblical image of Heaven). It is a shameful thing to say to anyone. Ruthie had perfect faith and died. I’ve seen others who had perfect faith and died. I think that kind of magical thinking is not healthy. But living with the knowledge that death could come, but the hope that it does not, is the balance. But death as a concept has too much power, too much stigma. No one leaves earth alive. It is time to declare the death of death as that nasty unthinkable thing.
A while back a friend asked me why I don’t base my novels on the colorful world of Appalachia, which I grew up in. My answer is, and remains complex. At the time I said, somewhat as a joke, that it has already been covered in J.D. Vance’s autobiographical book, Hillbilly Elegy. Another reason is that I would have to write honestly (like Vance did) even if it were fiction and that would create a lot of personal problems for me. I’ve already offended huge tribes of people by what I’ve written here. Now the book has been made into a movie. While I read the book, I have not viewed the film yet, and not sure I will. I did see that Vance helped Ron Howard direct it so the two must be similar. If I read the book, wouldn’t watching the movie be just like re-reading the book?
Because I am from Appalachia and (somewhat related) was an evangelical for three decades, most of my family and childhood friends are politically conservative. Some so far to the right that it would make Steve Bannon blush. So, out of respect to them, I view right wing media outlets daily to hear the same information that they hear. I also view more dependable (when it comes to truth) news outlets such as NPR and AP Wire so I know what is going on in the real world. Personally, I am tired of red Vs blue, conservative Vs liberal labeling. I don’t think it is helpful any more, only divisive. I have no political party preference.
Since the release of the film Hillbilly Elegy, there has been a lot of criticism on the right that it stereotypes the white folks of Appalachia as lazy and dysfunctional. Hmm, there is so much to say about that. I will simply say that those same right wing sites, including the more mainstream Fox News, often paints the black community in similar broad strokes, but that doesn’t appear to make them feel the same ill ease.
Growing up in that area, we were super sensitive about such stereotypes. We didn’t even take fondly to the Beverly Hillbillies show because my mom said it made us look bad. Oddly, having just watched the Beverly Hillbillies pilot for the first time a couple of weeks ago, I realized that they were not from Appalachia at all but from the Ozarks in East Oklahoma. Makes sense now as we had no oil in East Tennessee and Jed Clampett did not discover coal on his homestead.
I enjoyed the Hillbilly Elegy book so much because it was familiar, in a creepy way. No, my family were not as poor or dysfunctional as Vance’s, but it was all around me. I knew plenty of people, some relatives, who could have fit in his book. As a PA student in Eastern Kentucky (for a year) I witnessed it daily.
But here’s the caveat. Every community on the planet has their ills . . . and their wonderful culture. It is true for the poor white folks in Appalachia. It is true for Rich white, Asian, or whatever in Beverly Hills . . . or Seul. But it appears that each community tries their darndest to hide their dirt. If you want to make enemies quickly, then throw back the rug, which is covering that dirt. The racists only show the dirt of a cultures they don’t like, throwing a rug over their glory.
Personally, I like dirt . . . sort of like Pig-Pin. It isn’t because I like gossip or gloat in others’ misery. It is because I love truth and honesty. I have dirt. When a culture covers its ills, it begins to live in a magical, artificial world. I dislike phonies. When people say they miss the “good old days,” it is because their memory of those days was magical, not realistic. If you read the New Testament without the modern American filters you would see that Jesus disliked phonies the most. I’ve been a phony before and am still I’m sure. I think it would be a better world if we were honest about our humanness, both the ills and the glories. If you think that you should not show the dark side of poor white people in Appalachia unless you also show their bright side (and Vance does show a lot of the good side, if you just look for it), then the same is true for the poor inner city blacks, or Muslims, or whoever.
But the actors are so talented, Glenn Close, Amy Adams . . . hmm, I think I must watch the film.
A young orphan who, with her red hair, could easily be transposed with Annie without missing a beat. The dreaded orphanage in this story was as bad as Annie’s without the frolicsome nature but where tranquilizers were dished out like Reeses Pieces in an ET movie. Got to subdue the noisy children. God’s will. This is the backdrop of the novel The Queen’s Gambit and now Netflix mini series by the same name.
I finished the series last night but have not read the book, so I don’t know what exactly makes the protagonist, Beth Harmon, tick. It could be childhood traumas as she certainly had her share of them. But more likely, I suspect she suffers from a genetically-based disorder, a point in the spectrum disorder family of personality traits. Because she is fictional, the answer lies within the creative mind of the–now deceased–author, Walter Tevis.
Beth is extremely smart. A child prodigy, at least in chess. But it appears that complex mathematical computations come as second nature to her as well. But like in spectrum disorders she is socially challenged, often choosing chemicals over people for comfort. This is a good film and I suspect it is a good novel. But I want to use the premise of the story as a springboard about a much more in-depth discussion on social awkwardness. We are all on a spectrum when it comes with the ability to interact and to create relationships with other human beings. Some people have hundreds of friends and are always the center of the party, while others live lonely lives and feel perplexed and inadequate in the skills of building relationships and maintaining them. While this skill can be learn, or unlearned as in the case of trauma, often it appears that genetics play an important role too.
At a casual glance, it might appear that the ability to create relationships cannot be genetic as anyone can learn how to if they only try. Right? However, it may be more like trying to load a complex computer program from 2020 on a 1984 Macintosh. While the software may be clear, logical, and well written, the hardware of the old Mac cannot accommodate it. The circuits are simply not there.
I write this as someone who has long suffered from a modest level of social awkwardness. However, this article is not meant to be about my small world but to try and resonate with many others who have suffered as much or much worse. I suspect most or all people have socially awkward moments in their lives, especially when entering a new culture (such as another country) or a new sub-culture, (such as a new workplace). I share these things with good intentions because the socially awkward person invariably must wrestle with a low self-esteem. “What’s wrong with me? Why doesn’t anyone like me? Am I bad?” Those are the questions that meander through the minds of the friendless, although it could be at the subliminal level.
Some of my readers here say they like articles where I talk candidly about things that intersect with their personal lives, but which they would never speak about outside their own heads. If cancer has any impact on my writing here, it is being more bold, more candid, trying to speak for those who can’t.
I’m not sure when I realized that something was wrong with me . . . genetically. I think it was after I had kids and saw some of my children suffer with some of the same traits. I did not teach them this social awkwardness. Denise is far more socially skilled than I am and has always had an abundance of friends, so I do think it is something inherent. My same children share my scientific curiosity.
In The Queen’s Gambit, Beth, age nine, observes a janitor playing chess in the basement of her orphanage. She is intrigued with the game but knows nothing of the rules. This, at least my interpretation, is a metaphor of living with a social awkwardness, including those with variations of the spectrum disorders. However, Beth learns the rules of chess. She certainly does, maybe better than anyone else in the world . . . but social relationships remain a challenge for her.
This is how it feels to be so blessed with this configuration of seeing the physical universe so clearly (string theory makes sense to most of us on this spectrum) but failing to have the fundamental understanding of the rules of personal interactions. The rules feel unlearnable to us, despite our greatest efforts. We are the 1984 Mac.
I’ve decided, with trepidations, to share a personal illustration. I had hundreds to choose from. My hesitation is that I’m afraid these stories could be misconstrued as poor Mike being mistreated. But that is not the point I wish to make. I am 100% convinced that the problem in these situations is due to us socially awkward people’s perspectives, not then being socially shunned. It has to be. As one friend of mine used to say, “If you experience a string of failures across several situations, the one common denominator is you.” He wasn’t directing this at me, personally, but at people in general.
It Takes a Village
One of the situations that leaves me scratching my head until this day is a personal story where I wanted to be part of a group that led my church’s adoption of a remote North African village. The Sunday that I visited my church for the first time, some six or seven years ago, it was announced that the church was going to adopt this village. As someone who had a passion for working in humanitarian work the developing world, this really stood out to me. That’s why I went to medical school. It was my career choice, although thwarted. I was sure I could be part of the team that was coordinating this adoption since I had lived in North Africa for two years, traveled and worked with public health programs in several developing countries, could speak basic Arabic, the language of this village as well as read their script, and I was very familiar with Islam, the religion of the village. The perfect fit, though it seemed. My decision to attend this church was based on being part of that team.
I attended all the organizational meetings about this adoption of this village. At each meeting I made the point of talking to one of the team members telling them how badly I wanted to be part of this team. How do I join? Shrug shoulders. I never heard from anyone.
As a member of this church, we are asked annually to fill out a card describing our interests, places we wanted to serve. I put down that I wanted to be part of this village adoption team each of the first four years. I continued speaking to the team members about my desire to join them. I waited, I heard nothing. I sent emails to the pastor telling of my passion for this village project. She must receive a hundred crank emails per week. I came close to buying my own plane ticket and going to visit this village (a logistical nightmare because it was so remote). It was a passion of mine.
What were the rules? How do you become part of this team? I asked that question over and over without a clear answer. I was lost. I realize that I was new to this church and no one knew me.
Months passed, then a year and I didn’t hear back. As a last ditch effort, I decided to crash one of the team’s private planning meetings. It was profoundly awkward. One of the members, appearing to be angry, turned to me and asked, “Why are YOU here? You weren’t invited.” I said once more, “I just want to be part of this team.” An apparent social blunder on my part. On the way out, the group leader kindly invited me to meet me for coffee at Starbucks to discuss the situation. They were indeed looking for new members.
When we met, I told him again of my passion to be part of that group. I told him of all my qualifications, ex-missionary in North Africa, speaking Arabic, degree in medicine, working in establishing clinics in the developing world, taking students to the developing work, yada yada yada. He seemed impressed. I was excited, knowing that it would not be long before I would be invited. I was really excited.
But then came the email the following week. I must have read it fifty times, my eyes squinty and my jaw dropped. I felt like Beth in the story when she first sat down at a chess table and she looked up at the man playing and said with strain in her voice, “I don’t know the rules.” The email was from the group leader, “I discussed your interest and qualifications with the team at our meeting last night. There was a consensus that you don’t have the qualifications we’re looking for.” Loved to have been a fly on that wall. Painful. To the point, that I seriously was reconsidering my attending this church. Not out of bitterness, but because I wanted to be in a place where my talents could be used.
The people in this group are good people, whom I respect and I’m certain they had a logical reason for rejecting me. That’s what makes this even harder. They are smart, kind, and thoughtful. They had to have a good reason. There are social rules that I don’t even begin to understand. Many other people came to our church and were invited to be part of this village group right away. They knew the rules for getting in and I did not.
Denise suggested that it was because I was not a personal friend with anyone in the group, that friends invite friends, not strangers. Or possibly, I approached this in the wrong way, too aggressively. What’s the right way? I don’t understand.
Maybe Denise is right. But this is how we who suffer from this awkwardness feel and and the solution is on us. We must try our best to learn the rules and to program as much of the software that our hardware can endure.
Someday, if someone confined in me that I smell horribly, like a mixture of body odor and a rotten skunk, or maybe a sewer, then all of this would finally make sense. Damn sense. I often sniff my pits and find nothing. Is it my breath? But this is not the reality we have been dealt. When we socially awkward people enter a room full of strangers at a party, we start with the (false) premise that everyone there hates us. We work from that point. The truth is, we are not even on their radar and they certain don’t hate us.
Are you relating to any of these things? Have you ever wondered why you were rejected, not invited, etc? Ever been rejected from a job for which you thought you were well qualified for? If not, consider yourself blessed.
So, for those like me (or worse), we must remember that it really is on us. Beth, in the story starts to figure that out. But it is not because we are bad people. It is like many things, living in an imperfect world where shit happens. We must avoid blaming people as the world seems unfair to us, but trying our best to carry on in peace, driving around the potholes of life.
Personally, I want to work on listening. Professionally I was a listener for 38 years, but I’m not sure if I have allowed that to carry over to my personal life. I created Winston, the protagonist in Ristretto Rain, as an example of the perfect listener, a model for me to emulate. Listening is, or at least should be, the building blocks to relationships. Relationships the pieces of the grand chess game of life.
Some day if I were to meet God face to face I would ask him to explain dark energy and matter. The relationship between gravity and time. I have some theories on those. But also, the rules of personal engagement. With that, I am completely clueless.
Happy Thanksgiving. I hope it is a lonely one, meaning you’re being safe.
P.S. I know I have written here a lot lately, but tomorrow I return to Retribution and will not come up for air for a month. I can tell people are still reading the blogs, so I will keep writing.
Again, 80% of Americans believe that miracles are common now. Why would I be so foolish to challenge that belief? I’m not. As I said previously, I’m not here to quarrel with anyone’s belief system, if that belief system includes common miracles. But, as the title of this series implies, sometimes there are problems with miracles and I want to point out those areas of danger, especially for those who within the deep, private area of their soul, are skeptical about miracles. Again, my view isn’t a dogma or any theological position gathered from particular passages in the Bible. It is simply my personal observation of reality over a long period of time and with this view, I do not voice certitude.
Problem # 1. Last time I tried to stake out last time, is the Christian who has an epiphany that the miracles they have witnessed . . . are not real. They therefore chuck all of Christianity as a fraud. I’ve been there. I know a lot of people who did just that and that exodus concerns me because I think it is done over false pretenses. The pretense is that if God is there, if Christianity is true, then common miracles must be part of that faith.
Problem #2. Often, when I’ve tried to have this discussion in person, the person assumes that I question miracles because my God is too small, incapable of doing them. This second problem is almost the opposite of that accusation. It is the believers who think God works in sleight of hand or “quiet miracles” who could tend to have a small God. I will try to explain.
When you hear of miracles today, they are almost exclusively these “quiet miracles.” Things which are clearly within the realm of natural explanation. “I ran into Jim at the hardware store. I had been praying for the opportunity to talk to him.” “God gave me a parking spot near the grocery store entrance.” If we move up the list toward the spectacular someone might say, “God cured me of my breast cancer.” Then, if you look at that form of breast cancer, it was highly curable in general. So this is clearly within the realm of the natural. Even if only 10% were cured and you were one of those, that is still within the realm of the natural course. Of course you can still be very thankful, thankful for how God brought the treatment about. How you body fought and etc.
If I were still an evangelical I would stand up in church and share how God has put my multiple myeloma in partial remission. A miracle! Don’t get me wrong, I am profoundly grateful to be in partial remission after my bone marrow transplant. However, a bone marrow transplant often renders the patient in complete remission. Many of my co-patients in the transplant program achieved complete remission. I prayed my heart out for months for a complete remission and had faith that would happen. Many of these remission patients I sensed from casual observations, were not Christians or praying people (impossible for me to judge) but fared much better than me. So, my outcome was inferior to the typical. A miracle? If not a miracle, and if I were a believer in common miracles I would be left with the emotional–possibly unspoken–feeling that God had betrayed me.
It is rare that a Christian claims a spectacular miracle, something clearly outside of a natural explanation. Virtually all of those turned out to be false. For example, I visited a Christian Reformed Church in Marquette, Michigan. As the service opened, an elder testified that he is a shortwave radio or ham operator. He said that he was talking to his Christian brothers in India. They told him that Jesus had come back there some time ago and was walking around raising hundreds of people from the dead, some who had died many years previously. While hundreds had been raised, according to him, the liberal media in America was blocking the story from making the news. Of course this did not happen and that scenario is not even Biblical. I was so disappointed that the pastor did not refute this story that I never went back to this church.
We had a member of another church, which I did attend for years, who testified in service that her very grave lung cancer had been completely healed. The problem with that is that I knew her as a patient and that was frankly not true. She stopped her chemotherapy saying God had healed her . . . only to succumb to her terrible disease and die a few weeks later, sending shock waves through the church.
People are superstitious. That’s why some claim they saw the image of Jesus or Mary in the burn marks on their breakfast toast. Or that a sunbeam created the shape of a cross (just asked the Roman emperor Constantine, he saw the Latin Chi Ro in a sunbeam).
I spoke in “tongues” as did many did in our group when I was about 20 years old. This was proof to us that God was real. But it was gibberish. I could easily reproduce that today. I didn’t suddenly become fluent in a language which I did not study. Psychology explains how vulnerable we all are to self-deception. The Bible concurs, such as in Jeremiah 17:9 ” The heart (or psyche) is deceitful above all things and beyond cure. Who can understand it?”
But to make this clear how believing in common quiet or sleight of hand miracles can indicate a concept of a small God, I will share another story. I think this story made the final cut of my book, Butterflies in the Belfry.
When I was 20 and living in a dorm, a guy on my hall invited me to a “Full Gospel” meeting at a house off campus. I think the two of us were the only students as the rest were more middle aged. The meeting was held in a simple single story bungalow about a mile walk. When we arrived, the little house was packed with about 60 people, spilling over from the living room into the dinning room and kitchen. One man, short and balding with a booming voice was the apparent leader. He told stories of amazing miracles that had happened that week. Then he opened up the meeting for a “healing service.”
This pastor, Will, asked for people to tell of their medical problems. Whatever the medical problem was, bad back, headaches, emphysema, or diabetes, it didn’t matter, he would diagnose each one as being caused by their spine being out of alignment. Had been hanging out with chiropractors? He then claimed that mal-alignment was caused by one leg being shorter than another. He would then call the person to the front, sit them on a chair facing the crowd, pray over them and start his “act of healing.” His act of healing was a simple sleight of hand trick we use to do in elementary school. You squat in front of the person and hold up their legs with your hand behind their calves. Then, as people watched, you simply pushed one hand up toward the knee, pushing the pants with it to create a growing space between the helm of pants and their shoe. In other words as more and more of the sock was exposed, it gave the illusion the leg was growing. It was so silly, that I literally thought it was a joke. I was the only one. The rest of the crowd began reacting as if he had just raised up a dead person. They were screaming and crying and praising Jesus.
Meanwhile, I was dumbfounded. So cheesy. But this went on for an hour. I think because he saw the look of disgust on my face that he had the crowd grab me and drag me to the front. He diagnosed me as having serious back trouble. I said aloud, “I do not have back trouble.” That comment angered him. He slammed me down in his healing chair and started to do the same trick on me. I resisted. I stopped him from sliding his hand with my pants up my calve. He became more angry, stood up, turned around and told the crowd of strangers, “God has spoken to me. He cannot heal this young man because his heart is dark and full of sin.” The crowd looked at me with scowls written across 60 faces.
But there was a woman in the crowd who had an above the knee amputation on the right side due to her diabetes. I noticed that he never even made eye contact with her. So, if we were witnessing real supernatural miracles, you would think she would be the first in line. She needed to grow a whole leg. That would have been a real miracle. But the God there could do a sleight of hand trick but was too weak to grow a new leg.
As a footnote, my friend who invited me to this meeting and I caught Will in bed with his (married) mother a couple of months later. I think that is relevant to his character.
My point being, if you are convinced that God is doing these quiet things, finding your a parking spot, making it not rain on your picnic, or passing a test, but your God cannot do the really big ones, the obvious supernatural events, completely erasing cancer, raising a relative from the dead. Causing a crashed plane to reassemble and go back up into the sky and the passengers all healed instantly from their wounds, then that would make your God smaller.
So, if God is doing miracles commonly, and he is only doing the subtle things, he is not very big. It is like the movie Oh God starring John Denver and George Burns in 1977. When George Burns had to appear in court to prove he was God, first he did a card trick. A sleight of hand “miracle.” When that didn’t convince the judge, he disappeared. Although disappearing can be a sleight of hand trick, which magicians often pull off, in this case it was a supernatural miracle. If miracles are not common or even happening today, that leaves the possibility of a big God.
This brings me to the last point. I think this whole lust for miracles is based on a faulty metaphysical concept. I often talk about how the Greek concept of philosophical dualism, has had a profoundly negative influence on Christianity. In that paradigm, there are two realities. The seen world (nature) which is inferior or even evil and the unseen or spiritual world. Because of this thinking, the Christian dismisses things of the natural world as unspiritual (inferior) and the supernatural as far more important. In that world miracles are sexy.
But I see it profoundly differently. My Bible teaches that God created the entire 14 billion light year-wide universe out of nothing. That act alone is incredibly supernatural. Everything in the universe is precious. As Einstein said, “There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” This is what he is talking about. Yes, there are atheistic theories of the formation of the universe. But if you are a Christian then, like me, you would see that all of nature is a miracle, outside the possibility of nature alone . . . in other words, supernatural. Therefore it is not inferior to say that the doctor who created stem cell transplants (and got a Nobel Prize for that) is a miracle and my body working with the stem cell transplant is a miracle. I can be profoundly grateful to God without assuming that it has to be something new, outside the natural workings of the universe.
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” Albert Einstein
What I see on God’s heart and in Jesus’ sermons is a profound desire for truth. If we stake our lives on the belief of something that is a self-delusion (like Will’s healings), then it is harder to see the real God. But that’s just my perspective. Yes I do believe that God did supernatural miracles in history. He did it because of our unbelief. It appears that he did them rarely, spaced out with one every few hundred years. I’ve observed none in my lifetime, but I’m still open to seeing one before I die, but for miracles outside the grand miracle of the reality of the universe that God has called into being are not required.
Can I ask you to refrain from sending me personal emails that share your concerns for my soul, that I’m either going to hell, I’m not a good Christian, not a spiritual person, or am unorthodox. I’ve heard that all before and it only cause me hurt. If you don’t believe anything I’ve said, I have no qualms with that. Let’s still be friends. Happy Thanksgiving.
I know, a firestorm of posts these days. But soon I will be like the lone Apollo astronaut in the command module, going behind the moon and being in a communication blackout zone. By Sunday, so I hope, I will pick up my manuscript Retribution and start the rewrite. That will take at least a month. I am grateful for those who were my beta-readers and I will try to incorporate their observations.
I’ve come to fictional writing late in life. Is it too late? I don’t know. I don’t even know how long I will have on this side of the dirt. I do know that I am still highly motivated to learn and grow in my writing. But it is a bit like a man in his sixties deciding he wants to start a rock band. Yeah, it can be done, but not without a lot of work.
My first published article was in 1984. I was elated. But for the next thirty published articles, they were all in medical journals. Scientific writing is so different. It is factual. All telling. If you dare mention a human emotion, unless it is an article about emotions, the article would be dead in the water. For example, “We were happy with the resulting data we collected at week 12.” In scientific writing you try to emulate Spock as close as you can. Logical. I had a lot of compliments with my scientific writing.
I have always been a storyteller and I have a whole mental pantry stocked with stories that would love to come out. However, food staples don’t cook themselves. You have to know how to cook to make something paltible from that stock.
One of the ways that I’ve tried to hewn my writing talents in fiction is to read good novels. I’ve been reading one a week for the past four years. This is where I was getting confused. So of my favorite classical authors, Charles Dickens, Jules Verne, George MacDonald, did a lot of telling in their stories. Right now I’m reading Diana Gabaldon’s A Breath of Snow and Ashes. It is fantastic. Not much telling, no more than what’s necessary. Breathtaking in the narrative. She is a literary genius. I was surprised that she got her start in scientific writing. She made her switch at an early age of ca 41.
I was running into a problem with my writing, at least that’s what my editor was trying to tell me. I liked to tell not show. As I mentioned, scientific writing is all telling. But the other reason I was running into this problem was that the classical authors (Dickens, MacDonald, and Verne) used a lot of telling in their stories. Verne pauses his narratives often to give a scientific lecture about the subject matter. So, when I emulated some of those authors my editor really didn’t like it. “Show, don’t tell” is the buzz phrase around writing these days, or so it seems.
Thanks to several good teachers I was beginning to grasp this concept much better. Then I bought the book by the same title Show, Don’t Tell, and a proverbial light bulb went off. Reading so many classics was throwing me a curve ball because show, don’t tell is a modern concept in writing, at least the emphasis of it. It is a result of the video and film age. Now, to be successful you must write a novel like a movie. The reader must visualize the story in mental pictures. But that is a relatively new concept.
If you read my early manuscript of Ristretto Rain, you would see the contrast as compared to final copy. I told a lot in that first draft. Like Verne, and I had just read Twenty Thousand Leagues Under the Sea. I told a lot about the place, Rock Harbor. I had a long narrative about the geology of the and characters. My faithful early readers pointed out to me that manuscript was going to bomb with so much detail and “telling.”
I really want to focus on Retribution and raise my writing to a new level. At this stage it needs a lot of work. If I could come close to Gabaldon, I will nail it. If not, maybe I will start a boy’s band?